Institute Of Medicine Renaming

[BagEnd]

The Program Support Center on behalf of the Office of the Assistant Secretary of Health (OASH) within the Department of Health and Human Services intends to negotiate and award a contract to the National Academies (Institute of Medicine) on a sole source basis under the authority of FAR 6.302-1 to support a study committee to recommend clinical diagnostic criteria for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).

Clinicians and medical professionals disagree on many aspects of ME/CFS, ranging from frank disbelief in the illness to confusion about the application of clinical diagnostic criteria. In collaboration with CFSAC ex officio agencies, OASH will request that the IOM develop consensus clinical diagnostic criteria for this disorder. A widely accepted clinical definition and a clear distinction from clinical trials and research case definitions would aid in advancing clinical care, drug development, and basic and translational research for ME/CFS. This study would also demonstrate HHS' commitment and aggressive pursuit of solutions to this poorly-understood and disabling condition.

In response to a request from the OASH, the Board on the Health of Select Populations of the Institute of Medicine will establish a study committee of thought leaders and stakeholders to comprehensively evaluate the current status of criteria for the diagnosis of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).

The Committee will consider the various existing definitions for chronic fatigue syndrome and develop consensus clinical diagnostic criteria for this disorder. Widely accepted clinical diagnostic criteria and a clear distinction from case definitions for clinical trials and research will aid in advancing clinical care, drug development, and basic and translational research. The Committee will also distinguish between disease subgroups, develop a plan for updating the new criteria, and make recommendations for its implementation.

No solicitation document is available. All responsible sources that have the requisite qualifications to perform the work described above may submit a statement of capabilities electronically. Responses are due by August 30, 2013 by 4:00 pm EST. Responses will not be accepted after the due date. If no capability statements are received which specifically demonstrate the ability to perform the requirements above, the Government shall proceed with negotiating a sole source contract to the National Academies (Institute of Medicine)

youtube.com/watch?v=F7mQWUc...(Not working as expected?)

iom.edu/Reports/2015/ME-CFS...

[Ian123]

The Lancet published this thelancet.com/pdfs/journals... so the effects of a plain speaking report are having some consequences for the UK health service.

[slowmotion in reply to Ian123]

Nothing changed keep saying same as always.

[Crazy_Horse in reply to Ian123]

Ian, Interesting article. Thanks for sharing this here.

[Ian123 in reply to Crazy_Horse]

Where does the report go from here, back it or attack it

cortjohnson.org/blog/2015/0...

Ellen Wright Claytons suggestion of ACT UP is the more positive use of the report in my opinion.

[Crazy_Horse in reply to Ian123]

Hi Ian, Thanks for sharing this blog entry. Interesting.

I hope we will gain any movement forward using the IOM report.

I will be meeting today with a reputable Professor of Medicine at a medical school, he is considered the school's "expert" on CFS/ME. I am interested in his feedback about the IOM report.

ACT UP! Yes, I wonder what that means to a Professor of Medicine? Will inquire. C_H

[Ian123 in reply to Crazy_Horse]

Get the feeling from the outside of this that many have hunkered down waiting for the NIH P2P going public on 16th April. Peer review for the journals will have the grapevine filled with chatter on which way the winds of change are blowing, they are interesting times we are living in

[Crazy_Horse in reply to Ian123]

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/2015/03/17/di...

-Also posted under the NIH P2P Headline-

*Dear BagEnd, Please edit placement if you'd like.

I have left this entry here at under the NIH P2P Headline. Thanks! C_H

[Ian123 in reply to Crazy_Horse]

Have replied in healthunlocked.com/ramsaysd...

[Crazy_Horse in reply to Crazy_Horse]

The Professor's feedback at this time:

"The IOM is a very credible and prestigious group. Their report should be taken very seriously. However, the IOM has not managed to sell the contents of their report to mainstream medicine."

The Professor felt the IOM needs a strategy to further publicize their report. He states the key to seeing attitudes in medicine change is more money invested into research.

The Professor has always taught his own opinion - which coincides with the current IOM statement - that every Primary Care Physician (GP) should be fully prepared to diagnose and manage patients suffering CFS/ME/SEID.

It's his opinion these cases are "relatively easy" to diagnose and to manage, once the practitioner understands what is known about this condition at this time.

The Professor feels the downloadable diagnostic algorithm will not prove helpful if/when presented by a patient to a physician, as suggested by the IOM. He feels most doctors interested in the diagnostic algorithm will already have access to the algorithm. Although he does admit many colleagues are not aware of the recent IOM report.

The Professor echoes the IOM in stating positive movement is contingent upon research funding and will need a large advocacy effort. He is hoping all advocates will utilize the IOM report in demanding high level research funding.

As Ian has suggested, let's see what transpires with the NIH P2P report due April 14, 2015.

I wish I had more exciting feedback to report here.

C_H

[Ian123 in reply to Crazy_Horse]

Personally I would rather have a candid opinion than one that says something that pleases the audience.

I still feel the tide is turning as the psychiatrists are fighting for their careers/research funding in the media in a way that has not been necessary, while the deals were fixed in the corridors of power by the influential lobby groups.

It will be very uncomfortable for anyone trying to turn the clock back and cut funding, what we have we hold and fight for everything else that is due.

[Crazy_Horse in reply to Ian123]

Thanks, Ian. Great points!

I am also grateful for the candid feedback. I could see the sadness in this doctors face as he was talking. He has been an advocate for over 20 years, both within the medical school as well as in the community, granting educational interviews to local television news reporters, and more. He is, like many others are, getting ready to retire and are not sure an advocate will be available in his place. He was clearly saddened as we'd visited on this topic.

[Ian123 in reply to Crazy_Horse]

As the doctor gets ready for retirement he will leave the community in a better condition than he found it, plus his enlightened thinking is now with his students. In the UK we are waiting for the retirement of the Wessely school that had a far less positive influence on our history.

Judged by legacy I know which I would rather have.

[Crazy_Horse in reply to Ian123]

Ian, I appreciate your perspective.

I am sorry about the Wessely school.

In the Northeastern U.S., we have had some excellent M.D. advocates over the past 20 years. Most of them have held prestigious positions in medical schools.

(Dr. Komaroff is a huge influence in this region - and beyond.)

We have been very fortunate.

[Ian123 in reply to Crazy_Horse]

We had excellent medical involvement from the 1950s until the mid 1980s.

The UK CFS/M.E. Research Collaborative (CMRC) held it's first conference in September 2014 - excellent medical involvement with the disease could return.

[Ian123 in reply to Ian123]

Response from the ME Association on the Lancet article;

meassociation.org.uk/2015/0...

[Crazy_Horse]

I'd enjoyed hearing the IOM on the day they had first talked about their report. It's been important for me to review this. Thanks!

[Ian123]

Read the comments for reaction news.sciencemag.org/health/...

[Ian123]

Charity Action for M.E response in detail:

actionforme.org.uk/Resource...

[Ian123]

youtube.com/watch?v=X4Tnt2d...(Not working as expected?)