“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?
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.
I have always wondered about the PTSD diagnosis in people with CFS. I have been diagnosed by two psychologists as having PTSD — but they diagnosed it as being caused by “prolonged and severe illness experience”. I.e., my PTSD didn’t cause my CFS, but my CFS caused my PTSD. I’m one of those unusual childhood/gradual onset patients (symptoms started when I was 3, gradually getting worse until I was disabled with it at 27), and I had no traumas in my childhood or adulthood, other than having all the symptoms and limitations of CFS and the various other illnesses associated with it. When studying PTSD in PWCs, do they ever take into account that the trauma the patients may be reporting is the onset of their CFS and the disruption in their lives?
And wasn’t it in your columns, Cort that I read that Nancy Klimas said that most of her patients have PTSD from how the medical community has treated them?
However, I am actively pursuing any treatment for PTSD that I can get, trying to make the roller coaster experience of this illness less traumatic for me, and life with it more enjoyable.
Go for it Tammy…for me, anything to calm down the fight/flight reaction…Yes, I think Dr. Klimas did say that.
I think there have just been some studies that looked at whether PTSD was linked to ME/CFS. I don’t think anybody has compared the two groups physiologically. It would be interesting.
Good luck in taming the roller coaster!
I must agree with Nancy on this as I was diagnosed with PTSD as well but mine was due to the sudden and unexpected desertion of my husband of 13 years because of my FM/CFS symptoms. I did get over it though, after several years of counselling and with the use of cognitive therapy and brain plasticity. I do believe we would be moving backwards with the PTSD inclusion in the causes of FM. It will only add to the confusion of the who, what, when, where and how’s of this and associated disorders.
I agree. Van Elzakker studies PTSD – he says there’s some overlap but there are distinct differences between it and ME/CFS as well.
This entire exercise has always been part of the movement, aided by the psychiatric group in the UK, to do what Strauss said to Fukuda in a letter that appeared in a fairly recent blog: to get rid of ME as a separate clinical entity. The moves here are clear – set up panels of non-experts, give them things like the PACE Trial and call it ‘evidence-based research’. Or include just a few experts whose contribution will be steam-rollered over, but they can be used to say they were included. P2P (by the way, what is the ‘pathway to prevention’ of an illness which hasn’t even been defined properly, let alone have its pathophysiology understood) will adopt a psychosocial view, this will be fed into the IOM result, which is already clearly set down this path, and even CFS will now disappear (ME already has, in the US Govt information, as far as I can see) into CMI – complex multisystem illness, which will be labelled a ‘functional’ disorder for which the ‘evidence based treatments’ will be CBT and GET. Why is anyone even remotely surprised? This is entirely a PR exercise with a fore-determined conclusion. Someone has pointed out that disability payments for psychiatric disorders only last for two years – for physical disorders, it lasts until retirement age. This is an exercise solely for the benefit of insurers and has nothing whatever to do with concern for patients. Hence all the secrecy, redacting etc etc.
Well said, Nancy.
I think and hope you’re wrong on this Nancy..I’m pretty sure you are – but only time will tell.
I was encouraged that the AHRQ report did not play up the CBT/GET results – it’s hard to see anyone saying either are curative given that report. Plus, the IOM panel has many ME/CFS experts who would never countenance that nightmare scenario you envision. That’s why I’m hopeful….
The US is not the UK – although I must say the last additions to the panel were pretty disturbing…
Hi Cort, the link in this sentence at the end of this post goes to an NIH study webpage rather than a blog. I’d like to read Jennie’s blog! “Check out Jennie Spotila’s blog P2P: The Agenda – What the Huh?” Thanks for all your efforts and fantastic reporting to keep us up to date!
Sorry Jane, here it is – http://www.occupycfs.com/2014/10/31/p2p-agenda-what-the-huh/ and be sure to check out her next blog on who was not invited to the Workshop – http://www.occupycfs.com/2014/11/06/p2p-the-disinvite-list/