NIH takes action to bolster research on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

[duncan]

Perhaps the Telegraph sub-editors can take a crack at an appropriate headline?

"Office of Research on Women's Health has Women , er, CFS, Removed from its Purview"?

 

[Sasha]

BTW, guys, the odd troll is popping up. I suggest not feeding them and if a comment is simply offensive, flag it to the moderators and it will be removed.

On The Atlantic you have to hover your mouse over the offending post to see a little flag appear at the top right of the post - click on that to report the post. On the Washington Post, just click on 'Report'.

 

[Yogi]

Still, the press release does not make it clear to me that the disease has been moved to NINDS.

"While not made explicit in this press release, a source at the NIH confirmed that this means that ME/CFS will no longer be housed under the Office of Women’s Health and has been formally moved to NINDS."

 

[leela]

Holy canoli this is amazing news! And it only took thirty-odd years.

 

[snowathlete]

"While not made explicit in this press release, a source at the NIH confirmed that this means that ME/CFS will no longer be housed under the Office of Women’s Health and has been formally moved to NINDS."

Yeay!!!!!

 

[RL_sparky]

I emailed and asked if we were being moved into NINDS. Below is the reply:

Management of CFSAC, the advisory committee, remains with OWH. The announcement today is about NIH’s work on ME/CFS and doesn’t apply to other efforts around the Department. For example, CDC continues to have research and educational projects and funding for these efforts.
________________________________________________________
The CFSAC Support Team
Email: cfsac@hhs.gov
Website: http://www.hhs.gov/advcomcfs/index.html
Sign up for the CFSAC listserv to receive the latest updates about CFSAC:
http://www.hhs.gov/advcomcfs/cfsac_email_list

 

[Yogi]

Anyone that is on Twitter should tweet these to the idiot Telegraph science editors and the Evening Standard journalists. And Guardian and Irish Independent. Show them a proper announcement by the Americans that should be splashed on the front cover in the UK.

http://www.nih.gov/news/health/oct2015/od-29.htm

http://solvecfs.org/nih-announces-new-effots-to-advance-mecfs-research

 

[Denise]

I emailed and asked if we were being moved into NINDS. Below is the reply:

Management of CFSAC, the advisory committee, remains with OWH. The announcement today is about NIH’s work on ME/CFS and doesn’t apply to other efforts around the Department. For example, CDC continues to have research and educational projects and funding for these efforts.
________________________________________________________
The CFSAC Support Team
Email: cfsac@hhs.gov
Website: http://www.hhs.gov/advcomcfs/index.html
Sign up for the CFSAC listserv to receive the latest updates about CFSAC:
http://www.hhs.gov/advcomcfs/cfsac_email_list

From this response I am not sure if CFSAC Support Team understood the question. This response deals with the Office of Women's Health within HHS, and not the Office of Research on Women's Health within NIH.

 

[leela]

I emailed and asked if we were being moved into NINDS. Below is the reply:

Management of CFSAC, the advisory committee, remains with OWH. The announcement today is about NIH’s work on ME/CFS and doesn’t apply to other efforts around the Department. For example, CDC continues to have research and educational projects and funding for these efforts.

What has CFSAC ever done, especially lately, besides obfuscation, lip service, and political gaming? Why not dissolve CFSAC, and dissociate from OWH completely?
CDC should now follow the example of NIH and move ME to NINDS. C'mon already.

 

[Sasha]

"While not made explicit in this press release, a source at the NIH confirmed that this means that ME/CFS will no longer be housed under the Office of Women’s Health and has been formally moved to NINDS."

Wow! That's HUGE.

Congratulations to everyone who helped to bring this about.

Think you'll be interested, @searcher.

 

[Denise]

What has CFSAC ever done, especially lately, besides obfuscation, lip service, and political gaming? Why not dissolve CFSAC, and dissociate from OWH completely?
CDC should now follow the example of NIH and move ME to NINDS. C'mon already.

I am not sure I understand what you are saying @leela.
CDC and NIH are separate branches of HHS, so I don't think CDC could move ME to NINDS
though they could move it out of National Center for Emerging and Zoonotic Infectious Diseases (NCEZID)
Division of High-Consequence Pathogens and Pathology (DHCPP).

 

[leela]

I also have to wonder why CDC "continues to have research and educational projects and funding" when their track record with so-called ME/CFS is beyond abysmal, and includes misdirecting funds to other diseases. An independent research group who had misdirected funds and obstinately refused to update their educational materials based on research and input from their own scientists would have been held accountable for such appalling shenanigans.

 

[Sasha]

I emailed and asked if we were being moved into NINDS. Below is the reply:

Management of CFSAC, the advisory committee, remains with OWH. The announcement today is about NIH’s work on ME/CFS and doesn’t apply to other efforts around the Department. For example, CDC continues to have research and educational projects and funding for these efforts.

Can't say as I understand all the ins and outs there.

 

[leela]

I am not sure I understand what you are saying @leela.
CDC and NIH are separate branches of HHS, so I don't think CDC could move ME to NINDS
though they could move it out of National Center for Emerging and Zoonotic Infectious Diseases (NCEZID)
Division of High-Consequence Pathogens and Pathology (DHCPP).

I have not quite caffeinated yet, @Denise, so was just trying to say this disease is past due to be removed from OWH.
Whatever it takes to get it somewhere more appropriate.

 

[Sasha]

This article

https://www.washingtonpost.com/news...ew-effort-to-tackle-chronic-fatigue-syndrome/

has an excellent video with a patient who is just brilliant.

 

[acer2000]

I wonder what they will do with the Clinical Center in Bethesda. I inquired there to see if they could help me a few years ago and I was repeatedly told they "don't have any programs for people like me". At the time I was annoyed because they don't know what a person "like me" is unless they look. But maybe now they will have a program to do that.

 

[RL_sparky]

Follow up email:
"The leadership of the Trans-NIH workgroup on ME/CFS is being moved from ORWH to NINDS. As we understand it, the leadership of the workgroup will be rotating. For further details, please contact NIH".
________________________________________________________
The CFSAC Support Team
Email: cfsac@hhs.gov
Website: http://www.hhs.gov/advcomcfs/index.html
Sign up for the CFSAC listserv to receive the latest updates about CFSAC:
http://www.hhs.gov/advcomcfs/cfsac_email_list.html

 

[Sasha]

http://www.theatlantic.com/health/a...ue-syndrome-research/413008/#article-comments

The National Institutes of Health announced on Thursday that it will strengthen its efforts to find the roots of a mysterious disorder known as Chronic Fatigue Syndrome, or Myalgic Encephalomyelitis. Researchers from a number of the agency’s institutes will design a clinical study involving individuals who developed crippling fatigue and other symptoms after an acute infection. The agency may also increase the funding dedicated to the disorder from its current level of about $5 million annually, less than the amount devoted to hay fever.

“The effort aims to take advantage of the NIH Clinical Center, the largest research hospital in the world, to try to carry out every kind of imaginable analysis of the immune system, neurological system … metabolism … all of the things you'd want to know to try to get a handle on what is driving this very mysterious, puzzling disorder,” the NIH director Francis Collins said in an interview. “Given the seriousness the of condition, I don't think we have focused enough of our attention on this.”

 

[Sasha]

Also:

The new CFS initiative will have upgraded prestige and visibility, Collins said, falling under the authority of Walter J. Koroshetz, the director of the National Institute of Neurological Disorders and Stroke, along with Vicky Holets Whittemore, the NIH representative to the U.S. Department of Health and Human Services’ Chronic Fatigue Syndrome Advisory Committee.

She impressed me at the most recent CFSAC meeting.

 

[adreno]

Encouraging bit from Koroshetz biography:



In other words, we have a person with a special interest in biomarkers leading the research effort. Let's hope that he is passionate and highly motivated!

Dr. House is in the house.