1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
A Little Poisoning Along the Road to ME/CFS
Looking at my symptoms, many of which are far less these days and some are gone, it would be easy to figure that I'd just been dealing with some heavy-duty menopausal issues.
Discuss the article on the Forums.

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. kermit frogsquire

    kermit frogsquire *****

    Messages:
    125
    Likes:
    37
    Moderator Note:

    The next 87 posts have been split off from this thread -- "BMJ Rapid Response: Is Chronic Fatigue Syndrome a meme? 18 June 2014"


    Thank you Professor Edwards! However, I am a little more cautious about a retaliatory attack on the "psychiatric model". Having met hundreds of patients over several decades and spoken with experts from both sides of the fence my conclusion is that there must be common ground - diametrically opposed opinions are not helping patients and they are not helping patients for the following reasons.

    1. There certainly are patients with purely psychiatric who are diagnosed with ME/CFS, possibly more than those with organic disease.
    2. The above patients main psychosis is that they believe they have an illness. They predominantly develop symptoms through hearing or reading about them.
    3. It is both dangerous to those patients (for reasons of reinforcing their psychosis) and to the patients who have organic disease (for reasons that their illness becomes dismissed through decades of never ending argument) to deny these facts.

    Perhaps a better way forward would be to have some form of dialogue with the "opposite side", put forwards cases of definitive organic disease, likewise be prepared to listen to their cases of definitive psychiatric illness - and yes there are many.

    Perhaps a better was forward would be to abandon the label "CFS" and "M.E." completely - and two (or more) new separate entities coined, a formulation devised to separate those with psychiatric illness from those with organic disease? And no, neither the Canadian Criteria, nor the ICC achieve this.

    Do meme's exist? - of course. We can hurl abuse and claim it is intellectually devoid, but we all know they exist. They exist for both patients and practitioners.

    - the entire cottage industry that developed around ADHD is a meme, in some locations some 30% of children in the USA were/are diagnosed with it.
    - Homeopathy is the memsiest meme of all.
    - All the defunct alternative therapies (dare I mention the Lightning Process) are memes.
    - Integrative medicine and anything Dr Cheny says seems to become a meme.
    - The psychiatric idea that M.E. is "all in the head" is a meme.
    - And lastly I'm sorry to say it, the idea that M.E. is "real" is a meme.

    It is true, the words used in the BMJ were harsh and unsympathetic and twenty-five years ago, I would have been pissed off by comments from some nitwitt psychiatrist calling Chronic Fatigue Syndrome a meme.

    But what I'm pissed off about now is that there is still a diametrically adversarial approach to ME/CFS, there is denail from both sides, and no one is using their brains to sit down, talk about the issue like professionals and help patients! Jesus - let's not continue to make ME/CFS some kind of war of belief!

    I would love it if, just as with MS, Parkinson's, stomach ulcer, diabetes, or any of the other illnesses that psychiatrists once claimed (in a meme-like fashion) were "all in the head", some brilliant physician would sweep in and prove them all wrong. But my conclusion is, after the aforementioned decades, that just isn't going to happen. And the reason it isn't going to happen is because of the mess that ME/CFS has become, literally everyone is being diagnosed with it no matter what they have.

    So, I don't want anyone to curry my favour, I want a solution that will separate the hotch-potch of ME/CFS, dialogue between sides, and a way forward.
     
    Last edited by a moderator: Jun 24, 2014
    Marco likes this.
  2. Valentijn

    Valentijn Activity Level: 3

    Messages:
    6,686
    Likes:
    10,098
    Amersfoort, Netherlands
    Do you have any evidence supporting any of this?
     
    Last edited by a moderator: Jun 24, 2014
  3. chipmunk1

    chipmunk1 Senior Member

    Messages:
    255
    Likes:
    756
    The main psychosis in such cases is that the doc believes they DON'T have an illness because it is not in the textbook.

    It's the most common psychosis among MDs. It usually develops in med school,takes a chronic course and has a poor prognosis. Contact with peers usually reinforces it. It is highly contagious. It may cause intellectual deterioration in many cases,. Subjects do usually lack insight.
     
    Kenshin, melamine, Izola and 20 others like this.
  4. A.B.

    A.B. Senior Member

    Messages:
    756
    Likes:
    2,224
    Psychogenic explanations for illness have historically always lost to science. The way forward is not to find a "middle ground" but to abandon belief in psychogenic illness until it's proven to even exist.

    The absence of A does not prove the presence of B. Applied to the issue at hand, the absence of evidence for physical illness doesn't prove the presence of a psychogenic illness. A child can understand this - why can't certain doctors?
     
    Last edited: Jun 21, 2014
    melamine, Izola, PhoenixDown and 13 others like this.
  5. RustyJ

    RustyJ Contaminated Cell Line 'RustyJ'

    Messages:
    988
    Likes:
    482
    Noosaville, Aust
    I would also add point 3 to the pile:

    Apparently the practice of interpreting personal beliefs as scientific fact is not limited to psychiatrists - evidence of a conversion disorder?.
     
    Last edited by a moderator: Jun 24, 2014
    melamine, horcrux, Min and 1 other person like this.
  6. alex3619

    alex3619 Senior Member

    Messages:
    7,668
    Likes:
    12,428
    Logan, Queensland, Australia
    @kermit frogsquire

    ME occurs in epidemics. In 1955 its was shown to be blood transmissible ... this had nothing to do with the Royal Free epidemic, it was the publication of a study from the 1949 Adelaide epidemic. Autopsies on humans and infected animals sometimes show the same spinal and brain lesions.

    There is NOT ONE case of any psychogenic illness being proved. If you think otherwise, then out of the thousands of papers, please pick one that proves their existence. If its proven, then a paper must have been written that did that. Name it!Just NAME ONE paper!

    Psychogenic explanations are an interlocking set of mutually reinforcing beliefs, and they ignore or dismiss all the contrary evidence. They do not practice modern scientific approaches - though to be fair this is not an area that lends itself to science. Yet they still want to claim scientific authority. They center around charismatic figures like Freud. We have a word for that. Its a cult.

    The entire field is nonscience. To claim its science is pseudoscience. For a doctor to practice pseudoscience is ... ?

    There can be no middle ground with babble. There can be a middle ground with psychiatry and the rest of medicine - doctors need to take responsibility and finally put psychogenic babble to rest.

    Since 1949 we have had a test that can reliably show severe pathophysiology in ME - severe enough to explain most of it, and certainly a fatigue state. In 2007 someone finally figured this out. Just two months ago the independent replication of this was published. Psychobabble diagnoses are now moving to a point where a physical illness is acknowledged, but now there is somehow a psychiatric illness on top of that. They are in retreat, but the babble has not stopped.

    If you are wondering what that test is, its the two day CPET, or Cardio Pulmonary Exercise Test: an obvious test to perform on someone with disabling fatigue.

    Psychobabble is already creating the seeds of the next psychobabble. Soon there will be a mass migration to the new positions. ME wont be psychogenic any more, nor fibro or many other diseases. Instead the other patients, ones who stil cannot be diagnosed, will somehow have a psychogenic disorder. Further, many with ME will be diagnosed with comorbid psychogenic illnesses. If you doubt me, look at DSM-V. If CFS disappears as a diagnosis, and ME becomes recognized (probably with a new name)then many with ME will be diagnosed with comorbid conditions, and anyone who cannot have a diagnosis may be fodder for psychobabble.

    Something like 10% of MS patients are diagnosed with a psychiatric disorder first, then later the docs figure it out. I have only started looking into this. Current thinking by some is that many with MS have MS and a psychogenic disorder.

    Countless millions of people have possibly been harmed by this. There is no way to know the numbers. When will the medical profession assume responsibility, step in, and put a stop to it? When will medicine finally declare psychogenic diagnoses are not valid medically?
     
    melamine, Izola, dlap4 and 21 others like this.
  7. biophile

    biophile Places I'd rather be.

    Messages:
    1,400
    Likes:
    4,854
    Roughly 10% may cop a "CFS" diagnosis as well!

    http://www.ncbi.nlm.nih.gov/pubmed/23439577
     
  8. Firestormm

    Firestormm Guest

    Messages:
    5,824
    Likes:
    5,982
    Cornwall England
    Dr Collings is consultant physician and NHS CFS/ME Service Lead (and the subsequent reply was from a GP Trainer). Had this come from a psychiatrist or psychologist - perhaps - (or even a philosopher) I might have been less concerned about their reasoning and the effect such thoughts might have on the patients.
     
    Izola, MeSci, vli and 3 others like this.
  9. alex3619

    alex3619 Senior Member

    Messages:
    7,668
    Likes:
    12,428
    Logan, Queensland, Australia
    Yes, I am aware of that. Misdiagnosis is not confined to psychobabble.

    However some also get an MS diagnosis and later that changes to ME. These diagnoses are not fully stable. We need better testing. ME and MS are so similar though, and there objective evidence of the existence of MS is solid, and has become solid for ME.

    However the psychiatric diagnoses have no objective test. There is no solid objective data proving the existence of any psychogenic illness. I am here not referring to anxiety or depression, etc., but things like conversion disorder, hysteria, somatization, etc, and most importantly the reclassification of diseases with objective categories like ME into a psychogenic classification .. these have never been proven right, not ever.
     
    Izola, Wildcat, beaker and 6 others like this.
  10. user9876

    user9876 Senior Member

    Messages:
    789
    Likes:
    1,930
    The problem that there are a lot of patients who have their symptoms ignored by doctors as they are 'worried well' or considered psychosomatic. I've come across too many cases where doctors have just dismissed peoples symptoms for a quite small group of people I know so any encouragement for doctors to do this is bad. This includes, for example, people who had cancer whose symptoms (inc lumps) were ignored, someone whose bone marrow was failing. In one case a friend was given a course of councilling for an undiagnosed hiatus hernia. Early symptoms for some of these were things like dizzyness, fatigue, pain and headaches.

    To me it is wrong to give doctors any excuse not to investigate. I don't believe that there are people who would be negatively affected by investigations but even if there are this needs to be traded off against people who have acute problems missed (potentially leading to death) by doctors refusing tests to people they see as the worried well.
     
    Izola, beaker, WillowJ and 8 others like this.
  11. kermit frogsquire

    kermit frogsquire *****

    Messages:
    125
    Likes:
    37
    I've seen it time and again we all have, just look at the old message board posts where people were claiming cures from the Lightning Process (unless you honestly think saying "no I don't do my illness" can actually remove organic illness in a matter of seconds). Regardless Dr Leonard Jason studies support it - his work was used for the CCC.

    But anyway, I think people have missed the point - I am not extolling the virtues of a psychiatric explanation for ME/CFS - I am merely pointing out the fact ----- That there are a huge number of people out there who honestly think that have ME to the point of making up the symptoms, and when they are tricked into believing something else (for that is what CBT/NLP/LP therapies do), their symptoms evaporate. Therefore quite clearly, in the context of those patients ME/CFS is a meme - a behaviour they learned from someone else.

    Now, we could call those patients misdiagnosed (except a lot of them actually want a diagnosis of ME and have sought one out from CFS specialists who are only too keen to oblige, thus reinforcing their belief, point 3 above) or we could call them other names like fakers, or delusion etc, but the truth of the matter is:

    i)that they outnumber the people with organic disease
    ii)what is ME/CFS except a collection of symptoms
    iii)and the people who do have organic disease have a whole range of different illnesses, anyway.

    This leads back to my point - to fight over who has claim to M.E. in an insane war of words is THE problem. Instead, if Professor Edwards sat down with the psychiatrists (Wessely/White/Sharpe) and had a long chat, and each one listened to the other, perhaps then there could be an agreement - some patients have an organic disease, but some patients don't, and quite honestly the term CFS/ME is useless and we should separate patients out before more get hurt.

    Regarding the MS analogy from, @alex3619. Look, this isn't about misdiagnosis. Imagine the following

    1) There were thousands of people who were all claiming to have MS and 80-90% of them were actually mentally ill and were delusional.
    2) Imagine a group of doctors reinforcing that diagnosis as a label in those patients.
    3) Now imagine another group of doctors who believed MS was really an organic disease, but there was no way to tell which patients had what.
    4) Further, those well meaning doctors then started arguing with the others in a never ending war of words.
    5) And further the well meaning doctors refused to subgroup the few patients who actually had evidence of organic disease thus research was always based on a heterogeneous cohort where 80% were delusional.

    This is the reality of ME today. And this is the reason that M.E. patients get dismissed as psychosomatic. It doesn't matter what you call the label - if you dump a hotch-potch of different illnesses into one group, what you get is a massive mess where everyone gets ignored.

    You only have to read posts on here to see there are patients with common blood abnormalities. Don't ignore those abnormalities just because we have all been lumped in together, use them to select us!

    PS (The 2 day exercise CPET test has problems in my opinion. You can get a 2nd day result from otherwise healthy people who spend a week in bed - see astronaut research. Therefore, unless a one day exercise stress test is abnormal I don't think it is necessarily useful. One day test, great, two day test, not so great.)
     
    Last edited by a moderator: Jun 24, 2014
    Marco likes this.
  12. Cheshire

    Cheshire Senior Member

    Messages:
    173
    Likes:
    464
    France
    I understand some of your points, even if I am far from agreeing with all, but I think you're a bit optimistic in saying this
    Wessely/White/Sharpe and all the others have allways dismissed the biological findings as due to stress or deconditionning, and we are not talking about supposed mentally ill patients.



    Where did you get that claim?
     
    taniaaust1 and A.B. like this.
  13. user9876

    user9876 Senior Member

    Messages:
    789
    Likes:
    1,930
    What really matters is not people with different views discussing but for researchers to explore the biological mechanisms and try to get an understanding. This is what will lead to progress. That means forming hypothesis about potential mechanisms and experimenting and doing trials. That then needs publishing. Understanding mechanims will lead to ways to segment. Political accommodations between those with different theories have no place in science.
     
    Iquitos, beaker, justy and 3 others like this.
  14. kermit frogsquire

    kermit frogsquire *****

    Messages:
    125
    Likes:
    37
    Is it better to argue with them in a war of words? Sadly, many of the findings I've seen championed by Cheney or any of the other CFS speicialists aren't up to much. Quite obviously if we really had the proof you think we have then we could prove it. Plus at least if Prof Edwards offered, we could play the card of having made the offer and take the high road. Instead all these attacks get us is tarred by the press as militant.

    As to the numbers of ME patients who are delusional - Ramsey research group put it at 50%, Jason et al cite a similar numbers, from my experience it is much higher - try going along to a Lightning Process seminar and you will see what I mean! I've seen people who claimed to need wheel chairs go for a run. And no they aren't plants, these people genuinely thought they needed wheelchairs.
     
  15. chipmunk1

    chipmunk1 Senior Member

    Messages:
    255
    Likes:
    756
    Source?

    I didn't realise that physicians would hallucinate that much. I expected they would see one or two imaginary psychogenic MS cases from time to time.(Often when not taking their antipsychotic medication) But thousands of psychogenic MS apparitions seems to be a bit exaggerated. Even marian apparitions or UFO sightings are not THAT common.
     
    Izola, Iquitos, golden and 4 others like this.
  16. kermit frogsquire

    kermit frogsquire *****

    Messages:
    125
    Likes:
    37
    Yes, but if any trial you do contains a heterogeneous group where 80% of them are mentally ill, what you get is results that can't be reproduced, results that mean nothing. This is exactly what has been happening for 30 years to ME patients. For research to be done, first patients must be subgrouped where only those with objective markers are studied.

    Yes, that will exclude a lot of patients to start with, but ultimately we all benefit as we actually learn more about the illness and different groups.
     
  17. chipmunk1

    chipmunk1 Senior Member

    Messages:
    255
    Likes:
    756
    if so many people with ME are mentally ill where are the masses of mentally ill here on this or on other forums?

    Considering the circumstances the majority of people seems pretty sane. If you read some of the studies of the psychnutters you don't see much coherent or logical thought.

    Something doesn't add up here.
     
    Iquitos, golden, Sidereal and 3 others like this.
  18. Jonathan Edwards

    Jonathan Edwards Board Member

    Messages:
    1,105
    Likes:
    5,076
    Dear Kermit Frogsquire,

    I think you have misread my message. This is a very complex problem, with subtle issues, as I mentioned. To be honest, I don’t think your analysis starts in a helpful place. I will make a few points.

    1. Many people believe they have rheumatoid arthritis, lupus, coeliac disease, multiple sclerosis and so on, when they do not – probably more than do have these diseases. Any experienced doctor is aware of that and factors it in to any assessment. Nobody suggests that RA is a meme. Moreover, however many false believers there are there are still far too many people with true RA told by their GP that there is nothing wrong with them because the tests do not show up. (Like me and my, now removed, prostate cancer in fact.)

    2. So no doubt there are people who believe they have an illness called ME, when they merely have a false belief. But we have a more complicated problem here because there is no robust way of telling whose illness is ‘merely a belief’. Until there is, your claim that you know seems unhelpful. Yes, of course the priority is to identify different causal mechanisms in people with CFS syndrome but a scientific approach does not start with assuming you know which is which with no evidence. We have to start without our own, maybe false, beliefs.

    3. Your labeling people who just ‘think they have ME’ as ‘psychiatric rather than organic’, or indeed ‘psychotic’ seems misguided. In general, psychosis means an organic brain disorder characterized by false beliefs that, significantly, are not amenable to talking therapy based on rational argument. Psychosis bears no relation to the infectious popular ideas sometimes called memes, which yes, we all know about. I wonder if you might be a bit more sympathetic to people with psychosis. A member of my family developed a psychosis after taking a preventive antimicrobial drug – with hallucinations and a belief that she was dying of bowel obstruction. She had an organic brain disease: i.e. a psychiatric disease. If it were not for intravenous therapy and other major measures she would have died of dehydration. The mechanism of such illness is not known but might be immune or due to changes in neurochemistry alone. If some ME has a similar basis (either), are you suggesting these people deserve no sympathy and should merely be told they have false beliefs? The problem seems to me that since we agree that ME is as much a disorder of the brain as anything what exactly this sort of ‘psychiatric/organic’ division means – nothing to my mind. This is the wrong analysis, the wrong debate. It has very little to do with my horror at the suggestion that ME is just a meme – with all the reasons why it cannot be, given by others here, and the lack of social skills airing the suggestion in public implies.

    4. The crux of all this, which has been lurking behind various threads, is of course the desire by both doctor and patient to put people in a single disease pigeonhole and pretend we know what it is. The problem with the department of work and pensions stuff is that it is assumed that ‘ME is biopsychosocial’. Because some people have psychosocial problems in association, ME has psychosocial problems. One size fits all. So you are right that we want to separate out different processes but until we can do that we need to treat everyone with respect and try to find the most helpful management for each person's problem.

    5. As far as I can see the real issue is, in the absence of any proven biological therapy, to what extent does talking help some people. I would have thought almost everyone will find the disease easier to cope with if there is someone prepared to take some time to listen to their problems on a regular basis and show that they are interested. Maybe what NICE guidelines should be is SIT: showing interest therapy. But why not cut out the therapy word and just listen? My own limited experience of CBT is that it is delegated to young psychologists with no insight into the problem they are trying to help and so is a joke. Some people do seem to benefit from talking in ‘CBT’ sessions but I suspect it is the SIT not the CBT that helps. But it is also important that showing interest does not perpetuate unhelpful dependence on medical services. I have always thought the key element in getting the balance right was telling the truth. Writing in the BMJ that you think patients are just imagining their illness would seem to be a poor place to start when it comes to knowing how to show honest interest in the clinic.

    So no denial, no diametric opposition, was implied in my original post. I said ‘there are subtle issues here, as we all know’ (useful to read between lines at times) but the simplistic pseudoscientific presentation we were discussing fully deserved a rebuke. The recent IiME research colloquium highlighted precisely the issues you raised – separating subgroups and finding biomarkers. So I would be more sanguine. My experience is that once people have thought carefully about what they should be looking for they will find it – and I met a number of people who have been thinking carefully recently.
     
    melamine, horcrux, ahimsa and 26 others like this.
  19. user9876

    user9876 Senior Member

    Messages:
    789
    Likes:
    1,930
    Without understanding mechanism or being able to make an hypothesis about mechanism that can be tested any subgrouping is purely arbitrary based on clustering of symptoms and intuition. Its important to try to understand what is happening in the blood for example with b-cells. Which I would guess is why Prof Edwards is doing prework prior to a trial. Its the problem with a lot of evidence based medicine is it has become black box testing but with trials tests can be done to try to understand who it works with and why.
     
    ukxmrv and Valentijn like this.
  20. WillowTree

    WillowTree ME/CFS is NOT fatigue!

    Messages:
    36
    Likes:
    50
    Illinois
    And don't forget that it was years of physical-causation denial with promotion of psychogenic causation that hampered/halted research into the pathophysiology, search for bio-markers, etc. of this life-altering, organic, debilitating neurological and immunological disease. This, along with watered-down case definitions and the creation of the ill-conceived "chronic fatigue syndrome," is responsible for thirty years of spinning wheels with no progress in getting to the heart of this disease and true treatments for those who suffer from it.
     
    Izola, Iquitos, GracieJ and 4 others like this.

See more popular forum discussions.

Share This Page