CJ: NIH Pledges Long Term Effort on Chronic Fatigue Syndrome (ME/CFS): Promises to “Stay the Course”

[Dolphin]

From: Cort Johnson

NIH Pledges Long Term Effort on Chronic Fatigue Syndrome (ME/CFS): Promises to “Stay the Course”

During Tuesday's advocacy briefing top NIH officials assured the ME/CFS Community that they were in it for the long haul and pledged they would "stay the course". Reiterating how serious the NIH was about the disease Dr. Colllins said he recognized how long a wait many had had for a real effort.

Dr. Nath talked from Liberia and Dr. Walitt, study size, patient/expert inputs and other issues were addressed after the meeting was opened up to questions.

Find out more in
http://www.cortjohnson.org/blog/2016/03/10/nih-long-term-effort-chronic-fatigue-syndrome/

 

[Woolie]

Not much on Walitt, though, only him denying everything he ever said:

Wilhelmina Jenkins gave Brian Walitt an opportunity to clear his name. Walitt said that ME/CFS is a biological disorder which research has shown effects every system in the body. If ME/CFS is in one’s head it’s only, he said, because the head is attached to the body.

 

[anciendaze]

I have to admit "long-term" is less reassuring to me than it might be. We are already at year 31 of NIH and CDC involvement. Putting useful results off into extra innings while research proceeds blindly has already happened in the case of the Bibb County and Wichita data sets. Wasting research funds on such efforts was a tactic which followed years in which money earmarked for CFS research was simply appropriated for more urgent worthy uses. This culminated in a CDC admission to Congress that one million dollars intended for CFS had simply vanished in unnamed directions. The individuals testifying suffered embarrassment, but nothing more. After all, what is a million dollars to Congressmen or bureaucrats?

 

[Forbin]

This culminated in a CDC admission to Congress that one million dollars intended for CFS had simply vanished in unnamed directions. The individuals testifying suffered embarrassment, but nothing more. After all, what is a million dollars to Congressmen or bureaucrats?

It was even worse than that. According to an audit by HHS, over four years the CDC had misspent $8.8 - $12.9 million dollars allocated to CFS.

This is from the GAO's own report from 2000:

In 1998, it was alleged that in fiscal years 1995 through 1998, CDC had spent funds that had been budgeted for CFS on other programs and had misled the Congress about how it had spent these funds. At CDC’s request, HHS’ Inspector General conducted an audit of the CFS program for these years and found that about one-third of the funds ($8.8 million) had been spent on non-CFS-related activities. An additional one fifth ($4.1 million) of funds were indirect costs not adequately documented to determine applicability to CFS. http://www.gao.gov/new.items/he00098.pdf

 

[Snow Leopard]

I'd like to see the word "rapidly build research capacity" and "level of research funding commensurate with the high level of disease burden".

 

[jimells]

NIH is definitely concerned about its image. Are they equally concerned for the welfare of patients?

 

[*GG*]

NIH is definitely concerned about its image. Are they equally concerned for the welfare of patients?

Good question! Love the "signature" as well! What a thinker and Patriot!!

“Power concedes nothing without a demand. It never did and it never will. Find out just what any people will quietly submit to and you have found out the exact measure of injustice and wrong which will be imposed upon them, and these will continue till they are resisted with either words or blows, or both." ~ Frederick Douglass