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ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
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Severe ME/CFS could be called Pervasive refusal syndrome

Discussion in 'General ME/CFS Discussion' started by taniaaust1, Feb 13, 2014.

  1. vamah

    vamah Senior Member

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    I think that's exactly what they are trying to do. As a patient, it pisses me off. As a mom, it scares the shit out of me. I don't know if they are going back too long-discredited Freudian crap, or this is part of the idea that all parents are idiots and the government cares more about your children than you do. But it is evil, any way you look at it.
    Izola, Roy S, Valentijn and 3 others like this.
  2. SilverbladeTE

    SilverbladeTE Senior Member

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    Ean Proctor's case, hm?
    People do not realize how extremely nasty UK/USA governments have got behind closed doors at higher levels
    *fascism*, all about control, corruption to corporations banks insurance companies etc
    The Soviet Uinion post Stalin couldn't murder folk willy-nilly anymore, so its dissidents were made out to be insane and locked in psychiatric hospitals (fact)
    same crap

    US/UK have become what the fought!

    yeah they sewed the Emperor's new clothes and thus all couldn't dare say it never existed for it would bring their shabby con trick down on their heads, but one day, it would rain or snow upon the emperor, or the voices of mockery would grow too loud and their goose would be cooked.... :p

    [​IMG]
    Izola, Min, Countrygirl and 1 other person like this.
  3. Antares in NYC

    Antares in NYC Senior Member

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    I couldn't repeat the string of expletives that I uttered after reading the description of PRS. They just won't stop. These people seem vested in turning certain conditions into "mental illness".

    The part that takes the cake is the following:
    Translation: ok, so research is starting to show pathogens are likely a factor in this syndrome. It's just a "theory", so whatever, they are crazy, it's all in their heads, we should commit them to a psych ward. Can I have my knighthood now?

    It is stunning to me that they would even incorporate the actual viral nature of the illness, only to dismiss it in the next line and brand patients as mentally ill.

    If they had dared publish this paper renaming another viral disease like hepatitis, HIV, or herpes, and offering 12 months of commitment in a psych ward as the "cure", mobs would be chasing them with pitchforks and torches.

    I'm tired of being abused by the system. The tide needs to turn.

    Ps: what the friggitty frack is "fatal mothering"?
    Izola, Min, Valentijn and 5 others like this.
  4. taniaaust1

    taniaaust1 Senior Member

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    Yeah that is what got to me too.. just how they worded it.. really played down the viral aspect of it by their next lines. This play down looks so perfectionally done by someone!!! I dare say this was done by an expert at this kind of thing. I'd love to know the real name behind who is behind the way this is written (I wasnt so tired today I'd go throu the history of that wiki page to try to see if the ones who did this wikipedia page.. are nics who's behind the bullshit ME/CFS wikipage? wouldnt it be interesting if any of the same nics are involved)

    I bet that a lot of those who are said to so be well at some point after the 12mths are actually faking they are well for a brief time, pushing themselves severely just for a good show, just so they can get out of the hospital!! Their parents then would lay very low with these very sick children once they excape the hospital, never trying to claim carer benefits or child disability benefits as they know their child would just be locked up again!!!.

    These children when adults wouldnt be able to claim disability pensions without possibly getting locked away again or feeling they they would be putting themselves under the threat of being so.... they'd be too scared to apply no matter how much they needed it (where would that lead.. suicide??). Who benefits from this by making out the physically sick isnt physically sick? insurance, governments? Something big and dark lays behind this.
    Izola, Min, PennyIA and 1 other person like this.
  5. Antares in NYC

    Antares in NYC Senior Member

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    I think that's the right question to answer any human societal mystery: Cui Bono, Latin for "who benefits?" Insurance companies? Governments? Individual entities?

    Some people or group are benefiting from keeping ME/CFS ignored, discriminated, not funded, not researched, and patients told they are crazy and pumped full of antidepressants, told to shut up. Even worse, in the uk or certain European countries you can be taken away committed to a mental hospital. Basically like MS patients 100 years ago.

    What the heck is this? This is some sort of medical apartheid that has gone long enough, decades. I'm glad I saw the fierce response of the CFS community as a whole during the IOM hearings. We need to keep momentum and fight this injustice.
    Izola, Min and peggy-sue like this.
  6. Joss

    Joss

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    Hi,

    I'm new to this forum but have been around on others for years and some of you may know me from elsewhere.

    CG - I am absolutely horrified by what you have written. I wonder how widespread the practice is?
    Do you think your friend might put this in writing in some way that, while not identifying them, would act as proof that it is happening?
    Please message me if you want to.
    Izola and peggy-sue like this.
  7. Countrygirl

    Countrygirl Senior Member

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    Hello Joss,

    My friend did intend to make this public, but I am sorry to say she has become seriously ill and is in no position to do this now.

    I know she was regularly summoned to attend 'in service training' to instruct her how to write reports that satisfied her employer, the DWP.In other words, in a way that enabled them to withdraw/refuse benefits.

    Only one or two doctors would be at each session. It was a huge waste of time and energy to be sent many miles to attend an instruction session and a huge insult to doctors who had been practising for decades. My friend continued to write accurate reports. She was then dismissed on a technicality.

    You may be interested to know that I received an anonymous phone call from an assessor for the DWP. ( I am a national contact for people with ME.) She told me that she was very uncomfortable to be verbally instructed by her supervisor to ensure that people with a diagnosis of ME did not qualify for benefits. She told me she felt terrible about this as she could see how sick they were, but she needed her job. It was not put in writing so we cannot prove it. It is a disgrace!

    C.G.
  8. Joss

    Joss

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    Thanks for replying.

    I am sorry to hear about your friend.

    I wonder how we can get proof that this is happening?
    Izola and peggy-sue like this.
  9. Izola

    Izola Senior Member

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  10. Izola

    Izola Senior Member

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    Sparrow:


    They have made the term "evidence base" mean not any evidence except maybe a little by accident. Iz
    Min likes this.
  11. peggy-sue

    peggy-sue

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    Hiya, Joss!:angel::hug::angel:
  12. Izola

    Izola Senior Member

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    ;)Sparrow: :) You're a lovely bird. :balloons: Thank you for all the points you make. Iz :balloons::thumbsup:
  13. Izola

    Izola Senior Member

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    It is so sad and you are so right. Iz
    I keep delaying. but must sleep.
    SilverbladeTE likes this.
  14. leela

    leela Slow But Hopeful

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    "fatal mothering"
    "refrigerator mothers"

    *blink*

    freud still blames the mommies and their ugly horrible vaginas he can't stop thinking about.
    Izola, Cheshire and SilverbladeTE like this.
  15. peggy-sue

    peggy-sue

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    He had a lot of psychological problems, did Freud.;) Complete misogynist, totally screwed up and a product of his time.
    Let's not forget the cocaine addiction either, all cosy with his male "doctor" chums, encouraging each other with their silly notions.

    The only decent idea he had was that medicine should be put to scientific scrutiny, and become a scientific process.
    Then he comes up with a load of anti-female bollox that cannot be tested or proven scientifically... :bang-head:
    And this garbage is merely being renamed.
    It doesn't matter if you call it hysterical conversion disorder, or pervasive refusal syndrome. It's the same rubbish.

    What about the psychs' pervasive refusal to recognise that properly published, peer-reviewed scientific papers even exist?
    (I mean real science, the kind that looks at molecules of things, not cognitive "science" or christian "science" or social "science".)

    It has struck me recently that none of the psych lot, (who claim that ME doesn't exist, basically because it isn't already a known disease) could possibly know very much about evolution. Maybe they don't believe in it!

    They are creationists of a sort, I suppose. :rolleyes:

    Disease evolves faster than anything else.
  16. SilverbladeTE

    SilverbladeTE Senior Member

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    Peggy-Sue
    well, they prove Darwin right: they are the missing link!

    Homo Twatgoblinus! :D

    *SIlverblade sits down, hidden, near the Twatgoblins in their natural habitat, ala David Attenborough*

    "And here we are, in the august halls of the Arkham Asylum, as the Homo Twatgoblini file in....
    yes we have an impressive troop here, including the elder dominant male, whom we call "Cackweasel"

    [​IMG]

    And now, they begin their ritualized mating call, you can hear them cry out "CBTTTTTTTTTTTTT" and other such strange cries.
    However, other denizens of the jungle respond..."


    "Waaahnker!"
    "Bohhhhhlaaaaaacks!"
    "Knobbbbbbb Strutterrrrr!"


    :p
    Last edited: Feb 27, 2014
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  17. leela

    leela Slow But Hopeful

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    Aahh @SilverbladeTE , you're always good for a larf, even under the worst circumstances! :rofl:
    thank you.
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  18. SilverbladeTE

    SilverbladeTE Senior Member

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    Somewhere near Glasgow, Scotland
    Leela,
    *bows with a theatrical flourish* ;)
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  19. leela

    leela Slow But Hopeful

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    *curtsies humbly* :love:
  20. redaxe

    redaxe

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    This appears to get worse, a quick search led me to this.....

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2762526/

    Kate,1 a highly intelligent, 11-year-old Caucasian prepubertal female, was referred to our academic medical psychiatric unit for children by a local paediatrician for a second opinion. She had a 6-month history of increasing unexplainable somatic complaints, starting with acute fatigue, a sore throat and a headache. The symptoms developed into an inability to walk, nausea, eating problems, joint pains, diplopia, dizziness and urinary frequency, resulting in progressive social withdrawal. Kate stayed in all day, did not go to school and became disinterested. Medical history was unremarkable, while psychiatric history revealed perfectionist and overachieving personality features and a history of tantrums at the age of 7.

    The acute onset suggested a stressful event prior to the start of her complaints. Parent and child only described a troubled relationship with one particular teacher, who taught her for 2.5 consecutive years, shouted at her and, at times, openly ignored her. Changing school did not relieve the symptoms but was associated with a deterioration. Physical or sexual abuse was explicitly denied. The family history was irrelevant, although an enmeshed mother–child relationship was noted.

    During the admission, which was primarily diagnostically focused and further characterized by an attitude of gentle encouragement and tender loving care, Kate’s condition deteriorated. Her immobility increased to the point that she stayed in bed all day and could only crawl. She refused solid food, resulting in a weight loss of 3 kg. Kate increasingly complained about headaches and feeling cold. The situation eventually led to her lying in bed with a coat on and covered with approximately ten folded bed sheets. She yawned every 30 s and crawled to the toilet every couple of minutes. This behaviour made a very forced and theatrical impression. Her complaints seemed to fluctuate, particularly worsening when parents or medical/nursery staff were present. From informal remarks made by her room-mates and their visitors, we learned that Kate could walk and talk normally when we or her parents were not present.

    Whereas Kate underwent the medical investigations passively, she actively refused to cooperate with any of the psychological or psychiatric investigations and any attempts made by others to stimulate her. She constantly asked to be left alone when someone entered the room. If her request to leave was not directly obeyed, she turned away, began to whine and no longer responded to questions, impeding any further attempts at conversation. When we gently tried to motivate her, she became aggressive.

    Despite many somatic multidisciplinary investigations, no organic cause of her complaints could be traced. Laboratory investigations of blood, urine and faeces showed no abnormalities. There were no serological markers associated with beta-haemolytic streptococcus group A infection (GABHS), ruling out PANDAS (paediatric auto-immune neuropsychiatric disorders associated with streptococcal infections). An MRI of the brain showed no abnormalities. A provocation test to exclude a central hypothermia syndrome showed no drop in core body temperature, thereby ruling out hypothermia.

    Given the severity, deteriorating and disabling character of her disorder, with a GAF (global assessment of functioning) score of 21–30, we were forced to transfer Kate to a child psychiatric hospital for what we expected might become a long-term inpatient rehabilitation programme.

    However, after 3 months of patient and gentle rehabilitation, a spontaneous and nearly complete recovery occurred. There remained some fatigue, but it soon disappeared. Kate returned to high school on a full-time basis and outpatient follow-up was discontinued by both her and her parents.


    Ok so they find no abnormalities in the tests they performed yet the only test that comes close to suggesting CFS/ME is Myhill's mitochondria function test. Nor did they do a tilt-table test to check for orthostatic intolerance.

    This behaviour made a very forced and theatrical impression
    Well did they consider that the patient may have refused food and was crawling because of extreme orthostatic hypotension & feeling severe malaise from a disrupted neuroendocrine system caused by an autoimmune inflammatory response....

    When we gently tried to motivate her, she became aggressive.
    I'm not surprised

    Food refusal is often seen in PRS, but in general the refusal is neither particularly focused on nor exclusive to food [11]. It is motivated by a desperate need to refuse and not by a desire to lose weight. A diagnosis of eating disorder is therefore not applicable. Selective mutism and school refusal refer to a specific area of functioning, while the refusal seen in PRS is far more pervasive. Chronic fatigue is common in PRS, but by no means the most central feature.

    So apparently, in the mind of the shrink community loss of appetite with CFS/ME is caused by a desperate need to refuse food

    Children with chronic fatigue syndrome show very few of the other symptoms of PRS and are frustrated with their ill-health and have a strong wish to recover [11], in contrast to children with PRS.

    They obviously know nothing about CFS. Yes many CFS patients are rightly frustrated with their health and wish to recover. But as I'm sure that anyone who has suffered from CFS for any extended period of time will know that it is a real struggle to keep up morale & desire to recover, especially for a bed-bound sufferer.

    and this

    Because PRS is such a severe condition, hospitalization, ideally in a child and adolescent psychiatric unit, is almost always required. Thompson and Nunn [24] described one treated outpatient. It can be argued that this outpatient treatment was successful. Although Thompson and Nunn described symptom-free periods, there were still periodic relapses of short-lived episodes of depressive symptoms or anorexia. In our opinion, inpatient treatment is therefore necessary (see Table 4).

    So basically the so-called shrinks insist that hospitalising a patient should be a standard treatment for a patients recovery yet the case study showed that the patient's health resolved overtime regardless of their 'treatment'. Also they offer not one shred of evidence that their intervention actually helped the patient.

    Well sounds to me like the fox is well and truly in charge of the hen house.
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