A New Decade of ME Research: The 11th Invest in ME International ME Conference 2016
Mark Berry presents the first in a series of articles on the 11th Invest in ME International ME Conference in London ...
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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. Tired of being sick

    Tired of being sick Senior Member

    Western PA USA
    Ant NYC

    Nothing a wrong with facing the truth

    in fact the TRUTH is the only way to make

    progress in this fight for our very lives

    Soon as a Dr. ignores our cries and FACTS

    it is time to move on.......

    I am now convinced that the only way to

    send CFS/ME into "remission" is through antibiotic treatment period....

    So the next step is to find a Dr. who is willing to prescribe antibiotics...

    If Dr. is unwilling, well then he is of no use to us....

    All other meds for CFS/ME symptoms are exactly that

    They only make our life sentence of pure Hell just a little more tolerable

    Comfortably numb so to speak.

    Why I Prescribe Antibiotics to Patients with Chronic Fatigue ...
    Antares in NYC, rosie26 and merylg like this.
  2. alex3619

    alex3619 Senior Member

    Logan, Queensland, Australia
    To rework one of my blogs:

    [Satire] Wez be doctors. Wez be realz smartz. Wez neva wong. So its alwas demz silly pashents. I don unnerstan, den send em to the nut doctor. [End Satire]

    A lot of medicine is becoming a modernized form of the triage model. Patient in, patient out. Only do more for those obviously dying. (I am of course exaggerating to make a point.) This is being pushed by bean counters in government and insurance companies. What they miss is that this model fails to deal with the complex cases except for minor palliative care. Hence things do not get adequate treatment. So instead of a patient being dealt with in a few long appointments with a bunch of tests, they have to go back and back and back over years and years. The total cost blows out then, but its the underlying model that is fubar.

    Sending patients on to a psychiatrist or giving them prozac without good cause is an equivalent to passing the buck. Patient dealt with, next patient.
    ahimsa, merylg, chipmunk1 and 3 others like this.
  3. Ecoclimber

    Ecoclimber Senior Member

    @kermit frogsquire
    Do you really think that Dr. Wessely with all of his titles, awards and nobility status would admit to his mistake on the Oxford criteria? He would have to stoop down to being just mere mortal...pun intended. It's not about science, it's about politics and multinational health-medical-disability corporations that direct the research funding and the direction of health policy in the UK.

    Do you really believe that Dr. Wessly has the psychological profile/character to lay aside his beliefs and really listen to actual .science? A narcisstic paranoia with delusions of grandeur personality would say otherwise.

    I suggest that you slog your way through the exchange between Lady Mar and Wessely in this thread to find out the slyness of Dr. Wessely and his ilk http://forums.phoenixrising.me/index.php?threads/lady-mar-writes-to-prof-wessely.20750/ We did 'the try to reason with Wessely approach' awhile back. It didn't work

    Please tell me how a clinical psychologist can acquire all of the symptoms as stated in the CCC in a relatively short period of time 2-3 weeks after a post viral infection. Do you know of any psychological treatment or process that can cause these symptoms to manifest? The person I know is an expert in CBT and GET, but is unable to progress utilizing any of these programs that is suppose to help him. If the experts can't make it happen, well then you got a problem.

    I'm wondering in just 2-3 weeks, whether you can change your temperature to 97.4 on a continuous basis, change your body homeostasis, flip your circadian rythyms, cause pain throughout your body which includes every joint and muscle, lose all comprehension of vocabulary and grammar, experience 'not the being tired, nor fatigue label' but the complete bone crushing exhaustion or lack of complete energy, etc? How long would it take to train someone to accomplish even one of these symptoms, days, weeks, years. Show me the research that this is even feasible to accomplish. Show me the research that can bring these patients back within the same time frame as when they acquired them. Seems like some heavy duty meditation and talk therapy. It should be rather simple if it was just a meme and all they had to do was stop believing in their false illness belief.

    I would like to know how they acquired the skills in the first place to put themselves in an ME meme state of mind...I hear somewhere Billy Joel tickling the piano on that last phrase.:)
    taniaaust1, Izola, alex3619 and 3 others like this.
  4. alex3619

    alex3619 Senior Member

    Logan, Queensland, Australia
    If ME is all in the mind, then we are magicians .... call us MEgicians. Truly accomplished at mind over matter! Miracle workers ... though a dark miracle to be sure. ;) For my next two tricks I am going to walk on water and grow two new arms ... I have wanted two extra arms since reading about four armed aliens in science fiction as a kid.
    Adlyfrost likes this.
  5. Adlyfrost

    Adlyfrost Senior Member

    I have to laugh at the title of this post. Where are all these people getting diagnosed with CFS/ME???? My GP's wanted to slap a depression diagnosis on me. I was under the impression most of us have to fight for the diagnosis, for whatever its worth at this point.

    I don't need an arrogant #$%hole doctor to tell me a have a chronic virus. When I was in bed for years with a flu that wouldn't go away, I knew.
    chipmunk1 likes this.
  6. stevesayshi


    Well, quite a few people are helped by d-ribose :p
    (OK I was a little late on the punchline here)
  7. MeSci

    MeSci ME/CFS since 1995; activity level 6?

    Cornwall, UK
    Here's a direct link to 'The Legend of Cameford'.

    Note this paragraph:

    Now where have I heard that kind of thing before, and what illness was he describing...?
    Scarecrow likes this.
  8. Freddd

    Freddd Senior Member

    Salt Lake City
    This is so 19th century! I know lots of docs with mid 20th century memes. I hadn't recognized the 19th century ones I ran into in 1992. I was told that I was completely "unrealistic" in expecting to receive effective treatment for severe chronic pain The discussion with the doctor rarely got beyond the severe chronic pain which they considered as imaginary as CFS/FMS. They all start out "what is you number 1 problem".. I had already given up on finding knowledgeable treatment for mystery disease These ideas about "Its All In Your Head "(IAIYH) causation of ME/CFS/FMS type disorders go way back.. Stocking/glove anesthesia (neuropathies) were taken as evidence of conversion disorder. Hopefully we know a whole lot better since all the b vitamins were discovered after that. Stocking/glove neuropathies are typical of B12 deficiency neuropathies.

    This would be funny it if were not so tragic. These pseudo science memes these doctors or psychiatrists are operating from warp their thinking. I admit that there is a lot of language assault and battery that goes on here with brutally poor logic and massively overloaded words at times in the discussion of ME/CFS and lots of ideas driven by desperation of this disease that destroys lives, but not understanding ME/CFS/FMS or logic doesn't make people delusional or psychotic. And with deficiencies of a number of vitamins in the brains can cause multitudes of sleep disorders, neuropsyc symptoms, mood and personality changes, paranoia, hallucinations, and "the most florid psychosis known to man" with damages accumulating over the years. I think we are all aware of how dangerous the doctor's memes can be to us as it is the institutional blindness in their memes at many levels of the system that have created these illnesses.
    PhoenixDown and Cheshire like this.
  9. Cheshire

    Cheshire Senior Member

    I'm afraid stocking/glove anesthesia are still considered as signs of hysteria... Here is just one example, but I've seen them depicted that way again and again.


    Essentials of Understanding Abnormal Behavior
    David Sue,Derald Wing Sue,Diane Sue,Stanley Sue
    2014 reedition...

    It is still widespread in psychiatry/psychology textbooks. Sadly, I could multiply the examples.
  10. Freddd

    Freddd Senior Member

    Salt Lake City

    Hi Cheshire,

    I hate to admit it but I was a psychology major in school and read all of that. I also studied comparative and physiological psychology. I guess they haven't heard that peripheral neuropathies advance from distally towards the spine typically. For instance I can currently feel my "stocking anesthesia" numbness from neuropathy) is very sharply discernible and it advances and retreats somewhat depending upon specific circumstances and some non specific ones. When it reaches pantyhose style I can't feel where my legs are and fall. It reached that point 6 years ago and had some incontinence as well until I found the right dose of MeCbl to allow better functionality and the retreat of the neuropathies to shoe top level. Right now its ankle socks. And I have had no CFS/FMS/ME symptoms and partly rehabilitated since 7 years ago with more recovery continuing. What relapses periodically is the damaged nerves with Subacute Combined Degeneration due to various causes of partial methylation block.

    Medical textbooks still being published in the 1950s argued that pain should not be relieved so that a person can "better know the suffering of Christ on the cross to be better prepared for death". I was tortured by lack of effective treatment for life destroying pain for decades because of the memes the doctors were operating under.

    Some years after the crash and a couple of MDs told me "The pain in your back makes no physiological sense. So it's all in your head". This was after being t-boned by a truck. I had 3 fractured vertebras, 2 lopsided flattened disks, a dozen or so bulging disks, damaged dorsal horns from hyper extension. The pain specialist doctor I was speaking with said of the "No physiological sense therefore IAIYH" was absolute ignorant nonsense. I had the pain that is clearly attributable to damaged dorsal horns along with muscle atrophy on the affected nerves. By that time I had already been accepted into a pain clinic and was receiving effective pain management for what they knew to be very real pain. It took me 3 years after getting adequate pain relief to finish solving the CFS/FMS I had for several decades, and incidentally it turned out, the version of congestive heart failure I had. It was just in time as I was 12 years into CHF and I was losing the ability to focus my eyes to be able to read.

    Part of my acceptance into the pain clinic was based on an MMPI 2, normed on chronic pain patients. There are several special normings, such as for those with some illnesses and occupations like fire and police. I came out quite normal psychologically.

    So I was also denied treatment because the pain "does not correspond to the distribution of nerve pathways". In the illustration of glove anesthesia above the feeling, or lack thereof, does correspond to distal placement which is how peripheral neuropathies progress, from more distal to less distal.

    As long as the docs operate from these memes they are incapable of understanding or curing this disease. These memes are poisonous. They disable the physicians from being able to be competent physicians for people that fit their memes. That is exactly what I have seen in working on this mystery disease since 1978. "There are none so blind as those who will not see".

    I really have gotten out of touch with this end of things. I thought "blame the patient" went out of style more than 10 years ago when these became "acceptable" diagnoses. No wonder I get so much pushback when I claim being healed and recovered and rehabilitated of FMS/CFS. I'm still improving in some ways though aging has caught up with me. I can also select a subgroup that can predictably respond to Deadlock Quartet and have a chance for anything from some improvement to essentially cured. It takes a lot of work maintained for years to heal from a long-term illness. However, some people can regain their physical capabilities. I don't believe in faith healing under whatever names that leave people without regaining capabilities who say they "feel better".

    I can easily demonstrate that selected people can start healing. It takes years longer to see how far they can go with it. And if somebody is willing to pay for such a study, I would be pleased to consult and design it so it will be a success, selecting likely responsive people, reaching specified targets and following predicted pathways and meeting various criteria along the way.
    Last edited: Aug 17, 2014
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  11. Griffin


    London, UK

    I believe we have all been cursed by a wicked witch casting spells on us.

    Makes as much sense.

    Sorry for your pain.
  12. Freddd

    Freddd Senior Member

    Salt Lake City
    Hi Griffen,

    The wicked witch is this case is the AMA curse in the 50s declared war on b12 saying approximately that giving people B12 because it made them feel better is like giving them heroin to make them feel better. They persecuted docs who gave too many such injections without the testing with the "hard" deficiency limits to justify it. It also protected the insurance industry from paying for B12 because fewer than 1% qualified under their harsh definitions.
  13. Freddd

    Freddd Senior Member

    Salt Lake City
    I was a psychology major and am almost ashamed to admit it here.

    Look. I will offer a challenge to any organization or physician or psychiatrist or committee. I have a questionnaire that can make this otherwise apparently very difficult diagnosis and then I can demonstrate the correctness with a trial protocol. I'm not here to argue about causes because that comes out as turtles, turtles, turtles all the way down until you get to genes, and nobody really knows the specific ones, which tends to blind physicians into thinking it is IAIYH since every hypothesis to date is always at least approximately wrong and don't produce the results that a correct hypothesis would have.

    Just as no fakers were ever found pretending to have MS and I would expect about the same results with CFS/ME/FMS sufferers.

    Why does CFS/ME/FMS cause so many delusions in practitioners and researchers? Why can't they give up on hysteria, conversion disorder, yuppie flu, "lying alcoholic, and "imaginary woman's disease". As every official hypothesis about this 21st Century Mystery Disease has been wrong why don't they give up on all the junk hypotheses and start over. I have to say that as problem solvers they stink.

    The psychiatrists and physicians can't even recognize methylfolate deficiency much less paradoxical folate deficiency in multiple forms. It took a psychiatrist 10 years of psychosis for my mother before one of them said "Aha! B12 deficiency psychosis and CyCbl worked. She was off psyc drugs in days and in a halfway house out of the locked floors in the psyc hospital in weeks. I had over 100 physicians fail to diagnose a very obvious B12 deficiency in me. They could all see it when I walked in the door. Every one of them rejected it by test results and vitamin pill history. If they are incapable of diagnosing a b12 deficiency that was near to killing me how can they be expected to diagnose something ever so more complicated. Not one trusted his/her own opinion of something obvious visually over tests that were normed on a chronically deficient population and dramatically misinterpreted.

    I can give them a hypothesis that can account for every case I've seen except those that clearly have something else not related, and those are obviously not the same. It's a complicated system with a lot of variables, but it is describable. It's partly all those little things that doctors ignore for decades and throw out from consideration.

    In 1992 while having a totally disabling case of CFS/FMS and chronic pain, I went and interviewed a doctor who was the head of some chronic pain multidisciplinary credentialing organization. I had driven 2 hours to interview this guy, was in terrible pain with a gruesome headache and drugged to the max. We talked about the treatment of chronic pain. After we talked for more than an hour and he learned that I expected to receive effective treatment for chronic pain that nobody would provide, he basically asked me what world I was from and asked directly if I had been diagnosed as schizophrenic. He said that after 19 years of chronic pain at that time if I really believed that anybody would actually effectively treat me for pain I had to be delusional. I had been in the FDA phase 3 study for trans nasal butorphanol (Stadol) for 15mg daily for 6 months and I was effectively treated for pain. I knew it was possible. They could do it in a study but wouldn't outside a study. And I was considered "delusional" and "completely unrealistic" by this person. I guess that being given the same set of drugs 4 times in a row that didn't work the previous times wasn't enough of a clue. What I did do was start to interview the docs before I let them touch me to find out if they were honest. I asked up front if the would effectively treat chronic pain and here is what has and hasn't worked; after they had satisfied themselves that I had the problems represented. After interviewing docs for 11 years I finally got a referral to the despised pain clinic that prescribed appropriate opioids after the best exam I've ever had, which included 3 docs and 2 physical therapists, the MMPI 2 normed on chronic pain patients, hours with the pain psychologist and an hour interview with a PharmD.
    Last edited: Dec 2, 2014
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  14. Freddd

    Freddd Senior Member

    Salt Lake City
    QUOTE="kermit frogsquire, post: 477120, member: 980"]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.[/QUOTE]

    Hi Kermit Frogsquire,

    Some days it just isn't easy being green. I understand the questions and why they have been raised. I guess you don't understand how easy it would be to pick out the psychosomatic, the frauds, the fakers etc. in the situation of CFS, FMS, ME. It's not really much different than picking out provider fraud in health claims or the lying non-standard life insurance applicant except that it is easier. Basically one might say that they wouldn't be able to pass a modern variation of the Turing test in a questionnaire. I don’t care where they got their beliefs and memes. And then I can apply a completely different test, and this one randomized that is excellent for trapping fakes. However, it could take perhaps 2-3 hours of taking a computerized questionnaire or live interview.

    Or is that idea too far out for consideration, actually conducting a 2-3 hour interview? It sure doesn’t fit in to the 12 minute visit model. The other randomized test is done concurrently. The other thing one can do is line a group of 100 them up nude in order of how “healthy” they look based on a whole body look and how they walk around the room. But then what docs do a whole body visual these days? The majority of the genuinely sick will be totally obvious to anybody with decent vision. There wasn’t a doctor who saw me that couldn’t see that I was sick.
    The only reason they couldn’t diagnose me was that the tried to use testing using the usual tests to do so and the tests are wrongly interpreted. They are designed to deny treatment, the AMA declaration of the 50s or has the current crop of docs forgotten that? Do they even teach that? They were not alive and can’t remember it from their life. Here is a current version of that. http://www.kevinmd.com/blog/2013/02/fetish-vitamin-b12-shots.html

    It’s not that he isn’t correct about b12 tablets, he is. For most people they work about as well as injections. There are some tablets that are superior to most injections. A 1 mg tablet swallowed gets about 10-20mcg absorbed into the body, and for a healthy person, that is all that is needed. More does nothing and is not detectable by the person. A 1mg IM injection or 7.5mg SC injection will have an instantaneous blood serum cobalamin of 100,000 to 200,000 pg/ml and that is enough to penetrate the cerebral spinal fluid by diffusion.

    The level lasts a few minutes from a 1mg IM injection and the level from the SC injection stays that high for more than 8 hours. What people who are deficient of MeCbl and AdoCbl in the cerebral spinal fluid (CFS, FMS, MS, ALS, Parkinson’s, Supranuclear Palsy, Autism, Alzheimer’s, in addition to low cobalamin, elevated MMA and HCY) feel is not placebo effect at all. That is the AMA’s story going back to the 50s. Deficient people can reliably and repeatedly feel cerebral B12 onset in a double blinded situation.

    Right now the only problem is that the software for generating and recording the questionnaire is just in the design phase. However, the questionnaire part is easy enough and small enough. The more time consuming part is the design and implementation of the analysis of the data. However, that can be done in Excel for the most part “and little grey cells”, it just takes more brains-on time.

    Of course if a “treatment” of any kind works on one of these CSF/FMS/ME group it’s placebo of course, and they get well then it would be dismissed as just more evidence the whole thing was psychosomatic. Very nice, just like dunking a witch; if they survive the test they are guilty and executed. I started investigating my situation in 1978. What I found was very disturbing. I found that the entire understanding of this disease is warped by having false foundations supplied by researchers. It’s easy to ask the questions to determine if a doc can even possibly think about it correctly, that is with the facts about certain things in mind.

    I’ll even interview you, without my knowing who you are, and you can fake it and lie about it as well as you are capable, and I will probably pick out the fakery, or possibly not. You might be a good liar and know enough to fool me. Maybe you have 21st century mystery disease under one of many other names and not even realize it and you give me real symptoms. Then you wouldn’t be lying and faking, just flying under a variant name. In my analysis I don’t use words like CFS, FMS, ME and so on. I describe what I find by in other terms. There are lots of physical things to be found, just not the ones you and many others are looking for as there isn’t the correct understanding there to pick the right tests or interpret them properly.

    I can demonstrate what I have said. What number of people do you need to observe while in the process of recovering or reacting to cerebral onset of B12. Would ANY number be convincing to you? Somehow I doubt that there is anything that would convince you.

    However, as those “It’s All In Your Head” under all the versions and others; “secret alcoholic”, “too many symptoms to be believable”, “liar”, “conversion disorder”, delusional and other such things are certainly consistent enough that they make a good wrong diagnosis stand-in for a correct diagnosis. We know what they mean. So as long as docs keep screwing up consistently we can use it. It just confirms the diagnosis and points out the docs dangerous to our health so we can go somewhere else and be treated by docs who at least don’t despise us or whatever causes their aberrations.. It’s docs who want to prescribe major anti-psychotics as a sleeping aid because of all the sleep disorders who are dangerous. The polypharmacy sure does mess people up. Also it was expensive. I like being healthy much better.

    Holding on to 19th century memes, even dressed up in a new façade, does make the doctors look awfully ignorant or stupid to a lot of people. I had to interview nearly 100 doctors in order to find one who was willing to help me heal. So from your viewpoint, or at least the one you are supporting aggressively, my 11 year saga of healing and rehabilitating from CSF, FMS and congestive heart failure is what? It’s based on 35 years of journal reading, running trials, data mining the internet and debugging the problem. Yes, it is a different way of thinking. And I got results. I spent 30,000 hours solving my problem Maybe you could solve it too with 30,000 hours of effort and decades of A-B-A-B trials. It has been my full time as possible occupation for the last 12 years. There was nobody else willing to solve my problems. I couldn't have afforded me, or anybody else, at my usual consulting fees.

    So Kermit, let's hop on down to Hoppers for lunch and talk about it. Have fun.

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