Do you mean that there may be a subgroup of people with an ME/CFS diagnosis whose symptoms develop as a consequence of information they acquire about the illness (ie their beliefs), who may respond positively to a 'dummy' biomedical intervention that they believe will help them, but not to a psycho-behavioural intervention that they do not believe in?
What about the children to parents with Huntington’s Disease that experience symptoms before testing, but turns out to be negative? Would they have to have an aberrant neurological state? What does an aberrant neurological state mean?Something like that would be one possibility. Of course the information would not be the only causal factor. There would need to be some aberrant neurological state of the person being informed.
Fluge and Mella are currently doing a small study on Daratumumab:Such patients may be hard to find, and hard to catch at the moment they flip, but what if Dr Fluge is Rosetta-stone-producing doctor? What if he's such a brilliant generator of powerful placebo effects that he triggers real remissions (because I still don't find those 6-month rituximab remissions plausible as self-delusion)?
Could we get him to run a new clinical trial of a therapy that he genuinely thinks could be a goer, in the hope that we can catch the switch flipping in some of his patients?
The same possibly has occurred to me, although it would be surprising to me if such people did not respond in trials of psycho-behavioural interventions. Presumably, the motivation for many people who volunteer for trials is because they believe the invention may help them. But perhaps it could be the degree of belief in the intervention that matters.Something like that would be one possibility. Of course the information would not be the only causal factor. There would need to be some aberrant neurological state of the person being informed.
Wouldn’t a hypochondriac be very interested in participating in treatment trials? I’m assuming they do not want to be sick at all - so they would be willing to test anything to get better.It has occurred to me before that if that if hypochondriacs exist it would be surprising if at least some did not convince themselves that they have ME/CFS. Similarly, it would be surprising if malingers did not try to convince others that they have ME/CFS.
If the subgroup that I describe above existed then we would not expect those patients to respond to CBT and GET, only to biomedical interventions that they were sufficiently convinced would help them.Given how few people that respond to GET and CBT in the trials, it would indicate that there are quite few hypochondriacs among the participants.
The same possibly has occurred to me, although it would be surprising to me if such people did not respond in trials of psycho-behavioural interventions.
I think I understand your point but I would be interested to know how this sentence ends.The real problem with the psychological medicine people is not so much that we should not consider that but the
I think I understand your point but I would be interested to know how this sentence ends.
What is the reasoning or argument behind this? Why should we not be surprised?we should not be too surprised if some people who get a diagnosis of ME/CFS have a primarily 'neuropsychiatric' disorder, like my wife and her psychosis.
What is the reasoning or argument behind this? Why should we not be surprised?
For the sake of the argument, let’s assume this is correct. I’m not comfortable with it yet and I’m not sure I completely understand it either.She said that some patients (with ME/CFS) clearly had a physical problem. Others seemed clearly to have a psychiatric problem. The difficulty was knowing how to distinguish the bulk of patients where it was not possible to absolutely sure. And note that 'psychiatric' did not necessarily mean not physical here. I think she meant neuropsychiatric.
Would you expect a neuropsychiatric ME/CFS patient to any biological findings (i.e. deviations) that are similar to those with physical ME/CFS?
we don't quote these classics enough as coercion and social pressure is used to an extreme extent in wangling 'results' from CFS peopleThe appropriate context being Milgram and a perspective on obedience and conformism, because people will say what they believe they are expected to say.
Which is why empirical measurement data is a good basis for science and self reporting data is not.
It is comparable to the problem of anthropomorphism in zoology. You have to rule out cognitive bias in the experimental method. Anything less is not credible.
Is the Placebo Powerless? — An Analysis of Clinical Trials Comparing Placebo with No Treatment
Conclusion:
"Outside the setting of clinical trials, there is no justification for the use of placebos."
Interesting. From the Scientific American article:"Revolutionary drug for schizophrenia wins US approval" (Nature, 2024) "New treatments are rewriting our understanding of schizophrenia" (Scientific American, 2025)
Found this thread: https://www.s4me.info/threads/call-...l-after-evidence-of-autoimmune-trigger.33289/Interesting. From the Scientific American article:
“At Oxford, Kabir, psychiatry professor Belinda Lennox and their colleagues are currently conducting a clinical trial to examine whether rituximab, an antibody used to treat arthritis and other autoimmune disorders, can effectively treat psychosis in people who have detectable neuronal autoantibodies in their blood.”
Interesting. From the Scientific American article:
“At Oxford, Kabir, psychiatry professor Belinda Lennox and their colleagues are currently conducting a clinical trial to examine whether rituximab, an antibody used to treat arthritis and other autoimmune disorders, can effectively treat psychosis in people who have detectable neuronal autoantibodies in their blood.”