NIH Pathways 2 Prevention

[Ian123]

Pathways 2 Prevention

The NIH are looking at advancing ME/CFS research the draft report and the videos are heavy going

prevention.nih.gov/programs...

The P2P Report – CFSAC Drafts Substantive, Expert Response

solvecfs.org/the-p2p-report...

On December 9 & 10, 2014, the NIH Office of Disease Prevention held its Pathway to Prevention Workshop for “Advancing the Research on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome”. Upon the conclusion of the workshop, the panel prepared their Draft Report and recommendations. It was posted to the workshop website on Thursday, December 18, 2014 and is open for comments until Friday, January 16, 2015, at midnight.

The P2P Draft Report has been met with some enthusiasm, as it officially addresses many things the patient community has known for years…

“ME/CFS is an unmet public health need with an economic burden estimated to be greater than $1 billion. ME/CFS results in major disability for a large proportion of the people affected. Limited knowledge and research funding creates an additional burden for patients and health care providers. Unfortunately, ME/CFS is an area where the research and medical community has frustrated its constituents, by failing to assess and treat the disease and by allowing patients to be stigmatized.”

“ME/CFS exists…” and “ME/CFS has a physical, psychological, social, and economic impact at the individual, family, and societal level. Patients are typically underserved, and clinicians have a poor understanding of ME/CFS.”

“…this is not a psychological disease in etiology.”

The report goes on to point out the lack of diagnostic criteria and the harm that creates; the problems with small enrollment numbers in studies; too much focus on fatigue with too little focus on other important symptoms, like post-exertional malaise; the need to include a wider diversity of patients in research; the need for collaborative, multicenter studies; the need for more rigorous studies, therapeutic targets, translational efforts, and more.

Though this report ratifies what so many in the ME/CFS community have known for years, it lacks “teeth”; the recommendations are broad and there is no direct funding associated with them. The charge now is upon the scientific community to increase its rigor and the NIH to significantly increase funding to support it.

The Chronic Fatigue Syndrome Advisory Committee (CFSAC) convened a working group to craft a response to the P2P draft report in the hopes of strengthening it by providing expert feedback. Skillfully led by CFSAC member Donna Pearson, and dedicating countless hours over the holidays, the working group – comprised of advocates, researchers and ME/CFS experts – judiciously reviewed the P2P draft report and created a thorough, detailed, and thoughtful response. As an active (non-voting) member of the CFSAC, Carol Head, SMCI president and CEO, participated in that work. On Tuesday, January 13, 2015, the CFSAC held a special-called meeting to finalize and approve their official response to the P2P draft report.

An unofficial draft version can be found on the blog,

Occupy CFS

occupycfs.com/p2p-library/

The waiting for the final report could be influenced by the IOM definition of ME/CFS as SEID a task that was also part of NIH remit

[BagEnd]

Again the major question is funding will an increase in funding arrive with this report from the NIH

occupycfs.com/2015/03/04/20... can change if we go backwards or forwards with treatment of this disease.

All will be revealed 16th of April 2015

[Crazy_Horse]

Controversy over NIH P2P report has begun ahead of schedule?

"The P2P report is scheduled to be published on April 14, 2015, but new information may call the legitimacy of the report into question. Based on NIH’s response to my FOIA request, I believe it is possible that the Office of Disease Prevention (ODP) never properly logged some of the public comments on the draft report – including the comments from the CFS Advisory Committee." Jennie Spotila (March 17th, 2015)

See full article: occupycfs.com/2015/03/1...

[Ian123 in reply to Crazy_Horse]

I have been in contact with Jennie Spotila when they had the first copy of the draft report. My feeling was items such as scrapping the Oxford Criteria would also invalidate the 2011 PACE trials that the NIH along with the UK government that provided funding for it, have relied on heavily for causing confusion that required no further funding.

I have seen figures such as $120 million for MS each year while SEID (CFS) was receiving $5 million, funded pro rata with 10 SEID for every 4 MS the funding would be $287 million for SEID. Unlikely the NIH can or will fund on such a scale but closing on the $60 million spent on male patent baldness is a legitimate target that would be a game changer both sides of the Atlantic, in terms of attracting researchers adequately funded.

[Ian123 in reply to Crazy_Horse]

Controversy is still raging occupycfs.com/2015/04/03/p2... with an official delay in publication

[Ian123]

Important Notice: The ODP recently discovered that one set of public comments was not forwarded to the panel for consideration. Because the ODP is committed to ensuring that all public comments have been considered, we paused the publication process in order to give the panel time to consider the new information and determine if changes are needed before the release of the final report.

Status Update (April 16, 2015): The new publication date for the panel’s final report will be Tuesday, June 16, 2015, in print in the Annals of Internal Medicine and online on the ODP website. Thank you for your patience to allow for consideration of all public comments

prevention.nih.gov/programs...