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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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Professor Simon Wessely says he is misunderstood

Discussion in 'General ME/CFS News' started by Daisymay, Nov 27, 2012.

  1. notinfinite

    notinfinite Guest

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    Please tell me SW DID say the "warzone" thing ..........
  2. Wildcat

    Wildcat Senior Member

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    SW said that he 'felt safer' in Iraq and Afghanistan than in Britain!

    For example, in 2012 -
    'At least 19 people have been killed in three separate bomb attacks in predominantly Shia Muslim areas of the Iraqi capital Baghdad, police say.
    Dozens of others were wounded in the blasts near Shia mosques in the north and north-east of the city;
    http://www.bbc.co.uk/news/world-middle-east-20514017
    .
  3. Holmsey

    Holmsey Senior Member

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    And everything that notinfinite said above.

    IVI will not doubt reply himself, but here's my take on it. The current reality is that the psyc's are involved with ME/CFS, if we think that's wrong we have to demonstrate why using reason and proof, nothing else will change anything, nothing.
    If you want to view this as a fight then use a fight analogy, you can't stand toe to toe and slug it out with the psyc's, they have access, funding and influence we could only dream off.
    What I belive IVI is pointing out is that we're the only loosers by continuing on a failed path of angry opposition, we're not even close enough to bang on the door let alone sit at the table, and everytime we feed another media frenzy with careless and foolish claims we cant' substanciate, we take another step away.

    What do you want, better treatment, research toward a cure, or some notion of revenge.
    barbc56 likes this.
  4. maryb

    maryb iherb code TAK122

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    We don't have to demonstrate anything to the psych,s they have their own agenda and nothing, I repeat nothing, is going to get their heads out of that big pot of cream. Its not about angry opposition, its just about the truth coming out and with people like Prof Hooper this just may well happen, we can also look to the USA and Norway for developements as well, the psychs will have to justify their claims to higher up than us hopefully pretty soon. I just don't like nonsense statements like
    "The only way forward is engagement with psychiatric services in seeking better inpatient care in psychiatric settings fro people with M.E/CFS. A simplistic anti psychiatry appraoch is not going to change anything."
    I have ME which started with a sudden onset virus, I don't want psychiatrists nor psychologists involved in treating it. its a physical illness, not a psychiatric illness.
    I can cope with the emotional side of having a chronic illness myself.
    Jarod and Enid like this.
  5. Enid

    Enid Senior Member

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    Never saw that statement maryb (can't read long posts especially if it's SW trying to justify himself) but utterly agree with you - engagement with psychiatric services - what on earth does the writer think has been the real problem in the UK over decades - these types.
    Wildcat and Min like this.
  6. maryb

    maryb iherb code TAK122

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    Enid this relates to a previous post,

    IVI you said
    "The only way forward is engagement with psychiatric services in seeking better inpatient care in psychiatric settings fro people with M.E/CFS. A simplistic anti psychiatry appraoch is not going to change anything."


    Are you serious or having a laugh at our expense?
    Wildcat, ukxmrv and Min like this.
  7. Firestormm

    Firestormm Guest

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    Sorry. Serious debate I am sure. But, well, that made be LOL as well as being true of course.

    Only to add, that ME is also not a prophylactic against methods used to try and help people like us manage with a long term condition either; methods that are similarly employed to help with other long term conditions (you know of what I speak methinks) :)
    barbc56 likes this.
  8. Enid

    Enid Senior Member

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    @ maryb 146 - I'm a twelve yearer with complications now - so no room for laughs here - I do not believe "engagement" with those who caused ME to be seen as something "all in your head" and still try to hold on (in various ways) to the psychology of it. The way forward is biomedical research.
    Wildcat and Min like this.
  9. Firestormm

    Firestormm Guest

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    It's a premise. If you accept (which I don't think you do) that at some point you or I might experience something so dire in our ability to cope that it leads to us becoming an inpatient in hospital under the care of a psychiatrist and mental health team; then a better way to achieve change and improvement in that care is to engage rather than to demand that we shouldn't be there.

    One means of engagement, for example, might be education. But then if you don't accept the premise that you or I are not insusceptible to mental health problems you probably won't want to hear any further thoughts. But that's fine. Personally, and I don't mind 'opening up' I have for example in the 3rd year of my existence with this and other 'physical' diagnoses, whilst being unable to return to work, and bedridden; attempted to take my own life.

    I ended up in hospital. When a psychiatrist was finally made available - some 4 hours later I might add - he offered me an admittance. This was, admittedly, after I had railed at him, words to the effect that (and in answer to some question he posed) "I HAVE TRIED EVERYTHING!!" to which if I recall he replied "Well, you can't have done."

    Oh I can put that down to experience now, but I could have accepted his offer and been admitted. Since then along my journey, 'mental health' management has been part and parcel of my experience. At this moment in time, science is not able to separate or explain the 'physical from the mental' and if you want my further opinion it will never be able to either.

    We do not know for example, if what is happening to me - which incidentally has ALWAYS been acknowledged by every single mental health professional I have engaged with over my many years - can be put down and to what extent it can be put down - to my 'ME' or to my (in)ability to cope with life with 'ME'.

    But aside from 'ME' and those trials and tribulations - I am not immune from having a separate mental health crisis. To believe that I am would be stupid. Anything can and does happen.

    So there you go. Read it and weep.

    I still like the prophylactic reference though. Might adopt it as a campaign banner!! Joking aside however, you can perhaps see why at times those outside of our condition specifically, have adopted this notion that 'we' believe ME cannot possibly have a psychiatric component or need psychiatric involvement. Or you might not [shrug].

    'tis the season to be jolly.... :)
    Holmsey likes this.
  10. In Vitro Infidelium

    In Vitro Infidelium Guest

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    Yes - I find it puzzling that other people don't get this. It makes me wonder about those who want to cast the whole thing in conflict terms, as to whether they've ever had to (or have chosen to) deal with or engage with actual conflict and the costs that involves. Fighting (whatever the context) takes up huge amounts of energy and other than in the constrained context of regulated martial arts, the potential for colateral damage is immense. Most of my direct experience of conflict has 'luckily enough' been 'in the ring', (a long time ago) or in the somewhat group protected arena of politics (not that there wasn't a deal of right wing thuggery to face down on occaision). Something I'd say was a near constant truth is that those who are most enthusiastic for a fight, are usually never to be found when the time comes to actually take a beating. Macho posturing arouses my strongest sceptical sense. I can already hear the cries of 'but we are already taking beating' to which my response is - the opposition has barely stirred, if you don't like things now, what makes you think you can cope with 'toe to toe' ?

    I think that should be writ large over every thread like this one.

    IVI
    barbc56 likes this.
  11. user9876

    user9876 Senior Member

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    Real problems may start here. Many people with ME don't trust psychiatrists due to their claims over ME. So if someone was to develop a separate mental health crisis how many people would not feel able to trust a psychiatrist and how many psychiatrists would say you've got CFS have some CBT. It could be the same problem as if you see a doctor with a comorbit physical disease, the doctor may not see through the ME to do a proper diagnosis.
    Wildcat likes this.
  12. In Vitro Infidelium

    In Vitro Infidelium Guest

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    It's very serious indeed and I'm very disappointed that you should have lowered the tone of the discussion in this way.


    IVI
    barbc56 likes this.
  13. maryb

    maryb iherb code TAK122

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    I don't want to fight I want to ignore them, its them that want to fight to the death to protect their interests, do you think all those signatures were really about poor ol Simon?:rolleyes:
    I want to have people more knowledgable and articulate than I am advocate for me and I will support them with every breathe I have.
    Firestormm - I'm sorry to hear of your experiences, but I still don't accept that ME cannot be treated as a physical illness, and that we have to conjoin the mind and body treatment, so its - hang on we'll just forget the body treatment and let the psychs do their thing in this country?? What good is that to me and others who don't have any mental health issues??
    I say it again, is any other physical illness treated like this? I'll answer for you, NO

    Many years ago I worked with a couple, the wife had MS, she had been diagnosed 5 years previously and never told, she had gone all that time not knowing what was wrong with her, until my involvement when I told the husband to ask the doctor what the diagnosis on her records was.The relief for that woman was immense, little did I imagine years later I would be in a similar boat.
    It didn't have a happy ending, she died of the illness and the woman that had comforted and helped her husband (she told me she didn't like her) during the time of her illness moved into her house and got the man. Life eh!!
    Min likes this.
  14. In Vitro Infidelium

    In Vitro Infidelium Guest

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    In principle a survey could be congruent with the scientific method. Personally I'm doubtful that the use of 'experience' surveys as in PACE etc meets full scientific rigour, which is one reason why I would never defend PACE as being 'science' (although I think it works as referenced to EBM and shows the interventions for what they are - not very useful). Bias isn't actually the problem - it's that lack of any means to measure the bias that is the problem - but of course it amounts to the same thing in practice. It is also, for what it's worth, why I'm agrieved at Wessely getting his prize - I just don't think he's stood up for science, because the content of his work is not 'science', although it may still have clinical value in the absence of science but that involves a different measure.

    I do think we have to accept that there will (at least for decades to come) be a role for evidence gathering in medicine that can not meet scientific rigour but which will have value in informing clinical practice. Everything from the relationship between patients and health professionals to the subjective experience of pain is worthy of analysis even if the objective measures necessary for scientific rigour are not available. Some aspects of medicine will remain 'art' not science. The key thing is not to confuse the 'art' with the 'science' - I think Wessely and others are guilty of such a confusion. Whether one wants to invoke sociology I guess is a matter of taste - certainly the participatory model of research that has developed within sociology has started to inform service structures, including to some degree the health services. This wouldn't though embrace clinical experience such as pain relief where the reference would remain psychology.

    IVI
    Firestormm likes this.
  15. In Vitro Infidelium

    In Vitro Infidelium Guest

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    Where has anyone dismissed any personal experience ? My point to you, is that you have invoked personal testimonies in the cause of an argument that those testimonies can not support. The key information comes down not to the individual testimonies but to the validity provided by collated data. In this case – how many people were surveyed, and how were they selected, and who (if anyone) provided a diagnosis of M.E/CFS ?
    Excellent back to good old ad hominem ‘question the integrity of the poster’. As it’ll give me a wry smile (not a laugh) I’ll reply in kind by asking if this is just a tactic to avoid answering a difficult question ? –
    how many people were surveyed, and how were they selected, and who (if anyone) provided a diagnosis of M.E/CFS ?

    I would actually very much like to have a laugh at ‘our expense. I think there’s a huge amount of humour in all illness, and in my experience everything from ‘embarrassing bodies ‘stuff to cancer is a source of much laughter to sufferers. However M.E/CFS patients seem uniquely po-faced . Sadly I don’t think M.E/CFS ever came up on Bill Hicks’ radar – a shame because with all our collective self regard we really, really deserved his smoke choked style of bubble burstery.

    IVI
    barbc56 likes this.
  16. maryb

    maryb iherb code TAK122

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    Enid I think you misunderstood my post, my reply to IVI on his statement was:

    "Are you serious or having a laugh at our expense?"

    I'm in no mood for humour about our illness either, like you I have suffered at the hands of the idiots in A &E, early in my illness admitted to a ward for the 3rd time with vertigo so bad I hadn't eaten or drank for 3 days, the cruel hard nosed female doctor looked at my notes and said well this is the third time in 2 months hmmm, you obviously can drink so I'm not putting you onto a drip, heres a cup.
    Things like that leave a scar, I was a fit healthy person before this, and to get that sort of (non) treatment.................
    Wildcat likes this.
  17. maryb

    maryb iherb code TAK122

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    I don't agree with you IVI (surprised?) I didn't see much humour in any of my relatives that died of cancer but hey we've all got different stories.
    Wildcat likes this.
  18. Enid

    Enid Senior Member

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    Well understood that maryb @ 156 - spotted the "culprit". I know nontreatment so well too from previous sound health.
    Wildcat likes this.
  19. barbc56

    barbc56 Senior Member

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    IVI[/quote]
    Hey IVI, are you trying to make me laugh? Well it worked. Damn you!!!

    If I ever lose my sense of humor, I might as well be dead.:lol:

    Barb C.:>)
  20. orion

    orion Senior Member

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    Eh? What on earth do you mean by that?

    I get the impression they're already throwing everything they've got at us, and it's not working. If anything, it's just increasing our resolve. I think we've got them rattled. Hijacking an organisation like the SMC to further their own narrow agenda actually smacks of desperation to me.

    Your comment is truly bizarre. Seriously, what else can they do to us? It's not like we've got anything to lose.

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