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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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    3% have a spontaneous remission and 86% get another diagnostic label because they didn't respond.

    Mental illness can't be cured with quackery.
     
    Last edited: Jun 25, 2014
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  2. A.B.

    A.B. Senior Member

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    90% of people can pull statistics out of their ass.
     
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  3. Valentijn

    Valentijn Activity Level: 3

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    I believe this has been mentioned before, but Esther Crawley is full of crap. She gets ME patients, and if they don't respond to her bullshit, she declares them cured and labels them with pervasive refusal syndrome instead. Parents of the victims of these tactics have complained about it in online forums.

    90% are not recovering. 90% are being labeled as recovered by a quack to make herself look awesome, and then the patients are punished with a fake diagnosis if they refuse to agree that they're recovered.
     
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  4. chipmunk1

    chipmunk1 Senior Member

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    pervasive refusal syndrome sounds like another medical quackery that exists only because the doctors can not admit they don't know what's going on.

    Strangely it often seems to start with a virus but then becomes "psychiatric" and is suddenly caused by "previous life experiences" and "personality traits".

    http://www.dailymail.co.uk/health/a...caged-animal-refuses-eat-talk-leave-room.html

    Might be another version of the "we don't know what's going on let's blame the patient" game.
     
  5. Kina

    Kina Moderation Team Lead

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    It appears that Crawley has some false beliefs -- does that make her mentally ill?
     
  6. chipmunk1

    chipmunk1 Senior Member

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  7. Hip

    Hip Senior Member

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    @kermit frogsquire

    Your entire argument can be discounted on purely logical grounds:

    You are are suggesting that there is both a real physiologically-based ME/CFS illness out there, and in addition, you are are suggesting that there is also a second version of ME/CFS in existence, a psychosomatic version, caused merely by people believing that they have ME/CFS.

    But if it were true that people can manifest all the symptoms of a disease such as ME/CFS just by acquiring the belief that they have that disease, then why don't we see hundreds of such belief-based diseases, all caused by people acquiring the belief that they are ill? Why would this supposed belief-based illness phenomenon be restricted to just ME/CFS?

    If it were possible and common for humans to psychosomatically manifest all the symptoms of a disease simply by acquiring the belief that they have that disease, why don't we see psychosomatic versions of Parkinson's disease, Alzheimer's, asthma, motor neurone disease, epilepsy, myopia, etc, etc?

    Why don't we see millions people who go around bodily shaking like Parkinson's patients, as a result of acquiring the belief they have Parkinson's, but who don't actually have the physiologically-based organic version of that disease?

    If it were possible to become ill merely by believing that you are ill, then the human species would be burdened with hundreds of such belief-based diseases. For every real physiologically-based organic disease, there would be a belief-based facsimile version of that disease.

    But in fact we never see belief-based facsimiles of Parkinson's disease, Alzheimer's, asthma, motor neurone disease, epilepsy, myopia, etc. These don't exist (except in very rare cases of Munchausen's syndrome).

    Thus we see that your argument is logically inconsistent, and incorrect.



    It seems to me that, like all the psychologists who espouse the psychosomatic views of ME/CFS, you haven't thought your argument through properly.
     
    Last edited: Jun 25, 2014
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  8. chipmunk1

    chipmunk1 Senior Member

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    People never report to see them. It's only the trained doctors who can "see" them along with some dwarves, goblins and fairies who like to sabotage their medical work. :eek:
     
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  9. user9876

    user9876 Senior Member

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    With children they use a 3 month rather than 6 month threshold within the NICE guidelines so I suspect there are quite a few children recovering from post viral effects who do recover. Early diagnosis is often needed to deal with difficult schools. I think that there have been a couple of papers (possibly Kilmas or Jason?) following children who got infected with mono or a different virus and of those who didn't recover immediately there was a gradual recovery over 2 years. With a very small number remaining ill after that. I think this effect may lead Drs such as Crawley to believe they are curing people with their advice when there is just a natural recovery. They then reclassify those who don't recover as having pervasive refusal syndrome. But Crawley's ego doesn't allow her to put it down to misdiagnosis instead she has the line that they had CFS which she has cured (with a leaflet!) and now they have a dissociative disorder due to the stress of being ill.
     
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  10. A.B.

    A.B. Senior Member

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    And of course, they make sure to never compare their treatments to placebo and untreated groups, or they would risk finding out their treatment is worthless (possibly even harmful due to the recommendation to not take care of physical symptoms).
     
    Last edited: Jun 25, 2014
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  11. SDSue

    SDSue Florida

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    My head is spinning. Many thanks to @A.B. for providing a much needed laugh!

    Even "mental illness" is shown to have biochemical underpinnings - how do you otherwise explain the multi-billion dollar antidepressant market?

    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. :thumbsup:
     
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  12. Iquitos

    Iquitos Senior Member

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    To answer the question at the top: NEITHER!!!
     
  13. kermit frogsquire

    kermit frogsquire *****

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    Interesting argument - but ...

    We do see lots of these duality "real+belief" based diseases mixed up. ADHD, Fibromyalgia, are just two. In some locations in the USA ADHD got so out of control that 30% of children were given a diagnosis! How did the really sick children with ADHD feel about that? There are your million. But 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.

    Go to any sleep lab, they will tell you that 75% of people who claim to have insomnia sleep just fine when you get the EEG on them. They just think they have insomnia. Once they have a sleep study proving they sleep, many get over their belief.

    So yes, this is a complex issue. It is an issue that can persist over time only for purely symptom based diseases - you can't disprove the belief - hence why it affects ME/CFS. 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".

    But incidentally, I did come across someone once who claimed she couldn't walk because of Motor Neuron, probably not the only case either. After years of very careful couselling she could walk just fine. I have also seen cases of people claiming serious skin diseases where there wasn't a single blemish on the persons skin. Again it took several years to dissuade the person of their belief.

    Lyme disease is currently suffering from this issue too - why - the tests are inaccurate, the symptoms are vague and can be anything.
     
    Last edited: Jun 25, 2014
  14. Tired of being sick

    Tired of being sick Senior Member

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    People ridicule "everything" they don't understand

    Last time I checked, Doctors are no different..
     
  15. Iquitos

    Iquitos Senior Member

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    @kermit frogsquire Your suggestion that real scientists like Dr. Edwards should sit down and talk with quacks like Simon Wessely is like suggeting Jews should have sat down and talked with Hitler.

    To think there is always some "middle ground" when dealing with nutty fanatics is just not thinking clearly on your part.

    Wessely and his gang of miscreants have been bought off by UNUM and other disability insurance companies. Together they have put in place a policy of not testing for the physical abberations of ME patients because that would only encourage them to think they are really sick. Can you not see the manipulation and lack of logic in that policy? There is no concern for the health and safety of patients in this policy. It is simply a way of keeping disability insurance premiums and not paying out when the policy holders get sick.
     
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  16. kermit frogsquire

    kermit frogsquire *****

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    Very true, but it goes both ways for patients, too.
     
  17. kermit frogsquire

    kermit frogsquire *****

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    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!
     
  18. user9876

    user9876 Senior Member

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    Without an understanding of mechanism you cannot subgroup. If we have two different disease processes P and P' each of which produce some observable set of symptoms Q and Q'. It maybe that Q and Q' differ significantly and then P and P' can be separated. However if we have symptom sets Q and Q' that overlap and each patient will have a probability that they have any symptom within a the appropriate set then it becomes hard to separate. This is true whether they are patient described, doctor observed, or directly measured.

    With ME we may have a number of different disease processes but we don't understand them in fact we have little clue. Hence it is hard to attribute a measurement to a particular disease process. The problem is that too much medicine takes a black box approach and naive subgrouping and blackbox testing won't help. What we need is to examine possible mechanisms in more detail. Take measurements, hypothesis mechanisms that could explain them and then subgroup and test. Otherwise subgroups are just arbitrary clusters on a few measurements someone chooses to make.

    I think there is probably a further problem in that I think one of the key things about ME is a dynamic cycle hence people talk of PEM being important. Any dynamic system you need to sample at an appropriate rate given the frequency of effects you are interested in otherwise you get aliasing effects. Hence if you have some patients with blood measurements made at rest as they have rested for a few days prior to going to an appointment so they know they will get there and then they have a lot of help getting to the appointment they may get different results from someone who has been active the day before or someone who has just struggled to get to the hospital on public transport. I think the work of the Lights showed different gene expressions after moderate exercise or maybe it was different cytokines or both. So not having a well thought through measurement strategy of a dynamic fluctuating system will cause further issues when looking at measurement and trying to subgroup.

    I guess though your theory is that there are a lot of people are basically making up their illness and a few who are really ill and hence measuring direct markers would distinguish. However, you may just dismiss a whole set of patients who have markers that someone has not thought to measure or that have yet to be discovered. Our knowledge of the immune system is still quite basic.
     
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  19. chipmunk1

    chipmunk1 Senior Member

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    nice anecdotes but that's the problem with somatisation medicine. controlled trials are always lacking.

    in the end modern medicine that claims to be evidence based can't in most cases show more than a few anecdotes
    what does this tell us about somatisation disorders?
     
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  20. user9876

    user9876 Senior Member

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    I've read some of his papers and they don't really follow a logical argument. I've also seen him make claims and point people to one of his papers in support of his claims but when I've read the paper it doesn't support his argument or has a lot of methodological caveats. Personally I think Wessely and White are so set in their beliefs that they have nothing to offer. Don't forget White was so keen to prove his point and the efficiency of their theories that he redefined recovered to below the PACE trial entry criteria.
     
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