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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. Dster


    LP isn't invalid for everyone - 100% of the people I personally know who have been through LP have been helped immeasurably - only two people, but they both recovered = 100% ;-)
    Cheesus likes this.
  2. Tired of being sick

    Tired of being sick Senior Member

    Western PA USA
    It is all about the money!

    You want the TRUTH!

    Here it is!

    This documentary is about Lymes disease
    and they are dying because of the REAL rulers of healthcare!
    Health Insurance Corporations

    Bottom line

    Any Dr who treats these very rare autoimmune diseases properly

    will lose their licenses period!


    Is not even mentioned in this horror story

    So now the wool is no longer over your EYES!
    Antares in NYC likes this.
  3. Isabelle


    Apologies to Jessie J, and the writers (Simmons, Bobby Ray Jr. / Cornish, Jessica / Gottwald, Lukasz / Kelly, Claude) of the lyrics to ’Price Tag,’ for corrupting them so utterly:

    It’s all about the money, money, money

    It’s all about the money, money, money

    It’s not about the science

    It’s not about the problem

    It’s all about (uh) cha-ching, cha-ching, cha-ching

    It’s all about (yeah) the spin, the spin, the spin

    It’s not about the science

    It’s not about the problem

    It’s not about – me

    It’s not about – you

    It’s not about the science

    It’s not about the problem
    alex3619 and Tired of being sick like this.
  4. Tired of being sick

    Tired of being sick Senior Member

    Western PA USA
    So if you guys want to argue with kermit frogsquire,

    Be my guest.......

    You want to fight the system?

    Do it at your next Dr. visit

    Stand up to him/her

    Don't be afraid of their store bought credentials

    Maybe they can sit their pseudo ego aside and LISTEN to a patient for once in their life..

    Dr's are a dime a dozen to me

    Do not respect them until they RESPECT YOU
    Last edited by a moderator: Jun 27, 2014
  5. Scarecrow

    Scarecrow Senior Member

    @kermit frogsquire

    Would you please stop casting poor Jonathan Edwards in the role of the school hero stepping in to sort out the bullies? This really isn't his problem and it certainly isn't his responsibility to sort out.

    I'm curious about why you are so certain that Wessely knows that there is a problem with the Oxford criteria. If Wessely "says nothing publicly" - and I've no reason to dispute that - who or what do you know that makes you state that he knows there is a problem?
    If we agree about this - and you used an almost identical statement as I did - then the moral and professional responsibility to do something about it is with Wessely since you assert he is aware that there is a problem with the Oxford criteria. Except that he doesn't 'do' CFS anymore (pun intended) although we all know he'll never ever stop doing CFS in his own head. If moral and professional responsibility don't weigh with him then I doubt he is going to be persuadable. I'm not, however, convinced that he does acknowledge, privately or otherwise, that Oxford is crock.

    I think that at this stage of ME research there is no point in reviewing criteria. What would be the point? Or are you suggesting that there should be some sort of gentlemen's agreement? (Wessely and Edwards bargaining over our souls?)

    There's a ton of good quality biomedical research going on just now. A ton in ME terms, anyway. It's all relative. Hopefully it will start to elucidate biological processes and will help to tease apart the subsets. Then we can think about reviewing criteria.
    Hmmm, the meme thing again. How could you possibly justify not disclosing the criteria for a disease? How is that ethical? What, in your opinion, makes ME so intrinsically different from ANY other disease?

    I'm afraid I can't discuss ADHD with you as I really don't know anything about it although I presume that you are suggesting that there is a meme phenomenon there, too. Perhaps ADHD is just experiencing a similar heterogeneity as ME/CFS. Lots of similar symptoms but different conditions. It wouldn't surprise me. For example, the modern diet just gets worse and worse. I feel like a different person depending on what I eat. I don't doubt that poor diet would cause behavioural problems in some children. Would this give them ADHD? Nope. Would it cause similar behaviours? I don't see why not.

    I've realised that I haven't answered the question posed in the thread title. The short answer is 'no'. I don't think that psychosomatic illness exists. Therefore, you can't have a false illness belief. You can only be mistaken in what illness you actually do have.

    alex3619 puts it best:
    I did used to think psychosomatic illness was 'real'. As a15 year old with what was then known as spastic colon and intending to be a vet, I was fascinated by the concept and in no way threatened by it. But then the gradual decline into ME happened, and then the severe sudden crash following my attempts to 'exercise my way out of it' and the final straw, a respiratory infection. An all too common story. I very quickly stopped believing I had a psychosomatic illness.

    I don't believe in denying people their dignity and that is exactly what the BPS model of CFS does.

    When the research allows ME/CFS subsets to be identified and more thorough testing occurs, that should also have the added benefit of reversing the misdiagnoses of those with lupus, mastocytosis, coeliac disease etc. Layer after layer will be removed and all we'll be left with - possibly - is a tiny percentage of malingerers and not a psychomatic disorder in sight except in the minds of the BPS school.
    taniaaust1, NK17, rosie26 and 8 others like this.
  6. kermit frogsquire

    kermit frogsquire *****

    Professor Edwards has declared an interest in researching ME.

    Someone above mentioned - if people could make-believe illness surely millions of people would be doing it.

    As I said, studies have shown that 75% of insomniacs have no objective evidence of insomnia.
    And a recent study of food intolerance found a staggering 90% to have no problems at all.

    Based on research a staggering 12million people in the UK claim to have symptoms following ingestion of certain foods. Yet, if you do double-blind food tolerance testing, nearly all those people can eat those foods without symptoms. A small number really do have food intolerances though, they are the ones that need a cure.

    As the researchers put it -"The problem of self-misdiagnosis is not helped by celebrity food fads, such as diets followed by Carol Vorderman and Victoria Beckham". These are to some extent cultural issues, self-imposed behaviours.

    Does this cultural effect also cause fatigue? Can people adopt ME-like symptoms? How many people who think they have ME actually have ME?

    These are all valid questions and the very questions that the original BMJ artilce raised - has ME largely become a meme? Rather than get angry at that, anyone who is really ill should want this issue debated, and sorted out.

    So, just as food intolerance is real, and there is a real illness called ME, we need our researchers to realise the problem so that research for the people that really are ill can make a difference. Just as we cannot do research on everyone who "says" they have food intolerances to find a cure, we can't do research on everyone who "says" they have ME. Otherwise you get ridiculous and dangerous results.

    Therefore, since Jonathan Edwards is involved in ME research, he needs (emphasis very strong) to talk with doctors such as Wessely so that his research does not become a horrible mistake.
    Last edited by a moderator: Jun 28, 2014
  7. Cheshire

    Cheshire Senior Member

    Scarecrow said:
    @kermit frogsquire

    So what? Does that imply he offered his life to you and will follow every advice order you give because you have ME?

    Apparently, yes:

    Last edited: Jun 28, 2014
    SOC, Scarecrow and Valentijn like this.
  8. chipmunk1

    chipmunk1 Senior Member

    One would to be really naive to think the meme theory has any value. Why should anyone encourage such a nonsense? It was obvious that it was extremely poorly researched. Useful citations were also lacking..
    Scarecrow, Iquitos and Valentijn like this.
  9. Indigophoton


    The authors of the BMJ Rapid Response are not suggesting that ME has become a meme. They are suggesting that ME is only a meme.

    It is not that they believe that there is a real organic illness ME which has become a bandwagon/fad/fashionable thing to have, and, as such, that lots of people are kidding themselves that they have it.

    It is that they believe (if the letter does in fact represent their true opinion) that everyone with ME is deluding themselves, because there is no such thing as real organic ME.
    SOC, Antares in NYC, golden and 6 others like this.
  10. RustyJ

    RustyJ Contaminated Cell Line 'RustyJ'

    Noosaville, Aust
    You do seem to cherry pick, and so does the Flour Advisory Bureau who fronted up with the dough (sorry) for the report.

    Quite possibly the only meaningful piece of information to be gleaned from the report is that the wheat flour industry is nervous about losing trade.

    At no point in any of the examples cited in the article is there the inference that the study participants imagined their symptoms or that they are being deliberately misleading. It is assumed that the wrong agent has been blamed for a reaction.

    The whole issue of food intolerance is poorly understood, and quite possibly being deliberately confused by vested interests.

    In my case with suspected gluten sensitivity, after a period off gluten I can tolerate wheat products with no apparent problems. However, after several weeks I get gall bladder issues with severe pain and vomiting. I have tested this time and time again.

    Yet in a random gluten consumption test, particularly after a period of abstinance, I would not show any problems.
  11. biophile

    biophile Places I'd rather be.

    In general, misattributing symptoms is different than imagining symptoms. Phenomena such as non-Celiac gluten sensitivity, perhaps some people are misinterpreting symptoms and it might be a bit of a fad, but I think it is also possible that we do not know everything about the spectrum of response to gluten or other substances and we still have something to learn.

    As for sleep ...

    I'm not a major insomniac per se but I don't think it's that simple. I don't recall the details right now but I remember reading a few times that traditional markers of sleep are not always sensitive enough to detect problems. Similarly, some sleep studies of CFS patients did not find abnormalities, but others using different tests did and pointed out why.

    [Edit: Mark has some details in a later post.]

    [Edit: Same goes for subjective vs objective cognitive impairments in CFS and other conditions.]

    I have difficulty believing that millions of insomniacs are pulling their hair out from torturous hours laying awake at night for no reason. I think it is more likely that rigid assumptions about what degree of consciousness can be experienced during the various stages of sleep are inaccurate. Perhaps they are semi-conscious (more than normal) in the lighter stages of sleep, which is not impossible. Perhaps something else is going on which is not detected by traditional sleep markers.

    I had a sleep test done once, and early in the night I drifted off for a few moments but was still semi-conscious and woke up again, which showed up objectively. Throughout the night the periods I recalled being semi-conscious generally coincided with stage 1 or stage 2 sleep. The sleep test confirmed that I had fragmented sleep and decreased sleep efficiency. I dreamt earlier in the night without REM sleep, but the dream period which correlated with REM sleep was more intense. The sleep specialist told me that some of this was "impossible" (which I later read was indeed possible!).
    Last edited: Jun 28, 2014
  12. chipmunk1

    chipmunk1 Senior Member

    Please link to the studies..

    Another explanation:

    75% of insomniacs don't fit into certain narrow criteria for insomnia while still having sleep problems.

    Another explanation:

    90% don't have the classical food allergy lab tests results but other kinds of poorly understood intolerance problems.

    Sometimes the food isn't the problem, additives/chemicals can cause symptoms as well.
    Snowdrop, SOC, redrachel76 and 2 others like this.
  13. Scarecrow

    Scarecrow Senior Member

    In turn, I can't stress this enough: he needs do nothing of the kind. He's advising on certain aspects of the Invest in ME rituximab trial because of his experience with rituximab as a treatment for patients with rheumatoid arthritis. You might find it useful to read his statement on the trial here:

    http://www.ukrituximabtrial.org/Rituximab news-July13 01.htm

    I doubt that Professor Edwards would ever portray himself as an expert in ME. I know very little about medical trials but I can't see him being responsible for the patient cohort. Your advice to him is misdirected.

    I'm so grateful for the interest that he has shown in ME. I appreciate the time that he spends on this forum and the respectful way he responds to people.

    Please just let him get on with it.
    SOC, Iquitos, rosie26 and 2 others like this.
  14. Mark

    Mark Acting CEO

    Sofa, UK
    I read a very interesting article in last month's New Scientist about the recent discovery that those previously assigned labels such as 'psuedoinsomniac' actually have a previously unknown type of sleep disorder, characterised by the intrusion of 'wakeful' alpha waves throughout the sleep cycle, suggesting that they are 'unable to switch off' their wakefulness, even when asleep. Although everything else on the EEG looks normal at first glance, the deeper waves have visible alpha waves superimposed. Unfortunately the online version of the article is behind a paywall, but there's a link and a reasonable summary here:

    So 'pseudoinsomnia' - and all the other belittling labels assigned over the years to people who have a sleep disorder that isn't yet understood - is actually a good example of the 'not even a hypothesis' that is psychosomatic theory being superceded by a real scientific theory that actually explains the phenomenon with objective data.

    Similarly, from the vanstraten 'factsheet' which you link to, when Dr Mackenzie notes that

    it's simply a failure of both logic and imagination to make the leap from that observation straight to the conclusion that most of these people must be imagining their food intolerance and actually 'have no problems at all'. It's obvious to any reasonable person that it's at least equally likely that the reason for this discrepancy is that our scientific knowledge of food intolerance is incomplete.

    In fact, we know it to be true that our scientific knowledge of this area is indeed incomplete and there is much more still to be discovered. On the other hand, the hypothesis that all these people who are claiming to have a problem actually 'have no problems at all' has no evidence to support it, since absence of evidence is not evidence of absence - and anecodotal claims, like the claim that you can somehow tell that people don't really have anything wrong with them, don't add up to anything scientific either.
  15. alex3619

    alex3619 Senior Member

    Logan, Queensland, Australia
    I call doctors on babble these days, even specialists. It is not easy to do for the average person though, not until they know enough of the science to be able to cite some. If a patient does this without having some supporting argument, they get one of two different labels - a problem patient or psychotic. Neither are helpful. The best thing for most to do with bad doctors is walk or wheel away.

    Sooner or later I am going to run into a major argument with doctors over nonsense. The average time for me to find something they say that is clearly wrong is about two minutes unless I am with a doctor who has put in the time and effort (it takes years) to do some background reading.

    I can work with a doctor who treats me with honesty, even if they cannot help me in many ways. Doctors who lie, and guess, and then lie about guessing ... hopeless cases. Let us call them heartsink doctors.

    (Heartsink is a term doctors use to describe patients they have no idea on how to help, so that figuratively their heart sinks when they see them.)
  16. alex3619

    alex3619 Senior Member

    Logan, Queensland, Australia
    We don't know what it is, ergo it ...

    ... doesn't exist.
    ... is psychiatric.
    ... is psychosomatic.
    ... is a meme.
    ... is malingering.
    ... is delusional.
    ... is some other disease.

    This kind of reasoning is always invalid. If you don't know what it is, then you don't know what it is. Sorry to hit people with a tautology, but that is the issue.

    Let me give an off-topic example. If I were to say "I believe in UFOs" then what would most people think? Believing in alien visitation is vastly different from believing there are observed phenomena that people call UFOs and have yet to figure out.
    Snowdrop, SOC, Antares in NYC and 5 others like this.
  17. Goodness to M.E.

    Goodness to M.E.

    As a side note, after reading this book I no longer place much value to anything forthcoming from the psychiatric industry.
    Anatomy of an Epidemic: Magic Bullets, Psychiatric Drugs, and the Astonishing Rise of Mental Illness in America is a book by Robert Whitaker published in 2010 by Crown.[1][2][3] Whitaker asks why the number of Americans who receive government disability for mental illness approximately doubled since 1987.[4]

    In the book, Whitaker tries to answer that question and examines the long-term outcomes for the mentally ill in the U.S. In April 2011, Investigative Reporters and Editors (IRE) announced that the book had won its award as the best investigative journalism book of 2010 stating, "this book provides an in-depth exploration of medical studies and science and intersperses compelling anecdotal examples. In the end, Whitaker punches holes in the conventional wisdom of treatment of mental illness with drugs."[5]
    Cheesus, Roy S, golden and 1 other person like this.
  18. chipmunk1

    chipmunk1 Senior Member

    Nowadays it has become pretty much normal that the doctors prescribes an antidepressant when there are unspecific symptoms and the lab results come back normal. As if a SSRI were the magical cure for everything. Considering how complex the human body is how can they even believe that some serotonin would solve the problem?

    It seems that the treatment algorithm is:

    1. Make some basic tests.

    2 If the results indicate a disease that i know of diagnose and treat.

    3. If i cannot find anything the patient is hallucinating and i prescribe prozac.

    I think the consequences of this careless attitude are devastating. It's not even medicine or science. It's some kind of really weird philosophy or belief system.

    Now with an estimated 15-40% of patients having no physical cause for their symptoms means that they are not able to make a diagnosis in perhaps as much as 30% of cases but they are not willing to admit that instead they give patients derogatory labels which often imply the patient "needs to learn how to", "doesn't know how to deal with life", "wants attention", "cannot reason or think straight", as if adults were small helpless and needy children.They don't admit it but basically it means the patient is a jerk.

    This is nothing more than patient abuse hiding in plain sight.
  19. Firestormm

    Firestormm Guest

    Cornwall England
    Ah. But a certain Professor would apparently argue:


    Last edited: Jun 29, 2014
    taniaaust1 and Valentijn like this.
  20. Antares in NYC

    Antares in NYC Senior Member

    Right on.
    I strongly recommend everyone to watch that film, "Under Our Skin" whether you have Lyme or not, but be aware it will make you angry and raise your blood pressure! Although the film starts by describing the horrors of Chronic Lyme, eventually the film delves deeper into its true centerpiece topic: the absolute CORRUPTION of the medical system, and the shamelessly greedy behavior of the medical authorities when dealing with difficult new diseases like Lyme (and by extension CFS and others), at the expense of the broken lives of hundreds of thousands of patients.

    The movie exposes how 9 out of 12 members of the IDSA Lyme disease board (which determined the fate and guidelines for diagnosis and treatment of Lyme) had undisclosed conflicts of interest, serving the interests of the health insurance companies, and even worse, developing their own treatments and patents for Chronic Lyme on the side, while denying treatment options to patients, and prosecuting doctors for treating patients with the condition and stripping them off their medical licenses!

    Some of these "medical authorities" were as churlish as to deny the existence of Chronic Lyme, while it was revealed they were involved in the development of drugs and vaccines to treat... Chronic Lyme (with patents and all to prove it!). Basically they were protecting their own investmenst at the expense of the rest of us. At the end of the film I truly got the impression many of the these so-called doctors see us with the same compassion they would an ant or a fruit-fly. They take us for chumps, my friends.

    So yes: it's ALL ABOUT THE MONEY. Make no mistake about it.

    PS: Also, on a different note, it is widely known that the pharma industry is no longer interested in developing drugs that "cure" diseases. No money in it. A drug that cures a disease is sold once per patient. On the other hand, most R+D now goes towards development of drugs that "manage" diseases without really curing them. A chronic patient equals a customer for life. Maximizing profits is the name of the game, not improving the health and welfare of humanity. There's no money in good will, right? Where most normal people should see Lyme and CFS as horrific illnesses that need to be cured, some heartless people in the medical profession and pharma industry see them as potential pots of gold (Sorry for the negative tones, feeling a bit pessimistic today)
    Last edited: Jul 1, 2014

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