I've seen it time and again we all have, just look at the old message board posts where people were claiming cures from the Lightning Process (unless you honestly think saying "no I don't do my illness" can actually remove organic illness in a matter of seconds). Regardless Dr Leonard Jason studies support it - his work was used for the CCC.
But anyway, I think people have missed the point - I am not extolling the virtues of a psychiatric explanation for ME/CFS - I am merely pointing out the fact ----- That there are a huge number of people out there who honestly think that have ME to the point of making up the symptoms, and when they are tricked into believing something else (for that is what CBT/NLP/LP therapies do), their symptoms evaporate. Therefore quite clearly, in the context of those patients ME/CFS is a meme - a behaviour they learned from someone else.
I am aware you think you are not extolling the virtues of psychobabble .... except that I think you are unaware that you are extolling the virtues of psychobabble, just not with respect to ME. I will get back to that.
Now, we could call those patients misdiagnosed (except a lot of them actually want a diagnosis of ME and have sought one out from CFS specialists who are only too keen to oblige, thus reinforcing their belief, point 3 above) or we could call them other names like fakers, or delusion etc, but the truth of the matter is:
i)that they outnumber the people with organic disease
ii)what is ME/CFS except a collection of symptoms
iii)and the people who do have organic disease have a whole range of different illnesses, anyway.
This leads back to my point - to fight over who has claim to M.E. in an insane war of words is THE problem. Instead, if Professor Edwards sat down with the psychiatrists (Wessely/White/Sharpe) and had a long chat, and each one listened to the other, perhaps then there could be an agreement - some patients have an organic disease, but some patients don't, and quite honestly the term CFS/ME is useless and we should separate patients out before more get hurt.
Such a hypothetical falls into the psychogenic fallacy. Its fallacious, period.
Just because someone thinks they have ME, and may be mistaken, and may seek out a diagnosis, does not mean they do not have an organic disease. That assumption is the psychogenic fallacy. They may have a different organic disease. They may have a different brain disorder. Whatever that is might be self limiting and so resolve on its own. Then someone doing whatever treatment they are on may mistake that treatment for a cure for ME.
All this misses the most obvious issue. Post viral fatigue
is about an order of magnitude more common than ME. It resolves on its own, slowly. It is considered that very very few have it take five years to recover, most recover in six months to a year. These patients routinely get diagnosed with CFS now, which is over-diagnosis or misdiagnosis. Doctors see this all the time. Currently I am of the view that this is a huge problem, that when doctors conflate post viral fatigue with ME they are primed to start inventing reasons why patients don't get better, or even get worse.
The only disease I consider undoubtedly a thought disorder at this point is aberrant beliefs from things like cult brainwashing. People are indoctrinated into following a circumscribed way of thought. All others I consider, currently, based on current evidence, to be organic brain disorders, for which thoughts and emotions are contributing inputs into brain dysfunction, but not a cause. Mind is to me a convenient simplified description of brain function.
Fighting over ME versus CFS is not helpful at this point, but not for the reasons described here. We simply do not know, in reality, what ME is. We know pieces of the puzzle. We also know that huge numbers of CFS patients are misdiagnosed, and this ranges all the way up to over 70% in Ireland. We need definitive biomarkers. Further, arguing that the WHO ICD classification shows that ME is not universally considered psychiatric is fine. Arguing it proves ME is organic is wrong though ... its just a bureaucratic code, and doctors know this. Its argument by authority, another fallacy.
Regarding the MS analogy from, @
alex3619. Look, this isn't about misdiagnosis. Imagine the following
1) There were thousands of people who were all claiming to have MS and 80-90% of them were actually mentally ill and were delusional.
2) Imagine a group of doctors reinforcing that diagnosis as a label in those patients.
3) Now imagine another group of doctors who believed MS was really an organic disease, but there was no way to tell which patients had what.
4) Further, those well meaning doctors then started arguing with the others in a never ending war of words.
5) And further the well meaning doctors refused to subgroup the few patients who actually had evidence of organic disease thus research was always based on a heterogeneous cohort where 80% were delusional.
Two can play this game of hypotheticals. Its a construct that can be manipulated to say what you want it to say.
1) Suppose that thousands of people had an organic illness and thought it might be MS. Suppose further that 90% were mistaken. So doctors failed to confirm a diagnosis of MS.
2) Imagine a group of doctors, unable to pin a diagnosis on these patients, but concerned that they needed help in a world in which patients without a diagnosis get ignored and further investigation and treatment is not funded.
3) Now imagine another group of doctors who believed MS was really an organic disease, but there was no way to tell which patients had what. (This is the case a lot of the time. MS is often confused with ME, and vice versa. Some cases clearly have one or the other, and other cases are in between. ME also has brain lesions that show up on scans, and similar symptoms.)
4) Further, those well meaning doctors then started arguing that medical diagnosis requires objective evidence. They argue for the science with those who want to operate in medicine and ignore the science.
5) And further these well meaning doctors were unable to get grants for subgroup studies because funding agencies and reviewers didn't want to see subgroups due to preconceived notions of what ME and CFS are.
research was always based on a heterogeneous cohort where 80% were delusional.
On this point in particular, I again want to point out its probably the psychogenic fallacy, depending on what you mean by delusional. There is no simple way to show they are delusional. They might indeed be mistaken. That is NOT the same thing. People get stuff wrong all the time. Its the human condition in a world of vast to endless complexity.
This is the reality of ME today. And this is the reason that M.E. patients get dismissed as psychosomatic. It doesn't matter what you call the label - if you dump a hotch-potch of different illnesses into one group, what you get is a massive mess where everyone gets ignored.
Massively heterogeneous cohorts do indeed create problems when you analyze them as one group. No common factors can possibly be found. This is misdiagnosis, and its rampant. Much of the current research is now CCC ME/CFS, and now they are finding striking and common abnormalities. It is Oxford in particular, and operationalized Fukuda, that produce weak or ambiguous results.
You only have to read posts on here to see there are patients with common blood abnormalities. Don't ignore those abnormalities just because we have all been lumped in together, use them to select us!
Agreed.
PS (The 2 day exercise CPET test has problems in my opinion. You can get a 2nd day result from otherwise healthy people who spend a week in bed - see astronaut research. Therefore, unless a one day exercise stress test is abnormal I don't think it is necessarily useful. One day test, great, two day test, not so great.)
First, please show me studies that demonstrate a 2 day CPET problem with bedbound or astronaut patients. I have not seen one. They have clear ONE day problems. I am not aware they have two day testing drops in capacity.
Second, IT DOES NOT MATTER. One of the reasons that the 2 day CPET is not currently being called diagnostic is that it needs further research, in particular to nail down the specificity and sensitivity. Many patients who have this test and show a clear drop in capacity are not, in any case, bedbound. So how does this get explained?. Further, the test clearly shows a marked and dramatic crash in energy, and ongoing research is showing it cannot be reconditioned. This failure to recondition does not apply to bedbound patients nor astronauts.
Let me assert again, the 2 day CPET clearly shows, in over 95% of strictly defined ME/CFS patients, a massive and possibly unique crash in energy. It shows a clear and unambiguous failure in energy production, which is physically measurable. On issues of whether someone is really sick, or faking, or has a psychological illness instead, this clearly shows an organic basis. Insurance companies pay out on claims in which a patient has had this test, at least anecdotally (given that confidentiality clauses nearly always apply we are not going to hear more than that). That's a real world consequence.
Moderator Note -- for more posts related to CPET see
here.