posted
I was appalled to learn that Dr. Tim Brooks, Lyme czar at Public Health England has been invited to be a speaker at the Lyme Disease Association/Columbia conference in USA later this year.
Dr. Brooks is our foremost Lyme Denialist here in the UK.
Heading up all Lyme serology testing from his lair at RIPL (the country's biowarfare research centre at Porton Down), Brooks has continued the policies of his predecessor Dr Sue O'Connell in following the CDC/IDSA approach to the letter, ensuring that there is ZERO recognition of chronic Lyme in Britain and ZERO help for children and adult sufferers.
In addition, under Brooks' regime even basic public health education is so appalling that GPs even in the most hyperendemic areas are unable recognise Lyme Disease symptoms and signs.
A report submitted by Dr Tim Brooks to the Health and Safety Executive in the UK was crammed full of fallacies and spoke about patients in highly offensive terms.
Brooks suggested that all those not meeting the extremely narrow criteria, based on CDC surveillance criteria, should be referred to the notorious psychiatrist Simon Wessely, whose theories that ME/CFS and Gulf War Syndrome were nothing but "illness behaviour" did so much harm to sufferers of those conditions.
Dr. Wessely's theories were directly responsible for an incident in which a 12 year old boy in the UK, suffering from severe weakness due to ME/CFS, was thrown into a swimming pool by "therapists" to "cure" his "psychological problem".
The boy sank and had to be rescued from drowning.
It is forbidden to do such things to prisoners of war under the Geneva Convention, yet because of Wessely an extremely ill child was forced to undergo this unspeakable act of torture.
This is the healthcare "professional" to whom Dr Brooks believes all chronic Lyme patients in Britain should be referred.
Dr Tim Brooks is no different from Allen Steere, Gary Wormser or Barbara Johnson in his approach. He is arguably even more extreme on some points.
It is absolutely inappropriate that he be invited to a Lyme Conference held to raise awareness and provide benefits to patients.
The only acceptable reason to invite Dr Brooks would be as part of a debate, where his deeply flawed approach could be directly exposed for the extreme harm it causes to patients. That is not the case in this conference, where he has been invited to address doctors on the subject of Lyme Disease in Britain.
Please let the Lyme Disease Association know of your concern at this highly inappropriate invitation by joining the dozens of others who have signed the petition below:
-------------------- Justice will be ours. Posts: 786 | From UK | Registered: Oct 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- It's alarming that this invitation was even extended in the first place. Thank you for bringing this important matter to our awareness.
I'd hope there might be some kind of misunderstanding or that the invitation might have been . . . gosh, (out of words) it's just so puzzling. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Thanks for bringing this to our attention.
Posts: 13116 | From San Francisco | Registered: May 2006
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
So many sick things going on. Ive been so stuck on how bad dx and tx is here i havent thought of other countries
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
Did you contact Pat Smith at LDA to let her know what you know? [Mods: If her name should be deleted, I will PM Eight[.
You would think that LDA would know the truth??!! But maybe not?? I can't make sense out of it. But definitely contact her, or whoever at LDA is involved in the speaker line-up.
It sounds like others should contact LDA, also. Arghhh! Thank you for catching this! Good grief, what is going on?
Posts: 3771 | From around | Registered: Mar 2008
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OptiMisTick
Frequent Contributor (1K+ posts)
Member # 399
posted
WHOA! Before anyone gets too revved up here, most of you are not aware of the requirements for nonprofits and most particularly with IRS tightening up since 2007 and Senator Grassley's campaign to professionalize nonprofits.
There is a certain amount of "balance" required in presentations as a condition of holding the nonprofit status.
Perhaps most of you commenting have not been to LDA conferences in the past.
These conferences have **always** highlighted a wide variety of perspectives.
Let's remember that a **SCIENTIFIC CONFERENCE** such as the LDA conferences have always been, since the first one at BARD College in 1999 (which I attended, the start of many) - A Scientific Conference would be pretty much a WIMPY conference if it did not present varied perspectives.
This is the basis for science - exchange of ideas, debate, the opportunity to present ideas to colleagues including those who don't think like us, and to have our ideas considered in return.
I say US as I am a degreed scientist too. As a scientist, I can tell you that it is NO FUN to always talk to people who think like you do.
And people who think like I do generally don't listen too well, sometimes the attitude is "been there, done that, got the tee shirt."
That's my attempt to inject levity here.
But seriously, one of the benefits of attending conferences with folks who don't think like you is the opportunity to influence them, to have them listen to the other speakers and give them food for thought, a basis for comparison, some perspectives which they had not thought of.
The various conferences have **ALWAYS** had people with conflicting viewpoints.
I remember two feisty presenters getting into a bit of a dustup over the pros and cons of the use of supplements and whether this actually fed Borrelia.
At one conference one of the speakers jumped all over the dental slides of another speaker.
There were other controversial speakers throughout the history of these conferences. THIS IS A GOOD THING!
There have been conferences where IDSA members spoke.
Where CDC honchos spoke or even engaged in panel discussion.
This is all healthy. Remember what country we live in folks, This is the USA. We have Academic freedom here, not just personal freedom. Diversity of opinion is required!!
IF there is someone who things very divergently from what you all might wish, how better to influence them or change their mind than to get them to a conference where they have the opportunity to interact with those who think differently. And to listen to them as they speak, and question them afterward.
All in all, this is considered very healthy in the scientific community.
IT IS EXPECTED that there will be a wide variety of viewpoints at such conferences.
I know our community. I think in the long run, our community would find it interesting to hear just exactly why this speaker thinks a certain way, to respectfully question, and to perhaps continue conversation afterward at the reception or even or lunches.
Balance in perspectives is always required when an educational conference is presented, also, according to IRS rules. A variety of viewpoints is the rule.
So let's not get too carried away. There are reasons for this speaker being invited and these reasons are legitimate, required, and a darned good idea.
How can we ever change minds when we do not have the opportunity to even be exposed to these individuals.
Anyway, I guess as a scientist I am so used to this, and have run many conferences where I've booked diverse speakers, that I never even thought about it until I saw this post.
I look forward to hearing what our British colleague has to say and suggest our community think up some good questions for the Q and A period after.
Posts: 1338 | From Above the Clouds | Registered: Nov 2000
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posted
OK, I think that you dont quite realise just who Dr Brooks is and what he stands for, Optimistick.
The easiest way to judge this situation is to ask yourself whether the Lyme Disease Association and Dr ****** should invite Allen Steere to address doctors at a CME conference.
I don't think you would support that.
Brooks is no different to Steere.
And let's remember, this is a CME conference. CME, for the benefit of non-professionals here , stands for Continuing Medical Education. CME is not a about debating a variety of views. The purpose of CME is to allow doctors to keep their practice up-to-date with the latest medical research.
Now let's look at Brooks.
Dr Brooks took over from Dr Susan O'Connell here in 2012. From the biowarfare lab RIPL at Porton Down, he presides over all Lyme testing in England and Wales (and has huge influence what goes on in Scotland, Northern Ireland and the Irish Republic too).
ANY doctor in our country who has questions on Lyme Disease is referred to Dr Brooks.
Brooks, like O'Connell before him, informs people's doctors that CHRONIC LYME DOES NOT EXIST.
Countless people on the British facebook forums have scanned in their results and posted them publicly. They all say the same thing - if this patient is past the first few weeks after tick-bite, a negative result on the Elisa (or on Western blot in the event the Elisa was positive) signifies there is NO Lyme infection and NO further action need be taken.
These notices are what Brooks send DIRECTLY to GP's (patients sometimes get hold of a copy).
Here are some quotes from Brooks' report to the Health and Safety Executive in Britain, an extremely important body that decides what precautions, for example, people in high-risk occupations should take to protect themselves against disease etc.:
Brooks: "Treatment of Lyme disease
The treatment of Lyme disease at different stages of the disease is summarised in Table 3.
Treatment is usually very effective, and a single course sufficient.
The available data supports a normal duration of 14 days for uncomplicated Lyme; there is marginal data suggesting that 3 weeks may be better in severe cases."
"No benefit is seen in longer courses."
"There is NO evidence that further courses confer any benefit, and NONE WHATSOEVER for prolonged courses of a year or more in any peer reviewed trial (Wormser et al, 2006). "
"The International Lyme and Associated Disease Society (ILADS) guidance is at variance with the internationally accepted position, recommending prolonged courses of antibiotics for “refractory” Lyme disease and the use of combination therapy. A number of independent practitioners and private clinics have produced complex cocktails with multiple drugs given concurrently or consecutively for months at a time....No microbiological or clinical trial evidence supports this approach..."
"A number of papers have been published that claim to test antibiotics in “better” methods than standardised MIC and pharmacokinetic procedures (Sapi et al.) and advocate drugs such as tinidazole. The methodology is deeply flawed ..."
"Prophylaxis following tick bite in the UK - None recommended"
"Post Lyme disease syndrome (PLDS) Antibiotic therapy is not known to have any impact of PLDS.."
"ChronicLyme disease
The evidence from both treated cases of Lyme disease,and from treated cases of other spirochetal infections, is that no viable organisms exist after a full course of treatment (Lantos).
Despite this, a number of papers have been published claiming to have found evidence of Lyme Borrelia after treatment. Most of these rely on discredited methodology or artefacts..."
"RIPL and HPA staff will discuss with Simon Wesseley’s group and other interested parties the development of guidance for clinicians on dealing with the disaffected group with unprovable Lyme disease. This will cover the therapeutic approach, investigation of cases and “disengagement” strategies when further investigation is counter-productive."
END of Tim Brooks Quotes
Need I say more? Under Brooks' policies, we have the LOWEST detection rate of Lyme in the WHOLE of EUROPE.
We're a country of well over 60 million people with tick terrain everywhere. Here is Dr. Brooks' own words on our "official" prevalence:
"The number of cases in England and Wales has risen slowly to around 900 confirmed cases a year as awareness increases."
Now, do you believe that the donations given in good faith to LDA to advance Lyme research should be used to bring this man to the US to lecture US doctors?
Elena ps The reference to simon Wessely is because SW is the leading psychiatrist advocating that ME/CFS and Gulf War Syndrome are "all in the mind". The phrase "disaffected group wit unprovable Lyme disease" refers to the entire chronic Lyme community, condemned to suffer forever because of Brooks' policies.
[ 08-23-2015, 12:05 AM: Message edited by: Lou B ]
-------------------- Justice will be ours. Posts: 786 | From UK | Registered: Oct 2007
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posted
If such is the case, then I think this discussion also needs to be had with the conference organizers.
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
Robin, you are right, but a number of people have already done this and written directly to Pat Smith/****** , apart from the petition.
I know that Dr Alan MacDonald, for example, wrote a very impassioned letter raising his objections about the invitation (he's met Brooks at conferences here and knows exactly what he is.)
I was sent a copy of Pat Smith's reply. Her position is entrenched. She insists that we must invite him so that the doctors attending can hear "all points of view".
That argument, in my opinion, is absurd. The Brooks/Steere point of view is what doctors in USA, UK and much of the world are hearing ALL THE TIME.
The people who generously donated their money so that LDA and Columbia could exist did so partly in the expectation it would be used to help educate doctors, and give them a chance to be listen to the evidence and the viewpoint they never hear - ILADS'. This is a disgraceful abuse of donors' money.
As for ******, I saw a letter from him stating that Brooks believes in persistent infection. That's absurd. You have only to look at the quotes above, or talk to any British Lyme patient, or go on Brooks' website.
There were over 120 signatories to the petition yesterday, and I would urge everyone here to sign it.
The organisers have made a very bad mistake, and the only way to make them understand that, is when they see that large numbers of people do not agree with this decision.
Elena
[ 08-23-2015, 12:22 AM: Message edited by: Lou B ]
-------------------- Justice will be ours. Posts: 786 | From UK | Registered: Oct 2007
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posted
I am not sure what the legal ramifications might be to rescinding an invitation that has been well-publicised. There is also the matter of airfare compensation etc.
One way to mitigate the damage is to address publicly the petition, and make this gentleman aware he will be asked to respond to questions regarding it, as well as other questions pertaining to his stance, at the event.
Just bouncing some ideas off the wall. One hates to give a platform for contrary ideas, but if that platform is held up to scrutiny - and that is a big if - well, maybe something good can come of this.
My experience, though, is that it seldom works out this way. Event organizers generally tend to try to accommodate their presenters as best as possible, and not alienate them, as this can haunt their ability to secure speakers for future conferences. Word gets around.
Posts: 228 | From Unitied States | Registered: Jul 2015
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posted
Hear all points of view? We already know what the denialist position is. It's one thing if a person coming from an entrenched point of view is willing to come with an open mind, to perhaps consider other points of view, and then we have a chance to influence something, as in a real discussion.
But this guy, from the sound of it, per what Elena is reporting, is not coming with any such open mind. He represents the opposite side. I agree - why would we invite the opposite side to our conference? Why do we need to hear them? We know where they're coming from and they're not on our side.
Perhaps a protest will need to be organized against this speaker, but not against the conference, which is for us.
What I would do - keep signing that petition, then have it blown up as a banner and put in front of the conference venue for a standing protest against the speaker, not the conference.
Duncan, I wouldn't worry about alienating other speakers - I don't think we should be having the other side at our conferences!! We've had enough of them. Our conferences should be for the truth of educating about these illnesses.
Elena, perhaps you could communicate further with ****** if he is mistaken in his belief that this person believes in persistent Lyme.
All of what I say here is based on what Elena is reporting. If there are any chinks in this guy's ability to hear anything else, then that puts it back more in the territory of a discussion. However, reading about his position, it doesn't look like that. He looks like straight out of enemy territory.
[ 08-23-2015, 12:06 AM: Message edited by: Lou B ]
Posts: 13116 | From San Francisco | Registered: May 2006
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poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
They are probably hoping that such a person, when faced with intelligent views to the contrary, will at a minimum be forced to explain how he is right and they are wrong. Will be forced to re-examine the views we know are wrong. Will possibly re-consider those views and become more enlightened.
This may not happen. Nothing ever said to Steere has changed his public position.
But this is probaby still being hoped for with others. Who knows, maybe a miracle will happen.
What we know will not happen is that this man will cause us to decide we were wrong. Because we aren't. So, no danger from that quarter.
Worth a chance, some would say, with minimal downside.
Posts: 2888 | From USA | Registered: Mar 2004
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posted
Sorry for my ignorance - I think I looked over the agenda, but don't remember.
Is his Session a presentation, or part of a Q&A panel? If the latter...Well, this can be good. If it's a pure canned speech, it's dangerous as he can come off as being brave enough to walk into enemy territory. That COULD be disastrous, PR-wise.
If it's a speech followed by Q&A, anticipate him refusing to take questions. I've had speakers do that to me, claiming they've a plane to catch or feel poorly etc.
But as I said, if it's pure Q&A, and part of a panel of divergent views...There are possibilities.
Posts: 228 | From Unitied States | Registered: Jul 2015
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poppy
Frequent Contributor (1K+ posts)
Member # 5355
Brooks has a presentation, then there are discussion panels but it doesn't say who is on the panels. So, we don't know if he will be asked questions after his presentation and/or on a panel.
I am sure that the LDA knows the score on him.
So, do we preach to the choir or to the sinners?
Posts: 2888 | From USA | Registered: Mar 2004
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The discussion panel is 15 minutes. Little substantive is likely to emerge from it, and we don't even know if Brooks is on it.
He has 35 minutes, possibly unchallenged. I am not so sure this makes us look as balanced, as it makes him appear fearless and undaunted by false rhetoric, and willing to take the fight to the purveyers of false information.
Even if his half-hour is non-inflammatory, who benefits?
These things are seldom a win-win proposition.
Regardless, I doubt if this can be undone without fallout.
Posts: 228 | From Unitied States | Registered: Jul 2015
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posted
Personally, I think the whole set-up is silly if this guy has an entrenched position. We know what Lyme denialists are like. Why should we bother to listen to them? Let's give our time and attention to people who are doing real work on behalf of us and our needs. I would much rather listen to a good researcher than a Lyme denialist. Just my humble opinion, without being involved in organizing this.
Posts: 13116 | From San Francisco | Registered: May 2006
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This is a very offensive letter, and I have reported it to the moderators. I also note that you have just joined a few days ago.
Yes, Dr ****** did write a letter stating he believed that Dr Brooks believes in persistence.
I wrote back to him, and mentioned how interesting I found that piece of news, because Tim Brooks makes it ABSOLUTELY CLEAR TO THE ENTIRE NATIONAL HEALTH SERVICE in this country, that his policy is that CHRONIC LYME DUE TO PERSISTENT INFECTION DOES NOT EXIST.
As you say you attended the meeting in March in London (and btw, it was not Dr Brooks who invited Dr ******, but Lyme Disease Action), then you seem to be be "au fait" with many details. How then, is it possible that you could be unaware that Brooks policy, from the moment he took officeup till today, is that CHRONIC LYME DOES NOT EXIST?
How could you have missed that?
There's not a single Lyme patient in the whole of the UK who has had dealings with Brooks/PHE or indeed the Nat Health Service in general, and is unaware that the official policy in the UK, (thanks to Brooks and O'Connell before him) is that chronic Lyme borreliosis does NOT EXIST.
I posted, higher up, several quotes from the official report Brooks gave to the HSE.Are you denying they are real? Anyone reading this can use google to search HSE's website and find the full document itself.
those quotes make it ABSOLUTELY CRYSTAL CLEAR that he denies chronic Lyme, and indeed show the contempt he feels for its victims.
Has Dr Brooks ever repudiated a single one of the statements in that report to HSE (HSE is an extremely important body, as you should know, if you are from the UK. )?
No, he has not.
I would say that Brooks, just like Steere, Wormser and the others who share his policies , are in the business of delivering *** far more poisonous than mere words - it is real ACTIONS that result in REAL DISABILITY , REAL SUFFERING, and even at times REAL DEATH, for children and adults with unrecognised Lyme and tbds.
As for me being expelled from some Facebook Uk lyme groups - indeed I have. I have been expelled for speaking openly about the fact that almost ALL the major Denialists in Lyme are/have been biological warfare scientists.
Some - particularly those who believe the way forward is to "collaborate" with our leading Denialist Tim Brooks, a bw scientist is based at Porton Down, our main biowarfare lab - - would prefer me to shut up about such things.
I am fortunate that on LymeNet there is freedom of speech in this regard - whihc does not exist in 99% of the largest UK forums.
In fact, in those forums, you dont even have to discuss biowarfare to be expelled - if you pass the slightest criticism of Lyme Disease Action or other self-appointed representatives of the Lyme community who promote the idea of a "rapprochement" with the Denialists - then you are summarily thrown off.
You say "you and I have previously disageed" - well, I dont know who you are. For all I know, you could BE Tim Brooks.
As for people "unsigning the oetition" - "once they realised the ramifications" - what nonsense. The petition, as anyone can see for themselves (go to uRL at top of thread) is very simple and clear. I have not noticed anyone "un-signing it".
On the contrary, I saw a big increase in signers yesterday and there are nearly 200 in just a few days.
It is a fact that as of recent years there has been SHAMEFUL collaboration from some self-procalimed representatives of the Lyme movement here.
For example, the leader of Lyme Disease Action, was forced to retract after publicly accusing Dr Alan MacDonald, our greatest Lyme researcher ever, discoverer of Lyme cystic forms, co-discoverer of Lyme biofilms, of Lyme's presence in alzheimer brain tissue etc etc etc - of not being "evidence-based " in his approach
Her group has been engaged in "dirty deals" with Brooks - for example signing a joint document with him stating that they accept that mother-to-child transmission of Lyme is "uncertain".
That is an absolute disgrace! Maternal-foetal transmission was proven beyond any doubt decades ago.
All over the world babies are being stillborn and mothers are miscarrying, or giving birth to highly disabled children, because DOCTORS ARE UNAWARE OF THE FACTS about maternal-foetal transmission of Lyme borreliosis.
Tim Brooks, just like Steere et al, is a MAJOR contributor to this appalling situation.
Yet our so-called Lyme campaign has shaken hands over it with Brooks.
In return for these kind of treacherous actions, (Lyme disease Action even urges its members to distribute Brooks' leaflets containing the official Public Health England URLs which tell people that chronic neuroborreliosis doesnt exist) - LDA UK is permitted to put the Dept of Health official logo on its publications.
A deal that benefits the Denialists 100% and us - ZERO.
There is not a single LLMD in this entire country!!
those who are wealthy and well enough - go abroad for treatment.
Those who dont have the money, or are simply too ill - are left to rot.
So what advantage has been gained by kissing Brooks...er...shoes?
Absolutely NONE.
Its clear that you support that policy of getting into bed with the Enemy.
Whats not clear, is whether you are a member of the executive of Lyme Disease Action, or indeed someone working directly for Tim Brooks.
Care to identify yourself?
I have a website, have written articles, have even had a letter published in the Lancet. anyone can see who I am and what I believe in. who are you?
Elena
...............................................
(Slight moderator editing to remove some discussion of characterizing each other)
[ 08-23-2015, 12:13 AM: Message edited by: Lou B ]
-------------------- Justice will be ours. Posts: 786 | From UK | Registered: Oct 2007
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posted
For non-UK readers here, you can better understand this exchange between me and "Marilyn" if you substitute the word Steere for Brooks as you read the posts.
The only difference, after all, is that Brooks lacks an American accent when he speaks his lies.
Elena
-------------------- Justice will be ours. Posts: 786 | From UK | Registered: Oct 2007
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posted
To reply to your question, Robin, it's not an exchange.
He's simply been invited to address a joint LDA/Columbia CME conference.
and to answer those who imagine there will be opportunities to expose the lies he will tell doctors assembled there - if you look at the agenda, there is no space for that.
Brooks' talk is scheduled to finish at 12:20. Lunch commences at 12:20.
There is a q and a session and a point-counterpoint debate on sexual transmission - but not on Brooks' topic.
He will just dispense harmful misinformation to doctors who have come to update their knowledge on Lyme - and this time, instead of being organised by IDSA or CDC or PHE in our country - its organised by a Lyme campaign (!!!)
-------------------- Justice will be ours. Posts: 786 | From UK | Registered: Oct 2007
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posted
One final point re Marilyn's false allegation that I have "done Dr MacDonald" a disservice by opposing the export of our top Steerite to a US doctors' educational conference.
Dr MacDonald has met Tim Brooks in person - several times - including at conferences in the UK.
Are you suggesting that Dr MacDonald is not capable of forming an opinion of Dr Brooks and what he really stands for, and would need ME to tell him?
Read Dr MacDonald's condemnation of the invite again. Thebn, if you disapprove, why dont you write to him, and make the case for the great "advantages" of bringing Tim Brooks to the US to teach American doctors that Lyme is easily cured in 2 weeks - maybe 3 weeks if it's exceptionally "severe".
Elena
-------------------- Justice will be ours. Posts: 786 | From UK | Registered: Oct 2007
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posted
I have been a member of this group for some years but don't find it particularly helpful to use. I have no connection with Lyme disease Action and you may know me as Joanne from various facebook groups. It does not help our cause to constantly attack the person who we need to help us.Unlike the Steere cabol Brooks is quite new to Lyme - give him chance to learn from some of the best scientist in Lyme. I have it from Dr ****** in person that it was Dr Brooks who invited him to be keynote speaker at the PHE meeting in March. Lyme Disease Action also told me they were not involved in inviting Dr ****** to the PHE meeting. I won't be pursuing any further discussions with you on the matter I just ask others to think carefully what they should be agreeing to signing.
[ 08-23-2015, 12:15 AM: Message edited by: Lou B ]
Posts: 2 | From UK | Registered: Aug 2013
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posted
This is very interesting - we are hearing two different viewpoints on this issue. Please continue to discuss the issues without attacking those who are reporting in here.
Posts: 13116 | From San Francisco | Registered: May 2006
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OptiMisTick
Frequent Contributor (1K+ posts)
Member # 399
posted
This has been an unusual discussion of a not-for-profit 501c3 group's upcoming scientific and medical conference, which is configured according to certain standards set up by the university accrediting the CME course, and must follow guidelines including USA Treasury language for what will and will not be regarded as "educational" activities with respect to the ability of a nonprofit to obtain/retain nonprofit status.
I would hope, gauging from the interest shown on this board in the conference, that we all will be attending this conference together.
Perhaps some might even decide to appreciate how a variety of speakers present a variety of viewpoints, or volunteer for organizations that are all-volunteer run, or support people who are doing a tremendous job of advocating for Lyme patients here in the USA, or learn about common practices in what is called "Non-Profit Guidance," or raise money to support scientific research or obtain initial treatment for children, rather than just posting on and on and on about something that is clearly not understood.
I would suggest that what is at the heart of this brouhaha is a lack of familiarity, plain and simple.
Some folks on this side of the pond don't know a thing about Dr. Tim Cook.
Some folks on that side of the pond don't know a thing about USA Nonprofits, finance, running a conference, USA legalities, and so forth.
Apparently a lot of folks lack familiarity with scientific conferences, or the free and open exchange of ideas, but seem well familiar with the game of “Whisper Down The Lane” where one person says something and a whole lot of people repeat some garbled version of it, all the while not knowing what they are saying.
Which is what this discussion sounds like.
One person in Great Britain says this, one MD over here who at times has had health problems, says that. One person in a pretty good position to be able to judge says a guy is OK. Everyone else doesn’t know a heck of a lot but they have a lot to say, regardless.
I have a suggestion for everybody from Great Britain who is weighing in on this.
We will take care of our business, you take care of yours.
As far as Steere goes. I sat in on a forum where Steere spoke. I didn't come away believing the same as him, but I approached him afterward and he courteously listened to me and I to him, 9 inches apart.
I think this is all one can ask when viewpoints are divergent, with respect to conferences and forums.
I am, after the fact, glad I listened to him. It was interesting. I noticed that he began to qualify his future comments by saying things like Lyme ARTHRITIS. I would love to say it was because of my influence.
Brief pause for group laughter. Ha!
I am not so sure that Elena is on the money about Dr. Tim Brooks. I hear, and read, a different perspective….
I thought the last conference in March 2015 over there looked pretty good!! Here’s an excerpt from it:
* * * *
Overview of PHE activities: Dr Tim Brooks, Clinical Services Director, PHE Rare & Imported Pathogens laboratory (RIPL)
Dr Brooks thanked the speakers, some of whom had travelled considerable distances to attend the event, which was timed to raise awareness of issues around Lyme at the start of the 2015 tick season. RIPL work on a range of diseases, the disease courses of which are rarely ’cut and dried’.
In many diseases there is a question mark around how to resolve persistent, post-treatment symptoms and there is a lot we don’t know in this area. In order provoke financial commitments and changes in policy, you need evidence, and generating evidence costs money. Therefore you have to start small and build credibility in order to target progressively larger pools of research funding.
The Health Protection Research Unit in Emerging and Infectious Zoonoses (EIZ HRPU), a collaboration between PHE and the University of Liverpool, includes within it the first external research funding that PHE has been able to secure for Lyme disease, in the form of one PhD studentship, looking at novel biomarkers of Lyme disease and 50% of a postdoctoral researcher looking at the public and patient perceptions of Lyme disease. A second PhD student, funded by PHE, will look at alternative diagnostics e.g. high-volume PCR.
Sounds like Brooks is open-minded in this blurb, one researcher to be looking at novel biomarkers of Lyme disease (presumably to find better modes of testing), one looking at the social aspect, and one looking for alternative methods of testing. And that is just from one paragraph from Brook’s short talk, by no means a summary of what he has done while he is in office.
If one substituted Dr. Steere for Brooks, and reported the above, I would be pleased.
* * * *
Continued reading the panel discussion of this conference afterward, here are some of Brooks’ answsers:
TB: In Lyme disease, the immune response does not always proceed in this ‘normal’ way - Borrelia has lots of surface antigens and can evade the antibody response, prolonging the illness.
TB: Funding bodies need to be convinced of the need to generate new evidence, especially when opinion leaders have previously stated that it is not needed. In the UK we are heading in the right direction with questioning of the current guidelines. We can write to doctors but we can’t make them read what is sent, however a higher media profile means that patients are more aware and that motivates GPs to become more informed themselves.
TB: we need good quality clinical trials and data. We need to look into other possible diagnoses for patients displaying Lyme-like symptoms but who test negative. We need to raise public awareness so the research councils put out the right funding calls so that research funds become accessible.
* * * *
Note: there is nothing terrible about suggesting to cast a wider net in considering Lyme-Like Symptoms. Once researchers over here began doing that, we came up with 4 more coinfections, then 4 more, and now we are up to – what – 15? And those are the ones CDC recognizes!!!
There are now some very excellent researchers and US medical docs from “our” side who give excellent Differential Diagnoses talks. Sometimes it is NOT Lyme, or not JUST Lyme that is doing the damage. So I don’t think Brooks is off the mark in the last comment.
_ _ _ _ _
These, to me, do not sound like the comments of an extremist!
They sound like Reasonable Rational comments from somebody I would like to hear.
But - If you in Great Britain feel strongly against Dr. Tim Brooks – who – come on folks – most of the listeners on this board know nothing about, why not handle that IN GREAT BRITAIN first.
Why not convene scientific conferences of your own and invite the people who SHOULD be heard?
Why not invite the MPs, if I have that right, to attend, or ask them to give you an audience.
Why not develop an active and well-funded nonprofit that can educate doctors and the public and sponsor scientific conferences such as those in the past, over here, where the price of the ticket has been subsidized to keep the cost to the patient down?
Why not raise enough money (over $250,000) to start over 250 children on the long road to recovery.
Why not spend 12 to 18 hours a day running that organization at no salary or stipend – ever.
Assisted by tens and hundreds of volunteers who draw no salary or stipend – ever.
Why not sponsor research that would target and alleviate Great Britain’s concerns.
I think that would be a logical and rational way to proceed out of concern for British patients, a better alternative than coming over onto US Boards, presenting biased viewpoints as fact, and not understanding logistics and requirements of a nonprofit scientific conference in the USA.
To those in a hurry to throw eggs on Dr. Brooks from this side of the pond:
It’s been a long, hot summer.
COOL OFF!
[ 08-10-2015, 02:12 PM: Message edited by: OptiMisTick ]
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OptiMisTick
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I repeat, so as to draw your attention, the following comments of Dr. Tim Brooks (the asterisks are mine):
TB: In Lyme disease, the immune response does not always proceed in this ‘normal’ way - Borrelia has lots of surface antigens and can evade the antibody response, *****prolonging the illness.*****
TB: Funding bodies need to be convinced of the need to generate new evidence, especially when opinion leaders have previously stated that it is not needed.
*****In the UK we are heading in the right direction with questioning of the current guidelines.*****
We can write to doctors but we can’t make them read what is sent, however a higher media profile means that patients are more aware and that motivates GPs to become more informed themselves.
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Optimistick, I will answer you more fully later.
I do not think you should judge what Dr Brooks' policies are by the second-hand minutes taken at a conference by a person who naively hopes that a rapprochement with the top Denialists will help us, and was concerned to present him in that light.
I think you should judge Brooks' policies by things such as his official reports (the apalling citations further up are from one of them), from what he is caused to appear on public health websites as a source of information for the entire country, and above all, by the CONSTANT stream of patients who report that Brooks' lab has informed their GPs that they could not possibly have Lyme as they have had a negative antibody test - which is, his REAL position in practice.
Many have scanned in the copies they obtained of those letters to their GP - and the wording is EXACTLY THE SAME EACH TIME.
I'll comment on the rest of your post later - but please can you clarify who you were talking about when you made a reference to an MD with health problems? Thank you.
Elena (ps I am Cook - he is Brooks, also known as "Babbling Brooks")
-------------------- Justice will be ours. Posts: 786 | From UK | Registered: Oct 2007
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posted
In contrast to 100% of ILADS doctors, Dr ****** has in recent times begun to refer to the Elisa test as a "sensitive" test, and engaged in publicly condemnation of Igenex and other labs who don't believe in toeing the CDC line.
Would it be too farfetched to suggest that this might- just might - have something to do with why Dr Brooks invited him?
I noticed that one of his latest papers was published with the support of IDSA.
The IDSA Lyme committee,as you all know, are the authors of the guidelines that have created such colossal suffering around the world - Brooks, and O'Connell before him, frequently cite them as their inspiration.
They don't usually show interest in publishing material written by researchers "on our side".
Could it be that they like Dr ******'s turn of phrase: "Sensitive Elisa" ?
As you know, in Lyme, "sensitive elisa" is an oxymoron, like saying "bright darkness", or "soaking Sahara".
Or "loyal treachery".
Elena
[ 08-23-2015, 12:18 AM: Message edited by: Lou B ]
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OptiMisTick
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(Side comment: the first sentence in the previous post made me laugh. ****** is anything but a CDC purist! Should we be demanding that those in GB all throw tomatoes at him when he appears at **your** next GB Lyme conference in another month, where I notice there is a wide variety of speakers, or should we be posting on boards over there what a Bad Guy he is? Demand the Great Britain conference be picketed or dismantled?)
Greetings once again on a Hot Summer Day!
With respect to previous discussion, there apparently is a large patient population with Tickborne Diseases in Great Britain and some of them have groups, participate in conferences (i.e. September, 2015), have websites, write minutes from conferences.....
It would make sense to me for someone from GB who is so concerned to join with them and take actions in Great Britain that would benefit patients from Great Britain, especially regarding an official and speaker from Great Britain.
Over in the USA we have a history of inviting speakers from a wide variety of viewpoints. I have to believe this is true in Great Britain also (see their conference roster); this is not something that is unheard, as there are USA speakers coming to speak at your September 2015 conference over there, as well as other countries now and in past.
However Dr. Tim Brooks seems to be a little different than he is being primarily represented on this Board so I hesitate to even continue discussing him as an adversarial speaker or one who holds extremist views, in view of other information which I think portrays him as more openminded.
Great Britain has a different set of circumstances, it’s true. As one of the opinion pieces that I read pointed out, even the Borellia populations over there are different. (BTW I am fascinated by the research report on classification of Borellia as SO-1, 2 and 3 – see quote here:
“Monoclonal antibody typing showed that UK strain SO-2 was Type 2, in terms of its capacity to spread via the bloodstream. This implies an intermediate tendency to disseminate, with Type 1 being highly likely and Type 3 the least invasive.(2) UK strain SO-1 was not typable but appears to resemble European strains.”
Would love to see research over here on classifying strains according to tendency to disseminate.)
Perhaps the ELISA test is different over there also, the ELISA test of today is not my Grandfather's ELISA test nor my initial ELISA test, I am ***that old.***
I bring up the ELISA as it has been hit on as an objection to Brooks more than once.
I make absolutely no defense of the ELISA - but rather need to point out that a lot has changed over the years with testing The cases of Babesiosis in this country began to be more readily identified – the human disease was discovered before Lyme disease even (there is bovine Babesiosis) – when MD Labs perfected the Babesiosis testing around 2001 and got 1000% more sensitivity. Yet the testing name never changed. Testing in general, luckily, continues to be investigated, on both sides of the pond, tweaked, and even Dr. Tim Brooks is funding at least one person to look into testing.
(I’m hearing the ELISA has gotten a lot more sensitive, that in 2012 they developed a new, ultrasensitive, enzyme-based ELISA test which uses nanoparticles as a chromogenic reporter)
A lot has changed over the years and science is in a continuing state of change, which is why we need conferences and not to wait till the newest science eventually gets past the gatekeepers and stacked deck of journal editors and journal/organizational politics to be published in a peer-reviewed journal, if EVER.
I don’t generally spend a lot of time on LymeNet or other boards, I have too many other obligations and complications – such is LIFE.
However, basically, I wonder, why someone from Great Britain is coming over HERE on these boards to get us to spank some guy over THERE for them - by being disruptive of a USA Scientific Conference they have no relation to whatsoever. And probably have never made a donation to or volunteered for this nonprofit or accrediting body or university, so I’m not sure where the sense of entitlement comes from, expecting to be allowed to specify who will and will not speak at this conference in a completely different country by an organization and a university and accrediting body they have no knowledge of or relationship with.
Meanwhile those chiming in here have never read anything Brooks has put out, wouldn’t recognize him – or Anyone from Great Britain engaged in this concern – if they walked into a room. It hasn’t seemed like a very free exchange of ideas here, either!
The bottom line being, while I speak of free exchange of ideas, this does seem like a very circuitous route to getting something done in Great Britain, - - posting on a USA board to folks to whom Tim Brooks is unknown and asking that he be punished over here by us for those over there.
Really?
Particularly as I am not at all convinced that Dr. Tim Brooks actions and philosophies are as have been factually represented, in view of other input.
Do you think Brits might be well advised to resolve their objections in their own country along with others who feel the same, over there, and know the apparent set of opinions AND POLITICAL LANDSCAPE ? Nobody has gone over to UK boards and said, “Hey, will you publicly diss X for us in the USA?”
Over here in USA, when the situations have arisen regarding a particular doctor or researcher, or politician or piece of legislation, and there have been more than one situation, those in the USA have handled our own business,
-- Worked together
and put forward events or objections or group papers, and shown up in body and spirit. We’ve not asked the Brits to spank anyone for *us.*.
It’s not always an easy proposition. Tempers are lost. Sometimes friendships are lost for no apparent reason. Feelings get hurt.
But we do it together, as many of us as can agree that reaching the same goals requires us to be open-minded and sensitive and HOPEFUL that change IS possible, CAN come about through dialogue, exchange of ideas, and LISTENING. And being well versed in what the issues are, not riding in zealously with sword drawn and incomplete or less-than-factual information.
The posting on LymeNet asking for a lot of people to disdain a British countryman whom most know nothing about, ditto for the issues, - - - is based on what one person has expressed as opinion.
Meanwhile the Great Britain conference is an opportunity coming up in another month. Wouldn’t this be a better venue to address some of GB concerns, and with others, and more directly?.
Others over in UK seem to be amenable to working with Brooks. I read comments that indicate he is a rational person. I’ve heard other good things.
There apparently is a large patient population with Tickborne Diseases in Great Britain and some of them have groups, participate in conferences, have websites, write minutes from conferences.....
Eight Legs seems to have expressed being at odds with them, and more than once essentially referred to them as wanting “rapprochement with denialists.” Which seems to be another way of saying folks who are trying to find middle ground with the other side, or folks trying to work things out with the other side.
But as this is IN A DIFFERENT COUNTRY I can’t speak for sure on that, just as folks over here shouldn’t be jumping on a bandwagon of the business of another country, when we have so much that we can address ** here.**
Science is in a continuing state of change, which is ***why we need conferences*** so we will not be forced to wait till the newest science eventually gets published in a peer-reviewed journal with a stacked deck of editors and politics to match and etc. - - if it ever does at all.
Q. Who knows how long it took Steven Barthold’s Persistence studies results to finally get published in the USA journals?
A. I heard TWELVE YEARS. Luckily he spoke at conferences. Imagine if there were no conferences, no sharing of ideas and studies, and we had to rely on the politics of tightly controlled journal publishing as our sole source of information on the latest research on tickborne diseases!
Also, to correct a point in someone’s previous post, it was said that “CME is not a about debating a variety of views.”
According to US Treasury regulations, that statement is false. A variety of views is required when one is sponsoring a nonprofit activity in order for it to be considered “educational.” This guidance is rooted in regulation which provides that “an organization that advocates a position or viewpoint can qualify as educational if it presents “a sufficiently full and fair exposition of the pertinent facts” so that people can form their own opinions or conclusions.
This is the basis for any organization, CME provider, university, or nonprofit to strive to present a variety of viewpoints. There must be something equivalent in Great Britain as I see the September conference over there has folks from other countries as well.
I would suggest that this Great Britain Lyme Action conference might be a good place to start with other GB Lyme folks in addressing mutual concerns.
In looking at some of the Great Britain literature on Lyme, I see hope – perhaps not the extremes which previously have expressed. Perhaps matters are evolving now that Brooks has taken over. Some say his predecessor was very biased. It takes time, when anyone takes a new office, to make changes from what has been so long entrenched. It can’t always be done individually, there is usually a well entrenched establishment…………..
UK National Health Service gov’t website currently states:
Lyme disease can often be treated effectively if it's detected early on. But if it's not treated or treatment is delayed, there's a risk you could develop severe and long-lasting symptoms.
If your symptoms are particularly severe, you may be referred to a specialist to have antibiotic injections (intravenous antibiotics).
Elena, you seem to have a passion for righting the wrongs that have caused Lyme disease to be so misunderstood in Great Britain. Wouldn’t this seem to be best addressed in your country with your colleagues, who could benefit from your efforts?
Meanwhile I am going to change the unfortunate name for this thread.
Please see the new thread at: Terrific November LDA Scientific Conference offers Broad Perspectives, HOT TOPICS!
[ 08-23-2015, 12:25 AM: Message edited by: Lou B ]
Posts: 1338 | From Above the Clouds | Registered: Nov 2000
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Here is something I found online - they are Dr Brooks' answers to 59 questions being put to him by Lyme patients prior to an October 9, 2013 conference - maybe we can browse through this and comment -
I think his answer to #38 is a bit weak - says that vaccines have been shown to be effective and that the Lyme vaccine was withdrawn for commercial reasons. He didn't say it was withdrawn because it wasn't working and was making people more ill!
I found another answer a bit strange - to #56, about IGeneX - him saying IGeneX doesn't say much about its testing. Actually, we do know the lab uses two strains, B31 and 297, to test for Lyme disease pretty much from around the world, and it tests for antibody band reactions. That seems clear enough to me.
Gotta be careful here - you can invite someone, but whose side are they really on? Is he somewhere in the middle? Originally from the denialist position but trying to change, or what?
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OptiMisTick
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I’ve also seen the referenced document but let me first say I think we can generally dispense with one-word pejoratives and extremist language to describe a person and their philosophy or body of work or career or belief system. It only adds antagonism to what should be a civilized discussion. Inflammatory language, in general, adds unnecessary negative dimension to any dialogue.
Let’s also identify and be clear on what the discussion is.
The discussion centers on whether someone from Great Britain, or anywhere really, who does not agree with the philosophy of a speaker scheduled for a scientific conference given by a nonprofit and a university/accrediting body has the right to demand that the agenda be configured according to their tastes and preferences. This would be an individual, incidentally, unaffiliated with the specified organizations and not in a decision-making capacity for this conference.
The clear answer is No!
For me to say that the rationale rests solely on whether an open and free exchange of ideas is the determining factor and whether we should listen to a “denialist” is a moot point because I don’t accept the terminology, and further I don’t think this is the definition of Tim Brooks.
I think this is a mischaracterization, however, it is moot to the decisions relative to speaking at a conference.
Searching the internet trying to find some obscure rationale or reason to prove he really is a bad guy, this is also a moot point.
Trying to read answer X on page Y or whatever, and deduce what it maybe/might mean to determine a reason to justify excluding him from speaking – this still misses the point, and further, is just silly.
Brooks’ answers to two simple questions two years ago are not part of some qualification process to be an invited speaker.
However, there is a term in education, “the teachable moment,” and this is just such a moment with respect to Lyme vaccines. It’s instructive because Vaccines are now periodically popping up on our horizon and it would behoove us all to be a little more familiar with past and present.
The short story is once upon a time, there were two Lyme vaccines in development in the USA. One made it to market. In order to facilitate the vaccines, several years ahead, certain “critical bands” for Lyme disease detection were removed from testing at the Dearborn conference in the 90s.
This subsequently inhibited Lyme testing validity and prevented some patients from being diagnosed positive because these critical bands were not being considered, and eventually, unless a doctor specified, “REPORT ALL BANDS:” on the testing request, the testing lab would not report those bands that were no longer considered “valid.”
This was one disruptive side-effect of the whole Lyme vaccine development process.
One vaccine made it to market and then it was taken off the market.
A major Lyme nonprofit (LDA), other Lyme leaders, vaccine victims and an attorney from the USA went to Washington DC to advocate for the vaccine’s discontinuation.
The manufacturer, apparently seeking to avoid the public embarrassment, or maybe to avoid the hit to the stock price, chose to voluntarily withdraw the vaccine from the market citing – back then – lack of demand, and that the motive was profit-based.
Or so it was put out to the public.
You said:
“I think his answer to #38 is a bit weak - says that vaccines have been shown to be effective and that the Lyme vaccine was withdrawn for commercial reasons. He didn't say it was withdrawn because it wasn't working and was making people more ill!”
“"Safety wasn't a factor in our decision," said Ramona Dubois, a spokeswoman for Glaxo, which inherited Lymerix last year after buying the vaccine's original manufacturer, SmithKline Beecham.
"Despite our best efforts, demand hasn't reached a sustainable level. The market just wasn't there," she said.
* * * *
I don’t think criticism of Brooks for accepting the company’s stated reason is necessarily valid.
There are various perspectives on what actually occurred. It tickles me that one attending journalist so described this meeting:
“Before the meeting was through, enraged FDA panel members questioning the manufacturer, GlaxoSmithKline, would alternately yell and laugh at the company's experts, sometimes making such pointed fun of them I thought I was at a roast. “
I seem to remember that many felt this excuse (lack of demand) was the manufacturer’s preference so that it could continue to market the vaccine outside of the USA.
However at times when it has seemed like a new vaccine is on the horizon, then we hear about other reasons for the unsatisfactory initial vaccine, I would imagine so as to draw a distinction, i.e. “THAT vaccine was bad as it caused side effects, however THIS vaccine is new and improved and will be fine.”
Later on, it became fashionable to blame the lack of demand on Patient Advocacy groups as a means to justify why the vaccine was removed, at times when some entities were raising the possibility of new vaccines.
Some articles like to imply that the key to getting the vaccine accepted is to pacify those patient advocacy groups, rather than to make sure it's a safe vaccine that won't have any side effects or a significant list of "black box" warnings.
Vaccines are again looming on the horizon and so now there is a scramble to draw distinctions between what happened THEN and how future vaccines might be new and improved.
I should point out that some of the recent buzz for new vaccines is being supplied by Stanley Plotkin, who is/was vaccine advisor to the CEO of one of the two original Lyme vaccine developing pharmas….
With respect to Brooks’ answer to the Igenex question, his complete answer stated “Igenix supply little information on their tests, and have published little on the criteria for the blots they use. It is therefore difficult to say what the tests mean. If tests from a NHS laboratory accord with Igenix, then there is no cause for concern. Igenix have agreed to meet with PHE and LDA to discuss their tests.”
I read that as perhaps info had been requested from Igenex but not sent. However the last sentence seems to indicate that again, Brooks seems to be openminded.
I seize the teachable moment to get a little vaccine information in front of people as I have a feeling we will be hearing more about potential vaccines in the near future.
I do urge readers to follow the links and read the full articles on what has occurred with vaccines in the past. Another great account, possibly the fullest one yet, is "Cure Unwanted? Exploring the chronic Lyme disease controversy and why conflicts of interest in practice guidelines may be guiding us down the wrong path." By J. Ferguson
However, this article is difficult to obtain. I have it somewhere from a research library but if someone is so inclined to look for a direct link, I would appreciate that link.
Posts: 1338 | From Above the Clouds | Registered: Nov 2000
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Once again, my apology to both Joanne/Marilyn and Optimistick for not yet having time to answer your points fully at the moment(Optimistick has written a lot more since yesterday too)
Like you, I also cannot spend too much time here due to work and other commitments (including Lyme commitments)..
I have just time to make the following brief point:
This is not at all a case of Americans vs British, nor does it make any sense that American or British Lyme patients should have tunnel vision and just concern themselves to what goes on in their country. The Denial is international (although it all stems from your CDC/IDSA) and the suffering is worldwide too.
Well over 200 people have signed the petition in just a few days, and so for your interest in the meantime, I have randomly picked out the first 20 or so of the comments from the petition that were written by people from the UK. (See below)
I am posting them because some people online have been trying to distort the truth, claiming that the British Lyme patient community backs co-operation with Brooks and that I am "the odd one out".
The self-appointed reps of our community in the Executive of a charity called Lyme Disease Action, an undemocratic body over which we as patients have no control, supports close collaboration with Brooks.
In addition, there are some individuals outside of Lyme Disease Action (such as Joanne here), who also believe we need this collaboration.
That does NOT mean that the British Lyme community in general supports it.
I am posting just some of the comments from UK signers here (minus their names), which were written in reply to the question "Why do you support this petition?"
Each asterisk begins a different comment by someone from the UK Lyme community. (For non-UK readers: "NHS" stands for our National Health Service):
*I concur wholeheartedly!
*I know a young woman with Lyme and what
she's been through because of people like
Tim Brooks.
*My friend has the disease.
*The UK NHS system of diagnosing, testing
and treatment of Lyme disease is
shockingly poor, resulting in unnecessary
anxiety, stress and personal cost to
sufferers.
*The UK NHS is in denial about the extent
of Lyme infected ticks and chronic Lyme
disease. Let only those who acknowledge
the extent of this disease speak at the
conference.
*It is criminal the way the NHS refuses to
accept the existence of many chronic
diseases including Lyme Disease.
*I've Lyme disease and nhs Scotland have
treated me, but I'm still very ill and
unable to work or to lead a normal life
*My daughter suffers from this terrible
illness and has had similar treatment from
the NHS .
*I'm a Lyme sufferer of 30 years...as I
"self diagnosed" I'm not taken seriously;
despite the fact that my "MS misdiagnosis
10 years ago has not progressed at all,
but has almost disappeared due to
expensive private treatment.
*there is well evidence data that chronic
lyme disease does exist. shame on you dr
tim brooks.
*Denying the existence of chronic Lyme
disease and labeling sufferers as
attention seekers is arrogant, not to
mention unhelpful.
*It's all wrong just wrong
*I have a friend who has been seriously ill
with Lyme desease for many many years. I
don't understand why it's not taken
seriously.
*I had an EM rash 30 yrs ago but after many
years of symptoms have just found out what
the post tick bite rash means. Have had 2
ELISA tests, both negative, ergo don't
have Lyme, ergo no treatment. Can't really
blame GP as he has to follow NHS
protocols. Disappointed with Infectious
disease doctor though.
*I have lyme disease and have been let down
by the nhs . I have had no test or
treatment from them.
*My friend has had first hand experience of
this awfull disease
*I have a friend who suffers Lyme disease
and anything to help has my support
*I have Lyme disease diagnosed clinically
and by overseas blood test. The NHS does
not recognise this so I get no treatment.
*Because of the CDC/IDSA policies that Dr
Tim Brooks doggedly follows, despite a
mountainous amount of peer reviewed
evidence that their stance is wrong,
thousands are misdiagnosed and untreated
in the UK. I am one of the thousands and
have been for 20 yrs.
*Dr Brooks is not held in high regard here,
he is merely a puppet of the CDC/IDSA. He
is not fit for purpose in the field of
Public Health, and should go."
End of sample of comments from UK signers of petition against Tim Brooks addressing LDA/columbia conference November 2015
-------------------- Justice will be ours. Posts: 786 | From UK | Registered: Oct 2007
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OptoMisTick - thx for the vaccine articles. I read through them - seems to me the powers that be were glossing over the possibility of the vaccine inducing autoimmune arthritis. I read the one about the FDA expressing concern that this could happen and they approved it anyway.
I have noticed that people like to say the vaccine was discontinued for lack of market, but that phrase fails to say that people were concerned about its adverse health consequences.
I'd say be careful about vaccines. They can have so much stuff in them now - fillers, adjuvants, questionable ingredients. Can cause difficult side effects, and unintended negative results.
Re IGeneX - the lab is outstanding, is able to diagnose as well as any Western Blot test will allow.
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OptiMisTick
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I concur on Igenex! Many interactions and they go out of their way to help patients.
With respect to comments by signatories, I would expect such comments from folks signing the petition, similar to what I expect out of those who rabidly support a certain political forerunner, despite reprehensible words and actions.
In otherwords, The comments reflect the reason for the signatures.
Aside from this back and forth, you could have just as easily printed similar comments or stories from many sites in the USA.
You are correct that this is a Universal problem.
This is separate from what goes into creating a panel of speakers for a conference.
That's the point.
I urge you to form your own British equivalent of a non-profit and, together with others, address concerns.
I think this is the only way to effect change in the long run.
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poppy
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Member # 5355
posted
Listen, we all know the gov't officials of both countries, and many others, have failed us, and for a long time thru multiple changes in personnel.
All we can do is try to change this. So, if anyone has ideas how to do this besides what we have been doing all along, let's hear it.
In the meantime, I think it might not do any harm to have this man come to the conference, and not impossible that some good might come from it. We have to keep hoping. The alternative is giving up.
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I still feel like we're missing some facts here - why was he invited to speak? To give equal time to a denialist? Because they think he's not a denialist but is actually open to working on the problem? Because he's friends with Dr ******? What reasons? If anyone knows - thanks -
[ 08-23-2015, 12:21 AM: Message edited by: Lou B ]
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OptiMisTick
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posted
I imagine it's because people want to hear about England, plain and simple.
Next year i hope it could be someone from Canada, where ticks have apparently "just" burst upon the scene. (j/K)
And where many who vacation there or have relatives are concerned about.
The year after that maybe Australia. Who knows.
Speakers for any conference are selected on the basis of what's current, what's new, what's of interest to the community, what's trending, and so forth.
What are people interested in.
That's it. No sinister motives!
Two years ago the conference held in the Midwest had I believe two European speakers.
Cross-fertilization of ideas.
[ 08-12-2015, 04:07 AM: Message edited by: OptiMisTick ]
Posts: 1338 | From Above the Clouds | Registered: Nov 2000
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"why was he [Brooks] invited to speak?..." OptiMisTick replied:
"I imagine it's because people want to hear about England, plain and simple."
OK. Well many people here would like to learn about Lyme in the USA. Should we invite Allen Steere to give a talk on "Lyme in the USA"?
Brooks is 100% committed to Denialism, pure and simple.
You repeated a quote which is from a report of a PUBLIC RELATIONS meeting, a bit of theatre which Brooks has been in the habit of staging one or twice a year.
The way he is talking, verbally, is VERY different when he is trying to con gullible patients, compares to when he sits down to compose reports that lay down the actual POLICIES that the NHS is then made to follow, in practice.
Brooks is a monster and I make no apologies for saying so.
I'm not pretending this is a comprehensive reply to points raised here by Optimistick and Marilyn/Joanne - I dont have the luxury of being able to spend 16-18 hours per day on Lyme work. It would be my dream to have that amount of free time to spend on Lyme.
I do put in a huge amount of time to Lyme activities, and I have never been paid a penny for any of it, just like you and, from what you're saying , all LDA too. But I have to marvel that, (if I understand you right), all those who run LDA are working 16-18 hrs a day for it, unpaid. How do they manage that?
The only people I know who are free to volunteer 16-18 hours a day are the retired, those who are so rich they dont have to work, those who are being supported financially by some other source so they don't have to work, and the disabled.
But of course, the Lyme disabled would not be able to work 16-18 hrs a day for a campaign.
In fact, many are too ill to be able to be able to commit to 16 MINUTES per day.
So, if you are going to re-post the spin talk from Brooks' P-R meetings, I am going to have to remind you what he writes in his OFFICIAL POLICY RECOMMENDATIONS to medical bodies. Here it is again:
Brooks: "Treatment of Lyme disease
The treatment of Lyme disease at different stages of the disease is summarised in Table 3.
Treatment is usually very effective, and a single course sufficient.
The available data supports a normal duration of 14 days for uncomplicated Lyme; there is marginal data suggesting that 3 weeks may be better in severe cases."
"No benefit is seen in longer courses."
"There is NO evidence that further courses confer any benefit, and NONE WHATSOEVER for prolonged courses of a year or more in any peer reviewed trial (Wormser et al, 2006). "
"The International Lyme and Associated Disease Society (ILADS) guidance is at variance with the internationally accepted position, recommending prolonged courses of antibiotics for “refractory” Lyme disease and the use of combination therapy. A number of independent practitioners and private clinics have produced complex cocktails with multiple drugs given concurrently or consecutively for months at a time....No microbiological or clinical trial evidence supports this approach..."
"A number of papers have been published that claim to test antibiotics in “better” methods than standardised MIC and pharmacokinetic procedures (Sapi et al.) and advocate drugs such as tinidazole. The methodology is deeply flawed ..."
"Prophylaxis following tick bite in the UK - None recommended"
"Post Lyme disease syndrome (PLDS) Antibiotic therapy is not known to have any impact of PLDS.."
"ChronicLyme disease
The evidence from both treated cases of Lyme disease,and from treated cases of other spirochetal infections, is that no viable organisms exist after a full course of treatment (Lantos).
Despite this, a number of papers have been published claiming to have found evidence of Lyme Borrelia after treatment. Most of these rely on discredited methodology or artefacts..."
"RIPL and HPA staff will discuss with Simon Wesseley’s group and other interested parties the development of guidance for clinicians on dealing with the disaffected group with unprovable Lyme disease. This will cover the therapeutic approach, investigation of cases and “disengagement” strategies when further investigation is counter-productive."
END of Tim Brooks Quotes
Is there anything unclear in that text? I don't think so. And that is not from the report of a Lyme patient who desperately wants to believe in fairy tales, giving her own account of a P-R meeting for patients' consumption. That's an OFFICIAL REPORT written by Brooks.
Elena
-------------------- Justice will be ours. Posts: 786 | From UK | Registered: Oct 2007
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posted
For now, all I have time is to respond to a few points. I'm asking you not to raise new ones, or we'll never catch up with this discussion. As explained, I dont have the luxury of being able to work 16 hrs a day on Lyme. I have to support myself, and also spend time on various measures to psychologically heal my destroyed family, destroyed by Lyme Denial.
1. Marilyn/Joanne, thank you for giving your name. I am pretty sure I know which Joanne you are. And in fact (unless you're a different Joanne) we have had a few run-ins because we differ on whether to collaborate with, or combat, likes of Brooks.
But someone having a different opinion to you does not constitute "nastiness".
2. Joanne, you accused me of "vitriol" against Brooks (very odd words for a UK Lyme victim). But do you recall that remark you once made on FaceBook, where you implied that because I had such a horrendous Lyme experience,my viewpoint was somehow skewed, and I could not see how "rosy" things actually are.
Correct me if Im wrong, but I seem to recall that in the same conversation, you explained that you had had some long-term treatment on the NHS (ie free), and that therefore your perspective was somewhat different.
Joanne, in my 13 years in the Lyme movement I have only come across ONE other British patient who was able to receive long-term treatment on the NHS.
And that patient was DYING due to her severe infection. Not that dying, under O'Connell or Brooks' policies, qualifies you for long-term NHS treatment. It does not. But the lady in question, who was already paralysed from the waist down and in a wheelchair, organised a rally outside the Prime Ministers house here, and some media began to get interested.
The authorities got scared, and offered her the treatment.
I shoud add we got ZERO support from Lyme Disease Action (main source of the "lets -work-with -wonderful-Dr-Brooks lobby here in UK".
In fact LDA here actually spoke out against it. They have NEVER supported a single protest in this country, not even the WorldWide Lyme protest.
Their founder has openly said in the past that we should not protest, and she once told people here to "Stay away from Elena, she's an 'activist'".
Apparently LDA UK see activism as a dirty word.
But I digress. Your point, in mentioning that our contrasting experiences colour the way we see the situation, was valid. But Joanne - maybe not everyone in the UK had as horrendous a thing happen to them as I did. But, I promise you, the MAJORITY of chronic Lymies here will tell you that as far as they're concerned, they're life has been wrecked. The MAJORITY are far closer to me on the continuum , than they are to you.
Even the tiny number who have had long-term treatment to ge tthem to a reasonable stage of wellness, had to pay for it, often with their life-savings. So you are the odd one out here, and therefore you are more apt to think that things are "not so bad" and "improving all the time".
Thats not the experience of most people in this country, Joanne, and you must understand that.
More later.
Elena
-------------------- Justice will be ours. Posts: 786 | From UK | Registered: Oct 2007
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"UK National Health Service gov’t website currently states:
'Lyme disease can often be treated effectively if it's detected early on. But if it's not treated or treatment is delayed, there's a risk you could develop severe and long-lasting symptoms.
If your symptoms are particularly severe, you may be referred to a specialist to have antibiotic injections (intravenous antibiotics).'
Optimisitck, I dont know whether you read the rest of that document (which is NOT a policy document at all and NOT content written for doctors' consumption either). But in any case, you have quoted only a very small part of it. Here's what is says about treatment, in the very same document:
From NHS Choices, downloaded today :
"Treating Lyme disease
If you develop symptoms of Lyme disease, you will normally be given a course of antibiotic tablets, capsules or liquid. **Most people will require a two- to four-week course, depending on the stage of the condition**.
If you are prescribed antibiotics, it's important you finish the course even if you are feeling better, because this will help ensure all the bacteria are killed.
If your symptoms are particularly severe, you may be referred to a specialist to have antibiotic injections (intravenous antibiotics).
Some of the antibiotics used to treat Lyme disease can make your skin more sensitive to sunlight. In these cases, you should avoid prolonged exposure to the sun and not use sunbeds until after you have finished the treatment.
There's currently no clear consensus on the best treatment **for post-infectious Lyme disease** because the underlying cause is not yet clear. Be wary of internet sites offering alternative diagnostic tests and treatments that may not be supported by scientific evidence."
Asterisks mine.
Okay. First of all, before you jump up and down because it says the patient "may" get IV treatment, you should know that it's incredibly rare for anyone to get that here, rarer still for anyone beyond the earliest stages to get it, and almost unheard of that anyone seronegative with chronic Lyme will get it.
And totally unheard of that they would get long-term IV treatment. As I said, the only ones Ive come across in 13 years are the dying woman who got the national TV interested in her rally, and Joanne (although I dont actually know if you got long term IV or long term oral, Joanne).
To get back to the small bit from that document which you, Optimisitik, quoted:
"But if it's not treated or treatment is delayed, there's a risk you could develop severe and long-lasting symptoms." Please note this ONLY applies to people who have NEVER had ANY treatment.
If you approach a doctor and report a tickbite, symptoms which he accepts as Lyme-like (which may be no more than 1 or 2, depending on the doctor), and you have had them for a year but NEVER had treated, then you might get your regulation 2 weeks and then be told to be on your way.
If you're at death's door afterward, you might - just might - be allowed another 10 days - but no guarantees.
If you approach your doc but it turns out you already HAD some abx - you'll get shown the door pretty sharpish.
Now look at this sentence again:
"There's currently no clear consensus on the best treatment **for post-infectious Lyme disease** because the underlying cause is not yet clear."
It's not even "post-treatment Lyme". It's "post-infectious lyme"
That's even worse than Steere/CDC's terminology.
Note there's NO mention of any other possiblity for your continuing symptoms other than "post-infectious lyme".
Does that clarify things for you all a bit more?
Elena
-------------------- Justice will be ours. Posts: 786 | From UK | Registered: Oct 2007
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posted
Now, I have a few questions for Optimistick re her posts:
1. You have said that in the US, the legislation that binds non-profits obliges LDA to show "balance" and to fulful this requirement they must do things like invite top Denialist Tim Brooks to their conference, in order to retain their non-profit status.
a. Can you point me to the exact wording of the official regulations for US non-profits that you believe obliges LDA to do this?
b. ALDF, as everyone knows, is a fake Lyme campaign set up by Phil Baker, and several other of the most guilty Denialists on the planet. They function to disseminate misinformation about Lyme. They are also a non-profit 501 :
"The American Lyme Disease Foundation, Inc., a tax-exempt 501(c)(3) organization, offers vital educational programs and services to the public, government agencies, and medical community.."
Can you please tell me how many ILADS doctors they have invited to speak at their conferences in recent years?
Do they organise CME for doctors at academic institutions? And if so, have they ever invited Dr S, for example, or Dr S, or Dr B, or Dr M, or any ILADS member or doctor who believes in chronic Lyme infection to give a CME?
I recall that some years back, when a few of us were complaining about the UK campaign, Lyme Disease Action's refusal to do any protests or rallies (some people here call it Lyme Disease Inaction), somebody piped up on a Facebk forum and said they had no choice, they were forbidden by our Charities Commission (which oversees UK non-profits) to engage in any type of "political action".
I expressed surprise, as many non-profits here hold rallies all the time or make very prominent political statement. For example there was an extremely well-publicised demonstration recently by a non-profit protesting against violence against women, with top politicians and celebrities involved.
Later, I was involved in setting up a non-profit myself, and had to get my head round the regulations.
I discovered that the idea that a nonprofit here may not engage in any political activity is not true at all.
The ONLY prohibited activities are those which involve openly campaigning for a political party.
So I wonder whether someone could have misinformed you about the nonprofit rules in USA, as they did me about the UK laws?
2. Can you point me to the exact wording in the regulations for CME's that you believe obliges LDA/Dr ****** to invite Brooks?
Some years ago, I decided to sign up for an online American Lyme CME. Of course I'm not a doctor, my background is in nursing, and this was the nursing equivalent.
I was disgusted at the course, which was misinformation from start to finish.
Now, if I had been a nurse practicing in the US, I might have been compelled to tick the boxes on all the wrong answers, else be refused the certification.
Where was the balance there? (I dont expect that most establishment bodies conducting medical CME are any different either, are they?)
3. You mentioned that LDA has helped many children receive their "initial" treatment. What happened next?
Presumably they weren't all cured in 2 weeks. How many needed further treatment? Did they get it? Was it enough?
I am just wondering, because US friends tell me there are only TWO Lyme-literate paediatricians in your ENTIRE country.
And one of them, Dr CR Jones, has been persecuted so mercilessly for years by Dr Brooks co-thinkers in your country, that it's hard to imagine he has much time to treat children in between simply trying to retain his license amid the onslaught of false accusations.
4. When I mentioned I was shocked that Dr ****** uses phrases like "sensitive Elisa", you said words to the effect that there might be such a thing. (I'm not clear if you mean now or the future).
Its been the consensus of ILADS for decades that the Elisa is NOT sensitive in Lyme. I wont go thru the huge long list of reasons why right now (and as a scientist Im sure you know them).
But lets just take one.
Lyme borrelia come in 100s of different strains,which are genetically heterogenous and therefore their antigens differ. Thats one of the main reason the Elisa fails. Wheres the sci. evidence that its possible to create a sensitive Elisa?
Elena
[ 08-23-2015, 12:28 AM: Message edited by: Lou B ]
-------------------- Justice will be ours. Posts: 786 | From UK | Registered: Oct 2007
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OptiMisTick
Frequent Contributor (1K+ posts)
Member # 399
posted
I stopped reading after this phrase:
"As explained, I dont have the luxury of being able to work 16 hrs a day on Lyme. I have to support myself, and also spend time on various measures to psychologically heal my destroyed family, destroyed by Lyme Denial."
You are not writing anything that anyone over here hasn't been through.
It's unfortunate - the implied "rich American" card.
We have a more entrenched establishment over here - your Brooks hasn't even published in peer-reviewed journals or travelled to other countries engaging in obfuscating anything to do with tickborne diseases.
You want us to spank him for you.
You have an entire country full of folks with tickborne diseases. You have a conference coming up in another month.
You can either learn to work along with other people toward common goals you identify, or you can post all over the internet and ask a different continuent to take care of your guy for you.
It's hard work actively, emphasize actively, working to improve the Lyme and Tickborne diseases situation. Most people who are working at it have a few nights a week where their family eats cereal, or their husband does the housework, or the kids carry Mom's dinner up to her bed.
This is not fun. To imply anything else is sad.
But sick people do what they can. They work together.
You should too.
There are plenty of materials available on how to form and run a group.
Sick people actually do figure out what they CAN do and pitch in.
The point is work together toward goals for your country that you are familiar with over there.
It's just silly to come over here and post on whatever boards you can find for someone to do the work for you.
Meanwhile you have people over there actively putting together a conference right now. I bet they could use some extra help and you could get to know others, perhaps determine who shares your philosophy.
There are people over here actively putting toegether a conference right now and I have news for you, most of them are sick too.
Instead of always tearing down things over here, which you don't understand, and over there - where you claim the Lyme folks are not sympathetic to you - why not get to know some of them and find common ground.
Then take it from there.
I wish you well. But asking folks in the USA to spank your Brit for you - that's a little far fetched.
Demanding a conference be changed when you don't even know how conferences work - also far fetched.
People on both sides of the pond can work with their nearby Lyme folks and accomplish quite a bit.
Work for the positive.
I can't do this any longer for now, I have to go eat my Bon-Bons and sit by the pool.
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OptiMisTick
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Member # 399
posted
PS. You are welcome to invite Dr. Steere to speak over there.
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Brooks is a big baffoon, just like some of the Hopkins, Yale and other toads who have been speakers at the LDA conferences in the past.
The question is, do you want to pay to go to a conference to hear a big buffoon speak? I don't. Actually there are a few other idiots there, but that is normal for an LDA conference. That's what they do.
I got in a big argument with some guy outside the conference hotel one day cause he was saying tests were accurate, blah blah blah. I told him what I thought of him, his stupid theory and Dupont Children's Hospital where he mentioned he worked. Two hours later he stepped on stage to do his presentation. I didn't know he was one of the speakers, so you get all kinds.
I think the worst one was a duck from Hopkins. He started out saying something incredibly stupid, right off the bat, and everyone was pretty horrified and started boo'ing him. He immediately said he knew nothing about lyme- he was only there to talk about blah blah blah. I used my 2 big feet and took off out of there along with a number of others.
I doubt seriously anyone will un-invite the buffoon. I'd bet the farm on it actually. But, do let your voices be heard! We don't need any more buffoons here in the USA, we have our own to contend with.
The best we can hope for is on his flight over he needs to use the plane's restroom and forgets to wear his glasses and opens the exit door instead. SPLASH, right into the Atlantic he goes. HA!
You can always do what I've done in the past... when it is his turn to speak, which is just before the lunch break, get up and walk out.
Plan an extra long lunch break with your friends or go rest in your room. Or go outside and dance in the sunshine. I've seen some mighty fun bell-boys at these places, really good entertainment. (And what happens in RI, stays in RI.)
I don't recommend making quacking sounds as you exit the room when Mr. Baffoon gets up to speak- I got chewed on for doing that at least once, but it was kinda fun. ~smile~
Personally, I'd go to this conference even with the typical idiots and baffoons just to hear the 9:30 AM Saturday speaker- Dr. Z. He should be worth the money. Dr. Z and all that nice food that's available would make me happy.
In my opinion Dr. Z is on the right track and will be the one to help us a LOT in the search for a cure. He is almost done with his last grant, so he needs $$. And Auwaerter (Hopkins) won't be there pinching his behind while he is trying to do his talk- a good thing.
I'd pay the full fee- which, btw is much less than all other conferences- just to be able to hear Dr. S and the sexual transmission talk. I understand he has stuff to share that hasn't been published. And Dr. D with his opinion Lyme is NOT sexually transmitted right afterward. Holy cow on that!
I adore both these doctors for all the work they've done and their contributions- so it should be very interesting.
I wouldn't give you a nickel for Dr. S at 7:30 in the morning on Sunday, but I wouldn't give a nickel to hear Santa Clause that early in the morning either. Sleep in, but be aware the coffee and breakfast food may be gone if you arrive late.
I'd like to hear the talk on "eyes" on Sunday- rare to get that opportunity, but not the meat allergy/tick bite talk that same day. I am not convinced at all on that theory.
Dr. B on bartonella- a definite go. This is the guy who looks at porpoises to find tick borne diseases- and does. Think about that. He is just weird enough for me. I'd rank him HIGH up on the Bartonella info scale too. Top notch.
And the Borrelia miyamotoi talk by someone who has been pushing to get blood donors screened for Babesia- a must see. My bet is many seronegative folks have this, rather than Bb or in addition to Bb.
And the Tulane person (Dr. R) on inflammation, pain and neuro Lyme- a must see. They are doing excellent work there. It would be an honor to see even one of them.
The biofilm speaker- Dr. L- eh- rather see Eva Sapi as her work is amazing- but he might be ok on biofilm info, but he is into patents, vaccines and drug companies, so eh?
He did, however, and is one of only a few, confirm ticks other than deer ticks carry B. burgdorferi. That's my kinda guy. Let's kick sand in the IDSA's face on that one!
And Dr. Fal- he is one of the most dedicated hard working researchers you'll ever find. I wish we had a million more just like him.
So beat the stuffing out of big buffoon all you want, but go for the other good stuff. It is well worth it.
posted
Thanks for everyone's input here! I was wondering. I'm still wondering why they invited an apparently champion denialist. We don't need to hear them, if that's what he is.
I'm not questioning the conference, or all the work that goes into it - many thx to Lyme advocates, but why invite a denialist to speak? We want to hear people who have something to contribute.
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TNT
Frequent Contributor (1K+ posts)
Member # 42349
posted
quote:Originally posted by Robin123: Thanks for everyone's input here! I was wondering. I'm still wondering why they invited an apparently champion denialist. We don't need to hear them, if that's what he is.
I'm not questioning the conference, or all the work that goes into it - many thx to Lyme advocates, but why invite a denialist to speak? We want to hear people who have something to contribute.
Bingo, Robin! I think this is exactly what Eight Legs is trying to get across...and I think she has done a good job of it.
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beaches
Frequent Contributor (1K+ posts)
Member # 38251
posted
Ditto Robin and TNT. My sentiments exactly.
Thank you Eight Legs Bad.
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OptiMisTick
Frequent Contributor (1K+ posts)
Member # 399
posted
Asked and answered.
For those who came in late, see above.
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Ann-Ohio
Frequent Contributor (1K+ posts)
Member # 44364
posted
Oh, Tincup, you are the best pre-event-reviewer I have ever known!
Sometimes it is just fun to watch the denying people get their come-up-ance.
Wish I could go! At one conference I got to ask this question of the panel of all the presenters at the end of the whole thing:
" At what point does post-lyme-disease-syndrome commence?"
Lots of rewarding squirming of all the panelists who believed in that! The others suppressed smiles.
-------------------- Ann-OH Posts: 1584 | From Ohio | Registered: Aug 2014
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"You can either learn to work along with other people toward common goals you identify, or you can post all over the internet and ask a different continuent to take care of your guy for you."
I'm not clear who you are suggesting I work with towards common goals.
Brooks?
There are NO common goals between me and Brooks, nor between ANY Lyme Denial victim and Brooks (though some have been tricked into thinking that there are.)
I resent you constantly telling me to get off the forum. I have been here since 2007, and this is the first time I have ever been told I am not welcome because I dont live in the US. When I see a sign on the Homepage saying the forum is only for residents of the United States, then I'll go.
Till then, I'm afraid you are stuck with me and the many many other members who have been here for years, and hail from other countries.
Elena
-------------------- Justice will be ours. Posts: 786 | From UK | Registered: Oct 2007
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posted
"Meanwhile you have people over there actively putting together a conference right now. I bet they could use some extra help and you could get to know others, perhaps determine who shares your philosophy."
The conference you're referring to is by Lyme Disease Action. They are the group I spoke about before, who have moved so far into the arms of the Denialists that they could put on a show called "The Ventriloquist's Dummy" - Brooks being the Ventriloquist, and they as his Dummy.
As explained, they have bent over backwards so much to show Brooks and PHE they will "work together" with them, that they have even denied decades of peer-reviewed proof of maternal-foetal transmission of Lyme to please Brooks - an absolute disgrace with a REAL tangible effect of morbidity and mortality of children.
Elena
-------------------- Justice will be ours. Posts: 786 | From UK | Registered: Oct 2007
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posted
Btw Optimistick, you missed my list of questions. So here they are again:
1. You have said that in the US, the legislation that binds non-profits obliges LDA to show "balance" and to fulful this requirement they must do things like invite top Denialist Tim Brooks to their conference, in order to retain their non-profit status.
a. Can you point me to the exact wording of the official regulations for US non-profits that you believe obliges LDA to do this?
b. ALDF, as everyone knows, is a fake Lyme campaign set up by Phil Baker, and several other of the most guilty Denialists on the planet. They function to disseminate misinformation about Lyme. They are also a non-profit 501 :
"The American Lyme Disease Foundation, Inc., a tax-exempt 501(c)(3) organization, offers vital educational programs and services to the public, government agencies, and medical community.."
Can you please tell me how many ILADS doctors they have invited to speak at their conferences in recent years?
I wonder whether someone could have misinformed you about the nonprofit rules in USA, as they did me about the UK laws?
2. Can you point me to the exact wording in the regulations for CME's that you believe obliges LDA/Dr ****** to invite Brooks?
3. You mentioned that LDA has helped many children receive their "initial" treatment. What happened next?
Presumably they weren't all cured in 2 weeks. How many needed further treatment? Did they get it? Was it enough?
I am just wondering, because US friends tell me there are only TWO Lyme-literate paediatricians in your ENTIRE country.
And one of them, Dr CR Jones, has been persecuted so mercilessly for years by Dr Brooks co-thinkers in your country, that it's hard to imagine he has much time to treat children in between simply trying to retain his license amid the onslaught of false accusations.
4. When I mentioned I was shocked that Dr ****** uses phrases like "sensitive Elisa", you said words to the effect that there might be such a thing. (I'm not clear if you mean now or the future).
Its been the consensus of ILADS for decades that the Elisa is NOT sensitive in Lyme. I wont go thru the huge long list of reasons why right now (and as a scientist Im sure you know them).
But lets just take one.
Lyme borrelia come in 100s of different strains,which are genetically heterogenous and therefore their antigens differ. Thats one of the main reason the Elisa fails. Wheres the sci. evidence that its possible to create a sensitive Elisa?
[ 08-23-2015, 12:30 AM: Message edited by: Lou B ]
-------------------- Justice will be ours. Posts: 786 | From UK | Registered: Oct 2007
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posted
Optimistick, please dont try to make this into a British vs Americans thing - it's not , and that's not constructive.
Why on earth would you imagine that I would want to invite Steere? I was being sarcastic.
But it would not surprise me if in a year or two, Lyme Disease Action - the group you suggested I work for in building their conference - invite Steere.
They are the group here that Dr ****** has teamed up with.
I was not suggesting that all Americans activists are rich, or even that you are . (I dont know anything about you, other than that, as you said, you are a scientist).
I have spoken to 100s of American Lyme victims in the past 13 years, became friends with many, and read 1000's of posts by US patients.
My impression is the vast majority are not only not rich, but are suffering incredibly, and that things are pretty awful in USA - not the "tremendous achievements" you seem to think LDA has made.
LDA-UK also brag about their "tremendous achievements".
There is NOT ONE SINGLE LLMD in the entire National Health Service here. So where are the "tremendous achievements " here?
You appear to have only TWO LL paediatricians for the whole country in the US. And very few LLMDs for adults - I know that, because Americans are forecver telling me of the epic journeys they have to make just to see a doctor, and many cant go anyway as they're too sick or dont have the money, as your insurance companies wont pay.
(We have a nationalised health service, so we would not have that problem, but O'Connell and Brooks between them have ensured we don't have a single doctor in it.)
The few American LLMDs who haven't been persecuted into oblivion often have to skulk around like secret agents - just witness what goes on here, where we dare not say the full name of a doctor, in case one of the Denialists' spies hunts him down and gets him framed on some trumped-up disciplinary charges.
So where are the tremendous achievements for you?
Sure, people who are extremely sick can campaign - many do , both in USA and here.
But the extremely sick are not physically able to work 16 hrs a day for a cause - that is people in excellent health. And unless you're eexecutive is solely composed of retired people, then they must also be people with another means of supporting themselves other than working for a living.
That creates the potential for a conflict of interest. and a gulf between them and the grassroots they are supposed to represent.
A problem arises when those in the leadership of a campaign have a very different situation from the people they are representing.
A good example - Joanne, who is among the 0.00001 pecent of Lyme patients who receive free NHS long-term treatment in this country, tells us that the policy of trying to "work together" with Brooks has made wonderful gains (where are they?), and that he is likely to change and grow, like an ugly duckling transforming himself into a beautiful swan.
Those who have not had such good fortune as Joanne dont see the situation in such rosy terms, and are less inclined to trust the likes of Brooks, who maintains them in their misery.
Brooks been on the "throne" for 3 years now. In that time, he has not budged the UK policy of "chronic Lyme does not exist" - "no one with late Lyme is seroneg" ONE INCH.
I'll bet you anything the ugly duckling - if people dont manage to oust him - just grows into an even Uglier Duck.
But your LDA and Dr ******, giving him credibility he does not deserve, and helping to confuse people as to what he actually is just makes our job harder. on that score.
And yes - in response to your personal attack on me - I do know how organise a conference.
I was the main organiser of a very successful conference of the Spirochaetal Alzheimer's Association here.
We did it with a tiny budget. We dont have an income of a quarter million dollars like your LDA.
Following our conference, one attendee who was a pharmacist got a very good letter on Borrelia published in his professional journal.
And we now have another attendee, a top Alzheimer researcher in this country, so interested in Dr MacDonald's work that he wants to search for Borrelia himself.
Those kind of things can potentially turn the whole thing around - not just for dementia sufferers, but for us ALL.
Shoring up and promoting Britian's chief Denialist does the opposite.
Elena
[ 08-23-2015, 12:36 AM: Message edited by: Lou B ]
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posted
Another issue - on the very same page where LDA/Dr ****** describe the "Objectives" of this particular CME, they say that one of their aims here is to raise awareness of some promising vaccines.
Which promising vaccines?
Many many LLMDs believe it's not possible to make a safe and effective vaccine for Lyme at all.
With the 100s of known strains, heaven-knows-how-many unknown, and now, we must admit, the understanding that Lyme can be caused by a Borrelia that is NOT EVEN PART OF THE Bbsl group - (eg miyamotoi) - how can anyone create a vaccine when all the antigens are so heterogeneous?
Not to mention other issues, like antigenic variation, cell-wall deficient forms that will not have the vaccine-targeted antigens exposed, cystic forms that may also not have them exposed....
So which vaccines are LDA wanting to promote at this conference? Are they based on OspA - that poisonous molecule that caused thousands to get ill last time?
Elena
[ 08-23-2015, 12:33 AM: Message edited by: Lou B ]
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Tincup, I like your idea of everyone boycotting Brooks' talk.
If the LDA and Dr ****** refuse to retract the invite, then I would urge everyone who attends to do the most dramatic walk-out you can manage, the moment he takes the podium.
A few quacking sounds wouldnt go amiss either.
But if "Dr ***" means ******, Im surprised you still admire him. Have you seen his latest stuff, condemning igenex and talking of the "sensitive elisa"?
[ 08-23-2015, 12:35 AM: Message edited by: Lou B ]
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TNT
Frequent Contributor (1K+ posts)
Member # 42349
posted
quote:Originally posted by Eight Legs Bad: And yes - in response to your personal attack on me - I do know how organise a conference.
I was the main organiser of a very successful conference of the Spirochaetal Alzheimer's Association here.
We did it with a tiny budget. We dont have an income of a quarter million dollars like your LDA.
Following our conference, one attendee who was a pharmacist got a very good letter on Borrelia published in his professional journal.
And we now have another attendee, a top Alzheimer researcher in this country, so interested in Dr MacDonald's work that he wants to search for Borrelia himself.
Those kind of things can potentially turn the whole thing around - not just for dementia sufferers, but for us ALL.
Shoring up and promoting Britian's chief Denialist does the opposite.
Elena
Very good, Elena! Your hard work is definitely appreciated, how ever obscure as it may seem!
We know all too well how obscure and invalidated Dr. MacDonald's research has been made to seem. Yet, the truth will be validated, as his work is TRUE science! He is not caught up in any political games.
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posted
I know this is a difficult discussion for some, but I think every movement is made stronger by worthy evaluation.
So in the spirit of knowing what we're dealing with, this is an important conversation to have here if indeed truths about Lyme and co-infections are being covered up by those with another agenda.
I thank everyone for hanging in here as discussion continues.
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posted
I'd like to thank Robin for allowing this debate, and everyone here who has supported me.
While we're waiting for Optimistick to answer the numbered questions, I'd like to share the following with you, as it's ABSOLUTELY relevant to this discussion.
Every person hurt by the Lyme Denial needs to understand something called the Stratfor Strategy, and how it is being used against us.
I'm not alleging that the company Stratfor itself is being used against us (though it's possible). The point is, the strategy itself is being employed, regardless of whether or not Stratfor is.
Stratfor is an intelligence analysis firm which is regularly hired by some of the most powerful entities on earth - giant corporations, governments, etc..
It has its roots in a philosophy laid down by a US military intelligence officer called Rafael Pagan.
Pagan's company underwent various name changes over the years , later becoming MBD, and today it’s called Stratfor.
The Stratfor strategy is used to destroy grass-roots campaigns. For example, Stratfor was hired by Dow Chemical to destroy the protests over the Bhopal Disaster, where corporate negligence led to a massive leak of toxic gases that killed an estimated 15 000 people.
Stratfor has a network of spies internationally who join grassroots campaigns and try to subvert them. The Stratfor Strategy, which has often proved so successful in destroying grassroots movements that clients shell out 6 -figure sums for Stratfor's services consists of the following:
First, using espionage and hacking techniques, Stratfor tries to find out as much as possible about the most people involved in the campaign.
Next, the campaigners are divided up into 4 groups. The first 3 groups are courted and manipulated until their campaigning no longer poses any threat to the Client.
The fourth group aren't susceptible to this, so Stratfor tries to isolate them and stop anyone from listening to them.
Group 1 consists of people who can be persuaded that the Client is simply too powerful to be beaten. Of course history shows us that no one is invincible, but once a person has accepted that the Client is invincible, the only thing to hope for is that the Client can somehow be begged for a compromise of some type. So under the Stratfor strategy, Group 1 people - who are considered the most vital to court and promote - are conned into believing that if they only drop their hostility to the client and join in a “partnership” with the Client, great changes will result.
In fact, the Client does not have the slightest intention of making any real changes, but the new “partnership” serves to pull the rug from under the feet of the rest of the campaigners.
A perfect example of Group 1 thinking is those who say :
“Well, we are stuck with [fill in the name of any Denialist official or agency here], so the best we can do is to partner with them, invite them to address our conferences, hold events and produce pamphlets jointly with them, and perhaps one day they will learn something from some of our doctors.”
This is naivete at its worse, is hopeless and actively harmful to patients.
Group 1 people are then encouraged to go out and convince everyone else of the validity of their philosophy, and to suppress or persecute anyone who thinks differently.
So for example, Lyme Disease Action in UK boasts of the great progress that has come about due to its new-found “partnership” with Dr. Tim Brooks and Public Health England’s Lyme department.
In fact, no progress has occurred, and some things have got worse.
The official PHE position remains as it always has been – a complete denial of chronic Lyme.
There is no longer a single LLMD in the whole of Britain’s National Health Service. Even the tiny handful of private doctors who used to treat chronic Lyme, following a wave of persecution totally unopposed by the LDA -UK, have dwindled to almost nil.
Group 2 people, according to Stratfor, may not believe the Client is invincible, but they are individuals who can be tricked into believing that the campaign is somehow hurting those it is supposed to help.
So for example, campaigners against a corporation whose unethical methods have caused the deaths of people in Africa could be conned into believing that the bad publicity they are giving the Client will force it to withdraw altogether, hurting the economy and creating unemployment.
In fact the Client has no intention of withdrawing, but the Group 2 people are tricked and stop their activities for fear of harming Africans even more.
A Lyme equivalent would be the often-heard assertion that those who oppose a “coming together” with Denialists like CDC or Tim Brooks are harming the credibility of the patients’ campaign.
Group 3 people are the easiest to deal with, according to the Stratfor Strategy. These are people who only joined the campaign for their own selfish reasons, and don’t really care if it succeeds or not.
An example would be a politician who speaks out passionately for Lyme patients during an election, then, once elected, does an immediate about-face.
Finally, Group 4 are the people that pose the most threat to the Client. These are people (in the Stratfor’s philosophers’ own words) who are committed to social justice(!)
They cannot be bought, conned or manipulated into doing the bidding of the Client. The Stratfor Strategy calls for them to be isolated and “eliminated” – by harassment, character assassination, or, if necessary, something worse.
John Stauber, who investigated Stratfor, and is author of the book “Trust Us, We’re Experts!”, has written:
“The Pagan/MBD/Stratfor operatives are much more sophisticated about social change than the activists they oppose, they have limitless resources at their disposal, and their goal is relatively simple: make sure that ultimately the activists fail to win fundamental reforms...Duchin and Mongoven were ruthless, and I think they were often amused by the naiveté, egotism, antics and failures of activists they routinely fooled and defeated. Ultimately, this is war, and the best warriors will win.”
An example of a Group 4 person is Dr Alan MacDonald. He is committed to justice for Lyme patients, and cannot be bought. His research poses a huge threat to the Denialists, as it is in incontrovertible proof that Lyme is a persistent infection capable of causing a range of serious and/or fatal diseases from MS to stillbirth to Alzheimer’s.
Therefore the Denialists attempt to isolate him not only by using their EIS network to stop the major medical journals from publishing his findings, but crucially, by trying to use their newly-converted Group 1 puppets to denounce him.
Thus Stella Huyshe-Shires, head of Lyme Disease Action, publicly insulted Dr MacDonald, accusing his work of not being “evidence-based”, a charge so absurd that she ended up with a near-mutiny on her hands, with dozens of British Lyme patients dissociating themselves from her statement. She had to publicly retract and apologise to Dr MacDonald.
So the essence of the Stratfor strategy is to court people who can be either tricked or bought, and then use them to either transform the existing campaign into a weak and toothless “partnership” with the Client, or to start a new puppet campaign with the Client pulling the strings.
It’s absolutely essential to understand that this IS the strategy being used against us. Once you understand what is going on, you can prevent yourself from being conned in this way. There is no reason whatsoever to see the Denialists as invincible. Public health officials who harm the public can be fired; policies that maim and kill patients can be removed. But the first step is to recognise that NO gains will ever come of the supposed partnership. It’s a “deal” with only one winner – the Denialists.
---
I'd like to add that Marilyn/Joanne's statement here that "It does not help our cause to constantly attack the person who we need to help us" is a PERFECT example of Group 1 thinking.
Of course British Lyme patients NEED the public health official in charge of our Lyme policy to help us, just as American Lyme patients NEED CDC and IDSA to help them. But with the present people in charge of the Lyme department in those organisations, that ain't gonna happen.
Notice how Joanne simply cannot conceive of the possibility that SOMEBODY ELSE who, unlike Brooks, has a genuine concern for the public, could ever replace him.
Of course that won't happen easily. IMHO it requires a very comprehensive understanding of why Brooks, Beard, Steere etc do the things they do, and it requires a full expose of the coverup, with those people being publicly shamed and replaced with decent public servants who actually CARE about public health.
But if your starting point, like Joanne's here, is that it's **impossible** to expose them and **impossible** to replace them , then what are you left with?
Just a role as their puppet, advocating a meaningless, one-sided "partnership" with our biggest enemies.
The irony is that Joanne has forgotten how many times, in the 3 years Brooks has been on the "throne", he has dashed her illusions, refusing to "learn" from the best LLMDs in the world, whom he has ALREADY heard speak, and met in person, on many many occasions already.
His only reaction is to try and discredit them, as you can see in his official reports.
An exception is ******, but then ****** has travelled so far AWAY from Lyme-literacy that he is now writing papers about the "sensitive Elisa" - so it pays Brooks to court and promote him, in keeping with the Stratfor Strategy.
Poor Joanne once came back from a London conference in which Brooks was incredibly rude throughout the talks by several USA ILADS experts, who had come over specifically to help us.
He yawned and rolled his eyes during their presentation, and even seemed to go to sleep at one point.
Then when it was his turn to speak, Brooks attempted to trash what they had said.
Poor Joanne, who never normally swears, ended up on Facebook using words about Brooks that would make a seasoned sailor blush.
I'm not going to embarrass her by posting them here . (In any case I think profanity isn't allowed on this board).
But it's sad that all Brooks has to do is say a few charming words at a P-R session, and all the Group 1 people fall swooning.
We need to face reality. He's the British Steere, and he needs to go.
Elena
[ 08-23-2015, 12:36 AM: Message edited by: Lou B ]
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OptiMisTick
Frequent Contributor (1K+ posts)
Member # 399
posted
Pick one:
1) Once upon a time I had a three year old. As three year olds will, s/he would question me and, not liking the answer, would re;peat the question over and over.
It took some time before s/he finally caught on.
Asking the same question over and over doesn’t change the answer.
2) I started to answer some of the above, but unfortunately while I was lounging by the pool eating my Bon-bons, Stratfor* came by and sabotaged them, and now my fingers are numb.
My suggestion is 3)
The Desiderata
Go placidly amid the noise and haste, and remember what peace there may be in silence.
As far as possible without surrender be on good terms with all persons.
Speak your truth quietly and clearly; and listen to others, even the dull and ignorant; they too have their story.
Avoid loud and aggressive persons, they are vexations to the spirit.
If you compare yourself with others, you may become vain and bitter;
for always there will be greater and lesser persons than yourself.
Enjoy your achievements as well as your plans.
Keep interested in your career, however humble; it is a real possession in the changing fortunes of time.
Exercise caution in your business affairs; for the world is full of trickery.
But let this not blind you to what virtue there is; many persons strive for high ideals; and everywhere life is full of heroism.
Be yourself.
Especially, do not feign affection.
Neither be critical about love; for in the face of all aridity and disenchantment it is as perennial as the grass.
Take kindly the counsel of the years, gracefully surrendering the things of youth.
Nurture strength of spirit to shield you in sudden misfortune. But do not distress yourself with imaginings.
Many fears are born of fatigue and loneliness. Beyond a wholesome discipline, be gentle with yourself.
You are a child of the universe, no less than the trees and the stars;
you have a right to be here.
And whether or not it is clear to you, no doubt the universe is unfolding as it should.
Therefore be at peace with God, whatever you conceive Him to be,
and whatever your labors and aspirations, in the noisy confusion of life keep peace with your soul.
With all its sham, drudgery and broken dreams, it is still a beautiful world. Be cheerful.
TNT
Frequent Contributor (1K+ posts)
Member # 42349
posted
Bummer! I was hoping to see some answers to those questions.... the poem seemed like a way to sidestep the questions-or, perhaps an admittance of defeat.
Some of us did comment late in the thread, but I have been following all along. I did not see any answers to those questions further up in the discussion as was inferred. The only thing I noticed was an accusation that Eight Legs wanted us to "spank her Brit" for her.
I personally feel Dr. Alan MacDonald's letter of concern adds much weight to Eight Leg's objection. It's not just her beef. For this reason, I feel it is important to have answers to Eight's questions.
The Wiki article portrays Stratfor as a benign intelligence gathering company.
But, here is a link from the Wiki article that validates what Eight Legs was explaining about:
"The Wikileaks documents also showed us how corporations and government attack movements in a divide and conquer strategy that isolates those seeking transformational change (who they define as “radicals”). Here’s how we summarized the strategy introducing the article:
'Divide activists into four groups: Radicals, Idealists, Realists and Opportunists. The Opportunists are in it for themselves and can be pulled away for their own self-interest. The Realists can be convinced that transformative change is not possible and we must settle for what is possible. Idealists can be convinced they have the facts wrong and pulled to the Realist camp. Radicals, who see the system as corrupt and needing transformation, need to be isolated and discredited, using false charges to assassinate their character is a common tactic.'
Knowing that this is their strategy should help social movements combat it. Stratfor does the same – it looks at the strategies and tactics described in books, webinars and trainings to determine how movements operate, how strong they are and what to expect from them."
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"Asking the same question over and over doesn’t change the answer."
Optimistick, the truth is, you have not answered a SINGLE ONE of the questions which I have now listed twice for you.
Others have noticed that too, and user TNT has just voiced it.
My questions were important ones. I am going to give you one final chance to answer them, and then if you do not (or cannot), then we can only conclude that you DARE not.
In fact some people following this thread have already concluded that.
So here are my questions for the THIRD and LAST time, still unanswered. (I won't ask the moderators to take action over your further personal insults, your juvenile jibe about "three year olds".
I know plenty of three year olds who would avoid answering a question they did not want to answer by reciting an irrelevant poem. But generally, the questions they avoid don't happen to affect the lives of multitudes of people. )
1. You have said that in the US, the legislation that binds non-profits obliges LDA to show "balance" and to fulfil this requirement, they must do things like invite top Denialist Tim Brooks to their conference, in order to retain their non-profit status.
a. Can you point me to the exact wording of the official regulations for US non-profits that you believe obliges LDA to do this?
b. ALDF, as everyone knows, is a fake Lyme campaign set up by Phil Baker, and several other of the most guilty Denialists on the planet. They function to disseminate misinformation about Lyme. They are also a non-profit 501 :
Can you please tell me how many ILADS doctors they have invited to speak at their conferences in recent years?
2. Can you point me to the exact wording in the regulations for CME's that you believe obliges LDA/Dr ****** to invite Brooks?
3. You mentioned that LDA has helped many children receive their "initial" treatment. What happened next?
Presumably they weren't all cured in 2 weeks. How many needed further treatment? Did they get it? Was it enough?
4. When I mentioned I was shocked that Dr ****** uses phrases like "sensitive Elisa", you said words to the effect that there might be such a thing.. Wheres the sci. evidence that its possible to create a sensitive Elisa?
Do you seriously intend, in front of all those following this thread - and I can assure you, it's a lot more than the number who are actually participating - do you seriously intend to avoid answering every single one of them?
Elena Cook
[ 08-23-2015, 12:37 AM: Message edited by: Lou B ]
-------------------- Justice will be ours. Posts: 786 | From UK | Registered: Oct 2007
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posted
I'm particularly anxious to hear your reply, Optimistick, to the question on the Elisa.
You wrote:
"I’m hearing the ELISA has gotten a lot more sensitive, that in 2012 they developed a new, ultrasensitive, enzyme-based ELISA test which uses nanoparticles as a chromogenic reporter..."
Really? Just who are you "hearing" it from? Dr Ben Beard? Allen Steere? ******? ******'s recent co-author, a certain Gary Wormser?
It has been a CONSENSUS of Lyme-literate doctors for DECADES that the Elisa is MASSIVELY insensitive. Igenex will not even perform an Elisa unless a Western Blot is ordered with it, so concerned are they at its misuse to rule out Lyme.
It's a fair bet that many, if not most, of the tens of thousands of members of this forum had their lives destroyed BECAUSE of the insensitivity of the Elisa.
Or more accurately, because of the Elisa, which is inherently INSENSITIVE in Lyme, being used as a screening test to RULE OUT the disease.
So tell me, just what so-called "ultrasensitive Elisa" are you referring to?
We're very used to hearing about the alleged "ultrasensitivity" of the Elisa from Steere, from CDC, from IDSA, and from Tim Brooks.
More recently we start to hear it from Dr ******.
And now we hear it from someone at the top of the LDA hierarchy. Namely, you.
Do you mind explaining just what is going on?
Elena
[ 08-23-2015, 12:32 AM: Message edited by: Lou B ]
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posted
I wouldn't bother trying to defend Stratfor, Optimistick, by quoting some P-R guff written by their people.
User TNT has already posted one source, and in fact, it's a fairly easy matter for anyone to use Google and find dozens and dozens of reliable sources.
It's a matter of simple historical record now, of how Stratfor and/or its predecessors used that same Stratfor Strategy in such "worthy" causes as:
--- trying to knock down anti-smoking campaigns on behalf of the tobacco industry;
--- helping Shell oil shore up the racist Apartheid regime in South Africa;
---helping Nestle, who had incited an international boycott after its unethical marketing policies had been revealed to be the cause of mass deaths of babies in the poorest regions of Africa. Stratfor used their famous strategy to disorientate the protesters and destroy the boycott;
---assisting Dow Chemicals to decimate a grassroots campaign on behalf of the 15 000 victims of the horrific chemical leak in Bhopal, caused by their negligence.
Why are you trying to whitewash Stratfor, Optimistick?
Several MILLION emails belonging to Stratfor were leaked and handed over to Wikileaks, where anyone can read them today.
I have not actually said that Stratfor itself is involve in infiltrating the Lyme patients' movement. (If I had evidence of that, I would post it).
I would not rule it out though. I find it odd that a CDC Librarian appears to be one of their "sources".
But in any case, as I mentioned earlier, it does not actually MATTER if Stratfor itself is involved in trying to destroy us - it's their STRATEGY that is in use.
And very, very successfully too, for many years now.
Do you know, Optimistick, that since I was last on this forum, some VERY interesting documents have come into my possession?
They take the form of personal correspondence between leading members of the Lyme Disease Association and CDC.
And they validate what I have been saying here about the Stratfor Strategy ONE HUNDRED PERCENT!
Watch this space.
Elena Cook
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
WOW.
I love lively debate. too bad my brain cannot handle all this.
I have not read it all obviously, but one of the ifrts posts saying that "they" need to invite views from all sides to keep their non profit status does not surprise me nor make me question the validity of that statement.
this has been turning up everywhere. take radio for example when stricly conservative stations were forced , not too long ago, to cut back on the conservative shows and add liberal ones to balance things out because some people didnt like the AT&T sized monster that was growing- or whatever phone company that was that was forced to split.
just as a meager example.
A question I do have is this: if someone is invited to speak, does that mean they actually listen to other speakers? I mean, are they supposed to stay for entire thing and mandatorily attend each available talk?
sorry if that was addressed above. I could only get through about 1/3 of this before my brain exploded.
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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Well, I suspect there is no law that could be interpreted as forcing LDA, as a non-profit, to invite a person who openly espouses the idea that chronic Lyme does not exist, and who sets policies for the whole of Britain that condemn the entire chronic Lyme community to a lifetime of illness (and sometimes death).
Think about it. If every non-profit was required to include speakers who represent the polar opposite of what the non-profit is supposed to stand for, you would have animal rights campaign inviting speakers from hunters' guilds to lecture on the joys of hunting, you would have pacifists inviting top generals to extol the joys of war, and you would have your ACLU inviting leading dictators from around the world to explain the importance of torturing political opponents.
I think what Optimistick has said is simply not true, and I have asked her 3 times now to show me the exact wording of the law that she believes obliges LDA to invite the British Allen Steere.
I've had no answer as yet, nor to any of my other numbered questions.
That's why I mentioned the Denialists' phony "patients'" campaign, the ALDF, led by Phil Baker.
They are a non-profit too. Do they ever invite doctors from ILADS to speak?
With the current trajectory of LDA and ****** in US, and Lyme Disease Action in the UK, they could disband the ALDF and Baker could retire by the sea, relaxed in the knowledge that these will soon be doing the WHOLE (as opposed to part) of his job for him.
Elena
Elena
[ 08-23-2015, 12:30 AM: Message edited by: Lou B ]
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TNT
Frequent Contributor (1K+ posts)
Member # 42349
posted
quote:Originally posted by Eight Legs Bad: If every non-profit was required to include speakers who represent the polar opposite of what the non-profit is supposed to stand for, you would have animal rights campaign inviting speakers from hunters' guilds to lecture on the joys of hunting, you would have pacifists inviting top generals to extol the joys of war, and you would have your ACLU inviting leading dictators from around the world to explain the importance of torturing political opponents.
Sorry... I couldn't help but laugh at the absurdity of that!
If there is no law compelling LDA to host the IDSA viewpoint, then what in the world are they doing INVITING them??!!
I would have to agree that it won't be long until they are doing the denialists' bidding (at this rate). Posts: 1308 | From Eastern USA | Registered: Oct 2013
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LisaK
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posted
yes, that makes sense.
then again, not much makes sense in the world any more, so nothing would surprise me
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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posted
Is anyone communicating with the LDA about this matter?
Lisa - what makes sense is numbers - when there are large numbers of people concerned, the powers that be often back down.
For example, here where I live, a neighborhood didn't want another cell tower put in their neighborhood. They held meetings and 600 people signed a petition. The company decided not to put the cell tower there.
Another example recently - SF is being rampantly developed and pushing people out who have called the city home for decades. 15,000 signatures were gathered in 19 days to put a development moratorium for a particular district on the ballot!
If people feel strongly enough about an issue, it's called getting a numbers response. If you care about this issue, one place for numbers is the petition that Elena started, whose url is up at the top. The point of signing is to say that you are concerned about what's going on, if you are. The more that sign, the more a statement of concern gets expressed.
Another place for an expression of concern by numbers is at the conference. I personally do not believe that a conference should invite its opposite to speak, unless there is a good reason for doing so, like to have a rousing debate, or they actually have something new to say, and I haven't heard mention of neither yet.
Then after this event, for numbers to express to the LDA that short of a debate, or something the denialists have to offer us, to ask them to stop inviting the other side to Lyme conferences.
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
1. Make no mistake. There is no one on this planet who has done more for patients with Lyme than the LDA. Ever, anywhere. You only see about one tenth of what they do and 99% of it is perfect.
2. If you went to a special art museum show, entrance fee $40, you cant go in advance and make them put out only the items you want, it is their show. And if you attend it is extremely possible you won't like some of the art. That's life. You've got to suck it up buttercup.
3. If you purchase a fishing license and have not caught any fish all year you can complain like I like to do, but you can't get your money back. You can only go and hope for the best.
TNT
Frequent Contributor (1K+ posts)
Member # 42349
posted
quote:Originally posted by Tincup: If you went to a special art museum show, entrance fee $40, you cant go in advance and make them put out only the items you want, it is their show. And if you attend it is extremely possible you won't like some of the art. That's life. You've got to suck it up buttercup.
But if the art museum happened to be dedicated for the sole display of a particular family's personal art, then that curator would be responsible to showcase their art, not the art of the family across the street, and not art at odds with the family's interests.
A Henry Ford museum would not display Chevrolets except to showcase the inferiority of GM products.
(Of course, it would actually be to showcase the superiority of GM, since I am a Chevy man.) Posts: 1308 | From Eastern USA | Registered: Oct 2013
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
You had it right the first time. But then I am a Ford fan! Ha!
posted
I agree that the LDA has done great work! No contest there! And I hope the rest of the conference goes well.
What I am asking about - I also have traveled in the world, including in England. When I read Elena saying here that this invited speaker is responsible for people in England getting the short end of the stick - ie remaining sick and dying from these infections, then I too am asking, like she is, and like Dr McDonald is asking, why has he been invited to speak at a Lyme conference?
Does he have some new information to impart? If so, ok. We just want to know why he, as a reported denialist, has been invited to speak. No, I am not for Lyme denialists being invited to speak at Lyme conferences, not when we have so many who are good at research and clinical practice, who can talk to us about what's going on and what's new in the field.
I have not heard any answer yet. That's what I'm asking, and we are asking. Does anyone know? I would really appreciate hearing an answer as to why this is going on. Thanks.
[ 08-20-2015, 12:47 AM: Message edited by: Robin123 ]
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
Perhaps the reason as to why the question should remain open, is that an LDA member, or someone familiar with this conference, may be able to provide insight.
It is a fair and important question. If we cannot feel comfortable asking explanations from our advocates, who can we feel comfortable with?
We shouldn't have to work for the LDA, or pay them an admission fee, to get an easy answer to a simple question that potentially carries implications for Lyme advocacy beyond the those represented in the conference itself.
Posts: 228 | From Unitied States | Registered: Jul 2015
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