Discussion in 'Latest ME/CFS Research' started by Dolphin, Dec 20, 2014.
The main data from this is:
A few comments from me, for what they are worth:
(i) I saw this mentioned somewhere that 84% of UK neurologists didn't think it was neurological. However, the question involves "in the usual sense of 'neurological'"
(ii) Responses might have been biased by the context of the question: "Consultant neurologists registered with the Association of British Neurologists (ABN) were contacted by post and invited to complete a brief survey. This comprised 33 questions; 31 about conversion disorder, two about CFS."
(iii) Many, probably most, neurologists are probably not aware of much if not most of the research. A more valid survey would be to present them with the evidence and then ask them whether they thought CFS was neurological or not.
Thanks D. Considering this seems to have had some impact on how CFS is being treated at the moment, it makes sense to have a closer look.
Or to ask 'do you think it makes sense to class CFS as a neurological condition?' I think it currently does, although I don't think we can say CFS is a neurological condition, in the usual sense of ‘neurological’.
Maybe worth drawing the attention of @charles shepherd to the points made.
I will be happy to field this one: Yes, ME/CFS is a neurological condition. If you're a neurologist and you didn't know CFS has shoved away the proper name of ME, then don't waste any more time - quit your job now and change careers. If you didn't even know ME is neurological - quit your job as a neurologist and, well, I would think long and hard before I ever admitting to once having been one.
As for the neurological/mental basic dualism thing, what a load. Mental is just a term for a disjointed category of brain symptoms. Neurologists would be well advised to steer clear of that quagmire. Don't refer to mental. Stick with brain functions and symptoms.
Is rehabilitative CBT for CFS (distinct from coping CBT) overreaching psychobabble? A survey of UK patients.
1) Did you know that rehabilitative CBT presents your symptoms and impairments as primarily perpetuated by abnormal illness beliefs and maladaptive behaviours which can be entirely reversed with psychotherapy and exercise?
2) Did you know rehabilitative CBT is being promoted as a safe and effective treatment based on good scientific evidence which challenges patients' irrational fear of activity, despite no objective evidence that it increases total activity levels?
3) Do you accept the claim that modest self-reported improvements without objective improvements are a full recovery?
4) Do you accept the claim that your physical function score can indicate significant disability at the beginning of a trial, stay the same or even decline a little during that trial, but then be a strict criterion for full recovery at the end of that trial?
5) Do you accept CBT proponents' allusions that modest improvements in self-reported fatigue are far more important or relevant to patients than other major symptoms, physical activity, walking ability, employment and welfare outcomes?
6) Non-blinded open-label drug efficacy trials without placebo control are regarded as potentially methodologically flawed because of issues such as placebo response and reporting bias. Do you think it is acceptable for non-blinded open-label CBT efficacy trials to be promoted as the highest grade of clinical evidence, when trial participants are told at the beginning that CBT is "safe and powerful" and when CBT instructs participants how to focus less on symptoms and tells them that they have misinterpreted and/or exaggerated the severity and nature of their symptoms?
7) Do you believe that promotions of rehabilitative CBT are scientific, in the usual sense of 'scientific'?
8) There is a distinction between rehabilitative CBT for CFS and coping CBT for chronic disease in general. Do you accept proponents' claims that rehabilitative CBT for CFS is the same as the CBT used for cancer, heart disease, and diabetes?
9) Do you believe that people who vigorously objected to the scenarios in the previous questions are by default just ideological militant extremists who challenge the research because of Cartesian dualism and the stigma of mental health etc?
Since the principle proponents of the current biopsychosocial theories typically acknowledge that there was a biological illness that began the process, I think it only fair to apply the same reasoning to their profession. I note that psychiatrists, as opposed to psychologists and psychotherapists, are required to obtain a medical degree. This is the initiating event of their professional careers. What needs to be carefully examined is the extent to which they suffer from "false competence beliefs" on medical subjects thereafter.
Sounds very dodgy to me. Basically a lot of care needs to be taken in designing questionnaires so that one answer doesn't frame other answers (i.e. give suggestions about following answers). So by asking 31 questions about conversion disorder do they just suggest that CFS is similar and get those answers without the person answering putting much thought into it.
Given the lack of sensible research and the non stop propaganda from Wessely White and co, the result is not surprising.
I find it incredibly funny that so many supposedly rational and educated people believe in conversion disorder. The demonic possession and witchcraft of the modern age.
This is very interesting as I am pretty sure Wessely reports the question as, "Do you believe that ME is a neurological condition, in the usual sense of ‘neurological’?
Secondly a syndrome by defintion as in CFS is not one thing its a loose cluster of symptoms of unknown origin. However in terms of CFS listing in the WHO ICD it is in the appendix under see G93.3 of the neurological sections. The question is especially devious when centring it in the context of a host of questions of conversion disorder. In Psychology this could be easily interpreted as using the power of suggestion.
Also were the responses anonymous because if not it strikes me that these questions and the way they are framed are the same as the experiment where you ask 10 people how many times a bell struck after pre arranging with nine people to say 9 times when the bell actually struck 10 times.
Even if the question were anonymous there could still be an element of the above at play.
It would have been interesting if they had asked the question, "how many now understood to be physical diseases have been thought to be some version of conversion disorder in the past" and can you name any right up to last two decades where people where said to be malingering due to issues like inadequate testing in the absense of MRI machines".
How about they asked the physicians, do you know how many definitions of CFS there are and their strengths and weaknesses in identifying groups with neurological issues?
The above question is also misleading as it only asks if the condition is neurological and doesn't ask if it is immunological or viral etc.
They could have also asked (answer for each period of time),
"if you were a physician 100, 50, 25, 10, years ago and you encountered a patient with MS, would you have diagnosed him with a neurological condition, neurasthenia, malingering, demonic possession or conversion disorder and what tools would you have used to aid in the diagnosis.
How about one final question, "should psychiatrists or any other physician diagnose conversion disorder or CFS without carrying out a full battery of tests and discourage further testing on such patients in order to come to a conclusion of the patient being medically unexplained"?
Hmm, I think CFS is caused by a virus that sits in our brains and attacks the central nervous system as well as every other system.
I have had the following exchange with Wessely on Twitter, where he brought up the subject of the Wojcek et al survey. As ever, his argument is circular and he probably won't reply further.
@thegodofpleasur 16h16 hours ago
@WesselyS Given the totality of evidence, do you still maintain ME/cfs is not neurological? http://tinyurl.com/l5d5v74 @maxwhd @CelticButterfli
Simon Wessely @WesselyS 14h14 hours ago
@thegodofpleasur @maxwhd @CelticButterfli a study showed that most UK neurologists do not think so, in the usual sense of the word
@thegodofpleasur 5h5 hours ago
@WesselyS Could you please supply details of that study. I would really like to see it.
Simon Wessely @WesselyS 4h4 hours ago
@thegodofpleasur @maxwhd @CelticButterfli Wojcek, Armstrong, Kanaan. J Psychosom Res 2011: 70: 573-4.
@thegodofpleasur 3h3 hours ago
@WesselyS PDW & your prior work probably did much to influence that opinion. I therefore doubt it will continue.
@thegodofpleasur 11m11 minutes ago
@WesselyS Might the dictat in NICE CG53 to do no meaningful tests also have something to do with Neuros viewpoint ?
In my opinion, the most important question to ask Wessely is whether he still believes, regardless of the initial trigger or starting point, that the chronic symptoms and disabilities of ME/CFS are primarily or predominately maintained by the (allegedly) unhelpful cognitions and maladaptive behaviours of the patient, rather than by underlying pathophysiology.
This would avoid the ongoing quagmire of nomenclature and classification issues etc and reveal where he stands. Not many people argue against the idea that the management or response of an illness can potentially be affected by cognitive and behavioural factors, or even with the idea that such factors can, to some limited degree, affect the course of some illnesses. The problem has always been with the allusion that ME/CFS is essentially a cognitive behavioural illness.
CBT/GET for CFS has been oversold. In RCTs it only seems to help a slim minority of broadly defined patients, over and above the control groups. The self-reported benefits are modest, and not matched by objective measures of function. The RCT results are a best case scenario compared to real world outcomes, and have not clearly proven themselves to be more than a placebo response or superficial changes to questionnaire-answering behaviour.
No decent research has been done on severely patients, those meeting stricter ME criteria, or those with ME-ICC style post-exertional symptoms etc. These patients are most at risk from sweeping claims that real-world CBT/GET are generally safe. Objective outcomes in RCTs dispute the claim that patients are actually doing more as a result of these therapies, so it seems that the key to safety with CBT/GET is, ironically, not increasing activity levels.
Wessely has recently stated that "The placebo is one of the best interventions we have." Then perhaps the next CBT/GET trial for CFS should be compared against homeopathy and a placebo-control for an experimental drug which the patients are told or conditioned from the outset (as they were in the PACE Trial for CBT and GET) that the treatment is powerful and safe, helps the majority of patients feel much better, and will reverse the physiology causing their symptoms and disabilities.
Notice how he didn't give his own opinion...
Nor did he mention the context of that little survey. From what I recall, neurologists were given a description of psychosomatic disorders and then asked how they would classify CFS.
Plus a no treatment arm. Just to keep the placebo-control honest.
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