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

Discussion in 'General ME/CFS Discussion' started by kermit frogsquire, Jun 21, 2014.

  1. chipmunk1

    chipmunk1 Senior Member

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    Yes many people do have mild fatigue: Doesn't mean it's a false believe even when it's not ME.

    It's not a delusion but lack of understanding of the illness. How do you deduct from this they are mentally ill?

    Could be menopause, mild hypothyroidism, low testosterone, lack of sleep, too much work, stress etc...
     
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  2. chipmunk1

    chipmunk1 Senior Member

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    I never said this. There are many cases where people do get locked up while having perfectly clear and coherent thought just because of some crazy pet theory of a psychiatrist. Objectively most people with somatisation disorders do not meet the criteria for insanity.

    Do you lock up chain smokers because they are endangering their health?

    What i meant is that it should be illegal to lock people up in absence of obvious serious mental illness.

    In the Pelletier or Hansen case you see people getting locked up just because they have a diagnosis the psychiatrist doesn't understand or accept. The victims could do little to fight back and had to accept their fate. So much power can not be left unchecked. Sooner or later this will lead to abuse.
     
    Last edited: Jun 26, 2014
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  3. Firestormm

    Firestormm Guest

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    Can we refrain from inferring that all who are sectioned are 'insane' or that sectioning only occurs because of 'insanity'? Thanks.
     
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  4. alex3619

    alex3619 Senior Member

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    Sooner or later? The history of psychiatry is a history of the abuse of power. Diabetics used to be locked away, considered crazy. People used to have their teeth removed, colon removed, lobotomies and insulin or shock therapy - in the hundreds of thousands too, at least collectively, not one patient here or there. The label of whatever psych disorder is considered serious has been used to depersonalize people. Its not someone with schizophrenia, its the schizophrenic. Its not someone who has depression, its the depressive. That is what they get called in mental hospitals, and I do not mean once upon a time. To initiate and support an abusive environment, first depersonalize or demonize your target.

    So what do they call us? To justify abuse, first depersonalize or demonize someone. Its a time honored trick, particularly from despots and secret police ... or politicians.
     
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  5. Tired of being sick

    Tired of being sick Senior Member

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    Note to self

    Sick people would rather argue than participate in helpful, peaceful,discussions..

    Every negative thread here has x50 views and replies..

    But I do know why CFS/ME patients love to argue

    It makes them feel better

    The adrenal glands are about the only glands that work in our bodies

    But we overwork them way to far..
     
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  6. Nielk

    Nielk

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    What is insanity?
     
  7. alex3619

    alex3619 Senior Member

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    If my adrenaline gets going I am in deep deep trouble. It causes problems. In fact if my adrenaline goes up I go away, do something else, then come back.

    I cannot speak for anyone else, but I argue if I think something is wrong, or something can be learned (just as important) but above all because these issues matter. People's lives are on the line.

    There is also the issue that we do not have enough arguing for us. If we do nothing for ourselves, how can we expect others to do it for us?
     
  8. Cheesus

    Cheesus Senior Member

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    I see you guys are pouring a lot of energy into this. There is nothing wrong with debate, but don't do it at the expense of your health :) it isn't worth it.
     
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  9. GracieJ

    GracieJ Senior Member

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    This whole thread is like going down the rabbit hole. Full of twists and turns and contradictions.

    Out of all the arguments, one piece clearly stands out for me, and that is the promise of good research using a well-defined patient group. The focus is narrowing. It is happening. I just hope the political race driven by those who believe it is okay to demonize and abandon the sick is won in time by common sense. ME/CFS is slowly but surely now being defined. There is hope for recognition and acceptance.
     
  10. Dster

    Dster

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    The lightning process isn't defunct, it's still alive and kicking - having cured me (in January 2014) and my colleague (in July 2013) of whatever it was we were suffering from - our respective (UK NHS) doctors both diagnosed our illness as CFS/ME.
     
  11. Isabelle

    Isabelle

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    It was a joke, Kermit. Based on comments you made about them getting together, and having a chat. And the joke was aimed more at SW than you. Lets just say - I'm not a fan - and I think the best contribution he could make to the discussion about ME/CFS, would be to retire.
     
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  12. Scarecrow

    Scarecrow Senior Member

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    There's a statement you don't often see. If that were true, surely it would be incumbent upon him to take a stance on more rigorous biomedical testing. I don't recall him doing so but perhaps you can show otherwise.

    Personally, I wouldn't trust Wessely to be able to tell his arse from his elbow (even though he is a doctor) far less a patient with a 'serious physical disease' from one with psychiatric illness (even though he is a psychiatrist).

    He used to have an article on his own website (http://www.simonwessely.com/) about Camelford. I'm fairly certain it was this one:
    If not, it had very similar themes. It has either disappeared from the site or is cowering in a dark damp corner.

    The Camelford incident of 1988 has been discussed on this forum before but, for those not familiar with it, 20 tonnes of aluminium sulphate was dumped in the wrong tank at a water treatment plant with the consequence that it contaminated the public water supply. It took 16 days for the water authority to inform the public that this had happened. However, during the initial aftermath they had been advising their customers to disguise the foul taste of the water by mixing it with orange juice.

    Immediately after and in the months following the incident people who had drunk the contaminated water complained of symptoms including nausea, vomiting, diarrhoea and mouth ulcers

    Eleven years later, in a study published in the BMJ (http://www.bmj.com/content/319/7213/807?goto=reply), the authors reached the following conclusion:
    Here are some of the known effects of aluminium sulphate poisoning:
    So, here we have people complaining of symptoms which are the same as the known effects of aluminium sulphate poisoning. What would a sensible person conclude? Here's what David and Wessely concluded in the Legend of Camelford:
    As contributing factors to the reporting of symptoms, they cited
    • The normal levels of somatic symptoms in any community [people have fatigue, headache and poor concentration all the time anyway]
    • Anxiety related symptoms following the incident [they were anxious so they got the trots and felt nauseous]
    • Litigation [they saw an opportunity to make a fast buck]
    • Somatization disorders [they already had false illness beliefs]
    Sound familiar?

    Sometime in the last couple of years the article has been removed from the site or moved to an inconspicuous area, the government has issued an unreserved apology about Camelford and Wessely has been knighted.

    There's still a prominent part of his website dedicated to CFS. I look forward to its disappearance, hopefully sooner rather than later.
     
    Last edited: Jun 26, 2014
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  13. IreneF

    IreneF Senior Member

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    "Insanity" is a legal concept, as "not guilty be reason of insanity". In Anglo-American law it derives from the M'Naghten rules--when as result of his mental disease or defect, the defendant (i) did not know that his act would be wrong; or (ii) did not understand the nature and quality of his actions.

    The term is used differently in everyday discourse. As in, doing the same thing over and over and expecting a different outcome.

    Mental illness is something else again.
     
    Last edited: Jun 26, 2014
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  14. kermit frogsquire

    kermit frogsquire *****

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    @Scarecrow

    Exactly - that is what Professor Edwards should be taking up with Wessely. It is Wessely's Oxford criteria that have resulted in so many people stuck in this label - people who Wessely admits do not fit - but at the same time Wessely says nothing publicly nor does anything to correct a known issue with his criteria. If he knows people are being misdiagnosed, surely it is incumbent on him to do something about it.

    Professor Edwards needs to take a small case series of severe ME/CFS cases with him, people who Wessely would not diagnose, yet people who have been diagnosed with ME, and put these questions to him to try and find a solution. The people that Wessely won't diagnose with ME are the very people that have what is considered "classic" ME by people on this group - the very severe neurological illness, MRI abnormalities, or people with lots of abnormal blood tests.

    Rather than argue over what ME/CFS actually is, let's just get help for the patients that don't come under "his" criteria.

    As I have posted before, Wessely has reported that 2.6% of the population have ME, furthermore he states that those people have psychiatric or somatic illness (even independent review found the majority of these patients to be suffering from psychiatric illness). Yet on stricter criteria only 0.002% to 0.0073% have ME, or more recently that was expanded to 0.24% - regardless the figure of 2.6% is a massive error.

    http://www.iacfsme.org/IssueswithCDCEmpiricalCaseDefinitionandPrev/tabid/105/Default.aspx

    The authors of the Canadian Criteria argue it is a problem of criteria. However, my belief is that they fail to understand the problem, the criteria become worthless once they are published because of the social-cultural nature of the phenomenon - see below.

    Now we can argue till the cows come home about what those 2.6% actually have, but what we all need to understand is that they don't have the physical disease originally described as ME prior to the 1980's.

    Recently Crawley et al expanded the definition of Wessely's version of ME even further to 4.7% of children - when we get to those kind of figures the same arguments as that with ADHD come into play. The incidence of ADHD has reached 20% in the USA. Many pediatricians are arguing - 20% of children do not have any disease, let alone a serious mental/neurological disorder. Similarly 4.7% of children are simply not ill with any organic disorder, mental or physical - the only thing that leaves us with is that normal behaviour and false beliefs regarding fatigue are being medicised. There are now many experts in pediatrics arguing that patients are being medicised by a complex social-political-cultural-economic interplay invloving the mass media, charities, and overdiagnosis by a section of the medical profession. It is clear to me, the same thing is happening/has happened to ME/CFS.

    http://boards.medscape.com/forums/?128@@.2a5c1c0f!comment=1
     
    Last edited: Jun 27, 2014
  15. redviper

    redviper

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    Or you know, the ME/CFS community is one of the most marginalized, exploited, and misrepresented patient groups currently in existence, and thus people here are advocating strongly for their rights.

    Lots of chronically ill people use the internet to help research their condition, it's no different with ME/CFS. The advocates here on Phoenix Rising (and elsewhere online) that are challenging provocateurs like Wessely and Kermit are doing the community a great service.
     
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  16. kermit frogsquire

    kermit frogsquire *****

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    Why is the ME/CFS community marginalised? Is it because so many people have now been diagnosed with the illness who just don't have it (according to the Leonard Jason et al) that the illness itself for the most part has become something more marginal?

    If upto 90% of people claiming to have this illness (Jason's data), don't have the illness, don't you think that is what is marginalising the people who do have it?

    Is it the fault of doctors that misdiagnosed? Well, perhaps. But I think it is a more complex issue. Sometimes those misdiagnosed become "advocates" too, and then they start advocating for a compeletly different illness. This was seen with Action for ME where they started advocating for "fatigue" and not ME, they started promoting the Lightning Process. When those misdiagnosed outnumber those properly diagnosed, the advocacy can becomes very twisted indeed - and that marginalises people more than anything.

    We have seen advocates for B12 injections, advocates for LP, advocates for mercury filling removal ... all in the name of ME/CFS. Are any of those treatments valid? Therefore when I question the advocates for normal 1 day CPET testing, you will understand my frustration at how that marginalises the people who have very severe single day exercise test results.
     
  17. Kina

    Kina Moderation Team Lead

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    Why is the ME community marginalized? It might have something to do, in part, with people claiming that a large proportion of people diagnosed with ME actually have nothing physically wrong with them and therefore are deluded, psychotic or suffer from some form of mental illness.
     
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  18. chipmunk1

    chipmunk1 Senior Member

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    Improvements with B12 are so common in the CFS community that it is unlikely to be a placebo. People take lots of other vitamins without getting these effects. Why does it work? We don't know. But that doesn't mean it's invalid.

    Your idea of "invalid" means you don't understand it.

    I think that also answers your question why the CFS community is so marginalised. Because many doctors have the same attitude like you: They don't understand it therefore it cannot be real.
     
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  19. Kina

    Kina Moderation Team Lead

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    Unfortunately right now treatment is aimed at symptom reduction -- B12 for neuropathy, medications/supplements for sleep, medications/supplements for pain, antivirals to decrease viral load etc etc. These treatments are very valid and shouldn't be lumped in with psychobabbly CBT and LP which are invalid.
     
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  20. SOC

    SOC Senior Member

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    No I don't understand at all. I don't see any way that it marginalizes people who have very severe single day exercise test results. Please explain.
     
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