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3/2/2014 - Article Written By Llewellyn King About ME/CFS and the HHS/NIH

Wally

Senior Member
Messages
1,167
http://www.whchronicle.com/2014/03/the-strange-case-of-the-nih-and-an-elusive-disease/

The Strange Case of NIH and an Elusive Disease


By Llewellyn King


The federal government has a mostly open dialogue with those it serves and those who serve it. This happens pretty well across government agencies, from the Pentagon to the Department of Transportation to the Department of Agriculture.


So it is troubling that the National Institutes of Health, an arm of the Department of Health and Human Services, appears to have no communication with a critical but ignored patient cohort: those suffering from Myalgic Encephalomyelitis, also known as Chronic Fatigue Syndrome, and often referred to only as ME/CFS. NIH does not appear to hear the cries of the petitioners at its door; it seems to be interested only in classifying and defining the disease.


According to the Centers for Disease Control, ME/CFS afflicts 1 million people in the United States, and 17 million people around the world. While those numbers of victims are disputed, their suffering is not; they are ill in a terrible way.


ME/CFS takes healthy -- often athletic -- people and casts them into a shadow world of physical incapacity, mental fog, loneliness and relentless dependence on others. The suffering is measured in years and decades. Suicide is common.


It is a disease of the immune system, but what triggers it is unknown. Physicians who treat ME/CFS have told me that they would rather have cancer than this disease. One epidemiologist said, “With cancer, you are cured or you die. ME/CFS just goes on and on. You live the life of a zombie.”


From a physician devoted to treating and researching ME/CFS, this is not only a terrible admission, but also a de facto indictment of the national effort to find a cure, or even a therapy, for alleviating the suffering.


One of the problems affecting ME/CFS treatment is diagnosis. There are no biological labels, known as markers, that enable doctors to easily identify ME/CFS; it cannot be picked up in a blood tests or a urine sample. It is a ghostly manifestation, and doctors fall back on what is known as wastebasket diagnosis. In its simplest form, this means testing for a lot of diseases and if it does not turn out to be one of them, it could be ME/CFS.


But one case definition has satisfied the ME/CFS community in recent years, and it is endorsed by specialists in the field. Established in 2001, it is called the Canadian Consensus Criteria.


Yet, incomprehensibly, the NIH is spending some of the paltry $6 million devoted to ME/CFS, on a study to come up with a new case definition for the disease; something that no one wants and which could do real harm.


To do this work, the NIH selected the Institute of Medicine (IOM), which has no expertise in ME/CFS and which had drawn opprobrium with its clumsy attempt to do a case definition of Gulf War Syndrome.


The NIH, which has failed to explain itself in plain English, has ignited incandescent rage in the patient community and from patient advocates. In a unique outpouring of objection, 50 of the world's top doctors and clinicians wrote to Secretary of Health and Human Services Kathleen Sibelius, pleading with her not to muddy the waters and to stay with the definition which is working well. The NIH went ahead with the IOM contract.


So lacking is government support, moral as well as financial, that the research community, including dedicated physicians such as Andreas Kogelnik of Mountain View, Calif., Daniel Peterson of Incline Village, Nev., and Derek Enlander of New York City, feel they have to raise funds privately to continue their work. Even celebrity virus hunter Ian Lipkin of Columbia University has abandoned hope of getting his seminal work funded by the NIH and has joined the researchers who have had to hold out begging bowls to the public to do their research.


Judging by social media, the entire patient community is in a state of metaphorical war with the NIH.


There is a cry from and on behalf of the pitiable sick for action, sympathy and even courtesy from the bureaucrats in Bethesda, where the NIH is headquartered. The Hippocratic Oath says, “first do no harm.” When people are in pain and despair, inaction is palpable harm.


A congressional hearing is needed to investigate decision-making in the NIH, find out about its budget request to the Office of Management and Budget, and to demand that it listen to those who suffer and those who are trying to help them.


Llewellyn King is executive producer and host of “White House Chronicle” on PBS. He is the creator and co-host of ME/CFS Alert on YouTube. His e-mail islking@kingpublishing.com.




Llewellyn King
Executive Producer and Host,
"White House Chronicle" on PBS;Columnist, Hearst-New York Times Syndicate;Commentator, SiriusXM Satellite RadioMobile: (202) 441-2702Web Site: whchronicle.com
 
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NK17

Senior Member
Messages
592
@Wally
Please extend my heartfelt thanks to Mr. King for his passionate reporting on behalf of all PWME.
And a big thank you to you Wally :hug: we are in this together.
 

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
@Wally

Thanks for posting this. Did it appear in the White House Chronicle? The link to the White House Chronicle seem to be down.

Sushi
 

SOC

Senior Member
Messages
7,849
Funny, Chrome gives me a "Webpage not available" message.
Weird. When I click on the link, it flicks to that page, then gives me "Something went wrong when displaying this webpage". Maybe something wrong with the webpage at the moment?

I got to it originally by clicking on the www.whchronicle.com link and then searching for the title.
 

Wally

Senior Member
Messages
1,167
The article came directly to me from Llewellyn King with a request to distribute this to the ME/CFS community. I don't have a direct link to where the article appears, but I assumed it was published on the White House Chronicles website and in other publications if syndicated by the NY Times.

If anyone has a working link, please let me know and I will edit the first post to add it.

Thanks. Wally :cool:
 
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Kati

Patient in training
Messages
5,497
It seems to me that the whchronices website is down at the moment. I certainly want t share on social media when it apears online. Thank you Llewellyn King
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
I don't think it's been posted on the White House Chronicle website yet.
I can't find it on their website and I can't find it on Google anywhere except on Phoenix Rising.

Link directly to the article
Please click through to the article so that he gets lots of hits. Commenting there would be good, too. ;)
I don't think that's the correct article, SOC.

That is a link to a 2011 article titled:
Chronic Fatigue Syndrome: Misnamed, Misdiagnosed, Misunderstood.
 
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Wally

Senior Member
Messages
1,167
FYI - The link to this article is not yet available. The article is awaiting publication and as soon as there is a link it will be added to the original post.

Wally
 

SOC

Senior Member
Messages
7,849
I don't think it's been posted on the White House Chronicle website yet.
I can't find it on their website and I can't find it on Google anywhere except on Phoenix Rising.

I don't think that's the correct article, SOC.

That is a link to a 2011 article titled:
Chronic Fatigue Syndrome: Misnamed, Misdiagnosed, Misunderstood.
Indeed it is! It really wasn't when I first posted it, though. Honest!:bang-head:

My guess is that it isn't published yet, and therefore not supposed to be available. I caught it in pre-published form with a title search, but that's been fixed since. I suppose we wait for the official publication before we can look at it at White House Chronicles.

ETA: Looks like Ember found the article. :)