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Will the Real P2P Please Stand Up?

jspotila

Senior Member
Messages
1,099
I went back through every public statement HHS has made about the purpose of the NIH P2P meeting. They have contradicted themselves multiple times. They also withheld the information that the P2P Panel was 100% non-ME/CFS experts, despite two opportunities to tell CFSAC in 2013. Dr. Maier did not explain the "jury model" until the IOM meeting in January 2014.

I've collected the most telling quotes in this post, and added additional information about whether our experts approved the questions in the AHRQ study protocol. (wanna guess?)

http://www.occupycfs.com/2014/05/19/will-the-real-p2p-please-stand-up/
 

Nielk

Senior Member
Messages
6,970
Thank you, Jennie for your great report....again.

But at other points, it appears the focus is back on the case definition:

The purpose of the Pathways to Prevention Program for ME/CFS is to evaluate the research evidence surrounding the outcome from the use of multiple case definitions for ME/CFS and address the validity, reliability, and ability of the current case definitions to identify those individuals with or without the illness or to identify subgroups of individuals with the illness who might be reliably differentiated with the different specific case definitions. Dr. Susan Maier, December 11, 2013 CFSAC Minutes, p. 16.


Doesn’t this assessment of multiple case definitions and what research tells us about subgroups sound like what the IOM panel is doing right now? And if IOM is already doing this, why do we need a separate process at NIH where the decision makers are ALL non-ME/CFS experts?

Exactly! If it sounds like it, looks like it.....

My personal theory is that this p2p is an insurance policy for them. When the IOM will come down with their verdict, and the community will try to reject/protest it, the HHS will counter it with the p2p "independent" results which will mimic the IOM one.

As far as not telling us that there will be no experts on the working group until recently - they were trying to avoid resistance until it was a done fact.

here’s a problem, everybody. Multiple sources who are in a position to know what happened at the January 2014 Working Group meeting told me that the questions in the study protocol were not the questions defined at the meeting. Did something happen between that January meeting and the release of the study protocol? I don’t know whether someone continued to tinker with the questions, or why the Working Group was not consulted. But either the questions have been significantly changed, or the information from my sources is deeply flawed.

I am so surprised about this....NOT!

If this is true, why are these anonymous members not speaking up? What are they afraid of? We will get nowhere by mere innuendos or hearsay. There must come a point where someone will be the brave whistle blower. So the only meeting with experts was the one to come up with the questions but the questions were changed. The rest of the work is up to non-experts. We are in for some ride here - more like a plunge to the abyss.
 

jspotila

Senior Member
Messages
1,099
If this is true, why are these anonymous members not speaking up? What are they afraid of? We will get nowhere by mere innuendos or hearsay. There must come a point where someone will be the brave whistle blower. So the only meeting with experts was the one to come up with the questions but the questions were changed. The rest of the work is up to non-experts. We are in for some ride here - more like a plunge to the abyss.

Those anonymous people have things at stake. I can't answer why no one wants to be a whistle blower. I'm doing what I can to encourage people to speak out, but I also have to respect confidentiality and protect my sources.
 

Nielk

Senior Member
Messages
6,970
Those anonymous people have things at stake. I can't answer why no one wants to be a whistle blower. I'm doing what I can to encourage people to speak out, but I also have to respect confidentiality and protect my sources.

I understand that you are doing what you can and I appreciate everything that you do. I wish though that someone (all) the members if that committee would come clean with this. Surely if they come out as a total group, they won't be penalized for it ?
 

jspotila

Senior Member
Messages
1,099
I understand that you are doing what you can and I appreciate everything that you do. I wish though that someone (all) the members if that committee would come clean with this. Surely if they come out as a total group, they won't be penalized for it ?

It's risky. Can we assure them that there will be no consequences? They have to weigh the risk-benefit analysis.
 

Nielk

Senior Member
Messages
6,970
This is exactly why it does not make any sense to have anyone on any of these panels, whether it is the p2p or IOM who rely on NIH funding. There is clear bias and this is here a clear example of that.

Many advocates have voiced concern with the fact that the majority of the members of the IOM committee receive NIH funding. This is a clear problem/bias because how comfortable are they going to be going against HHS dogma?

As far as the p2p committee, I don't know how many are reliant on NIH funding, because the membership have been kept in secret. Why is that? where is the transparency?
 

jspotila

Senior Member
Messages
1,099
This is exactly why it does not make any sense to have anyone on any of these panels, whether it is the p2p or IOM who rely on NIH funding. There is clear bias and this is here a clear example of that.

Many advocates have voiced concern with the fact that the majority of the members of the IOM committee receive NIH funding. This is a clear problem/bias because how comfortable are they going to be going against HHS dogma?

As far as the p2p committee, I don't know how many are reliant on NIH funding, because the membership have been kept in secret. Why is that? where is the transparency?

But if we eliminate everyone who gets NIH funding, then MANY of our top experts are eliminated! Lenny Jason, Nancy Klimas, and on and on - they all rely on NIH funding because that is the life's blood of research in this country (for any disease not just ours).

We cannot disqualify experts merely for getting NIH funding, and we have to be realistic in our expectations of what they can and will do politically. Scientific politics and advocacy politics are a tangled web, and as patient advocates we will have to move on our own and hope they follow when they can.
 

Nielk

Senior Member
Messages
6,970
Lenny Jason and Nancy Klimas have done tremendous work for this disease. We need them and I hope they will continue to contribute but, maybe they are not the best candidates to serve on this type of committees. There are experts out there who do not receive NIH funding. They should have been the ones to be called upon since HHS is the sponsor. This was my great concern early on.
 

jspotila

Senior Member
Messages
1,099
Lenny Jason and Nancy Klimas have done tremendous work for this disease. We need them and I hope they will continue to contribute but, maybe they are not the best candidates to serve on this type of committees. There are experts out there who do not receive NIH funding. They should have been the ones to be called upon since HHS is the sponsor. This was my great concern early on.

I think that's a good point. I'm not trying to single out specific people, though. Certainly there are clinicians who do not receive NIH funding, but they may be working on things relevant to FDA or CDC (multisite study). Some experts have to consider not only their own interests, but those of their collaborators, students, etc. And again, scientific politics (what committees to serve on, what positions to take) are different from advocacy politics.

I'm just hesitant to say that everyone who gets NIH funding has an automatic conflict of interest for these things. Some of those NIH funded investigators have unique experience that we need in those committee rooms. Some of those not bound to NIH may have advocacy politics that some don't like. And clinicians do not bring the same scientific perspective that researchers do. Ours is still a small field, and we already overtap some of those experts. Shrinking the pool does not help us.
 

Nielk

Senior Member
Messages
6,970
I think that's a good point. I'm not trying to single out specific people, though. Certainly there are clinicians who do not receive NIH funding, but they may be working on things relevant to FDA or CDC (multisite study). Some experts have to consider not only their own interests, but those of their collaborators, students, etc. And again, scientific politics (what committees to serve on, what positions to take) are different from advocacy politics.

I'm just hesitant to say that everyone who gets NIH funding has an automatic conflict of interest for these things. Some of those NIH funded investigators have unique experience that we need in those committee rooms. Some of those not bound to NIH may have advocacy politics that some don't like. And clinicians do not bring the same scientific perspective that researchers do. Ours is still a small field, and we already overtap some of those experts. Shrinking the pool does not help us.

This is exactly why HHS has no business in defining diseases. It should have come from the medical community like the CCC and ICC and then there is no danger of such conflicts.

This is really the main reason why advocates and patients are at such uproar about this whole proceeding.

The p2p like you stated in your article was never meant to serve for such a study just like the IOM is not equipped for defining complex diseases.

To add insult to injury, they are both sponsored, driven, guided by HHS.

How can a legitimate, independent study result from such works?
 

*GG*

senior member
Messages
6,389
Location
Concord, NH
I went back through every public statement HHS has made about the purpose of the NIH P2P meeting. They have contradicted themselves multiple times. They also withheld the information that the P2P Panel was 100% non-ME/CFS experts, despite two opportunities to tell CFSAC in 2013. Dr. Maier did not explain the "jury model" until the IOM meeting in January 2014.

I've collected the most telling quotes in this post, and added additional information about whether our experts approved the questions in the AHRQ study protocol. (wanna guess?)

http://www.occupycfs.com/2014/05/19/will-the-real-p2p-please-stand-up/

I have no faith in our gov't, look at how Gov't healthcare has led to the death of how many Veterans?!

GG