Pathways 2 Prevention

[Ian123]

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

prevention.nih.gov/programs...

[Ian123]

The IOM Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

iom.edu/Activities/Disease/...

FAQS hhs.gov/advcomcfs/notices/f...

The possibility for more progress than has been made in the last 30 years or will the political pressure that has prevailed with the support of health insurance companies keep the strangle hold on criteria and research funding.

[Starbys in reply to Ian123]

I think P2P creating a new 'definition' can only be a bad thing, will only muddy the water more, clouded by vested interests.

After all, since they are focusing on prevention, and ME as an organc disease cannot be prevented I think that says it all.

I am not entirely up to date as too ill to read the reports and videos, apart from the brief summary at the immediate link, so bear that in mind with what I'm saying in case there's stuff I don't know. But based on what I do know I still think this IOM redefinition can only be bad news for advancing true understanding of the disease process and cause of ME and will contribute to preventing the right kind of research needed to identify disease modifying drugs that would actually advance clinical care of ME patients and reduce disability etc..

What do u think?

[Ian123 in reply to Starbys]

Pulling the discussion out into the open is like a card game where some show their hand no longer doing deals in the corridors of power bluffing on which cards they hold.

American health insurance companies do not want a clinical definition that will cost them money so having those cards on the table showing is better than the bluff that they are concerned but nothing is known that will help.

The patient advocates and medical specialists will not go quietly in April 2011 President Obama promises to look into ME/CFS research at the NIH at a public meeting all things the IOM would rather not have.

phoenixrising.me/archives/2...

[Ian123 in reply to Ian123]

The IOM Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome report is due February 10, 2015 iom.edu/Activities/Disease/...

not long now for some very important answers

[slowmotion]

Ha ha super squirrel

[Ian123 in reply to slowmotion]

Heavy subject just lighten the load with some humour slowmotion glad it helped

[slowmotion in reply to Ian123]

a good smile

[Ian123 in reply to slowmotion]

Good attitude life is hard enough without bringing ourselves down

[Ian123]

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/2015/01/15/cf...

[Ian123]

The final report should be here prevention.nih.gov/programs... very shortly

Though it is expected in the journal Annals of Internal Medicine before public release