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“ME/CFS research and the care of ME/CFS patients will not be advanced through this dangerous sinkhole of examining trauma or lumping our already overly broad category into the shapeless mass of “fibromyalgianess.” Jennie Spotila – “P2P Agenda: What the Huh?

The P2p workshop is coming up in early December. For a process that’s supposed to address future research needs the panel, as reported by Jennie Spotila in the blog below, turned back the clock when it choose some of it Workshop participants.

How did two psychosocial and a pain researcher get on the P2P workshop panel?

How did two psychosocial and a pain researcher get on the P2P workshop panel?

Three of the participants, Dr. Klimas, Dr. Snell and Dr. Jason are breaking new ground in ME/CFS pathophysiology and diagnostics, but the other three are another story.

Dedra Buchwald used to lead a NIH funded CFS research group that did some good work, but she’s done little ME/CFS research in the last ten years – almost all of which has been pyschosocial based. The results of her 2010 study on “Adolescent Offspring of Chronic Fatigue Syndrome Mothers”  – that explored the potential effects of having a mother with ME/CFS – were no doubt awaited eagerly by many.

In her lacerating blog Jennie Spotila points out this gem from a topic summary c0-produced by Dr. Buchwald on Chronic Fatigue Syndrome

““Treatment-resistant patients should be referred to a mental health professional.

 

This woman is going to advise the P2P panel on gaps in ME/CFS treatment? Her former assistant, Niloofar Afari, also on the panel has recently explored links between PTSD and ME/CFS, personality, and psychological trauma. She and Dr. Buchwald recently found that “Both emotional instability and extraversion are related to chronic fatigue and CFS”.

The P2P effort took an easterly turn – as in all the across the ocean to the U.K – when they plucked up two of the few U.S. researchers to focus on psychological matters in ME/CFS to sit on this panel.

Finally, there’s Dr. Clauw, a Fibromyalgia, not an ME/CFS researcher – focused mostly on central sensitization. He’s a respected researcher, but his stance on the defining Fibromyalgia  and “fibromyalgianess” has worried some that it will detract from getting at the physiological causes of FM. A lumper, not a splitter he’s an unsettling choice to advise the P2P on a disorder in which the need to define subsets is paramount.

What happened? Check out Jennie Spotila’s blog P2P: The Agenda – What the Huh?  to learn much more about this strange panel.

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