What is chronic fatigue syndrome, and why aren’t we doing more to treat the illness? Washington Post

[Soundthealarm21]

By Julie Rehmeyer October 6 at 5:59 PM
Eight years ago, collapsed on a neurologist’s examining table, I asked a naive question that turned out to be at the center of a long-running controversy: “So what is chronic fatigue syndrome?” I had just been diagnosed with the illness, which for six years had been gradually overtaking me.

“We don’t understand it very well,” my neurologist said, his face blank. He could recommend no tests, no treatments, no other doctors. I came to understand that, for him, the term chronic fatigue syndrome meant “I can’t help you.”

Click the link at the bottom for the meat in between.

These disputes are heartbreaking when the needs of CFS patients are so great. Even the high-quality treatment I got from Klimas helped me only slightly. A year after I saw her, I heard from some patients who had significantly recovered from CFS through assiduously avoiding exposure to mold and other environmental contaminants. Although I considered the theory wacky, I was desperate enough to experiment. And for me, it worked. Two years later, I can go running, write articles and travel with my new husband. Every time I do, it feels like a miracle.

But I don’t think it is. My recovery has almost certainly come through physiological changes in response to my avoiding mold.

Copy pasta from http://www.washingtonpost.com/natio...fff312-d458-11e3-8a78-8fe50322a72c_story.html

 

[Simon]

What an excellent piece. I think it's great we have a successful science writer, Julie Rehmeyer, writing in The Washington Post about the illness. She covers the controversy around the P2P and IOM contracts, and includes this gem about the lack of NIH funding:

The National Institutes of Health spends only $5 million a year on CFS research; by comparison, it spends $3 billion on HIV/AIDS research (which, like CFS, affects about a million Americans). Mariela Shirley, an official at the NIH Office of Research on Women’s Health, says funding is determined by the number of researchers in a field, their experience in competing for NIH funding and other factors.

What is chronic fatigue syndrome, and why aren’t we doing more to treat the illness? - The Washington Post

 

[Cheesus]

I improved enough to work a little bit, and it was a tremendous relief to have a knowledgeable and compassionate doctor behind me. Still, Klimas (who also treats HIV/AIDS) says that if she had to choose between having HIV and having CFS, she’d unquestionably choose HIV.

That is of no surprise to me whatsoever.

 

[Battery Muncher]

Haven't read it yet, but I notice that this is ranked #5 in the "Most Read: National" news on the Washington Pot website!

So hopefully this is garnering some attention. I don't know if it's mentioned in the article, but this could be a great opportunity to push the Lipkin Microbiome Project!

 

[Battery Muncher]

Put up a comment to raise awareness of the Lipkin study. I haven’t had time to read the article yet, so don’t know if it’s appropriate but whatever…

I posted under the name "BMPR".

 

[Gamboa]

Great article. I just posted it to my facebook page. Everyone should do the same. Post it anywhere and everywhere. I'm printing it for my latest doctor. Hopefully she will read it.

 

[Simon]

There's more! How the definition of chronic fatigue syndrome keeps changing - The Washington Post

Julie Rehmeyer's full article includes a 'side bar' about problems with the case definition - unfortunately in the online version this just got a link as 'related content' at the end rather than being included alongside. It's only a few hundred words.

Read it

 

[ballard]

It appears that the Chicago Tribune has reprinted the story.
http://my.chicagotribune.com/#section/-1/article/p2p-81610843/

 

[Forbin]

Mariela Shirley, an official at the NIH Office of Research on Women’s Health, says funding is determined by the number of researchers in a field...

Talk about a Catch-22. The level of funding is dependent upon the number of researchers in the field... but researchers will go where the funding is, so the number of researchers in the field is dependent upon the level of funding.

 

[Sasha]

It appears that the Chicago Tribune has reprinted the story.
http://my.chicagotribune.com/#section/-1/article/p2p-81610843/

Can't be viewed in the UK.

 

[Valentijn]

Can't be viewed in the UK.

I can see in it the Netherlands, though the actual link is http://www.chicagotribune.com/news/...hpost-bc-health-fatigue07-20141007-story.html

 

[Bob]

Can't be viewed in the UK.

It seems to be exactly the same as the Washington Post article, so we're not missing anything.

 

[Little Bluestem]

I still opened both so both papers will know that it is a subject of interest.