P2P workshop Dec. 9 & 10, 2014

[Wally]

Buchwald talking about twin studies again.

 

[Nielk]

Mary Dimmock. We need to look at autoimmunity and viral issues. Not GET and CBT.

 

[Valentijn]

Anyone got any more specifics on that argument?

Thanks for the comments.

I think it was Buchwald who said that a recovered patient commented that she couldn't do the same things she did prior to getting ill, 10 years earlier. Buchwald suggested that it's not reasonable to expect that anyone can do all the things they did 10 years ago.

It's a pretty common psychobabble tactic for claiming that someone is cured, despite ongoing disability.

 

[Hope123]

Go Nancy! Nancy Klimas is doing a good job challenging the "there are no biomarkers" misinformation

Yes, go Nancy, go!

The presenters repeating that there are no biomarkers reminds me of politics -- where if you repeat misinformation or lies enough, people will accept them as the truth -- rather than trying to get at what is really going on. Hopefully, the panelists aren't sheeple.

 

[Valentijn]

I don't think I've heard anyone put as much inflection into the word "funding" as Susan Vernon just did

 

[Nielk]

There will be a patient protest tomorrow against the P2P -http://www.meadvocacy.org/disabled_americans_protest_us_national_institutes_of_health_s_p2p_meeting

 

[Wally]

Hoping that Snell and Kogelnik will have strong presentations this afternoon.

3:40 p.m.
Leading Questions Always Collect Inaccurate Information:
Lessons From Current Treatments and Clinical Trials
Christopher R. Snell, Ph.D.
Scientific Advisory Committee Chair
The Workwell Foundation

4:00 p.m.
Comparative Effectiveness Research
Andreas M. Kogelnik, M.D., Ph.D.
Founder and Director
Open Medicine Institute

 

[NK17]

Dr. Kogelnik is coming up after the break.
Can hardly wait to hear him.

 

[NK17]

Hoping that Snell and Kogelnik will have strong presentations this afternoon.

3:40 p.m.
Leading Questions Always Collect Inaccurate Information:
Lessons From Current Treatments and Clinical Trials
Christopher R. Snell, Ph.D.
Scientific Advisory Committee Chair
The Workwell Foundation

4:00 p.m.
Comparative Effectiveness Research
Andreas M. Kogelnik, M.D., Ph.D.
Founder and Director
Open Medicine Institute

Our posts overlapped

 

[Esther12]

I think it was Buchwald who said that a recovered patient commented that she couldn't do the same things she did prior to getting ill, 10 years earlier. Buchwald suggested that it's not reasonable to expect that anyone can do all the things they did 10 years ago.

It's a pretty common psychobabble tactic for claiming that someone is cured, despite ongoing disability.

Often done with the patronising sense that patients do not have any understanding of the ageing process themselves, or are unable to compare their decline in capacity to others of their own age.

 

[Nielk]

Beth Smith -

Methods of diagnosis of mecfs.

Literature is very BROAD.

Clinical setting. Limitation is that it lacks gold standard. Currently there are eight and nine with gold standard.

 

[Nielk]

The accuracy of a test is based on sensitivity, specificity.

The studies that they observed were very small - less than 100.

Mostly wen and whites.

She has chart showing different symptoms required for the different criteria.

 

[Nielk]

She said all criteria. Except Oxford show PEM as a symptom.

I think that besides CCC and ICC it is an optional symptom.

 

[Nielk]

Stigma associated with diagnosis. Prejudice and stereotypes with diagnosis of CFS.

 

[Nielk]

Research needs:

No Oxford definition. ( keep the other seven?!)

Consider clinical subgroups. ( you think?)

 

[Nielk]

Dr. Snell-

It appears that GET and CBT has some benefits and nothing else works!!! ( from the review) (sarcastic)

 

[dancer]

Argh! My audio keeps cutting out...I'm really wanting to hear Dr. Snell

 

[Nielk]

It could be very harmful to many pTients. How is it that the review doesn't show this?

CBT and GET are the cheapest types of treatments.

Why did it show benefits? Poor patient selection.

 

[Nielk]

Florence Nightingale - tells a story physicians were asked can you attribute these so tomato anything else but poison?

They answered without knowing what condition the question represented.

This is because it was a leading question.

This is the problem with CBT and GET. The assumption is that mecfs is due to decinditioning.

 

[dancer]

I'm catching bits...he's doing a good job explaining the problem with PACE results and the false assumptions that ME/CFS is deconditioning