Please sign this petition to keep psychiatry out of the NIH study

[Countrygirl]

https://my.meaction.net/petitions/k...?source=facebook-share-button&time=1458710152

KEEP PSYCHIATRY OUT OF NIH STUDY ON ME/CFS
MS

Campaign created by
Mary Schweitzer


47
of 100 signatures
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TO: DR. FRANCIS COLLINS, DIRECTOR OF NIH
None of the 40 patients brought into the upcoming in-house NIH study of ME/CFS should have been, or concurrently be capable of, a diagnosis of:

* Major mood disorders, concurrent depression or concurrent anxiety
* Medically Unexplained Symptoms (MUS)
* Somatic Symptom Disorder (SSD)
* Major psychiatric disorders
* Somatoform disorders

Why is this important?
This is the first study on ME/CFS conducted by NIH in two decades. One million patients suffer from this disease, too long neglected by both CDC and NIH. At any point in time 500,000 American ME/CFS patients cannot work at all; one-fourth can only work part-time and one-fourth can work full time, but it is unclear what else they can do as a result. Other studies have suggested that at least 250,000 Americans are bedridden and/or homebound by ME/CFS. Patients deserve the best study NIH can give them, not a replay of outdated psychiatric theories.

It is critical that the Principle Investigators recognize existing biomedical research on the disease, as well as the results of recently commissioned studies by the Institute of Medicine for DHHS and the P2P (Pathways to Prevention) program at NIH.

Finally, there will only be 40 patients in this study. Given the complexity of this disease, it is imperative that the 40 patients chosen actually have ME/CFS.

We are concerned that the "expert committee" does not contain experts on ME/CFS as a biomedical condition. The Lead Associate Investigator (LAI), who will "coordinate screening of potential participants" according to NIH, published an article last year which stated "The discordance between the severity of subjective experience and that of objective impairment is the hallmark of somatoform illnesses, such as fibromyalgia and chronic fatigue syndrome."

 

[duncan]

Signed.

 

[searcher]

I just wanted to bump this as Mary and #MEAction would like to deliver it to NIH soon and it would be great to gather a few more signatures before submission.

 

[Amaya2014]

Signed. I strongly agree that the study group be as diagnostically "clean" as possible. My one concern is that the complexity of obtaining a diagnosis can sometimes cause patients to be misdiagnosed or labeled with somatoform, personality, or other diagnoses that would then potentionally keep them from being able to participate.

That being said, since it's only 40, finding a good cohort that may have escaped these injustices may not be too difficult and would hopefully strengthen the integrity of the results.

 

[Jennifer J]

Signed.