Why MEAdvocacy Does Not Applaud the News from NIH...Yet

[Nielk]

NIH has released a News Release announcing a strengthening of efforts to advance research for ME/CFS. Do the promises outlined in the announcement actually usher a new era of hope for the long suffering ME/CFS patients? Read more:
http://www.meadvocacy.org/why_meadvocacy_does_not_applaud_the_news_from_nih_yet

The Announcement
The myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) community has welcomed and applauded the National Institutes of Health (NIH) News Release announcing a strengthening of efforts by the NIH to advance research for the disease. The overwhelming feeling is that the promises outlined in the announcement ushers a new era of hope for the long suffering ME/CFS patients. NIH Director Francis S. Collins, M.D., PhD. assures: “I am hopeful that renewed research focus will lead us toward identifying the cause of this perplexing and debilitating disease so that new prevention and treatment strategies can be developed.”

The notice announces the readjustment of the Trans-NIH ME/CFS Research Working Group. It will now be chaired by Walter J. Koroshetz, M.D. and assisted by Vicky Holets Whittemore, PhD- representative for the Department of Health and Human Services (HHS) on the Chronic Fatigue Syndrome Advisory Committee (CFSAC). They will discuss gaps in research and look for scientific opportunity. This Group will be led by the National Institute of Neurological Disorders and Stroke (NINDS). Although we are wary of yet one more working group, we hope this might result in more vigorous research into the disease. It is not clear at all though how much and from where new funds will be coming from. The notice states: “The Working Group includes representation from 23 NIH institutes, centers and offices” - yet no word about patient or advocate representation!

Francis Collins, personally, called a few advocates/patients to impress on them his commitment to bring focus to this “perplexing and debilitating disease”. In addition, Collins appeared on the CharlieRose.com station. See transcript here. Collins says about CFS “it’s a very heterogeneous collection of individuals”. “They can’t get out of bed...exertion makes it worse.” He promises to bring new technology to study this mysterious disease. By understanding fatigue in CFS, it will lead to understanding fatigue in other illnesses like cancer.

This announcement has prompted patient groups and advocates to sign a letter of thanks and a show of eagerness to work along with the Director of NIH. We believe that applauding this announcement is premature.

read more here

 

[jimells]

In an effort to remedy this situation, NIH will design a clinical study in the NIH Clinical Center with plans to enroll individuals who developed fatigue following a rapid onset of symptoms suggestive of an acute infection.

So they could be studying a tiny group of patients (40?) with who knows what illness. Sounds like more Fukuda Follies to me.

The press release says nothing about funding or issuing an RFA. It's all about re-arranging the deck chairs. With 23 different chefs on the re-arranged committee, the broth probably won't be edible.

By understanding fatigue in CFS, it will lead to understanding fatigue in other illnesses like cancer.

These people have learned nothing about our illness in the past 30 years, and if they continue to focus on "fatigue", they will learn nothing in the next 30 years. Thank God the Norwegians and other independent researchers are not waiting for NIH.

 

[Sean]

We will know how serious they are when we see the amount of money on the table, and what they spend it on.