Topic: Responses to concerns on IOM Workshop process
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Questions I am getting by the bushel load. Oh my! I can't keep up! But that is good.. glad folks are concerned and are asking!
The Appropriations bill language stated the NIH/IOM workshop was to "... sponsor a scientific conference on Lyme and other tick-borne diseases that would represent the broad spectrum of scientific views on Lyme disease and include input from individuals with Lyme disease."
The ONE patient representative selected was given FIVE minutes for her presentation on the last day ... at the end of the day of a 2 day workshop.
Since this whole deal involves US and our futures... that is a real bad effort on IOM's part.
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
From an announcement sent out last night.... the quotes from it and my response. These are MY opinions.
"The IOM Lyme workshop is not a forum to debate whose science is right or wrong. It is, rather, an assessment of the state of the science as ****presented from all points of view***, for the purpose of determining the science and research still needed."
Question to ask yourselves... Is it REALLY being presented from "... all points of view..."?
No. It is a set-up with one point of view having the most time and weight. IOM members could have changed the venue when concerns were first made, but they refuse to even listen. They are not following the intent of Congress or the language in the Appropriations bill. Period.
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"If Lyme patients and Lyme doctors fail to participate.."
Those asked to make a submission for the workshop were "commissioned" by the IOM to do so.
If groups don't participate, they will not receive the $$ allotted to them for this purpose.
Personally, I think it sucks that the IOM thinks our participation could be bought and paid for, just so they can get brownie points for their efforts of having hosted a workshop ...
And right away when I heard of that deal I chose not to embrace it or be involved with any of their "dirty" money. That REALLY turned me off.
"If our Lyme doctors and advocates don't participate, the committee can't include them in the record and it will appear in the report as if we don't exist or care."
I really think after all these years they know we exist and that we care. Now, with the protest in motion, they know we exist and that we care. That point has been clearly made and will continue to be made.
I also feel that if we do participate then our names will be added to the final report and will be used to say we had a voice in this process....
And hence, the IOM will have fulfilled the requirement to include us. That is especially bad since we have NO chance of making a dent in the outcome.
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Continued...
"The IOM committee will accept comments for the record up to 3 or 4 days after the workshop. If you don't know what was said at the workshop, you cannot draw intelligent comments."
No clue what this means. "..cannot draw intelligent comments"??
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"Clinicians will have a microphone reserved solely for their use, with extra time allocated to their questions or comments which will be included in the final report."
Actually, the final report is NOT the final report. After all is said and done, the Panel's report goes to anonymous reviewers that will have input (or out-take) and then it is sent to the final destination as an official document.
We are not allowed to know the anonymous reviewers, nor see the report after it is adjusted to suit them. So, I am not sure we can honestly say clinicians comments "will" be included in the final report.
And by participating OUR names will be on that report.
"Lyme doctor participation is critical or the IDSA clinicians will be the only ones at the microphone and on record."
Since ILADS as an organization, and individual ILADS doctors, the three major Lyme groups with all of their affiliates (over 40), and numerous independent patients and support groups nationwide have already come out against it, who will be left to participate that is able to make even a tiny dent in Wormser or the IDSA... or this corrupt process?
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
"A Congressman ... Abandoning this workshop is abandoning him... This Representative needs Lyme community support at this workshop."
NO Congressional representative that is worth his weight and KNOWS what is happening here with the corrupt process would expect sick patients to volunteer to have a noose tied around their neck just to put on a "show" for him.
No Congressman with any decency would purposely want to throw us all in the pen with wolves and let us fend for ourselves.
IF there is such a Congressman, I want to know his name.
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"When you withdraw from the Washington process, you won't be asked back again.
GOOD! Until they clean it up, we should NOT try to make deals with the devil. It has not worked in the past and will not work now.
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"Each time this happens, we lose our ability to be taken seriously."
We were NEVER taken seriously and it won't start here... especially with this line-up of characters they have on the agenda.
"History shows that progress is made when we work within the system, not when we abandon it."
That is assuming there is a decent and fair playing field and holy cow, that just ain't the case here.
Many advances and changes have been made by not going with the status quo ... and until we address the underlying corruption we can't accomplish anything.
"Bottom line: the workshop will proceed with or without our community; without representation we concede to the IDSA."
Not at all. Not participating in this farce (one in a line-up of many) does not mean we concede to anything. We continue to fight, just not in this biased venue and in this corrupt manner.
posted
Tincup, thanks for sharing your perspective on these points.
One thing that is important about protesting is that it be noticed by as many people as possible...has there been any media or press coverage?...any plans for visible protests? I'm sure there are people working on this...
Posts: 688 | From Florida | Registered: Aug 2001
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Hey levity,
You are very welcome. Actually, lazy me... I am trying to save some work from having to respond to emails and posts all day... and just do it all in one shot. Glad it was understandable.
As for the media... yes... the original announcement from LDA, TFL and CALDA went out as a press release and from what I understand all group leaders have been contacted for interviews.
Most of them were contacted by decent reporters, but it looks like there is at least one set-up deal, like the Forbes article from a while back.
And do note- this isn't the only action that is going on... just one that patients can use to make their voices heard .. in the event they want to.
And yes, there are many people working on this... and who have been working on it since day one, months ago.
posted
My idea - contacting everyone in Congress about what is going on -
How about giving them a synopsis of what was submitted last summer at the hearings re the science and severity of Lyme and company?
In other words, why don't we go ahead and submit the info to Congress they should have gotten from us at the workshop? All the major Lyme advocacy groups could present the info together.
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
I think robin has a point here. How about a submission that will counter the IOM report when it is issued. A summary of the point of view that will not be in the IOM report.
It probably is already mostly available, could be a couple of pages and reference the material put together for the IDSA panel.
Sometimes there is a minority report that is part of a bigger report, but since we won't even get that recognition by the anonymous reviewers for the IOM proceedings, then it will have to be separate. And why in the world are there anonymous reviewers for a report order by Congress? Is this standard procedure? If so, why?
Posts: 8430 | From Not available | Registered: Oct 2000
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posted
They can have their crumbs. We want the whole sandwich. No one can live on a few crumbs. How pathetic that some are willing to accept this, how abject.
Posts: 8430 | From Not available | Registered: Oct 2000
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Sorry mjo...
Can't accept crumbs anymore. We will only get what we demand, so if we only expect crumbs that is all we will get.
At some point we all must stand up and say a huge NO to the IDSA and their corrupt ways... and take back our right to adequate health care.
They have had 30 plus years to do right by us and when given the opportunity they ALWAYS choose not to help us.
Enough is enough.
Plus, we've made our point in a great way. Kinda had our cake and ate it too.
We have our position all laid out .. and it is already IN the Congressional record in the format WE want... not their rendition of it.
And it was entered in the Congressional record before being able to be diluted by the IOM panel or their anonymous review panel.
And we took a stand and said NO MORE! We ain't being stupid and letting them walk all over us, NO MO!
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