After a couple of further comments from others, turkeybaster (a doctor in his/her late twenties) has responded again.
It puzzles me how any doctor can persist in such uncritical acceptance of the efficacy of CBT and GET for ME/CFS, when any half attentive look at the research on which such a view is based will show disturbing signs of shoddiness. But the following seems to be turkeybaster's refrain: "It bears repeating that CBT and exercise programmes are the only treatment currently proven to provide any benefit to sufferers of CFS."
One of the two commenters drew turkeybaster's attention to David Tuller's letter to the Lancet with its numerous signatories, but it seems to have had no effect in persuading turkeybaster to accept that there might be something wrong with PACE et al.
If anyone can bear reading the whole of turkeybaster's latest comment, I have pasted it below:
"Donnie, I'm not really sure what you're getting at in your whole paragraph on EBV - almost every adult has serological evidence of exposure to EBV at some point, and there is no evidence for it as a causative agent of CFS. As for the patient and relative I mentioned, you're just going to have to accept that your cynicism is misplaced.
And, despite myself, I'm going to have to tell you that homeopathy isn't "evidence based". That's the whole point: there isn't any evidence that homeopathy has any effect beyond the placebo. It's ironic that you write of "quackery" in British medicine, dismiss large swathes of peer-reviewed literature as "methodologically flawed" and essentially suggest, on the evidence of a book review on amazon, that I was negligent in my treatment of a patient and then accuse Dr O'Sullivan of "lazy prejudices"!
It bears repeating that CBT and exercise programmes are the only treatment currently proven to provide any benefit to sufferers of CFS. The Cochrane organisation have produced meta-analyses of the research for these interventions - we're not just relying on one or two studies here, Loaf, this is about as close to "fact" as you get in scientific discourse. The review for CBT is old now, published in 2008, but the review for exercise therapy was recently updated. Feb 2016. They show benefits for both interventions. They are not cures, and problems are identified with compliance, but for those who tolerated the treatments, they are proven to improve symptoms. And that's all we've got. This much is proven, nothing else (as yet) has been shown to help.
As for the rituximab trial, I'd caution you, Loaf, not to mention it in Donnie's presence as the primary outcome measure is entirely based on self-reported fatigue scores. It shall be dismissed as quackery! In all seriousness, we're just going to have to wait to see if the results of the small scale trials are replicated. Any results are going to have to be verified by other teams, as knocking out a patient's B cells to treat a non-fatal condition is a pretty drastic step. We're going to have to be damned sure it works! I can see that there is a crowd funding initiative in the UK to start a similar trial here which is a pretty innovative step - and it has the added benefit that the trial will be out of the influence of drug companies.
I don't really see a conflict with defending Dr O'Sullivan's position on CFS and ongoing biomedical research. The condition currently has no biological basis and there are no universally accepted theories describing the pathophysiology of the illness - of course there should be ongoing research! I'd also draw your attention to the example you both seem to have ignored in my original reply, that immune dysfunction has long been known to be a feature of depression. The diagnosis is psychiatric, but biomedical research revealed its effects go far beyond what was originally thought - biomedical research should never stop! Equally, biomedical abnormalities do not alter the fact that depression is a purely psychiatric diagnosis.
I think you've hit the nail on the head, Loaf, when you write that there may well be a part physical basis to CFS, but I'm baffled as to why you think neither myself nor Dr O'Sullivan accepts this? I suspect the answer to this whole condition is going to lie somewhere at the point where physical health meets psychological well-being. Factors of behaviour, personality, psychology and environment as well as physical health are all going to play a part. I suspect we disagree, but for me that's what makes the conversion/somatisation paradigm so useful. It's a working model for the condition, if not the whole answer.
There seems to be a clamour among CFS sufferers for a purely biomedical explanation for their condition, and I fear there isn't going to be one. As I said above, I think it's going to turn out to be far more complicated than that. And this is why we need to embrace the therapies that the evidence shows DOES help. There's a lot of talk elsewhere of similarities with AIDS before the causative agent was found, or MS before the inflammatory demyelinating plaques were discovered. I actually find that sort of comparison quite offensive: these are progressive, fatal diseases with objective abnormalities detectable on clinical examination and/or routine lab bloods before the pathophysiology was understood. CFS is not the new AIDS, and it's not the new MS.
I'm glad you've read the whole book, Loaf, but I'm sorry you may have missed some of the subtlety of it. The underlying meaning isn't that medicine has all the answers, or that doctors always think they're right - on the contrary, Dr O'Sullivan's humility is striking - or even that CFS symptoms are "all in your head". Treatment of conditions of whatever aetiology requires first a therapeutic alliance to be forged with patient and clinician. Sometimes that's as simple as sticking out an arm and allowing me to pump you full of antibiotics, but often its about a doctor describing that they don't have all the answers but offering treatment that has been shown to help. This book is as much about this alliance (and the consequences of a lack thereof) as the neurological deficits, and that's what made the book so enjoyable for me. The CFS/ME debate is an unnecessary sideshow, and detracts from the true message of the book."
