Surprisingly good outcomes for people who get ME/CFS after Mononucleosis (Glandular Fever)
Sometimes ME/CFS emerges after mononucleosis, or glandular fever. Simon McGrath shares results from a long-term follow-up study from Haukeland University Hospital in Norway...
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New GP Guidelines for Chronic Fatigue Syndrome

Discussion in 'General ME/CFS News' started by LaurieM, Jul 13, 2011.

  1. LaurieM

    LaurieM

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    I apologise if this has already been posted elsewhere but I found it amazing that we in the UK are being forced further back in time by our GPs.

    http://www.meassociation.org.uk/?p=6959

    It could explain why when I saw my GP last week, he, for the first time in the 6 years I have suffered from this disease, told me I ought to see a psychiatrist, and actually told me I had a personality disorder (even though he is not qualified to make such an assumption).

    I put a lot of scientific facts to him, which he totally ignored. If anything I think that I wasn't the one in the room with the personality disorder - if 'Denial' can be referred to as such.

    When are they going to get it? :worried:

    Laurence :In bed:
     
  2. justy

    justy Senior Member

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    Beggars belief thats all ican be bothered to say.
     
  3. max

    max *****

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    I'm neither stunned nor amazed - what else can we expect? It is a long time since I held any respect for a GP or NHS/NICE/DWP/MRC etc employee.

    Until Mrs Wessely is removed from her position, advice to GP's will remain the same. Those that appoint these individuals have no concept of a 'conflict of interest'.



    max:(
     
  4. Enid

    Enid Senior Member

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    Can't get it right can they - but interestingly a few more tests than I ever had. Until they name it correctly - ME - they just might eventually learn about the real thing.
     
  5. orion

    orion Senior Member

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    It does indeed beggar belief. However, it's not really relevant to me as I've completely disengaged from the healthcare system. I do my own research and if I come across a promising drug that I can afford, I order it with my own money over the internet.

    It's been literally years since I last saw my GP (or any other doctor for that matter). Last time I went I was refused the treatment I requested even though I volunteered to pay for it myself. So I haven't been back since.
     
  6. Mark

    Mark Acting CEO

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    Disgusting.

    Yes indeed, I keep asking myself the same question. Who the hell are these people?...
    Here we go...right from the off, the politics, spin, disinformation..."known colloquially in the UK"...PAH! So: CFS and ME are simply the same thing, then, eh? And "ME" is a "colloquial" name, "CFS" is the "real" name, presumably?

    And we are invited to believe that this kind of spin is not deliberate misinformation and obfuscation...

    I'm angry already...

    So...I think we can safely assume that the entire document is lies, lies, lies from start to finish then? Nice guidelines and the old "evidence-based" swindle...and, well of course, GPs are so "well-placed to make an early diagnosis of CFS"...I mean, everybody knows the truth of that, right? And of course they are just full of helpful advice to manage fatigue...how on earth do they come up with this stuff?

    Well now, let's get straight in there with "people with mental health problems" eh? Set the scene...

    And we're now talking about "chronic fatigue" and "tired all the time"...remembering that "CFS" is the real name and "ME" is just a "colloquial" name...so we are (apparently) talking about ME here too...

    Talking therapy, (unspecified) medication and self-help...hurrah!

    GP curriculum requires this scandalous behaviour:
    "Describe the need to check for psychological illness while avoiding the habit of checking extensively for physical illness"

    Criminal.

    This stuff just leaves me speechless.

    "Instead of conserving energy on good days, people tend to overdo things".

    It's their own behaviour that's to blame, of course...

    Note "complaints" and "perception". Very important to emphasise that the patients merely perceive that they suffer frequent infections and temperature disturbance...not to accept that we actually do....

    That just about covers everybody then, doesn't it? It may start gradually or at a specific point in time, it may be mild, moderate, severe or very severe...and the bedbound often "feel" unable to leave the house...please don't validate the feelings of these people...
    What causes CFS?

    Much truth here. "Even medical professionals may negatively stereotype people with CFS". Wow, yes, even medical professionals! Indeed, even the authors of guideline documents for GPs may negatively stereotype people with CFS...

    Let's quote White. No mention of which definition of CFS was used in his study. No mention of diagnostic criteria here at all, in fact. No attempt to sub-categorise the condition of CFS (known "colloquially" as ME). It's all the same dustbin, of course...

    "Familial aggregation has also been noted in CFS although it is unclear what contribution comes from hereditary as opposed to environmental factors."

    And of couse in the absence of any research, it will remain unclear...

    Silly old WHO eh? Classifying it as neurological even though there's "no evidence" that it is. Who wrote this crap, the three wise monkeys?

    List includes plenty of factors blaming the patient - denial, disorganisation, over-exertion, boom-and-bust, lifestyle, high standards (yeah, I guess the authors of a document like this would have a problem with high standards!). Surprisingly, though, "Vaccination" is accepted as a "Precipitating" factor!!!! OK then: lets use what they put in. These people agree that vaccination can be a precipitating factor for CFS. Their words, not mine...

    But what's missing from this list? Toxins, chemical poisoning, toxic mold exposure, perhaps?...

    Hmm...yes, if you keep broadening the diagnostic criteria, that will tend to affect the prevalence...

    Seems a reasonably accurate sentence...although hold on, earlier on, we heard simply that fatigue was the only defining characteristic...and we heard nothing yet, still, about diagnostic criteria...what about these "additional features"?...

    Now this is interesting...

    Note that "CFS" now disproportionately affects "ethnic minority groups and people of lower educational and occupational status". Gone are the days when it was a "yuppie flu" disease affecting white middle class women! Now it affects mainly the opposite profile! And the evidence for this? "One US-based telephone survey". And note also that a recent UK study that found that "CF/CFS" affects about 10 times as many people as previously thought (so long as you use the loosest imaginable criteria) also emphasised these same groups.

    There is a very clear agenda here to redefine "CFS" and pull in more ethnic minorities and socially disadvantaged people. This latest agenda needs watching very closely, because it is clearly a key part of the strategy going forward as to how the "CFS" label is to be used...and the implications of this are extremely disturbing...

    Neurological signs, weight loss, sleep apnoea, lymphadenopathy...all of them to be evidence for excluding a CFS diagnosis? OK, so is this just about redefining CFS to exclude all the characteristic signs? But remember: "ME" is the "colloquial" name for CFS...yet its defining symptoms are all "red flags" suggesting CFS diagnosis may not be appropriate...perhaps the aim is to kick the genuine "ME/CFS" out of the diagnosis while broadening the criteria to define a new group of people...while the true "ME/CFS" can remain in a "medically unexplained" limbo?...

    Hmm...yes it would be nice to be taken seriously...and this is not bad advice, on the face of it...

    And yes, listening to the "beliefs about their symptoms" sounds nice too, eh? But I shudder to think what that Royal College of Psychiatrists National Mental Health Development Unit document has to say about managing the medically unexplained...but would I be surprised to learn that it emphasises the importance of pretending to patients that you're taking their beliefs seriously? No I would not...

    An interesting list of tests that should be done there, I guess we've all had most of those and got nowhere...some of these are perhaps worth doing if we haven't had them, but more likely that's just a list of tests that can be guaranteed not to show anything, because the next list is far more interesting: tests that GPs should avoid!!!

    I think I understand this document well enough now to know that if they want GPs to avoid these tests, then this is a good list of tests that we want!

    Well at least they are advising against vigorous activity! That's something, I guess. And Action for ME are recommended...well...

    Well thanks for referring us to social services and doing everything possible to keep us in work and education...hmm...I think that may be helpful...

    Now that could be a useful list...there is always some good to be found in any document I guess...

    The general sleep advice seems to beg the question really; all good advice but surely we're doing all this already and still struggling? Trying to aim for fixed sleeping/waking times seems like a complete dead loss and a depressingly unachievable goal to me...but then I've only been at this for 16 years now...

    It's nice to see the APT advice in there, though...that's good to see in spite of the PACE Trial's shenanigans...

    Another list of treatments with "insufficient evidence"...and thus, another good list of treatments well worth looking into...

    Here we go...yes...of course they have the "strongest evidence" base because for the last 25 years they have been the exclusive focus of research and that research has been twisted and manipulated shamelessly...and everything else has been ignored...and of course the "beneficial effect" of CBT and GET is minimal at best...and the fact that "some" patients have "suggested" that they may be harmful is still not insignificant...

    Fantastic. Well: that's some of the best advice yet. If you have a setback or relapse, due to infection or excessive stress, then you will be encourage to carry on with whatever activity and exercise you were able to do before...that is really amazing advice that. And yes, it is indeed doubtful that patients will ever benefit from specialist input...so don't waste any more money on them when their suffering worsens, please...

    What??!!!

    Things seem to be improving, eh?

    There's evidence that we are less dissatisfied with the quality of medical care? Really?

    Well, OK, I would say that my GP is supportive.

    He has absolutely no idea what to do, and he feels very bad about it, and he's profoundly ignorant about the condition (thanks to documents like this one), but he's a good chap, and he's very supportive. So what...is the improvement that GPs are less damaging in their behaviour than previously? I guess that may be true...

    Key responses:
    * Yes it certainly can: well spotted!
    * No they most certainly are not - are you kidding me?
    * Do some bloody research on the things that work then, and stop debunking them.
    * Liar liar pants on fire.

    Very interesting!

    So it is the three wise monkeys!

    And they're just down the road...might have to pay these chaps a visit one of these days...
     
  7. alex3619

    alex3619 Senior Member

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    Hi, if I were living in the UK, I think I would mostly take Mark's advice and for most of what they told me think the opposite. I enjoyed your analysis Mark. How can such willful ignorance exist in a caring society? I feel sorry for you guys, and in case you are not aware of it, advocates the entire world over are behind you in the fight. At least there are signs now that several countries in Europe are dubious, and one has rejected CBT/GET for now, maybe this will become a trend and the UK policy will be revealed for what it is. Bye, Alex
     
  8. Esther12

    Esther12 Senior Member

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    I always think this whenever I see poor CFS research that seems to over-emphasise some role for perfectionism. Personally, I've always been a lazy botcher... but even with my low standards, I wouldn't want my name associated with most of the psychosocial CFS research about.

    Also, for the perpetuating factors... there's no mention of any possibility of biological abnormalities, even though genetic factors are mentioned as predisposing. Stress is mentioned for predisposing and perpetuating, but it seems that genetic factors, once they've played their role in triggering the illness, are assumed to magically disappear. What wonderful news - how encouraging for us to have them lie about the extent to which the perpetuating factors of our illness are under our control - aren't they kindly?
     
  9. gregf

    gregf Senior Member

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    These "doctors" have CIDS.

    (from Wikipedia 2018 edition).

    Chronic Illness Denial Syndrome. It was quite common in psychiatrists particularly
    in the denial of ME. They develop obsessive behaviour, continuously writing papers that deny the existence of an illness. They even organised entire conferences around the subject so it becomes a form of mass hysteria. It seems to be a form of personality disorder or even the result of childhood sexual abuse.

    The most famous example is where they made up a whole new name for an illness : Chronic Fatigue Syndrome.

    CIDS is best treated with Cognitive Behaviour Therapy and Graded exercise Therapy.

    CFS was finally discredited in 2012 when the XMRV retrovirus was shown to be the cause of ME.

    Greg.
     
  10. viota

    viota

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    you know what my doctor told me today? that it was just a bit of tiredness and it will go away if i exercise.......words cannot describe how angry i am.I have tried exercising but it does not help. it just makes me crash.Im in ireland.
     
  11. Francelle

    Francelle Senior Member

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    "All this makes CFS a difficult condition to categorise. Although there is no evidence that CFS is a neurological condition, the World Health Organisation (WHO) has categorised it as neurological (G93.3)."

    All I can say then is, "you doctors have been very remiss in finding my true diagnosis - so hop to it, pull your finger out and delve into your textbooks to find what causes my constellation of neurological signs & symptoms. It's got to be in there".
     
  12. Francelle

    Francelle Senior Member

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    Has anyone had a look at the website that they recommend patients visit, apart from Action for ME? "Another useful Website to tell patients about is www.neurosymptoms.org.

    It just looks like a brainwashing website to me. What I have looked at so far is quite unbelievable! Am I wrong - I know it's very late here and my perceptions could be a bit off?
     
  13. alex3619

    alex3619 Senior Member

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    Hi Francelle, I only looked at the neurosymptoms site briefly, under fatigue it simply refers to the UK position. Its not a very informative or in-depth site. Bye, Alex
     
  14. Enid

    Enid Senior Member

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    Medical establishment here in the UK are in a "denial" syndrome and far too grand to absorb the research and findings of international scientists and learn about the real thing (now increasingly understood and treated elsewhere). We know more than they from following and by necessity. How can InnoAIT claim to be "promoting excellence". To read Chronic Fatigue Syndrome (CFS) "known colloquially in the UK as ME" is astounding and revealing.
     
  15. SilverbladeTE

    SilverbladeTE Senior Member

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    And folk wonder how the Nazis managed to get physicians to EAGERLY exterminate nearly a million disabled people...look no further!
    Murder by Bureacracy.

    http://en.wikipedia.org/wiki/Doctors'_Trial
    History will repeat iself, those who signed this UK evil bullshit should face similar justice and retribution.
     
  16. justinreilly

    justinreilly Stop the P2P! Adopt "ME" & CCC!

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    It is insane the extremely low standards and tolerance for outright lies that exist for physician guidelines and peer-reviewed journal articles on ME! And the Lombardi study gets attacked for non-existant or minor problems. The bias is sickening.

    This author Prof. Christopher Ward is a Wessely lover. He put an entire chapter, titled simply "Chronic Fatigue", on ME authored by Wessely and Chalder in his Handbook of Neurological Rehabilitation. There are many of the typical Wessely gems to be found here such as "In fact [ME] was neither new nor an encephalomyelitis...We now recognize that ME was an inappropriate label and it has been replaced by the term CFS, a label that is short and accurate."

    http://books.google.com/books?id=wn...#v=onepage&q=Chronic Fatigue Syndrome&f=false
     
  17. Enid

    Enid Senior Member

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    Reminds me of the ongoing Murdoch fiasco - going to fight his corner to the bitter end.
     
  18. SilverbladeTE

    SilverbladeTE Senior Member

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    Fight it until 17+ million people have died needless deaths because they are such bigots, greedy and power crazed.
     
  19. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    In the 'they say its in the mind' section they say no its an altered brain state just like hypnotism is a brain state and then when u go to the treatment section they mention bloody exercise, what!! Having a stroke is an altered brain state, came on i know u cant feel anything down the left side of your body or talk to me but get up and exercise as it will fix everything up all better.
    A kiss on the forehead from mum would work alot better.
     
  20. Esther12

    Esther12 Senior Member

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    Hmmm... couldn't every human experience can be described as an altered brain state. I googled 'altered brain state' to check what it meant, the first result: Hypnosis is not an altered brain state?

    It seems like it's just another meaningless/misleading/comforting term.
     

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