NIH

Paradoxically, I'm too ill this evening to write in detail about the findings released last week by the NIH.

I agree w/ the great Dr. Lucinda Bateman--quoted here in the NPR piece--that other research has already discovered much of what the NIH concludes.

No matter what, it becomes far easier for a person w/ M.E. to sue their healthcare provider if said provider is failing in their duty to care:

Day 68 of 365#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #cfsisamisnomer #ChronicIllness #Disability #NIH Clues to a better understanding of chronic fatigue syndrome ...

I've had M.E. for 32+ years and have written about it extensively for the Washington Post and for other publications.

Since I first became ill in 1991, the CDC and the NIH have been derelict in their duties to protect the public from a pernicious illness that's disabling, degenerative, and potentially fatal.

In Hillary Johnson's seminal tome Osler's Web: Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic (Crown Books 1996, reissued by Penguin Books 2006), she broke the story that the CDC had misappropriated tens of millions of dollars approved by Congress for the study of M.E., then still called "Chronic Fatigue Syndrome" or "CFS".

[Edit: When I first published this piece last night, I incorrectly wrote that the Washington Post had first broken this story. Hillary Johnson and I have known each other online for years--which I've always considered an honor because I first read her reporting on M.E. in Rolling Stone in the Eighties--and I appreciate that she reached out to me to relay that she broke the story. I appreciate the kind manner with which she did so and I'm mortified by my error. I read Osler's Web when it first came out and highly recommend doing so if you haven't already. More about Hillary Johnson and Osler's Web on her site here: www.oslersweb.com/the-book]

Because it's important to understand how we got here, at a point where said illness was wrongfully either dismissed or underestimated until millions of lives were destroyed and an untold number of persons were dead, here's a truncated version in a 1999 Washington Post story, for free:

www.washingtonpost.com/wp-srv/national/daily/may99/cdc0528.htm

In 2000, then-CDC director Jeffrey Koplan had to apologize during a Congressional hearing because, twice in two years, the CDC got caught misappropriating funds Congress had earmarked for CFS [sic]. Seriously, what kind of fuck weasel bullshit venality is this:

www.thelancet.com/journals/lancet/article/PIIS0140-6736(05)7...

I'll get to the failings of the NIH as I go here--others have written about all of this before, but I'm alarmed by how many persons with M.E. still don't know the history of the illness and how it came to be either derided or ignored by the medical establishment.

We're in a fight for our lives and information is power.

Day 4 of 365

#MyalgicEncephalomyelitis #MillionsMissing #pwme #cfsisamisnomer #Disability #CDC #NIH #ChronicIllness #oslersweb #hillaryjohnson

I’ve been diagnosed with a lot of things over the years— I’ve had medical issues since I was born. I’m 36, and was dx ‘d with #FMS at age 14. Since that time, I’ve also been diagnosed with #Lupus , #ME , #CFS , #CRPS , #Osteoarthritis , #PolymyalgiaRheumatica or #StillsDisease , #POTS , and so on and so forth.
But a friend of mine, who has also gone through the gamut of diagnoses, was recently dx’d with Mitochondrial Disease— which is id’d as a #RareDisease by #NIH , but from what I can gather via my research, could very easily be the cause of ALL of these things. Anyone else have this diagnosis?

#52SmallThings