P2P workshop Dec. 9 & 10, 2014

[catly]

Can someone remind me what the purpose of this P2P really is? To show the gaps in research? For what purpose? NIH is not funding any research anyway. This is a joke. A very sad joke.

You got it right--let's keep AHRQ and these other NIH/HHS departments funded with tax dollars and not be held to any accountable outcomes.

They've been doing this for decades.

AHRQ originally started by "reviewing the evidence" and issuing clinical guidelines, that insurance companies used to make coverage decisions, but they were quickly shut done by medical associations who challenged their recommendations.

So now they just do these evidence reviews, which all pretty much come to the same conclusions..."there is not enought evidence for/against xyz"... which might be helpful if they ended with NIH funding to research the gaps, but they don't. There is no connection between evidence reviews and NIH funding.

So we have waisted NIH $$ spewing out from all ends.

Government at it's best.

 

[Kati]

Twitter was a good hangout place with several people live tweeting on the P2P workshop. others were retweeting, therefore reinforcing important messages to the NIH officials.

tomorrow will be another good opportunity to tweet. Join #NIHP2P and have a say in the proceedings.

 

[Wally]

Can someone remind me what the purpose of this P2P really is? To show the gaps in research? For what purpose? NIH is not funding any research anyway. This is a joke. A very sad joke.

@Nielk,

What is the real purpose of this P2P? I don't have an answer to that question. But my friend
"Frank" is willing to share his thoughts with you.

Wally
P.S. Here is a selfie of Frank

___________________________________________________

Frank's thoughts on the "real purpose" of the P2P and the IOM.


ME/CFS Patients?

Lambs to Slaughter?

 

[Bob]

ME/CFS Patients?

lol, I know you're making a serious point, Wally, but they are the cutest ME/CFS patients!

 

[Wally]

@Bob,

Wally likes the cute pictures too. Frank (Wally's evil twin) is the one with a dry and wicked sense of humor.

Yours truly, Mary

 

[Wally]

How did one of the flock end up lost in Omaha, Nebraska?

http://www.dailymail.co.uk/news/article-2867633/Sheep-wearing-holiday-sweater-Omaha.html

 

[Valentijn]

To try to do the first three justice, or cut them some slack, I can look at their presentations as perhaps having a value in terms of a model for some research studies down the road.

They would have given a very different presentation in private. All three have published together, and shown a strong BPS belief - they believe that maintaining factors in CFS are due to thoughts and behaviors, all functional syndromes are the same psychosomatic disorder, and 100% of the symptoms which they acknowledge us as having are due to us being over-sensitized.

So they settled for peripheral topics while trying to imply that it's actually relevant, while inserting little BPS jabs now and again.

If they'd been more outspoken and even intelligible about those points when they implied them, they would have started a war in the lecture hall. I think they were relying on the panel members picking up on code words and implications, but that's only likely to work among people with a strong BPS background. So the panel members hopefully just found those three to be off-topic, annoying, and a bit bizarre.

 

[Hope123]

You got it right--let's keep AHRQ and these other NIH/HHS departments funded with tax dollars and not be held to any accountable outcomes.

They've been doing this for decades.

AHRQ originally started by "reviewing the evidence" and issuing clinical guidelines, that insurance companies used to make coverage decisions, but they were quickly shut done by medical associations who challenged their recommendations.

So now they just do these evidence reviews, which all pretty much come to the same conclusions..."there is not enought evidence for/against xyz"... which might be helpful if they ended with NIH funding to research the gaps, but they don't. There is no connection between evidence reviews and NIH funding.

So we have waisted NIH $$ spewing out from all ends.

Government at it's best.

,

The story of why AHRQ was shut down originally years ago is more complicated than that. AHRQ actually does a pretty good job of reviewing evidence most of the time -- I have read many AHRQ reviews over the years aside from this one. It's just that the amount, type, and quality of evidence in ME/CFS is not like that of a well-established/ well-researched medical condition like benign prostatic hypertrophy, urinary incontinence, high blood pressure, etc., all of which AHRQ wrote pamphlets on in the past. This is due to a number of factors that have already been mentioned -- psychogenic bias, poor funding, poor case definitions, et. So submitting ME/CFS to the type of review AHRQ is not really optimal.

AHRQ was shut down in my understanding not by medical associations primarily but by insurance companies, pharmaceutical companies, etc. that were not acting on the behalf of patients. For example, AHRQ sometimes recommended treatments or tests that insurance companies did not want to cover or, another example, vice versa,, they decided that the risk of some tests (e.g. x-raying every person with chronic back pain, exposing them to radiation) outweighed the benefits (e.g. leading to a specific diagnosis). X-ray companies and groups (including physicians) who owned x-ray facilities of course fought that as that would mean a potential dent in their income. In fact, AHRQ was one of the few government agencies that was well-respected for their ability to parse the data and come to conclusions.

 

[Roy S]

These twitter feeds can be read even if you're not a twitter member.

https://twitter.com/hashtag/NIHP2P?src=hash

https://twitter.com/hashtag/StopP2P4ME?src=hash

 

[Valentijn]

Day two starts in about 10 minutes (8:30 EST). The video stream is already up at http://videocast.nih.gov/live.asp?live=14727&bhcp=1 . It's a different link than yesterday I think.

8:30 a.m. Evidence-based Practice Center III: Treatment: Medications and
Complementary and Alternative Medicine (Heidi Nelson)

8:50 a.m. Evidence-based Practice Center IV: Treatment: Counseling Therapies and
Exercise (M.E. Beth Smith)

9:10 a.m. Reducing Patient Heterogeneity by Subgrouping (Benjamin Natelson)

9:30 a.m. Measures: Patient-Reported and Physiologic (Elizabeth Unger)

9:50 a.m. Innovative Approaches in Fatigue Research: Phenotyping, Biomarker
Discovery, and Statistics (Leorey Saligan)

10:10 a.m. The Role of the Immune System in ME/CFS (Mady Hornig)

10:30 a.m. Discussion

11:30 a.m. Break

 

[Nielk]

Today's meeting is starting now - 8::30 am HERE.

Today's agenda:


8:30 a.m. Evidence-based Practice Center III: Treatment: Medications and
Complementary and Alternative Medicine
Heidi D. Nelson, M.D., M.P.H.
Medical Director of Cancer Prevention and Screening
Providence Cancer Center
Providence Health and Service
Vice-Chair and Research Professor
Departments of Medical Informatics and Clinical Epidemiology
Pacific Northwest Evidence-based Practice Center
Oregon Health & Science University

8:50 a.m. Evidence-based Practice Center IV: Treatment: Counseling Therapies and
Exercise
M.E. Beth Smith, D.O.
Associate Professor
Department of Medical Informatics and Clinical Epidemiology
Pacific Northwest Evidence-based Practice Center
Oregon Health & Science University

9:10 a.m. Reducing Patient Heterogeneity by Subgrouping
Benjamin H. Natelson, M.D.
Director
Pain and Fatigue Study Center
Mount Sinai Beth Israel
Professor of Neurology
Icahn School of Medicine at Mount Sinai

9:30 a.m. Measures: Patient-Reported and Physiologic
Elizabeth R. Unger, Ph.D., M.D.
Chief
Chronic Viral Diseases Branch
Division of High-Consequence Pathogens and Pathology
National Center for Emerging and Zoonotic Infectious Diseases
Centers for Disease Control and Prevention

9:50 a.m. Innovative Approaches in Fatigue Research: Phenotyping, Biomarker
Discovery, and Statistics
Leorey N. Saligan, Ph.D., R.N., CRNP, FAAN
Investigator
Symptom Management Branch
National Institute of Nursing Research
National Institutes of Health

10:10 a.m. The Role of the Immune System in ME/CFS
Mady Hornig, M.D., M.A.
Director of Translational Research
Center for Infection and Immunity
Associate Professor of Epidemiology
Columbia University Mailman School of Public Health

Session 5: How are tools and measures used to distinguish subsets of patients with ME/CFS?
10:30 a.m. Discussion
11:30 a.m. Break
11:50 a.m. Identification of Subsets of Individuals
Nancy G. Klimas, M.D.
Director
Miami Veterans Affairs Gulf War Illness and ME/CFS Research Program
Professor and Chairperson
Department of Clinical Immunology
Scientific Director
Institute for Neuro-Immune Medicine
Nova Southeastern University

12:10 p.m. Subtypes of CFS/ME: New Discoveries and Unanswered Questions
Renée R. Taylor, Ph.D.
Vice Provost for Faculty Affairs
Licensed Clinical Psychologist
Professor
Department of Occupational Therapy
University of Illinois at Chicago College of Allied Health Sciences

12:30 p.m. What Outcomes Represent Improvement, Recovery, Prevention, Benefits,
or Harms?
Suzanne D. Vernon, Ph.D.
Scientific Director
Solve ME/CFS Initiative

12:50 p.m. Discussion
1:20 p.m. Workshop Wrap-Up/Next Steps
1:30 p.m. Adjourn

 

[Nielk]

Key question- what interventions are available for mecfs?
Medications, alternative, counseling, exercise.

Outcome measures for benefits

Function, quality of life, fatigue, general change

Also looked at harms like withdrawal from the trials due to harm.

Nione were approved by FDA.

Only two trials had more than 100 patients.

 

[Nielk]

Ampligen, rituximab, immunivir, immunoglobulin, valgianciclivir, steroids trials were looked at

 

[Nielk]

steoids showed harm in adrenals.

 

[Nielk]

Alternatives -

No differences that were meaningful.

My computer just crashed..

 

[Esther12]

For one trial she mentioned the importance of the difference not reaching the pre-specified critieria for a clinically significant difference.... didn't seem to care about abondonment of pre-specified criteria with PACE.

 

[Nielk]

at p2p right now.

Jennifer Brea (@jenbrea)
12/10/14, 8:47 AM
P2P protest at the NIH metro stop #mecfs pic.twitter.com/CbhmwoMOjC

 

[Christopher]

Who are these people? I've never heard of anyone except for Hornig and Vernon, and Vernon has an iffy track record as far as supporting real research.

 

[Christopher]

https://twitter.com/jenbrea/status/542676911147593728

 

[Nielk]

CBT least harmful of therapies???