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Wessely honoured with a knighthood for his work for GWS and ME

Discussion in 'General ME/CFS News' started by Countrygirl, Dec 29, 2012.

  1. user9876

    user9876 Senior Member

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    They would have to explicitly state that in the policy which isn't the case with current policies. I suspect that they would also have to make it clear to people (in the UK) buying the policy that they are doing this.
     
  2. Valentijn

    Valentijn Activity Level: 3

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    The problem with this is that there are many physical aspects of ME/CFS that can be treated (and not with CBT/GET). Inflammation, pain, sleeping problems, orthostatic intolerance, gut issues, etc etc. But often times figuring out how to treat those requires investigations beyond the basic, as well as referrals, and drugs or supplements. Yet if one of the "experts" is heeded (and he often is), those investigations should be avoided - not because they'll necessarily turn up negative, but rather:
    Speaking from purely personal experience, a test detecting one of these "minor and irrelevant abnormalities", combined with information from someone on this forum, gave me an excellent idea of how to treat my OI symptoms. As a result, I am much more functional now, especially mentally, and it has had a substantial impact on my quality of life.

    I think the justification that "it can't be fixed" is overly simplistic and fatalistic, and ultimately is just another method to keep GPs and patients in the dark about the organic dysfunctions that can be objectively observed in ME/CFS patients.
     
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  3. Holmsey

    Holmsey Senior Member

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    Yep, they do, they're called exclusions. Onus is on the purchaser to read the fine print and understand what they're buying. In fairness it's more common to limit the payment than entirely exclude, but my point is both options are available so IC's don't need to argue that something is other than it is, they can limit their exposure proactively.
     
  4. Holmsey

    Holmsey Senior Member

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    I know where you're comming from on this, I've been pretty luck it seems, my GP is willing to follow up on my symptoms and by so doing ignore SW's advice. Just did another set of RA bloods before Christmas but both my GP and I expect they'll show nothing, but as he says, better to keep rulling it out than to miss it.

    But again like you I've made most progress by pursuing the illness myself, and I agree taking the 'can't be fixed' option is never right, the point I'm trying to make I guess is that IC's are businesses, their aim is to make profit, they don't need to be dishonest to do that (although I'm sure it helps) but where the powers that be won't or can't do anything they're going to follow that option. We need to drive the 'powers that be' agenda, after that all the other ills willl sort themselves.
     
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  5. Hip

    Hip Senior Member

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    Have you got a reference for that please, Wildcat? (Such as the name of the meddling mInister in question, and any transcribed text excepts from the hijacked parliamentary debate). It seems outrageous that an ME/CFS debate was hijacked in this way. I might even write to the minister concerned, and ask him why he did it.
     
  6. SilverbladeTE

    SilverbladeTE Senior Member

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    Somewhere near Glasgow, Scotland
    "Vietnam War Syndrome"
    yes there was
    Agent Orange (and other physical harms)
    and huge number of troops who commited suicide in the field (but weren't reported as such) or afterwards (psyhcologial)

    the government etc simply did not want to know...so it didn't happen.
    Torture, atrocities and just sheer horrific screw ups were far more commonplace than the Public were ever lead ot believe in Vietnam. read really horrendous account of grizzly torture that was almost endemic to one group/area of allied forces in Vietnam, ick, that stuff messes people up so it's simply not worth doing if for no other reason than it results in your own folk losing their minds/fragging themselves.

    Wessely was behind a study from Afghanistan claiming that PTSD wasn't a big issue but booze was, which flies in the face of reporting of those who've been there
    organized but episodic violence is bad enough at causing PTSD etc, but they are trained to deal with it so that helps (ie when you cna shoot back it isn't as bad, andit occurs only once in rare while it's not so bad on the nerves),
    what is extremely damaging for the psyche is the way they cannot predict/fight back against the booby traps/sniping that leaves them on edge far too much of the time.
     
  7. Holmsey

    Holmsey Senior Member

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    Absolutely, that's kind of my point, the psycological pressures for Vietnam seem to outstrip all other recent conflicts, and then to be branded baby killers rather than being cheered on your return, rejected by government because you 'technically' lost. Yet despite all this there's no equivelent of GWS from that conflict, which Wesseley implies only occured for GW1 not GW2.
    Human frailty was present in all three conflicts, GW1 was by any measure 'easier' mentally, it was time limited, you were seen to have done a good job and a good thing, you liberated a nation and beat up on the bad guy. Yet, Wesseley appears to imlply that Psycological intervertion, proactive preperation is the difference, or is that just what his Knighthood implies.

    Common sense would seem to suggest that Psycology has nothing to do with GWS if GWS is unique to GW1.
     
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  8. orion

    orion Senior Member

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    I totally agree. In many ways the treatment of GWS sufferers has been even more scandalous than the treatment we've received.

    As an aside, when you first joined this forum, I was dismayed at how naive you appeared to be regarding Simon Wessely. It's refreshing to note that you now appear to be far more sceptical about both the man's character and his work.
     
  9. natasa778

    natasa778 Senior Member

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    Absolutely. But as we know common sense is the missing component in SW's 'investigations' not to mention 'conclusions'.
     
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  10. Firestormm

    Firestormm Guest

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    What kind of investigations are people suggesting might not be included or paid for by insurance policies that people with ME are supposed to need though? A blood test or tests (I have had plenty in 15 years) is not something excluded by the NHS nor are investigations warranted by symptom presentation and patient testimony.

    The NICE Guideline might indicate specific tests to include for a diagnosis to be helped to be made - but it doesn't tell doctors 'You must not do anything else for these people!' Similarly, whilst there is (I am aware) some concern expressed by people like myself with a chronic illness about getting health insurance i.e. when they have a chronic condition diagnosed - this is no different to anyone else or any diagnosis.

    What I believe some people have reported is trying to get their insurance to pay out for 'tests' and 'treatments' that are not approved or recommended by one's GP and/or 'conventional' Specialist. I have yet (and would be happy to see some evidence please from anyone) to see that any clause exists in a policy that prevent people with ME getting anything.

    Am talking about the UK here and not overseas although one of my own policies was used before and after being diagnosed 'abroad'. Generally speaking, if a doctor recommends an investigation then health insurance would be used to 'jump the queue' that is the NHS or State. If the doctor feels such a procedure is warranted, then chances are good the policy will pay for it privately.

    To my knowledge (and yeah I am old-er and may well be fairly accused of being out of touch) the only conditions that attract specific clauses are I think AIDS and other terminal ones e.g. some forms of cancer. But it does - as you have mentioned - depend totally on the type of policy. Indeed to exclude on the basis of a condition could be deemed discriminatory i.e. to say ME gets no cover when a person has a policy.

    Another limitation might be on the amount in monetary terms or number of claims made across a period of time. I have seen many concerns raised over obtained life assurance with a diagnosis of ME - but again - premiums will be adjusted perhaps but ME will not be excluded as a rule.

    And then of course we have health-related employment protection insurance. Another potential minefield but one that cannot exclude a condition such as ME but might only pay-out for a limited period.

    There was some talk I think of people being asked to participate in recommended treatments e.g. CBT and GET etc. in order to ascertain the extent of their disability and it's likely duration - but that was in relation to a few instances of mortgage protection insurance pay-outs.

    Am recalling some specific examples where prognosis was a factor before mortgages were paid off completely. Now those instances were hard-fought hard-won battles...

    Let me know if anything I have said is pants, Holms, I don't have the knowledge of this specialised area as you do.

    Thanks :)
     
  11. barbc56

    barbc56 Senior Member

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  12. orion

    orion Senior Member

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    Hi Valentijn, can you expand on this a bit. I also suffer from OI symptoms and the only treatments that I know of are drugs such as midodrine which my GP refuses to prescribe, and which I haven't (yet) been able to purchase on the internet.
     
  13. cigana

    cigana Senior Member

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  14. Bob

    Bob

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    I don't think that Wessely has stated that GWS is a mental disorder, has he?
    He's learnt enough from CFS not to make such an explicit assertion.
    (My memory is not working tonight, so I might have forgotten something.)

    My understanding is that he has asserted that GWS is not a discrete illness, nor a set of well-defined symptoms, and that GWS is unexplained, and that investigations need to be carried out to find out why some patients recover from GWS-like symptoms, and some don't. The implication is that there are perpetuating factors. (Notice the identical approach that he has to CFS?)

    This thread has been an eye-opener to me. I hadn't quite realised the full extent of his approach to CFS, but his approach to GWS has made me see things more clearly.

    It's very clever, and very depressing.

    Ignore well-defined descriptions of the illness, or well-defined sets of diagnostic criteria, based on careful observations by clinicians, in order to ignore the actual illness that should be investigated.
    Investigate an entirely different illnesses with symptoms that vaguely overlap the originally defined illness.
    Focus only on the overlapping symptoms.
    Give illness with the overlapping symptoms the same name as the originally well-defined illness.
    Conflate the two different illnesses, and mix up both sets of patients.
    Use selective outcomes, from the conflated groups of patients, to describe outcomes for all the patients.
    Use these outcomes to paint a picture of the original illness that does not resemble the original illness.

    This goes back to our discussions re diagnostic criteria.
    If well-defined, selective, diagnostic criteria, based on legitimate and careful clinical observations, are ignored because there's 'not enough evidence' for them, then the most pointless all-inclusive criteria (that ignore the actual symptoms, patients, and illness) can continue to be used, and no progress will be made.
    At the very least, well-defined, selective, sets of criteria should be rigorously investigated in research, in order to test them for usefulness, and in order to try to make progress in research.
    If they are not tested, it's a wasted opportunity. They can easily be tested alongside the usual CFS criteria.
    Diagnostic criteria for ME have not just been plucked out of thin air, but are based on clinical observations, and they deserve to be tested.


    Edit: This post is not aimed specifically at you, Barb. I just used your comment as a starting point.
     
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  15. alex3619

    alex3619 Senior Member

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    Its not just about common sense. To promote or believe many of the claims made by most with views similar to Simon W. requires embracing logical fallacies. Almost the entirety of psychosomatic medicine is based on layers of logical fallacies. As tentative and unproven hypotheses that are purely for research and not clinical use these ideas might have validity. As explorative treatments for refractory cases, with full patient consent and understanding, there is also some justification. To push for vast social change and widespread use is something else entirely.

    If such unproven and hypothetical treatments can be forced on patients through various coercive means, and this is acceptable, then why is the GMC and other medical governing bodies around the world taking a hard line with many doctors who treat ME and CFS? Evidence exists for a lot of their treatments, its just that there has not been enough research funding and interest for large scale double blinded RCTs. Its also the case that subgroups respond differently, and with current understanding a doctor often does not know for sure who will respond and who wont. The only way is to carefully test the treatment. How is this different from many drugs? How many drugs does a doctor have to test on a patient to find one that works properly for more common medical conditions? In my case the record is seven.
     
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  16. alex3619

    alex3619 Senior Member

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    Bob in post 194, many of the points you made here are what prompted me to start writing my book. We see these things but it needs to be carefully documented and analyzed.

    Broad all-inclusive definitions have little validity: they are wastebasket definitions. The only justification that they can use is that these fit somatization or similar diagnoses - but these in turn are not valid disease entities.

    Many of the more specific definitions are not proven. They do however offer opportunity for research use and testing. Ignoring them or dismissing them does indeed lead us right back to wastebasket definitions. We need scientific investigation, not assertions by "researchers" to make progress - that is the case for all of them.
     
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  17. Ember

    Ember Senior Member

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    The King's College London group didn't use a test-retest protocol for their sick Gulf veterans. Although their findings related to physical exercise (Section 1) indicate damage to mitochondria in the muscle cells, they also suggest deconditioning as the possible cause:
    Like their neuorological findings, their neuropsychological findings are disappointing. In their reporting, they link subjective complaints to psychological distress/depression (cf. CFS):
     
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  18. alex3619

    alex3619 Senior Member

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    Ask the wrong question - determine the course of investigation. Do the wrong tests. Imply that the negative results from wrong tests in the wrong framework means nothing can be found. Further imply that this might mean a psychosomatic disorder is at play, and never mention the lack of evidence for that. Is this medicine? Its definitely not scientific.

    For example, if you start from the position that no cause or causes can be found for MUS and that therefore we need to look to psychosomatic causation is asking the wrong question. Was that true for diabetes, peptic ulcers, rheumatoid arthritis, MS? If you further mention that there is no information on sustaining or perpetuating factors, you are setting up a rhetorical argument for behavioural or belief perpetuation. You are determining the framework in which the question is being asked.

    Medicine started out with almost everything being MUS. As the science evolved the old ill-formed theories died (bleeding therapy, miasma etc.) and diseases were removed from the MUS category.

    Medically unexplained symptoms and syndromes are probably mostly diseases that simply are not explained yet. There is also an important distinction between medically unexplained syndomes as in causes, and medically unexplained symptoms. Most of the symptoms of CFS for example have medical explanations based on biochemistry, neurology, cardiology or immunology.

    The history of psychosomatic medicine is mostly one of making broad sweeping claims then fighting a rearguard action to halt or deny the progress of science. This even applied to neurasthenia. It certainly applied to diseases like MS.

    They are losing the battle on the science for ME, CFS, IBS, FM, MCS, GWS and others. They are losing justification for an entire field of psychiatry. They are losing justification in the eyes of medicine. The BPS movement is supposed to revive all this, but its being pursued not primarily on the basis of science but of politics. Their successes are political, not scientific. BPS started with a good idea but it went horribly awry almost from the beginning.
     
  19. Ember

    Ember Senior Member

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    Which of the definitions is "proven?"
     
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  20. barbc56

    barbc56 Senior Member

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    What do we want him to do, make up the criteria for GWS? I just don't see how what he says about GWS is really be compared to me/cfs.

    I would think and this is just a guess that maybe this is a type of symptomsseen after many wars but maybe exacerbated by possible chemical exposure?

    Barb C.:>)
     

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