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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

    Mercer Island Wa
    @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.:)
    Izola, alex3619, merylg and 2 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.
    Cheshire likes 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
    Cheshire likes this.
  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.

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