Do lots of ME/CFS patients falsely believe they have ME/CFS or are they simply misdiagnosed?

[Iquitos]

Have you ever spoken with Simon Wessely? I'm no fan of the man, but having been around this illness for over 20 years, I have found that not everything that is written or said is fair.

Plus, there is another angle here - Wessely has stated that there are sick people misdiagnosed with "his version of ME" and they are really sick, but it is just not ME. Well, what is Wessely doing to correct that? If Professor Edwards sat down with him and discussed the above issue - that of sick patients - rather than the issue of what is or isn't ME, we might get somewhere.

What exactly have we got to lose? Edwards losing his temper and punching Wessley bonus!

I have corresponded with him by email and found him to be just as nutty as we already observed him to be. Fairness has nothing to do with Wessely and his false beliefs, IF he really believes what he says. He has said the ME researchers had rather go over Niagara Falls in a barrel than continue their research, and he has said he doesn't do ME/CFS research any more, but he keeps going back at his attempt to discredit not only patients but those researchers who are doing real science.

Prof. Edwards is under no obligation whatsoever to waste any of his time and/or energy talking with a quack like Wessely. IF Wessely only read the biomedical research and understood it, he would have, LONG AGO, come to the conclusion that ME/CFS is a biomedical illness. That the neurological aspects of it are due to brain and nervous system damage.

Way back in 1982 when I first got ME, there were already brain scans that showed punctate lesions resembling those in MS, AIDS and Alzheimers in the brains of those with ME/CFS. As a matter of fact, we are already "getting somewhere" in the biomedical research, despite those who would divert us from it by renewing stupid arguments like this one.

 

[A.B.]

@kermit frogsquire you're starting to contradict yourself. It makes no sense to suggest dividing patients into "real" and "false" ME while stating that there is no objective test to distinguish between "real" and "false" ME.

By the way, I agree completely that illnesses lacking objective tests lead to all sorts of problems (a lot more problems than "false illness beliefs" actually).

Also, defending Wessely shortly after complaining about abundance of "false" ME diagnoses is also contradictory. Who has consistently worked to blur the line between fatigue and ME, and who has denied that ME is actually a neurological condition? There's hardly a person who has worked more than Wessely for creating circumstances that lead to misdiagnoses of ME.

On one hand you side with psychiatry, on the other hand you criticize the very same things it stands for, then criticize patients for having subjective illness beliefs, while subjectively declaring other people's illness as real or fake. It makes no sense.

 

[chipmunk1]

.Kermit how do you know your ME isn't a delusion?

 

[alex3619]

It's time for @alex3619 to rise from obscurity, write a scathing treatise on this subject, become world-famous for putting this shame to rest, and fund ME/CFS research with his resultant millions.

I wish. Though actually that is something I have mused about, the funding research part. Sadly its catch-22. To do what I want in any reasonable and timely fashion I have to get better. To get better someone has to succeed. That is the shining hope. Someone else can come up with a cure. We have so many good researchers these days. Then we can become capable, and psychobabble will know what we think then. We can then look to supporting other disease groups that have not escaped yet.

 

[Isabelle]

Admittedly I’m not feeling too good at the moment, but is Kermit suggesting that Professor Edwards and Wessely, hug, sit down with a nice cup of tea, miraculously discover the key to ME/CFS over scones, and maybe even work out a plan for world peace? One is a distinguished scientist, and the other probably should have gone into advertising.

 

[Iquitos]

I think of Wessely more as a paid assassin. He was recorded saying that even if a virus or retrovirus were found in ME patients, he wouldn't treat for that. Something about that being like recording the license plate of the car that hit you after it's gone, AND that he's in the business of "rehabilitation", which means GET and CBT, and if you don't get back to work, you're a malingerer.

His signature is on a letter agreeing that Sophie Mizra was "elegible" for forced incarceration in a mental hospital, which led to her death.

 

[alex3619]

I think sometimes we overlook the issue, that SW and others can use against advocacy, that sometimes things are said that are unfair about SW. Yet on balance is this the case? I think that most things said, at least those I have read, have checked out when I look further.

What is the case however is that things have sometimes been misinterpreted. Not all the interpretations are the same, and not all can be true. Yet the obfuscation of what is happening, the contradictions within what SW has said, make figuring stuff out hard. Its so baffling is it any wonder that bad things are attributed to him? It simply does not make sense from either a patient or outsider perspective.

With SW saying one thing to one group, and the opposite to another, in at least one instance I have read, its no wonder he is not trusted by either ME patients or ME advocates. Given the positions taken without substantiating evidence, there is further reason for mistrust. Given inflammatory remarks made by SW, trust is even less likely. In this climate I cannot blame any advocate or patient for most remarks, though perhaps I wont agree with all of them.

Most of all, the entire theoretical basis of what he is claiming and doing is philosophical quicksand. There is no substance to it, just deeper and deeper layers of quicksand.

Yet psychogenic medicine is accepted within psychiatry and even medicine. Without substantive evidence. NO psychogenic theory can claim to be evidence based in my view. So far the pragmatic therapies supposedly based on psychogenic therapies have not only failed, but in some cases been shown to be harmful. Yet because someone published a meta-analysis, suddenly its evidence based? Many have said this before, including me, but with a computing background its very relevant: GIGO - garbage in, garbage out. If the studies going into a meta-analysis are systematically biased, the meta-analysis will be too. In any case meta-analyses are not scientific, though perhaps they are academic and managerial.

 

[Hip]

Interesting argument - but ...

We do see lots of these duality "real+belief" based diseases mixed up ...

... as Professor Edwards explained above, people can also think they have RA, Lupus and lots of other disease too. The only reason we don't see hundreds of these is that objective disease findings remove the belief ....

... So logically, that is why you can't have Parkinson's, Motor Neuron Disease, Epilepsy etc - they have tests, and or very specific symptoms that are not vague like "fatigue".

So you are asserting that diseases which are objectively verifiable by medical tests (blood tests, scans, etc) could not give rise to a belief-based psychosomatic counterpart of the disease, because once the objective medical tests show the patient doesn't have the disease, their disease beliefs would disappear.

But if this were the case, why would there not be an abundance of belief-based psychosomatic diseases of all different varieties in countries or regions in which there is poor health care and little access to medical tests?

I have never heard any suggestion that regions with little or no medical facilities generate multitudes of psychosomatic diseases. And it would not be difficult for researchers to perform a study in such primitive regions of the world, and check to see if there is an preponderance of psychosomatic facsimiles of real diseases. The researchers could bring medical tests to objectively verify if a disease was real or not.

Moreover, go back a hundred years, and even in in Western countries, objective medical testing was not yet developed; at that time there were almost no means to objectively verify diseases, other than by their symptoms. Thus if belief-based psychosomatic facsimiles of diseases really exist, then a hundred years ago you would have had great abundance of people going around with these belief-based diseases. But there is nothing in medical history to suggest swathes of people were wandering about with psychosomatic facsimiles of diseases a hundred years ago or earlier.

Furthermore, as new objective medical tests were developed and became available during over the last hundred years, each new test would have cured overnight vast numbers of people with belief-based diseases. Yet medical history does not indicate any such mass cures on the arrival of each new objective test.

And even in the present, there is no way to objectively verify Parkinson's; there is no lab test for Parkinson's, so this disease is still diagnosed on its symptoms. Thus by your argument, Parkinson's would be precisely the sort of disease which should have a large contingent of people suffering from a belief-based psychosomatic illness facsimile. But I have never heard Wessely and Co suggest that Parkinson's is psychosomatic.



The whole concept of psychosomatic diseases seems to fail once you apply any tests of logical consistency.

If the psychologists and psychiatrists who put forward these psychosomatic concept were adept with logic, well versed in the scientific method, and capable of performing simple "thought experiments" like those presented above to test the validity of their ideas, they would have long ago realized that these psychosomatic concepts are deeply flawed, and that their theories don't hold water.

 

[Valentijn]

I think sometimes we overlook the issue, that SW and others can use against advocacy, that sometimes things are said that are unfair about SW. Yet on balance is this the case? I think that most things said, at least those I have read, have checked out when I look further.

When he had his "look at the nasty misquotes" page up, few of the misquotes or other mis-attributions were ones which patients had actually said, but rather his own exaggerated versions which he could truthfully deny. For example, it was known that he contributed his opinion (of non-illness) to the case where a paralyzed boy was eventually thrown into a swimming pool by therapists while incarcerated in a psychiatric facility. He changed this on his site to being accused of throwing the boy into the pool himself, which of course he could truthfully deny.

 

[chipmunk1]

If the psychologists and psychiatrists who put forward these psychosomatic concept were adept with logic, well versed in the scientific method, and capable of performing simple "thought experiments" like those presented above to test the validity of their ideas, they would have long ago realized that these psychosomatic concepts are deeply flawed, and that their theories don't hold water.

"Modern" psychosomatic medicine is at least 100 years old, and was introduced when they weren't evidence based. Psychoanalysis on which a lot of these concepts are based on wasn't even part of medicine and avoided being scrutinized even back then. How they made it into medicine and could survive so long is a mystery to me.

Somehow the theories became widely accepted facts, that happened before 1950. Psychoanalysis itself always rejected being studied scientifically and they could do so because they weren't part of medicine. Still they were always close enough to medicine to influence them and many doctors and a large part of pre 1970 psychiatrists
did probably have some kind of psychoanalytic training. Psychoanalysis was like a religion by doctors for doctors and it's followers spread the gospel within the medical field. Somehow these concepts and ideas became medical tradition and eventually medical dogma.

In the past years i heard of several patients being diagnosed with somatisation disorders. When they denied having psychological problems the doctor told them that he had learned that people with conversion disorders would always deny having them and denial would prove the diagnosis.

This is a freudian idea. Sigmund Freud would tell his patients that not accepting his wacky ideas was a defense mechanism and that showed that he had been right.

One can see that while psychoanalysis as a therapy is slowly dying many of the ideas are still very much alive in medicine even when they are not labeled as freudian.

 

[kermit frogsquire]

Admittedly I’m not feeling too good at the moment, but is Kermit suggesting that Professor Edwards and Wessely, hug, sit down with a nice cup of tea, miraculously discover the key to ME/CFS over scones, and maybe even work out a plan for world peace? One is a distinguished scientist, and the other probably should have gone into advertising.

Did I say that Isabelle? No. Please don't ridicule my suggestion as a way of dismissing what I said.

What I actually said was that Wessely is fully aware that there are patients labelled with CFS/ME who are organically ill with serious physical diseases - I suggested that rather than argue over what ME/CFS is or what ME/CFS isn't, or case definitions etc, it would be worth trying to use Wessely's acceptance of a whole mass of people who have been caught up in his Oxford definition of the illness but who are seriously ill to get help for patients with serious physical diseases in need of medical treatment.

Helping patients is the goal, not a war between who owns the label ME/CFS.

 

[chipmunk1]

... as Professor Edwards explained above, people can also think they have RA, Lupus and lots of other disease too. The only reason we don't see hundreds of these is that objective disease findings remove the belief ....

doctor telling ME patient, lab tests came back normal you're well should remove the belief equally well at least in theory. In practice this doesn't help at all.

 

[kermit frogsquire]

I think of Wessely more as a paid assassin. He was recorded saying that even if a virus or retrovirus were found in ME patients, he wouldn't treat for that. Something about that being like recording the license plate of the car that hit you after it's gone, AND that he's in the business of "rehabilitation", which means GET and CBT, and if you don't get back to work, you're a malingerer.

His signature is on a letter agreeing that Sophie Mizra was "elegible" for forced incarceration in a mental hospital, which led to her death.

I know lots of people want to make this a black and white issue but it isn't. What happened to Sophie Mizra was terrible, horrendous, but I know of more than one person (first hand) who had a diagnosis of ME who was sectioned correctly because of severe psychiatric illness (which wasn't ME). This again goes to the problem of there being no way to tell who has it and everyone being lumped in together.

@chipmunk1 you are right, sometimes lab test don't help. As I explained above, I knew someone who thought they had a disease which caused skin lesions, not a single blemish, but that didn't stop them from thinking they did.

But anyway, the difference is not just lab test (which are normal in upto 50% of patient with RA anyway) it is objective symptoms. With ME what we have is symptoms that have no objective signs, which is why false belief is more a problem than with RA. Swollen joints are harder to think you have. They are either swollen or they aren't. What we are dealing with in ME are symptoms that make us "feel" ill and worse still due to the veyr vague Oxford criteria that has been reduced to symptoms of "feeling tired". It is no wonder so many people think that have ME - that is what they are being told by magazines with tired celebs, newspapers and the TV ... and a lot of the time charities like AFME. The illness has been reduced to fatigue ... a symptoms nearly everyone has at some time or other.

 

[Valentijn]

doctor telling ME patient, lab tests came back normal you're well should remove the belief equally well at least in theory. In practice this doesn't help at all.

It reassured me that I probably wasn't going to die in the next 6 months. But it had no impact on symptoms, which steadily got worse on their own.

 

[Valentijn]

. . . I know of more than one person (first hand) who had a diagnosis of ME who was sectioned correctly because of severe psychiatric illness (which wasn't ME). This again goes to the problem of there being no way to tell who has it and everyone being lumped in together.

You aren't a qualified or objective authority on who has a psychiatric illness or not. And based on your posts here, I'd have trouble trusting your judgement or anything else that you say.

 

[chipmunk1]

know lots of people want to make this a black and white issue but it isn't. What happened to Sophie Mizra was terrible, horrendous, but I know of more than one person (first hand) who had a diagnosis of ME who was sectioned correctly because of severe psychiatric illness (which wasn't ME). This again goes to the problem of there being no way to tell who has it and everyone being lumped in together.

from what i recall Mirza didn't have any signs of psychosis or wasn't a danger to herself or others. the only problem she had was a ME like syndrome which was suspected to be psychiatric.

The system cleary failed here. People can still get locked up just because a psychiatrist says they're insane. No science or evidence is needed. Reforms are badly needed.

What's even worse is when they lock people up for having mostly physical symptoms while displaying perfectly coherent and clear thought. Believe it or not but that is still legal.

 

[kermit frogsquire]

You aren't a qualified or objective authority on who has a psychiatric illness or not. And based on your posts here, I'd have trouble trusting your judgement or anything else that you say.

They were section correctly because they made a recovery! Plus their parents and the patient agreed afterwards it was correct. But thank you for misrepresenting me Valentijn.

Your logic is also very disturbed in that you imply that a qualified person can correctly determine psychiatric illness - that would suggest all the ME patients who are sectioned incorrectly are making it up - after all a psychiatrist said they needed sectioning - a fully qualified expert.

All we can do is post what we have seen and know, no one is claiming to be an authority on who has ME except you. My position has always been that ME/CFS is a heterogeneous mess with multiple diagnoses mixed in, both psychical, psychological and false belief.

 

[kermit frogsquire]

from what i recall Mirza didn't have any signs of psychosis or wasn't a danger to herself or others. the only problem she had was a ME like syndrome which was suspected to be psychiatric.

The system cleary failed here. People can still get locked up just because a psychiatrist says they're insane. No science or evidence is needed. Reforms are badly needed.

What's even worse is when they lock people up for having mostly physical symptoms while displaying perfectly coherent and clear thought. Believe it or not but that is still legal.

What they claimed was that she was a danger to herself because of her belief she had ME, her weight loss etc. As I said, this was wrong, Sophia had really severe ME, but just imagine the psychiatrists had seen many patients who believed they had all sorts of conditions and were consequently endangering themselves - this is the reality, for every Sophia Mirza there are lots of people they section correctly. Doctors mess up. That doesn't mean that the whole of psychiatry is wrong about everything.

How can psychiatry be reformed? The point is that there isn't any objective proof, it is a judgement call. What you are calling for is to make it impossible for anyone to be sectioned even if they really are a danger to themselves or others. You can never prove that. Yes the system fails sometimes, but how many times does it fail in heart operations or brain tumors? It fails sometimes.

My point was not to use one or more incidences to attack something we don't like.

 

[Valentijn]

They were section correctly because they made a recovery! Plus their parents and the patient agreed afterwards it was correct. But thank you for misrepresenting me Valentijn.

"If you're cured, we'll let you out. We'll know that you aren't cured if you continue to believe you don't have a psychological disorder. Do you believe that you have a psychological disorder?"

What do you think they're going to say? And what do you think they're going to say a month later, when the implication is that they'll be re-sectioned if they have a "relapse" in denying a psychological illness?

 

[A.B.]

Your logic is also very disturbed in that you imply that a qualified person can correctly determine psychiatric illness

I'm starting to think that you're mentally ill. Most of your posts assert that it's possible to subjectively determine psychiatric illness. This thread started with you asserting that many cases of ME/CFS are simply psychiatric illness, while then asserting that no objective tests exist to diagnose ME/CFS. Your own posts strongly imply that you believe a "qualified person can correctly determine psychiatric illness". Then you turn around, and accuse a Valentijn of believing exactly this, which is particularly contradictory because she has repeatedly made it very clear that she doesn't believe this.