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!
Phoenix Rising Adds Two New Board Members
Mark Berry introduces the new President of Phoenix Rising, Dr. Gary Solomon, and welcomes Professor Jonathan Edwards to the Phoenix Rising Board of Directors.
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. Valentijn

    Valentijn Activity Level: 3

    Messages:
    6,265
    Likes:
    8,937
    Amersfoort, Netherlands
    An excellent question. Maybe the hypothetical psychosomatic hordes are the ones who listen to the psychobabblers when warned to stay away from "radicals" and their forums? :D

    More seriously (and not in response to you!), I've seen exactly ONE member on this or any other ME forum who probably had some hypochondria issues in addition to their biological issues. There are a lot of people who come here without ME/CFS, but they're asking questions, and very very rarely claiming a diagnosis with any certainty.
    Izola, taniaaust1, beaker and 6 others like this.
  2. WillowTree

    WillowTree ME/CFS is NOT fatigue!

    Messages:
    36
    Likes:
    50
    Illinois
    In the meantime, more and more people around the world are coming down with ME/CFS and becoming disabled by it. One member at the recent Chronic Fatigue Syndrome Advisory Committee meeting called it a crisis. Who, pray tell, is responsible for that?
    Izola, beaker, ukxmrv and 1 other person like this.
  3. Valentijn

    Valentijn Activity Level: 3

    Messages:
    6,265
    Likes:
    8,937
    Amersfoort, Netherlands
    No, sedentary controls have very different results than ME/CFS patients. If you're aware of 2-day CPET research involving drastically worse results on the 2nd day with any non-ME patients, please do share it. No one else is aware that such a thing exists, so I'm sure your contribution would be appreciated.

    In general you seem to be making a lot of grand assumptions with absolutely no evidence whatsoever.

    Moderator -- for more posts related to CPET see here.
    Last edited by a moderator: Jun 24, 2014
    beaker, vli, justy and 8 others like this.
  4. chipmunk1

    chipmunk1 Senior Member

    Messages:
    191
    Likes:
    602
    With the current diagnostic criteria, 30-40% of the population could probably be diagnosed with some kind of "mental" disorder. Not sure why they tend to highlight psychological symptoms in CFS sufferers. It's not that this is something that is unique or special nowadays.

    This is very common fallacy in CFS research:

    Psychogenic illness need little to no evidence to exist, just random babbling of a few self proclaimed experts.

    All evidence of organic illness is never good enough, inconclusive, incomplete etc.. They set the hurdle so high that it becomes almost impossible to satisfy their criteria since in science there is never anything 99.99999999% certain.

    Then they assume since an organic illness was not definitely proven(according to their questionable criteria) this is automatically proof and solid evidence that their model (the psychogenic) is legit.

    Moderator Note -- for more posts related to CPET see here.
    Last edited by a moderator: Jun 24, 2014
    horcrux, beaker, Sidereal and 2 others like this.
  5. Bob

    Bob

    Messages:
    8,052
    Likes:
    10,316
    England, UK
    I wonder if they'll next say that ME/CFS patients object to it being labelled a 'meme' because of the perceived stigma attached to memes? :rolleyes:
    beaker, vli, Sean and 3 others like this.
  6. Bob

    Bob

    Messages:
    8,052
    Likes:
    10,316
    England, UK
    Indeed. We probably all know people who have had serious illnesses missed or misdiagnosed.

    I have a friend whose doctor was persistently dismissive of his symptoms, and he ended up being hospitalised. The hospital discovered that he had severe Type 1 diabetes.

    My thyroid dysfunction went undiagnosed for two years, and I developed an associated lung problem during that time.
    I repeatedly complained of having developed a lung problem, but the symptoms were dismissed by my doctor as being non-existent.
    Unsurprisingly the lung problem cleared up as soon as the thyroid was (belatedly) treated.
  7. Bob

    Bob

    Messages:
    8,052
    Likes:
    10,316
    England, UK
    ME is very real to those who experience it and whose symptoms closely match those described in the literature.

    I agree that it's possible that, in time, ME cohorts may prove to be heterogeneous, but ME is still real even if heterogeneous.
    Don't forget that other illnesses (such as arthritis, MS and cancer) are also heterogeneous.
    Heterogeneity doesn't make those illnesses unreal or a meme.

    'ME' describes a cohort of patients whose symptoms fit a certain pattern.
    'ME' criteria are a diagnostic tool.
    Some consistent biomedical abnormalities have been detected in these patients.
    I think it's deeply unhelpful to describe the diagnosis as a 'meme', simply because the cause or causes of the illness or illnesses are not yet known.

    In a nutshell, ME has distinct symptoms, including post-exertional symptomatic exacerbation.
    And it's very clear to anyone with any insight that ME is an organic illness.
    How could it be anything else?
    People who want to make it more complicated than that nearly always seem to have a personal motivation for doing so.



    This is very loose talk without any evidence to back it up.

    If a patient has psychosis, then that's the diagnosis that they should have.
    If a patient has CFS or ME, then that's the diagnosis that they should have.

    But I'd like to know how you, or anyone else, can identify that a patient - who complains of persistent feelings of exhaustion - doesn't experience those feelings?

    If you are referring to CFS patients who respond to psychological therapies, don't forget that CBT is ineffective at improving objectively measured physical disability in ME/CFS patients. So that ends that discussion.

    But subjectively responding to psychological therapies can indicate many things...



    Sorry to be rude but this all seems like rather amateur philosophising.
    And you are conflating two issues:
    1. CFS patients responding to psychological treatments and
    2. Patient making up symptoms.

    If a patient responds to a psychological treatment it does not automatically mean that they've made up their symptoms.
    There may be a myriad of reasons why people subjectively respond to e.g. CBT or the Lightning Process.

    For example:
    1. CFS is hugely heterogeneous, and is often wrongly used as a diagnosis for persistent 'fatigue'.
    2. Patients with primary depression can be misdiagnosed as having CFS.
    3. Many CFS patients are misdiagnosed.
    4. Patients with a mixture of fatigue-related symptoms and psychological symptoms may respond well to psychological therapies.
    5. CBT and Lightning Process teach people to ignore their symptoms. LP particularly trains the patient to ignore all symptoms and to believe that they are well.

    etc etc etc.

    Dont forget that ME/CFS patients do not respond to CBT in terms of objectively measured physical disability.




    You clearly haven't read the literature.
    The control group for the two-day CPET test were sedentary healthy individuals.

    Moderator Note -- for more posts related to CPET see here.
    Last edited by a moderator: Jun 24, 2014
  8. alex3619

    alex3619 Senior Member

    Messages:
    7,184
    Likes:
    11,248
    Logan, Queensland, Australia
    I am aware you think you are not extolling the virtues of psychobabble .... except that I think you are unaware that you are extolling the virtues of psychobabble, just not with respect to ME. I will get back to that.

    Such a hypothetical falls into the psychogenic fallacy. Its fallacious, period.

    Just because someone thinks they have ME, and may be mistaken, and may seek out a diagnosis, does not mean they do not have an organic disease. That assumption is the psychogenic fallacy. They may have a different organic disease. They may have a different brain disorder. Whatever that is might be self limiting and so resolve on its own. Then someone doing whatever treatment they are on may mistake that treatment for a cure for ME.

    All this misses the most obvious issue. Post viral fatigue is about an order of magnitude more common than ME. It resolves on its own, slowly. It is considered that very very few have it take five years to recover, most recover in six months to a year. These patients routinely get diagnosed with CFS now, which is over-diagnosis or misdiagnosis. Doctors see this all the time. Currently I am of the view that this is a huge problem, that when doctors conflate post viral fatigue with ME they are primed to start inventing reasons why patients don't get better, or even get worse.

    The only disease I consider undoubtedly a thought disorder at this point is aberrant beliefs from things like cult brainwashing. People are indoctrinated into following a circumscribed way of thought. All others I consider, currently, based on current evidence, to be organic brain disorders, for which thoughts and emotions are contributing inputs into brain dysfunction, but not a cause. Mind is to me a convenient simplified description of brain function.

    Fighting over ME versus CFS is not helpful at this point, but not for the reasons described here. We simply do not know, in reality, what ME is. We know pieces of the puzzle. We also know that huge numbers of CFS patients are misdiagnosed, and this ranges all the way up to over 70% in Ireland. We need definitive biomarkers. Further, arguing that the WHO ICD classification shows that ME is not universally considered psychiatric is fine. Arguing it proves ME is organic is wrong though ... its just a bureaucratic code, and doctors know this. Its argument by authority, another fallacy.

    Two can play this game of hypotheticals. Its a construct that can be manipulated to say what you want it to say.

    1) Suppose that thousands of people had an organic illness and thought it might be MS. Suppose further that 90% were mistaken. So doctors failed to confirm a diagnosis of MS.
    2) Imagine a group of doctors, unable to pin a diagnosis on these patients, but concerned that they needed help in a world in which patients without a diagnosis get ignored and further investigation and treatment is not funded.
    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. (This is the case a lot of the time. MS is often confused with ME, and vice versa. Some cases clearly have one or the other, and other cases are in between. ME also has brain lesions that show up on scans, and similar symptoms.)
    4) Further, those well meaning doctors then started arguing that medical diagnosis requires objective evidence. They argue for the science with those who want to operate in medicine and ignore the science.
    5) And further these well meaning doctors were unable to get grants for subgroup studies because funding agencies and reviewers didn't want to see subgroups due to preconceived notions of what ME and CFS are.

    On this point in particular, I again want to point out its probably the psychogenic fallacy, depending on what you mean by delusional. There is no simple way to show they are delusional. They might indeed be mistaken. That is NOT the same thing. People get stuff wrong all the time. Its the human condition in a world of vast to endless complexity.

    Massively heterogeneous cohorts do indeed create problems when you analyze them as one group. No common factors can possibly be found. This is misdiagnosis, and its rampant. Much of the current research is now CCC ME/CFS, and now they are finding striking and common abnormalities. It is Oxford in particular, and operationalized Fukuda, that produce weak or ambiguous results.

    Agreed.

    First, please show me studies that demonstrate a 2 day CPET problem with bedbound or astronaut patients. I have not seen one. They have clear ONE day problems. I am not aware they have two day testing drops in capacity.

    Second, IT DOES NOT MATTER. One of the reasons that the 2 day CPET is not currently being called diagnostic is that it needs further research, in particular to nail down the specificity and sensitivity. Many patients who have this test and show a clear drop in capacity are not, in any case, bedbound. So how does this get explained?. Further, the test clearly shows a marked and dramatic crash in energy, and ongoing research is showing it cannot be reconditioned. This failure to recondition does not apply to bedbound patients nor astronauts.

    Let me assert again, the 2 day CPET clearly shows, in over 95% of strictly defined ME/CFS patients, a massive and possibly unique crash in energy. It shows a clear and unambiguous failure in energy production, which is physically measurable. On issues of whether someone is really sick, or faking, or has a psychological illness instead, this clearly shows an organic basis. Insurance companies pay out on claims in which a patient has had this test, at least anecdotally (given that confidentiality clauses nearly always apply we are not going to hear more than that). That's a real world consequence.

    Moderator Note -- for more posts related to CPET see here.
    Last edited by a moderator: Jun 24, 2014
    Cheshire, Valentijn, Mij and 4 others like this.
  9. Bob

    Bob

    Messages:
    8,052
    Likes:
    10,316
    England, UK
    Sorry, this is all utter nonsense. You can't base your knowledge of ME/CFS on your attendance of a Lightning Process session. If a patient has been wrongly diagnosed, then that doesn't reflect on the illness itself.

    I don't remember any such research by Jason. Would you like to provide a reference?
    If you are referring to patients with primary depression being wrongly diagnosed with CFS, then I don't think it's helpful to bandy around words like 'delusional'.



    It seems to me that in amongst your text, you might have made a good point, but any good points are lost in amongst the poor arguments and poor use of words.

    Sure, a CFS diagnosis is probably widely used inappropriately by clinicians, and we know that roughly 50% of patients are wrongly diagnosed with CFS.

    But 'CFS' clearly defines a set of symptoms whereby a patient suffers from prolonged physical fatigue, etc. It's as simple as that. (It's unfortunate that some have attempted to define CFS as a functional disorder with no strong evidence to back up this hypothesis.)

    Work has been done to try to better define cohorts beyond the vague symptom of fatigue.

    'ME' has distinct symptoms that enable a narrower cohort of patients to be defined.
    Last edited: Jun 21, 2014
    vli, Valentijn, Sean and 3 others like this.
  10. alex3619

    alex3619 Senior Member

    Messages:
    7,184
    Likes:
    11,248
    Logan, Queensland, Australia
    http://forums.phoenixrising.me/inde...a-meme-18-june-2014.30944/page-11#post-474736

    @Jonathan Edwards , you summed it up very nicely.

    One of the things that psychogenic proponents like to claim is that we are against psychiatry, stigmatize people with mental disorders, and are afraid to be treated by a psychiatrist. None of this is usually the case. More and more of us are anti-psychogenic psychiatry, and we are not alone. Many academics, scientists, doctors, psychologists and even psychiatrists agree with us. So do many other patients with many other disorders.
  11. zzz

    zzz Senior Member

    Messages:
    188
    Likes:
    450
    Oregon
    No, but I think in this case we're clearly talking about some mentally ill doctors. Really, these people are clearly delusional and have succeeded in getting their views adopted in the larger community through sheer force of will.

    Now I want to make it clear here that I'm not making a diagnosis, but it has long been known that intelligent sociopaths are some of the most dangerous people in the world. Virtually all of the world's dictators fall into this class. These people are very smart about how the minds of others work; they just have no empathy or caring about others. As a result, they are very good at manipulating others to achieve their goals, even projecting a false empathy because they know that will be useful for them.

    As for the makeup of ME/CFS patients, let's get some science in here. The October, 2011 issue of The Journal of Internal Medicine had a review of the ICC (which is going to come as a surprise to my doctor, who is an internist and who rejected the ICC out of hand). As this is a mainstream, peer-reviewed journal, it is taken quite seriously by doctors. In the section entitled "Criteria are supported by research", there is the following sentence:
    The implication here is that the remaining 52% of patients had some symptoms of ME, but not all. (Some of them may just have been tired.) These would be considered misdiagnoses. There is no indication in this paper nor anywhere else that I have seen "that there are a huge number of people out there who honestly think that have ME to the point of making up the symptoms". I personally have met a lot of people with ME, and have not met a single one who was making up symptoms. If this discussion is going to go forward on a sound basis, we need meaningful citations - not just empty assertions.
    justy, Cheshire, Valentijn and 4 others like this.
  12. alex3619

    alex3619 Senior Member

    Messages:
    7,184
    Likes:
    11,248
    Logan, Queensland, Australia
    One thing that I think is important regarding doctor's belief systems around functional disorders, is that its not technically a delusion. It is however a problem, irrational, and definitely based on a dysfunctional belief system. If they were to entertain the notion that psychosomatic issues are a research topic, and left it at that aside from research, with no clinical application, then the moral, ethical and scientific issues would be minimal. When they treat it as substantiated science, and force such treatments on unwilling patients, its another story entirely. I think this should be made criminal.

    That "review" is actually the ICC paper itself, which is classed as a review by the journal.
    vli, Valentijn, Bob and 2 others like this.
  13. zzz

    zzz Senior Member

    Messages:
    188
    Likes:
    450
    Oregon
    I agree completely.
    Sean and Min like this.
  14. Isabelle

    Isabelle

    Messages:
    23
    Likes:
    71
    My sister took me to the doctor once, because I was in a bad way. We had been in the consult room for about 30 seconds before I thought, ‘Uh, oh.’ The doctor said that patients with ME/CFS were all (note all, not most or even 50%) hypochondriacs, who just needed to learn to ignore their symptoms. After the initial shock, we just looked at each other and started to laugh. I am known in my family for being a little reluctant to go to the doctor. I once had three broken ribs and for a week I kept saying, “No it’s probably just a pulled muscle. No problem. It’ll be fine.’ It was a bit like the knight from Monty Python that declares, ‘It’s just a flesh wound,’ as his limbs are hacked off. We were still laughing as we left the reception. But the less funny part of that is that I got no help.

    Ideas can be powerful. The ideas expressed in the responses are dangerous, because they have the potential to have a negative impact on patient care. I think the real point here is that looking at patients with contempt - any patient - is never going to be either appropriate, or medical best practice.
  15. alex3619

    alex3619 Senior Member

    Messages:
    7,184
    Likes:
    11,248
    Logan, Queensland, Australia
    @Isabelle, I had a broken finger once that I ignored for some days, even trying to work as a data entry operator, without using that finger. It was because it interfered with work that I went to a doctor and had an x-ray.

    I do understand how some people have health anxiety. I do understand that for some people this can become a major issue. I can even understand why some doctors might extrapolate anxiety to all patients, and over-interpret what they see. However its also the case that anyone who has a serious illness and is not getting proper care would be anxious. If this goes on for years and even decades, then not only would it be understandable they are anxious, but they it would be appropriate in many if not most cases. A doctor who makes those kind of claims is displaying overt prejudice, and should be reported.
    justy, Cheshire and Valentijn like this.
  16. Esther12

    Esther12 Senior Member

    Messages:
    5,262
    Likes:
    5,445
    I've not been able to totally keep up with this thread, but I just wanted to say:

    So the evidence is some old forum posts in which people who'd gone on a course telling them that they should think they have no illness post that 'I have no illness'? That doesn't seem like great evidence for anything.

    I was mainly posting here because I ended up reading this paper from 2002 which is open access and makes similar points to the RR (but they do a better job at phrasing it in a way which could let them escape responsibility):

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1314288/

    Roy S likes this.
  17. Isabelle

    Isabelle

    Messages:
    23
    Likes:
    71
    Hi Alex


    I don’t blame the individual doctor. I blame a climate that allows such irrational thoughts and beliefs to persist and flourish. Just want to make it clear - I'm referring to the doctor's irrational thoughts and beliefs, that led him to behave like such a jerk.
    Last edited: Jun 22, 2014
    alex3619, ukxmrv and Min like this.
  18. zzz

    zzz Senior Member

    Messages:
    188
    Likes:
    450
    Oregon
    If you check the PubMed reference to the article quoted above by Esther12, you will find links to two letters strongly disagreeing with the article, both from 2002. I found the second one, by Dr. Pall, to be the most pointed and concise. (References omitted to save space.)
    And yet, as we know, rational arguments such as this one did not put a stop to the nonsense masquerading as science. A similar article from just last year, entitled What do patients with medically unexplained physical symptoms (MUPS) think? A qualitative study appeared just last year in the journal Mental Health in Family Medicine. (You can easily guess what it says without even reading it.) Again, it does not occur to the authors that, as Dr. Pall noted above,
    There are scads of these articles, and virtually all of them seem to be published in British medical journals. We seem to come full circle to the concept of meme, where anything not understood by the mainstream British medical community is psychogenic.
    alex3619, vli, NK17 and 6 others like this.
  19. Cheshire

    Cheshire Senior Member

    Messages:
    135
    Likes:
    338
    France
    Even for that, there is, IMO, a strong physical component. In order to make this brainwashing efficient, people are starved, deprived of sleep. Some are even given strong cocktails of vitamins (I think it’s in scientology, but sorry can’t find the reference) that make them sick. Their whole biological imbalance is disturbed.
  20. alex3619

    alex3619 Senior Member

    Messages:
    7,184
    Likes:
    11,248
    Logan, Queensland, Australia
    Of course, and the thought patterns are instantiated in the brain structure. However its a disorder of thoughts, not underlying brain defects.
    SOC and Mij like this.

See more popular forum discussions.

Share This Page