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

D

duncan

Senior Member
Messages
2,240
It is good that this is happening with the NIH. I certainly don't want to detract from that.

But I have been many times to "the NIH Clinical Center, the largest research hospital in the world...", and...eh. They DO have a cool Au Bon Pain on the first floor, though. (I think that's what it was)

They haven't been able to put a dent in Lyme, with four times the ME/CFS budget.

Much will hinge on who leads the research, I suppose.

Still, politically this is huge. It is a super development and on the surface things are headed in the right direction this side of the Atlantic.
 
D

Denise

Senior Member
Messages
1,095
leela said:
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.
Click to expand...

I totally get not being caffeinated.

And I agree - somewhere more appropriate (that includes funding and opportunities) is definitely needed!
 
leokitten

leokitten

Senior Member
Messages
1,595
Location
U.S.
I can give some clarification and this is official from here at the NIH.

While everything is still a work-in-progress and details have not been completely fleshed out yet, NINDS will chair the Trans-NIH Working Group for now but it will eventually begin to rotate between the participating ICs. Grants will still continue to be funded by several institutes and NINDS will work to coordinate the effort on how participating ICs will work together to foster and support research on ME/CFS.
 
Never Give Up

Never Give Up

Collecting improvements, until there's a cure.
Messages
971
leokitten said:
I can give some clarification and this is official from here at the NIH.

While everything is still a work-in-progress and details have not been completely fleshed out yet, NINDS will chair the Trans-NIH Working Group for now but it will eventually begin to rotate between the participating ICs. Grants will still continue to be funded by several institutes and NINDS will work to coordinate the effort on how participating ICs will work together to foster and support research on ME/CFS.
Click to expand...
Does this mean it's floating, perhaps to be assigned a new home once research makes it clear to which group it should belong?
 
U

user9876

Senior Member
Messages
4,556
leokitten said:
I can give some clarification and this is official from here at the NIH.

While everything is still a work-in-progress and details have not been completely fleshed out yet, NINDS will chair the Trans-NIH Working Group for now but it will eventually begin to rotate between the participating ICs. Grants will still continue to be funded by several institutes and NINDS will work to coordinate the effort on how participating ICs will work together to foster and support research on ME/CFS.
Click to expand...

What is an IC?

Also I was wondering about the clinical protocol bit of the announcement. I'm not sure if I understood what it involved. My guess was it was about following people with a virus and fatigue to understand who develops ME and try to understand why. Or have I missed the point?
 
Antares in NYC

Antares in NYC

Senior Member
Messages
582
Location
USA
It sounds to me like this could be a positive move in the right direction, but...
How about the budget? It's the federal budget for ME/CFS research for next year still listed as ZERO?

Inquiring minds want to know.

giphy.gif
 
WillowJ

WillowJ

คภภเє ɠรค๓թєl
Messages
4,940
Location
WA, USA
Antares in NYC said:
It's the federal budget for ME/CFS research for next year still listed as ZERO?
Click to expand...
That was the CDC budget.

The NIH budget, as far as I know, would be $5 million with no changes. Obviously there needs to be changes. It almost sounds like the involved Institutes will chip in some of their money, likely from a pool that is generally allocated (i.e. use money designated for "neurological disease" and "autoimmune disease" and leave the "MS" and "Lupus" budgets, for example, intact), but I guess we will see what happens.
 
George

George

waitin' fer rabbits
Messages
853
Location
South Texas
From the The Atlantic


“The effort aims to take advantage of the NIH Clinical Center, <- big we've never had access to that before

the largest research hospital in the world, to try to carry out EVERY KIND (emphasis mine) of imaginable analysis of the immune system, neurological system … metabolism …<- really big and if accurate that's exactly what we need to determine the root of the illness. It will cost a bundle but it would establish the level of funding needed in the future.


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 of the condition, I don't think we have focused enough of our attention on this.” <- and BOOM the U.S. just called the UK liars! I especially thought this was timely. (big grins)


2cents

~Adaptability is the key to survival~
~Acceptance is the key to peace~
 
George

George

waitin' fer rabbits
Messages
853
Location
South Texas
I particularly found this paragraph from the NIH press release to be a huge change; what most impressed me was 1- that this entire paragraph seems to be attributed to the CDC but even if it's just a mistake in drafting the definition for CFS just changed a lot.

"According to the Centers for Disease Control and Prevention, ME/CFS is estimated to affect more than 1 million Americans, and has been reported in people younger than 10 years of age and older than age 70. ME/CFS is an acquired, chronic multi-system disease characterized by systemic exertion intolerance, <- that's different.

. . . "resulting in significant relapse after exertion of any sort. The disease includes immune, neurological and cognitive impairment; sleep abnormalities; and dysfunction of the autonomic system, which controls several basic bodilyfunctions.
<- the neurological and autonomic inclusion here is an excellent addition in the basic description of CFS from the past where is was tacked on as an afterthought and then only sometimes.

. . . "These symptoms result in significant functional impairment accompanied by profound fatigue. Additional symptoms may include widespread muscle and joint pain, sore throat, tender lymph nodes and headaches. Effects of the illness can range from moderate to debilitating, with at least one-quarter of individuals with ME/CFS being bedbound or housebound at some point in the illness and many individuals never regaining their pre-disease level of functioning. Because the pathology of ME/CFS remains unknown and there is no test to diagnose the disease, studies todate have used different criteria for diagnosis, whichhas limited the ability to compare results across studies. <- an important admission and speaks to the possibility of negating studies that have played fast and loose with criteria like the PACE trial

. . ."Additionally, many of the published studies arebased on small study populations and have notbeen replicated."

All in all a very interesting Press Release.
 
jimells

jimells

Senior Member
Messages
2,009
Location
northern Maine
RL_sparky said:
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
Click to expand...

This is an interesting confession that they are "managing" the advisory committee, which is supposed to be independent. I doubt they were supposed to admit that...
 
jimells

jimells

Senior Member
Messages
2,009
Location
northern Maine
RL_sparky said:
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
Click to expand...


I have to admit that "Ring Around the Rosie" sounds like an excellent idea - for kids. Maybe not so good for "leadership".

On the other hand, I expect that the ORWH is more than happy to dissociate itself from anything to do with our illness. And the feeling is mutual.
 
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