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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. Firestormm

    Firestormm Guest

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    OK. I shall plead ignorance here. How does the ICD affect any medical decisions made in terms of my healthcare within the NHS or outside of the NHS if I had private insurance.

    Note: I had private insurance and had no problems at all with gaining investigations based on my diagnosis of ME or anything else.

    I am perfectly happy to be enlightened with some links if anyone has the time. Also the extent to which ME in the ICD and CFS in the ICD and PVFS in the ICD can influence my treatment i.e. what difference do the differing distinctions actually make.

    Thanks in advance and no I am not taking the piss. Am genuinely interested.
  2. alex3619

    alex3619 Senior Member

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    All good questions Firestormm. If I have the time I will expand on this, depending on how easy it is for me to find the information.

    In the meantime, let me add a few points. ICD codes are used by insurance companies. One big issue is there is a huge divide between insurance policy on easy to treat disorders, complex long term disorders, and mental disorders. Where an ICD code is matters for these purposes, as it partially determines the clauses that are invoked in a policy. This in turn means that what treatments are available can be different for different people under different policies. This happens all the time in the USA. If you have a fantastic policy, great. If not, too bad.

    In the UK the standard accepted practice for ME is to minimize investigations once diagnosis is made. Ditto for CFS.

    That doesn't mean that the system always fails. It doesn't. It just means that things are complicated, and multiple factors have to be taken into account. Nobody is in a position to properly analyze all this in the broad sense, not even government. That itself is a worry.

    Once we get the new DSM-V there will be similar political, social and health consequences as to how medical care is handled. It matters, its just not necessarily science.
  3. In Vitro Infidelium

    In Vitro Infidelium Guest

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    The UK honours system isn't based on objective 'merit' but on a much more tenuous notion of perceived merit - there's a current debate about the sports awards - ten gold medals in the paralympics doesn't get you an honour - 2 golds in able bodied sport does. So it's not like the Nobel Prizes where there are expert committees and (in science at least) some substantial contribution to science has to be demonstrable; Wessely is effectively being honoured for 'being there' irrespective of what might have actually been achieved. Time serving is a traditional qualification under the honours system and 'buggin's turn' was the primary process involved until an attempted reform some years ago. It's all still crap - but what can you expect in country that retains an hereditary monarchy ? (Julia Gillard for president !).

    IVI
  4. Bob

    Bob

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    I agree with IVI, here. It's not enough for us to rely on the WHO ICD-10 alone. The ICD-10 is not evidence in itself (it relies on evidence), and it does not provide us with certainty, as it could potentially be changed. We need to be able to cite top quality, and reliably repeated research evidence.
  5. Bob

    Bob

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    Indeed. That is my understanding of his interpretation, and research, as well.
    I think you have successfully highlighted the problems and weaknesses with his research.
  6. Bob

    Bob

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    When you say 'entitled', do you mean legally?
    Or do you mean in terms of research and medical ethics?
    I'm not certain that you are correct, in term of ethics.
    In terms of morality, you definitely are not correct.

    When investigating an illness or disease, I'm not sure that anyone is 'entitled' to ignore, distort, mis-identify, and mis-represent, an individual patient's illness, symptoms and their personal experience of their illness, by acknowledging only the single symptom one is interested in, and defining the parameters of the illness purely to suit one's own interests.

    If I was studying an ME patient, and I recorded the symptoms of that patient, I would not go on to say that they suffered only from simple and normal 'fatigue', and then lump the patient together with all other patients who suffered from unexplained 'fatigue', and then go on to say that the patient suffered from 'fatigue' only because they believed that they did, and then attempt to justify this misrepresentation by highlighting a small minority of fatigued patients that have been shown to respond to psychological therapies in some trials that used only self-reported outcomes to assess the therapies.

    I don't understand the use of the word 'entitlement' in this context.
    Shell, Roy S, currer and 2 others like this.
  7. Marco

    Marco Old blackguard

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    As you well know the heriditary monarch does not choose who receives an honour. Such choices are made by politicians, civil servants or nominated by other 'worthies' or by the general public.

    I doubt in practice that the Australian honours system differs much in this regard :

    http://en.wikipedia.org/wiki/Orders,_decorations,_and_medals_of_Australia

    Oz can keep Julia Gillard. I'd rather have an apolitical head of state thanks!
  8. Bob

    Bob

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    Firestormm, your last comment is exactly what Val said in her previous post, that you were responding to. Val said: "Questionnaires certainly have a place in research..."

    And Val has indeed critiqued the 'interpretation' of questionnaires:
    http://forums.phoenixrising.me/inde...-work-for-gws-and-me.21116/page-7#post-321689

    Val explained how psychiatric questionnaires could be interpreted inappropriately when assessing CFS/ME, and thus potentially be used to distort and misrepresent the disease.

    I don't think that anyone has argued that questionnaires should never be used. Val suggested that questionnaires "need to be used in a way that is sensitive to the characteristics of the disease."


    It is notable that the psychiatrists who ran the PACE Trial, relied (almost) entirely on questionnaires to measure outcomes, when they had the opportunity and funding to enable them to objectively measure physical disability, and to objectively measure changes in everyday function. They didn't even take the opportunity to correlate self-reported outcomes with objectively-measured disability, which would have been useful.

    Thus, they used 'biased' self-reported primary outcomes (which they acknowledged were biased, but then failed to make adjustments for, and failed to report with any caution), which did not reflect or correspond to the objectively-measured outcomes for physical disability.

    The objectively-measured outcomes completely destroyed their theories of illness, as CBT completely failed to improve outcomes, whatsoever, in the 6 minute walking distance test. I think we can safely say the same for GET, given that it was not a 'clinically useful' outcome, and a third of participants dropped out (I assume that they dropped out, because data and reasons were not given for a third of participants.) For such a high profile trial, it's surprising that no data, or explanation, was given for a third of participants who dropped out of the only objectively-measured outcome.
  9. In Vitro Infidelium

    In Vitro Infidelium Guest

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    Agreed. But if you use a political argument to advance a scientific or medical position, and conversely then use the same argued medical position to advance a political argument – you end up failing all round. The inherent inconsistencies make the position untenable in both political and scientific/medical contexts.
    Privatisation is certainly an issue, although I’d describe the current position as a step change in an ongoing conflict, rather than a wholly new departure.

    What is happening in the UK is (by design and demography) fragmented, with a distinctly more market driven process being foisted upon England compared to N.I, Scotland and Wales (which each have differing set ups). At this stage there is no evidence that ICD or the DSM would have precedence over NICE or other Governmentally agreed health policies in any NHS service – whether provided through private contract or direct funded provision. This does not mean that increased private contract provision is not damaging to the overall NHS structure but to date it does not allow private contractors to introduce alternate diagnostic approaches or shortened treatment programmes.

    I’m not clear how the ICD or DSM could impact on the process administered by ATOS (and other market entrants from 2013) which is not in anyway dependant upon illness classification – other than the definition of a few exceptional circumstances (terminal illness etc). Flawed as the disability assessment schemes are – they are not linked to illness classification but to notional evaluation of actual impairment regardless of cause. And all this is separate from health service delivery.

    ICD 11 and the DSMV are certainly important issues for M.E/CFS globally but, in terms of the challenges facing the UK NHS, M.E/CFS affected people probably need to be more concerned about achieving common purpose with other patients and patient groups, for whom the peculiarities of the ICD and DM are extraneous issues. Those pursing advocacy in England face some major challenges as of now, in having to negotiating the processes of a new Byzantine and contradictory structure that may alienate not just patients from doctors, but various parts of the NHS from each other. The ICD and DSM are likely to be somewhat academic issues in comparison.

    IVI
  10. Bob

    Bob

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    Marco, I think you might have misunderstood IVI's post.
    The point that he was making was that, whatever you think about having an unelected monarch as head of state, it is, by definition, undemocratic, and that the current awards system reflects that historic lack of democracy. They are both throw-backs to historic times, when democracy was not an issue.

    My understanding of the awards system is that recipients are selected by civil servants, and that there is not an independent body that evaluates merit.
    It's a system of cronies, by cronies, for cronies.
    For example, if you donate a large amount to a political party, then there is a very high chance that you will be rewarded with a seat in the House of Lords.
    Although it has changed somewhat, the House of Lords is a throw-back to undemocratic times, when the King's friends and allies would be awarded with Land and titles, and it is not democratically elected.

    (I hope that receiving a knighthood does not entitle Wessely to a seat in the House of Lords. Does anyone know?)
    currer likes this.
  11. In Vitro Infidelium

    In Vitro Infidelium Guest

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    "apolitical head of state" - contradiction in terms surely ? But hey if you want the Saxe Coburg Gothas, could we throw in Cameron and Osbourne along with hereditaries and you could set up a constitutional Anglettere dans France, and Britain could become a modern State and even possibly save its economy from austerity strangulation at the same time. :rolleyes: You actually missed the point about Gillard - it was a gentle dig at Oz for not yet having the courage to break away from Brittania's apron strings. And yes the monarch doesn't choose who get's honours - but the monarchy and the bankrupt system of honours, are symptoms of the same constitutional anaemia.

    IVI
  12. In Vitro Infidelium

    In Vitro Infidelium Guest

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    Historic moment Bob - we appear to have agreed on something !

    Re: Knighthoods and Parliament. Even before the Blair Goverment reforms, a Knighthood never confered access to the Lords. There are a few hereditary 'senior' Knighthoods - know as Baronet, and that causes some confusion with hereditary Peerages, but Baronets have never sat in the Upper House, although a number of Baronets have been elected as MPs - hence further confusion. Only Life Peers and a rump of hereditaries (including Margret Countess of Mar !) can sit in the Upper House. It's still an absurd system and an embarrassment to any country that regards itself as modern State.

    IVI
    Bob likes this.
  13. Bob

    Bob

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    The UK's Dept of Health gives lip service to CFS/ME being 'neurological', but the NICE guidelines do not.
    The NICE guidelines relies on the opinions of those who contribute to, and help formulate, the guidelines.
    The current NICE guidelines do not indicate that CFS/ME is neurological, but indicates that there is not a consensus.

    The NICE guidelines fail to attempt to distinguish 'ME' ICD G93.3 (neurological) from 'neurasthenia' ICD F48.0 (neurotic/psychological), which is a major failing, IMO. I would have thought that 'CFS' with a psychological cause, is a misdiagnosis, and is actually 'neurasthenia', categorised as ICD-10 F48.0.
  14. Bob

    Bob

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    Historic indeed.
    I think I've given you three 'likes' in this thread, now, IVI, because I actually agreed with what you said in three separate posts!
    The first 'like' was indeed an historic moment!
    Let's hope it doesn't continue like this! ;)
    The forum just wouldn't be the same if you failed to regularly enrage me! :)
  15. Marco

    Marco Old blackguard

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    Hi Bob

    I don't believe I misunderstood IVI at all.

    The question under discussion, is honours and how they are merited and IVI thought to suggest that the 'undemocratic' honours system was in some way reflective of the particular constitutional system in place in the UK : "but what can you expect in country that retains an hereditary monarchy"

    I merely pointed out that the Australian honours system (and similar systems here in France and elsewhere) is in all likelihood also far from democratic and honours awarded for the same reasons of time served, cronyism etc.

    Having a democratically elected (sic) head of state or a hereditary monarchy doesn't change that.

    Re the House of Lords we could have a long debate on the merits and demerits of a bicameral parliament where one house isn't completely bound to appease short term public opinion, isn't in it for the money, isn't on the make and in many cases can draw on a wealth of experience -public and private -rather than worked their way up as a party apparatchnik.

    Another time.
  16. Marco

    Marco Old blackguard

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    Like France is doing under Hollande after the recent 75% tax fiasco?

    At least the Germans appear to understand economics.

    PS - What's 'modern' about class warfare and the politics of envy?
  17. Bob

    Bob

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    Ah, I see. Then I misunderstood your post.

    Yes, personally, I think the UK's second chamber should remain purely a revising chamber, and should have a large proportion of independently selected 'experts', who do not have to run for election. I don't think that an elected second chamber will much improve the UK's system, and might even make it worse. I also think there should be a jury-like selection process for a proportion of members of the second chamber, so that the general public is represented by a randomly selected number of very ordinary citizens.
    currer and Marco like this.
  18. user9876

    user9876 Senior Member

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    Isn't the Queen also the Australian head of state.
  19. Holmsey

    Holmsey Senior Member

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    In the UK I'm unaware of any medical distinction being made between ME and CFS, other than personal professional preference, I am aware that the Scottish Parliament produced some work suggesting a differentiation criteria but even there I'm unaware of it's addoption.

    Regarding insurance companies (IC's), the product of an IC is a policy, most if not all will have multiple products, each product will relate service level and cost. Under this model an insurance company can select any single illness or illness group and say the product doesn't cover it. My point being that an IC doesn't have to convince the world that ME/CFS is a mental illness simply to avoid paying out for it, they can just name that ICD code and say the product doensn't cover illnesses under that code. No need for deceipt or collusion, like everything else in life you get what you pay for, more you pay more you get.

    That said, as to minimising investigations in the UK, yep I agree they do, but as my own GP pointed out, untill there's a treatment how much testing do you need to do, as long as you're sure it's not a miss diagnosis of another treatable illness. This principle eaqually applies to IC's, they're not going to want to do endless testing if there's no treatment option that the testing points to, and that there's not isn't down to the IC's but to the powers that be. I'll say Ampligen and rest my case.
    Firestormm likes this.
  20. Holmsey

    Holmsey Senior Member

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    "We established something happened, but we found no specific cause." SW.

    Wasn't this the mantra of those investigating the implied connection between cigarette smoking and disease, for decades?

    "The fascinating thing is that it didn't happen again in Iraq, and the reason for that remains enigmatic." SW.

    Indeed, as a likely agent to cause psycological damage I'd think Iraq (GW2) would be a far more likely candidate, in GW1 Iraq had crossed it's borders and all those taking part would be clearly minded that they were part of a 'liberating' force. The brutality and criminality with which Iraq had persecuted their campaign, which essentially became a cross border raid, would be well known to those liberating forces. Added to that the overwhelming technological superiority meant that 'friendly fire' was a greater threat than Iraq's army itself, as a feel good factor it doesn't get much better for a grunt than winning easy. Neither was this a protracted campaign, there was a clear cut agenda with no long term deployment post event, and by comparison to GW2, the world united in applause for those who took part.

    By comparison GW2 was a blood bath with no clear count of either military of civilian deaths on the Iraqi side, best for out politicians that we never know I'm guessing. This time there was no sense of liberation, this was an agressive opperation enacted under the claim of imminent threat and the western troops taking part were under no illusion that they were the agressors. They were also aware of widespread opposition globally to the action and that even the UN was questioning the legality of the opperation. They would in advancing witness the effect on a civilian population of air burst munitions, cluster bombs and sustained ground to ground shelling. This was a sustained campaing which as it progressed degenerated into street by street fighting and terrorism. There was no cheering from the Iraqi people, the world did not support the action and so hardly anyone applauded, in fact many talked of illegality and war crimes commited by the west, later to be proven even if only against low level officers.

    From this I would conclude that some agent other than psycology was at play, I'd add to that that there has never been a more psycologically damaging war for any soldier than for those who fought in Vietnam, and yet I've never heard of Vietman War Syndrome. But then who in the west really want to discuss our 'dirty weapons' or our inoculation practices, why court litigation in a litigenous society. Far easier to just infer that GW1 veterains were somehow psycologically weaker and that a Knight in shining armour could have it all sorted by GW2, with nothing more than talking therapies and the promise of a shoulder to cry on.

    As someone said early on it's all politics, having read about SW's gong I checked, still ill, still feeling like s**t, still alive, yep nothings changed and that's important to remember, nothing got any better on this anouncement but neither did it get any worse.

    Happy New year.
    Kati and alex3619 like this.

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