Today, what seems to be the Systematic Review Protocol for the Pathways to Prevention (“P2P”) was published online.
The secrecy continues: The publication does not include the names of the technical experts and NIH refused to divulge those names in response to my FOIA request. To my knowledge, NIH also has not released the names of the members of the NIH Working Group.
There is nothing in this document that relieves my concerns about the “jury-model” approach to this whole P2P process.
Hat tip to Jay Spero for the find.
Thoughts About M.E. 
Such a true story of perpetuated injustice to the ME/CFS community–and others that this sham/scam of the IOM contract and P2P jury will affect.
This whole destructive process of the IOM contract and P2P to define ME/CFS needs to be abandoned. It is NOT ‘set up’ for the needs and with the best interests of patients in mind; quite the contrary.
I went back to the link with the previous posting about the P2P jury model and all the many many comments. This ‘set-up’ is ‘head-shaking’ . . . to say the least–with these HHS, CDC, NIH politics played against a very sick community of ME/CFS patients–this is persecutory.
Thank you, Jeannette, for all you many efforts in pursuing and keeping us updated.
The link to the DEC 2002 AHRQ CFS literature review is no longer on the agency website. This was a review of the quality and quantity of scientific studies on CFS. I will e mail the PDF to J because I can’t attach a PDF here. NOTEWORTHY are AHRQ standards over 10 years ago and the conclusions. You might take a look to see how the review has changed? I am in no shape to think it through, but thought to send the PDF.
“Technical Experts comprise a multi-disciplinary group of clinical, content, and methodologic experts, including the patient perspective, who provide input in defining populations, interventions, comparisons, or outcomes as well as identifying particular studies or databases to search.” HA! “including the patient perspective”? Not naming the technical experts? This all is just the S.O.S.! Good luck, Jeannette with your battle! If anyone can break thru’ this, you can!
The non-drug therapies on there are Wessely school- “and non-drug therapies which included yoga, stretching and relaxation techniques, counseling on pacing strategies, and mental exercises”
Dowsett’s definition is on the citation list but not Ramsay.
Sharpe’s Oxford definition is in there. No wonder why there is a transparency issue here, Oxford was excluded from the IOM panel evidence but they threw it in here.
The interventions include Wessely school again- “•For KQ2: Forms of counseling and behavior therapy, graded exercise programs, complementary and alternative medicine (acupuncture, relaxation, massage, other), and symptom-based medication management (immune modulators, beta blockers, antidepressants, anxiolytics, stimulants, other)”
Timing: 12 weeks or longer- that’s a controlled trial- Wessely school.
The reference list includes all Wessely school members.
The Peer Reviewers have to disclose financial conflict of interest greater than 10K- who are the peer reviewers? Are they the same group as the non-expert IOM panelists? There is no way they will not have a conflict of interest, the 10K will be disquised as something else totaling more than 10K
The sample search strategy list on the bottom of that page screams GET and CBT. Its set up so a cognitive impaired person doesn’t see it- Wessely school again!!!
This is not good at all! There is too much Wessely school being reviewed, that is more of a problem then who will actually be on the panel.
Isn’t that more than interesting–thanks for this info!! How does that saying go?? All roads lead to Rome. Wakey-wakey, out there!
Wishin’ and hopin’ that ‘things will somehow magically be different this time,’ and perhaps by one’s particular participation with the IOM committee and P2P — headed, steered, directed and ‘set-up’ by the HHS, CDC, NIH and the Wessley psychobabble influences — equates to wishful/delusional thinking and is NOT the reality of this very dire and doomed situation that we, the ME/CFS community, are faced with.
Playing nicey-nice with the IOM–allowing these politics to take advantage of any of us–in the predetermined outcome is like staying on board a sinking ship and refusing to evacuate to save yourself. They can’t use our ‘evidence’–the IOM committee is not designed to allow for this information!!
You can analyse data till the cows come home–it will make NO never mind to the IOM whatsoever in the parameters the committee is set in. This is not about individuals–it is about the politics and agenda that are set up causing harm and ultimately death to the targeted ME/CFS patient/people community.
The ME/CFS Experts and Researchers are calling for STOPPING the IOM contract and adopting the CCC definition of ME/CFS. What is it about this statement that some do not hear? Certainly, the HHS has completely ignored this expertise . . .
AND, all the while as scientific research is exploding in getting to biomarkers for this life-stealing debilitating disease of ME/CFS–conversely, the HHS thru the IOM and P2P is pushing to drown us in psychobabble.
AND all the while this distorted HHS pattern of behaviour and politics against us is stealing our lives away and killing us in a long cruel death sentence–and the disease of ME/CFS is spreading to our families and our children.
It is, therefore, incumbent upon us, as sick as we are, to fight this travesty enacted by the HHS, CDC and NIH in motion against us, now in the name of the IOM contract.
United we stand.
That actually has to be protested now, or even legal action to stop it, especially since there will be lay people as part of the group who have no idea what the heck ME is.
Here’s a link to an online version of the 2001 AHRQ evidence review that Pat Fero mentioned
http://www.ncbi.nlm.nih.gov/books/NBK33797/
Thanks, Jeannette.
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