posted
Dr. Eugene Shapiro speaking at Yale for their Epidemiology of Microbial Diseases Seminar Series:
The title is "Less is More: The Clinical Epidemiology of Not Lyme Disease"
Strange title.
It's for students only, my friend is attending for one of her classes. I'm curious if there will be a Q and A after.
I don't think I could go, I get really upset when people insinuate that I didn't rule out chronic fatigue or fibro or that it's psychosomatic. I did it 10 years his way, and got sicker. Because of doctors who hold his viewpoint, I was denied proper care for so long. I can only imagine what this talk is about.
-------------------- Sick since 2000 Bulls eye 2005 Dx Babesia, Lyme 2014 Posts: 247 | From New Hampshire | Registered: Aug 2014
| IP: Logged |
posted
Apparently it's required attendance for epidemiology students.
So shaping the future leaders in public health! I don't know how they still get an audience considering the science has moved on.
I saw a quote of his talking about how you need to rule out conditions like fibro and CFS...which was a bit strange to me considering that those are names to describe symptoms, not a disease itself.
I also wonder why if I don't have lyme, I have three bands on the western blot lighting up.
-------------------- Sick since 2000 Bulls eye 2005 Dx Babesia, Lyme 2014 Posts: 247 | From New Hampshire | Registered: Aug 2014
| IP: Logged |
poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
I agree. Not enough money in the world for me to listen to this imbecile.
Posts: 2888 | From USA | Registered: Mar 2004
| IP: Logged |
posted
I was almost tempted to go as a guest of a student, But alas too sick to deal. I have two friends in school there who attended, neither of them know much about lyme so they were interested in my opinion as someone from "the other side."
The gist of the talk was that these people are suffering from medically unexplained symptoms, but def not lyme as it is easy to treat and responds to antibiotics (klempner study quoted).
Essentially the symptoms that people associate with chronic lyme are an auto-immune response, either the idea of "post lyme treatment" or of some other unexplained nature.
A few animal studies were brought up, but they were poo pooed because animal studies aren't good (yet they cite a mouse study to prove their point?).
The usual "its all in your head" and that those who feel better due to antibiotics are undergoing a placebo effect. And that those who think they have lyme should "practice meditation", undergo stress evaluations and therapy.
Then my friend told me there was the usual emails on powerpoint from the lyme loonies, with lots of audience laughter on us crazies.
He talked about how lyme is only found in certain areas of the US yet there are lyme support groups all over the country and world, thus it can't be Lyme they are all suffering from.
-------------------- Sick since 2000 Bulls eye 2005 Dx Babesia, Lyme 2014 Posts: 247 | From New Hampshire | Registered: Aug 2014
| IP: Logged |
poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
It is too bad we can't infiltrate these brain washing sessions and boo, challenge a doctor who says these things about patients. He is teaching students to denigrate patients and not to look for the reasons behind all this. Talk about a poisonous man.
Posts: 2888 | From USA | Registered: Mar 2004
| IP: Logged |
Then my friend told me there was the usual emails on powerpoint from the lyme loonies, with lots of audience laughter on us crazies.
- Laughing at those who are ill. That is just great.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96233 | From Texas | Registered: Feb 2001
| IP: Logged |
GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
I agree wholeheartedly Poppy.
They spout off animal studies when it works in their favor, but poo poo them when it opposes their viewpoint.
Personally, if you ask any lyme patient-they will read any study on lyme, whether it agrees or opposes their viewpoint.
Quite often I would like to extend a challenge to Shapiro Wormser et Al.
Dear Shapiro Wormser et al,
Are you willing to accept this challenge? If you truly believe your studies and patient models, then we have a challenge for you to accept. It's an 11 year experiment. Well worth the wait.
"Lyme is easy to get rid of? Awesome! We'll put 10 nymph ticks in your bedroom. Statistically, 5-7 of those 10 ticks carry lyme. We'll do a tick check in 10 days."
"if you get an EM rash, you get 200mg of doxycycline for a week".
"if you don't get an EM rash, you get nothing"
"there's a 20-40% chance you'll get a rash but where's the fun in that? It's always better not to know"
"Then if you get a summer flu, you'll get advice to rest and let the "virus" run it's course. Antibiotic overuse is rampant and unnecessary. Besides, lyme is so easy to get rid of, you can pop some pills in 10 years and be well in a snap"
In a year, two years, five years, we'll recommend treatment for depression. Your persistent maligering will annoy us at that point, so we'll also recommend psychotherapy."
"you'll also be either overweight or underweight at this point, and exhausted, so we'll prescribe a physical trainer and a diet plan for you along with the antidepressents."
"after that, at year 10, we'll reccomend a good LL. Let's hope you have the money to pay for it, with all the sick time you've been taking off. If your spouse is still around at that point, maybe they can work two jobs to help pay for your treatment and the mortgage at the same time. If your spouse is feeling OK, considering the emerging evidence of spirochetes present in semen and vaginal secretions. (but you don't believe in that, so only time will tell)." "also, we'll test any children born to you and your spouse in the ten year period. (but you don't believe in that either, so only time will tell"
"also, they pain will be excrutiating at times. we'll call that post-lyme syndrome. And tell you to deal with it. Oxycontin and dialuid are addictive, don't you know. You should try meditation."
Anyways, good luck. It's what separates the denialists/aka non believers from the rest of us.
If you truly believe your studies and statistics, you will accept this challenge.
Sincerely, Greta M Canadian Lyme Sufferer, 11 years misdiagnosed.
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
| IP: Logged |
Then my friend told me there was the usual emails on powerpoint from the lyme loonies, with lots of audience laughter on us crazies.
- Laughing at those who are ill. That is just great.
I have read excerpt from his presentations before. How can you laugh at patients like that? And encourage future doctors or epidemiologist to look at people with unexplained symptoms with such disdain and derision?
This many people cannot be having psychosomatic symptoms. And many of them living in tick infested areas, with many of them having pulled ticks off them or seen the indicative rash?
That defies medical logic.
And ignoring studies that don't agree with your mindset and only quoting those that do, is unscientific. Also, statistically speaking, many of their quoted studies have issues with poor sample size or poor analysis.
Thus, it shows that more studies are needed to refine the results, not that those studies prove anything definitively, especially when other animal studies show the opposite.
-------------------- Sick since 2000 Bulls eye 2005 Dx Babesia, Lyme 2014 Posts: 247 | From New Hampshire | Registered: Aug 2014
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Quote: "This many people cannot be having psychosomatic symptoms." (end quote)
Well, they say it's mass hysteria, driven by the web & by support group "mentality". Really, that's what they say about the numbers.
So sad they teach laugher is okay directing it at those who suffer due to the IDSA doctors' & professors' willful ignorance and medical negligence.
Doubly sad, I am, that students did not call him out for such bad behavior. Creating an environment where laughing at patients is okay -- how is it that students are not raising their collective voices against that? Or has the "we're better because we wear white coats" potion already taken such hold?
I wonder if the "quotes" they use from patients are really or if they are embellished, too, to make the "worries" seem more foolish or out of context. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
I sat behind this idiot in court in Connecticut when he volunteered to testify against Dr. J and the children. I counted three lies right off the bat while he was under oath, and he didn't know the meaning of simple words like epidemiology! Total flake!
He is, in my opinion, one of the worst human beings on this planet, one of the biggest liars, and one of the most evil people I've ever known.
Please don't waste your time even thinking about him. He won't be around much longer (past retirement age) and hopefully his hateful spew won't infect too many more young minds in the meantime.
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- But now they are saying it's "converersion disorder" - as they did with the teens in upstate NY a couple years ago who became so ill along the same timeline (although many had later positive tests for various stealth infection involvement - such as PANDAS - missed by their primary doctors).
[DSM-V]. . . They are retaining conversion disorder . . . . -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
linky123
Frequent Contributor (1K+ posts)
Member # 19974
posted
If you can marginalize and ridicule a group of people, then this is a great way to discredit them.
-------------------- 'Come to me, all you who are weary and burdened, and I will give you rest.' Matthew 11:28 Posts: 2607 | From Hooterville | Registered: Apr 2009
| IP: Logged |
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Linky- they do this with parents of autistic children too. How cruel can they be?
lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
It took me this long to open this thread cuz the title made me so sick...like liter as lly...felt like i was gonna vomit
It was worth i guess cuz of chuckle rumi gave me
I remember all my big plans after years of living with what i knew was lyme...saving money, taking off work. Driving the 3 hrs eaxch way ... si i would finally get dx and tx and back to my life.
Whew...what a wake up call. Not lyme the yale experts said. Knocked the wind out of my sail...but i didnt give up. Im still here in spite of them...and so are many ppl special to me
What a ride.
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
| IP: Logged |
posted
I believe they think MUS are completely somatic, and the Internet is responsible for disseminating the "disease."
I believe MUS are overwhelmingly of some pathogenic origin and maybe genetic susceptibility to immune suppression or just exacerbated by chronic immune suppression.
I didn't end up here because I convinced myself I had all these symptoms, I ended up here after 14 years of misdiagnosis.
First it was chronic fatigue, then fibro, then in my head. Funny thing is, I found a group of people with the same type of symptoms.
The common demoniator was not the Internet and my female hysteria, it was being exposed to ticks multiple times and getting the rash.
If it quacks like a duck it's probably a duck
-------------------- Sick since 2000 Bulls eye 2005 Dx Babesia, Lyme 2014 Posts: 247 | From New Hampshire | Registered: Aug 2014
| IP: Logged |
lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
"I have read excerpt from his presentations before. How can you laugh at patients like that? And encourage future doctors or epidemiologist to look at people with unexplained symptoms with such disdain and derision?"
see...this is what i have tried to explain before about what happened to my kids in college science classes - some medical classes - at really good colleges...i called it brainwashing...but it is "disdain and derision" - thats exactly what it is. i have also called it disrespect. but it is so much more than that...they are super smart kids on IQ tests... i am very average and now below average with the head injuries...and its like they have their own private little club...everyone whispering and snickering about mom and her "illness"...when they are all in this smart peoples club ... but the thing is i know i am right. and over and over when they get into trouble with lyme i am the one with the answer. but as soon as they are ok again...they again deny it was lyme...must have been a virus or something ...it couldnt have been the abx that wouldnt make sense.
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
| IP: Logged |
linky123
Frequent Contributor (1K+ posts)
Member # 19974
posted
Tincup, sadly, as we all know they are very cruel.
-------------------- 'Come to me, all you who are weary and burdened, and I will give you rest.' Matthew 11:28 Posts: 2607 | From Hooterville | Registered: Apr 2009
| IP: Logged |
linky123
Frequent Contributor (1K+ posts)
Member # 19974
posted
Linky- they do this with parents of autistic children too. How cruel can they be?
quote:
Then my friend told me there was the usual emails on powerpoint from the lyme loonies, with lots of audience laughter on us crazies.
quote:
Ipkayak, I was referring to the above posts by tutu, and tincup referring to Shapiro.
-------------------- 'Come to me, all you who are weary and burdened, and I will give you rest.' Matthew 11:28 Posts: 2607 | From Hooterville | Registered: Apr 2009
| IP: Logged |
lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
Ok..ty...im having trouble thinking...
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
| IP: Logged |
linky123
Frequent Contributor (1K+ posts)
Member # 19974
posted
I can sure relate to that.
-------------------- 'Come to me, all you who are weary and burdened, and I will give you rest.' Matthew 11:28 Posts: 2607 | From Hooterville | Registered: Apr 2009
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/