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A disease with two faces? Re-naming ME/CFS
Persuasion Smith covers the bases on the misleading and disreputable name for our disease we've all been saddled with ...
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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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    Where is the data that suggests most are mentally ill and only a minority is organically sick?

    I would love to see that study.

    If there is no data then this is just psychobabble.

    Keep in mind that even mentally healthy people can experience placebo effects.
     
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  2. Firestormm

    Firestormm Guest

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    I think there is a confusion above between biomarkers for a disease and measures from individuals that may have no bearing whatsoever.

    Also I would suggest that many of us are simply not tested or aware of the results that others seem to be (and who post those results on this forum and elsewhere).

    So much more work needed before broadcast results are used to consider 'sub-groups' on this level.

    Also it struck me that whilst we might rightly indicate our frustration at a seeming lack of adequate testing and equate this with misdiagnosis - in a world where testing still depends a great deal on a doctor's decision and perhaps more so on 'seeing' something that might prompt a test - perhaps a lot of us with this diagnosis (as well as other people in general), have to wait until additional symptoms and signs present themselves.

    And of course 'tests' are not definitive - sometimes they can be hit and miss even for more established diseases. But perhaps tests are better than relying solely on a doctor's opinion. I have often been left extremely dismayed by a profession that can still see one doctor effectively disagree with another - based on nothing more than his/her apparent listening to my narrative, a cursory examination, and their applied experience.

    But I am not sure our dismay at misdiagnosis is any different than for other people. Sure diagnoses get missed and possible treatments delayed - or indeed never occur - but (as in my own case) it was only the recent linking of several symptoms including most noticeably the swelling across my knuckles and associated pain (but the visible swelling more so), that has led to several doctors considering Rheumatoid Arthritis.

    We as patients are on a conveyor belt in large part and our progress along it depends very much on who you see and what they see in you - but it also depends a great deal on the extent of your illness at the time and how you convey the symptoms.

    Thinking that we should effectively abandon the criteria for ME/CFS and seek to break things apart into sub-groups at this stage seems premature at best. Subgrouping will come and I think the results of any pre-trial study in the UK in relation to Rituximab might indicate why as well as who, within the ME/CFS pool, responds.

    But until science can replicate the work that appears to indicate sub-groups - the very least that doctors in the UK can do is accept and adopt the NICE Guideline. Of course I realise that many here - including myself - are not happy with all of it (especially the 'treatment' or management options), but this Guideline at the very least establishes ME/CFS as a 'real' illness and certainly no bloody 'MEME'.

    Something the lead physician of the CFS/ME service in Essex and the GP Trainer from Wales - should know only too well.
     
    Last edited: Jun 23, 2014
  3. Bob

    Bob

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    My comments were really just observations, rather than an attempt to propagate a conspiracy theory.

    It is a fact that the psychiatric lobby in the UK claims that CFS is a functional illness. (i.e. it is claimed that all CFS patients have a functional illness.)

    It is a fact that the bulk of psychiatric research in the UK fails to attempt to carry out proper research e.g. trying to understand the nature of the illness by looking into subsets or biomarkers.

    It is fact that leading proponents of the cognitive-behavioural model of illness in the UK work for the insurance industry and run large clinics for CFS, based on the (discredited) cognitive-behavioural model of illness.

    It is a fact that the PACE trial demonstrated that CBT does not improve objectively measured physical disability or working hours etc, and yet this has never been highlighted by the authors since the paper was published.

    It is a fact that only 15% subjectively responded to CBT/GET in the PACE trial and yet the authors have never acknowledged this since publication and instead misleadingly promote a 60% response rate, and a 22% post-hoc 'recovery' rate for which patients can deteriorate and 'recover' at the same time.

    As I said earlier, I'd be happy to see any research carried out (including in the field of psychiatry) if it was done with honest intent with a view to finding out more about the illness/es. What I object to is research specifically designed to dishonestly prop-up a failed hypothetical model of illness.
     
    Last edited: Jun 23, 2014
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  4. kermit frogsquire

    kermit frogsquire *****

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    Your argument is pointless for two reasons -

    1)These is no way to tell who actually has ME/CFS (it's not even one thing anyway) and therefore no study could prove someone either does have it or doesn't have it.

    So I could equally say, show me a study that proves everyone is organically sick? And when you can't, follow that up with a crowd pleasing, but nonsensical - unless you can prove it, everything you are saying is psychobabble.

    2)The placebo effect predominantly affects subjective complaints - feelings of pain, feelings of depression. Therefore, when I posed the question, how may RA patients have gone from wheelchairs to running miles within minutes of shouting "STOP", and more importantly remained well? Professor Edwards knew the answer. Placebo studies have shown zero objective response to malaria, TB, autoimmune hepatitis and most organic disease.

    @Firestormm, at what stage would that be? - after 30 years of mindless research where grouping everyone together has proven ... NOTHING! Are you seriously suggesting we should wait and wreck another promising trial? I appreciate that you may be naive to the history of ME, but people were talking about subgroups in the early 1990's - so please tell me, when is the right time?

    Incidentally, have you actually read the "pre-trial" B-cell studies that have been done? The results are meaningless, there is 100% overlap between healthy controls and patients on all measures tested - the results can't be used to select anyone for anything.

    In those studies the only difference between controls and patients was that the controls had data with a wider distribution - what is called "extended tail" distribution. In such circumstances, statistical analysis fails abysmally because it assumes both populations are the same other than the thing being tested. Changing from a student T-test to a Mann-Whitney rank sum analysis does not solve this problem.
     
  5. Valentijn

    Valentijn Activity Level: 3

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    They're still referring to our perceived realities, and have in no way rejected their underlying "meme" theory.

    And don't apologize for our reactions - apologize for your behavior. In this case, such apology would best come in the form of the resignations of those involved, including the manager who keeps minimizing the bad behavior.
     
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  6. kermit frogsquire

    kermit frogsquire *****

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    @Bob , it may surprise you, but I agree. See @Firestormm 's comments above and Professor Edwards trial proposal - we are making the same failings. You are right, we must subgroup.

    Also, my discussion on memes was to point out one thing, we can't blame the psychiatrists for everything, there really are patients who fulfil their "functional illness" claims. Just as with ADHD there are patients who seek out a diagnosis of ME, and there are plenty of CFS specialists only too willing to dish them out. This is not a black and white issue, which is why we need to start sorting the mess out, subgrouping, and insisting on biomarkers.

    For example, there certainly are people with true ADHD, but now because of the volume of "diagnosis seekers", no one believes it is real. The solution is not to continue to base research on everyone!
     
  7. Bob

    Bob

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    CFS criteria diagnose patients who experience physical fatigue and usually some other symptoms.
    So if a patient subjectively experiences physical fatigue or exhaustion then that is the evidence that they have CFS.
    If a patient has a mental illness then they should get a different diagnosis.

    You cannot go around claiming that 'most' CFS patients are mentally ill without citing evidence back up such a claim. (There is no evidence - it's just a pet theory of your own.)

    Conversely, it is possible to cite evidence that demonstrates biological abnormalities in a majority of CFS patients.
     
    Last edited by a moderator: Jun 24, 2014
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  8. kermit frogsquire

    kermit frogsquire *****

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    No, @Bob there aren't any reproducible studies that show objective marker in a majority, you need to think again. Instead, there are large studies (with 200+ patients) where the majority have no objective markers. And there are studies by very small research groups where they have pre-selected a small group (less than 30) and objective markers are demonstrated, but these studies are never reproducible by other groups.

    Why - heterogeneous cohorts.

    And finally, there are large numbers of patients who have a label of ME/CFS (often labelled by a CFS speicalist) who make dramatic recoveries from shouting "STOP" - what more evidence do you want that there is a problem of false-belief. That isn't a "theory" it is a fact.
     
  9. chipmunk1

    chipmunk1 Senior Member

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    If you have a person where physical symptoms dominate the picture you can only assume it is physical unless you can prove otherwise.

    To assume physical symptoms are most likely psychiatric and unlikely to be physical goes against logic and commonsense.

    How many people got well here on this forum by shouting STOP? If that would work for the majority the forum would be a ghost town.

    Then how does a single anecdote among the thousands and thousands of anecdotes that show the contrary invalidate all the others? How does this make sense?

    Your logic goes like this:

    I find one counterfeit banknote in my wallet therefore the majority of money in circulation is invalid.

    This makes as much sense as the psychobabblers.
     
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  10. Bob

    Bob

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    Are you sure that some cytokine abnormalities have not been reproduced?
    I thought that some were quite, if not entirely, consistent.

    We are in agreement that 'CFS' criteria select heterogeneous cohorts and that there is a major problem with misdiagnosis. But you've got a provocative way of making your arguments. (Anecdotal stories about spontaneous recovery do not define an illness*.) Why don't you just put across your case that defining subsets is important without adding unsourced assertions about mental illness and provocative comments about memes? Then everyone would probably agree with you that we need to focus on discovering subsets. Instead this whole thread has become distracted in an attempt to rebut your provocations and unsourced assertions.

    * BTW, CFS is not unique in seeing claims of spontaneous remission. It happens for many illnesses. As science progresses it's becoming more difficult to make unsubstantiated claims of spontaneous remission from illness.
     
    Last edited: Jun 23, 2014
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  11. Kina

    Kina Moderation Team Lead

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    @kermit frogsquire Your comment about ADHD is patently false and it would be helpful if you would stop making these sweeping generalizations. My daughter who has neurological damage has 'true' ADHD which is the least of her problems and ADHD is treated very seriously and seen as a real disorder in my world. Yes, ADHD is over-diagnosed but it is still taken seriously. The reason why diagnoses like this are over-used does lie on the shoulders of the psychs in part because the DSM's have made it so normal is abnormal so everybody now has some psychiatric disorder. I can't wait for Meme Disorder to show up in the next volume of the DSM. 'True' real not-fake ADHD has organic causes and shouldn't be treated as a behaviour/psychiatric disorder in the first place.

    My daughter has received at least 10 different psychiatric diagnoses in her life -- these were misdiagnoses where her behaviour was seen as driven by psychiatric factors rather than organic brain damage. During this time, she did not have 'false illness beliefs', she was MISDIAGNOSED. Personally, I find your sweeping generalizations and constant use of the term "false illness beliefs" to be insulting and damaging to not only our patient population but to any person through no fault of their own have been misdiagnosed.

    How about a bit of respect and use the word 'misdiagnosed' rather than the Wessleyesque "false illness belief".
     
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  12. chipmunk1

    chipmunk1 Senior Member

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    True but in most parts of the civilised world physical symptoms most likely means physical not mental illness. Only in psychobabbleland it's the other way around.

    I have read a lot of the research of somatization disorders and i know how questionable it is.

    The dirty little secret of the somatization disorder field is that most patients respond very poorly to what are essentially mostly ineffective treatments. No one of the experts can really explain what happens unless they make use of invalid freudian models.

    Ask Justina Pelletier if you don't believe me.
     
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  13. Keela Too

    Keela Too Senior Member

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    YES!! Just hitting "like" seemed insufficient! This summary of the difference between the approaches of science and psychiatry should heard by a much wider audience!
     
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  14. A.B.

    A.B. Senior Member

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    @kermit frogsquire You're producing one wild claim after the other, and have refused to substantiate even a single one after being asked multiple times.
     
    Last edited by a moderator: Jun 24, 2014
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  15. chipmunk1

    chipmunk1 Senior Member

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    If you make extraordinary claims you should provide evidence for this. Where did you get the tens of thousands figure from?

    Also tens of thousands is meaningless since you don't tell us what percentage of people did recover with LP.

    You made the claim that the majority of people with ME are mentally ill.

    From what i have read i got the impression that LP doesn't work for most people with ME.

    Another reason to be skeptical: Assume that most ME cases are mentally ill.(Ok you already do this)

    What other mental illness can be expected to be permanently cured by standing on a paper and shouting "STOP"?

    Even "real" psychological or mental illness would not permanently vanish as a rule making it even more doubtful that imaginary ME could be cured by such a process.
     
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  16. Esther12

    Esther12 Senior Member

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    1) So why not be honest about that ignorance rather than going on making bold claims about percentages who are mentally ill, etc? You seem to undermine your own point.

    2) And the data shows that CBT for CFS improves questionnaire scores, but not the objectively measured amount of activity that people can actually engage in. People with all sorts of illnesses, including arthritis, can report improvements following quack interventions - things like response bias, wish thinking, etc can explain a lot of this. a few people with CFS having reported that they improved after LP is just not that interesting, unless it's part of a properly controlled trial attempting to use objective measures of patient's health. When people go on a course telling them that they should think positively about their health, it's not so incredible that some then report being more positive about their health.
     
    Last edited: Jun 23, 2014
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  17. chipmunk1

    chipmunk1 Senior Member

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    could you please link to that paper?

    I am still interested in the tens of thousands subjects that recovered with LP.
     
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  18. Firestormm

    Firestormm Guest

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    I am interested in learning how the majority of those posting on this thread have a mental illness rather than ME.... :rolleyes:
     
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  19. user9876

    user9876 Senior Member

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    She promises a success rate of 97% to her patients but she also seems to believe that ME is time limited, even with a child who deteriorates she claims to have successfully treated their CFS but then says they must have a dissociative disorder due to the stress of being ill. They she tries to get the local CAHMS doctors to diagnose PRS and have the child placed in a psychiatric unit. But this counts are recovered for her since she declares that she has successfully treated their CFS (yes with a little advice, colouring charts and a couple of phone calls) even when they are still ill with the same symptoms. No medical examination is necessary for this either!
     
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  20. chipmunk1

    chipmunk1 Senior Member

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    sounds like psychobabble
     
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