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Positive vs negative outcomes of Exercise rehab in ME/CFS probed via online survey (Pheby 2013)

Discussion in 'Latest ME/CFS Research' started by Simon, Jun 7, 2013.

  1. Dolphin

    Dolphin Senior Member

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    They use both. Also from Clark & White (2005):
    Ellen Goudsmit points out some times that GET is based on conditioning also. "Like trained pigeons" is a phrase I think she uses.
     
  2. Esther12

    Esther12 Senior Member

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    I don't see any reason to believe that patients diagnosed with CFS have any more inherent need for activity management than any other group of people.

    A lot of patients have been badly screwed over by unfounded claims about the role of deconditioning in their condition, the promotion of 'positive' cognitions about the role reversible psychosocial factors play in perpetuating their health problems, and dishonest claims about the efficacy of GET - all of this sort of thing can lead to patients having messed up views about exercise and how one should be engaging in it, but I don't think that this can validate the routine medicalisation of the behavioural choices of patients, particularly when many of the quacks responsible for these problems are still in place, still making false claims about the benefits of GET, using this to affect how funding decisions are made, to further their own careers, and so on.

    Some patients may want to spend money on activity management. They could be given the resources to do so, but equivalent financial resources should also be provided to those patients who'd rather buy a trendy pair of jeans, or anything else - it seems that this is just as likely to be helpful for improving their health.

    Also, look at these positives:

    I'm not interested in fashion, but I'd much rather have a £500 pair of jeans than that.
     
  3. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Hope this double quote works! I just had a light-bulb moment - it's not Pavlovian conditioning but operant conditioning, the difference being that in the former the unconditional stimulus is provided by someone/something else, and in the latter the unconditional stimulus is provided by the one experiencing the conditioned response. Apologies for the previous error - I studied this a long time ago and am a bit rusty (plus slight brain fog).
    There is some info on operant conditioning here.
     
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  4. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Considering the situation many of us have ended up in, the preferred use for money would probably be paying the rent or having the heating on...
     
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  5. Esther12

    Esther12 Senior Member

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    Yeah - I've got to admit, my clothes are £1 charity shop jobbies rather than designer show-off clothes... but I can think of few things which I'd want to spend my money on less than activity management from the NHS.
     
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  6. Valentijn

    Valentijn Activity Level: 3

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    According to Pinching's 2000 publication on the matter, he believed in limiting biological investigation, because it "can also be harmful and counterproductive to the managements of these patients, raising inappropriate concerns and causing them to seek abnormal test results to validate their illness." He was also a big fan of the boom-and-bust theory, that we're either being unrealistic and over-active or fearful and under-active, resulting in deconditioning and "excessive awareness of physiological changes."

    He didn't think that orthostatic intolerance needs treatment, I guess because it's more beneficial to just be bedbound and housebound until we're forced to magically cure ourselves? Fortunately it seems that he believed we can helped to recover somehow: "Strategies should be geared towards long-term recovery and avoid short-term tactics that inhibit it, such as over or underactivity." Presumably we just need to accept that "The essence of treatment is activity management and graded rehabilitation."

    He was way more moderate than the worst offenders, but seemed to suffer from the inexplicable belief that even if we have serious symptoms that need to be managed, CBT and GET are the One True Cure. Probably just another doctor who is not a scientist and is completely incapable of questioning any official guidelines, or papers published in reputable journals, no matter how much they conflict with the reality he's seen in his patients.

    The MDs aren't on the team to provide biological investigation and assistance. They're there to create a facade of legitimacy, to diagnose, and to discourage further biological interventions.
     
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  7. Bob

    Bob

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    Actually, I've heard mixed reports about Pinching, and there's a gaping difference between what I've read online about him, and what I've heard from patients who actually saw him. Those I know who have actually met him say that he is a very decent and caring physician, and not at all like the cognitive-behavioural advocates. He wanted to carry out a further study with Immunovir, after some positive results with it, but couldn't get the funding for it. My understanding was that he was always under intense pressure from the cognitive-behavioural lobby, and resisted the pressure as much as possible, but it was like holding back a rising tide. Some of the negative stuff that I've read about him online doesn't match up with the first-hand reports that I've heard about him. I've only heard praise from those patients who were actually treated by him. So perhaps Pinching's work isn't fairly characterised by some of the stuff written about him online. And, as you know, I'm no defender of the psych-lobby.
     
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  8. Valentijn

    Valentijn Activity Level: 3

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    The above are direct quotes from a paper which he wrote and published. More are at http://forums.phoenixrising.me/index.php?threads/anthony-pinching-quotes.21878/

    I get the same vibe that I get from Dr Alistair Miller : that they are both quite intelligent and believe that ME patients are suffering from severe symptoms which should be treated, and that they are very compassionate toward their patients. But they will also never question the recommendations made by the accepted authorities. And those recommendations are based on a psychosomatic theory, hence these doctors end up with what seems to be a hybrid biological/psychosomatic view of the disease.

    Hence some symptoms may get treated, especially if the Authority encourages or at least doesn't recommend against that specific treatment, such as for sleep issues or pain. But other symptoms will be ignored as much as possible, especially ones which are heavily emphasized as being psychosomatic, such as MCS or various gut problems.
     
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  9. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    I saw Prof Pinching after being ill for years, and did find him respectful, attentive and sympathetic. He didn't offer any treatment as he thought I was doing all the right things already and had 'remarkable insight into my illness' or words to that effect. The only hint of scepticism did indeed appear when I mentioned my extreme sensitivity to artificial perfumes, which he immediately appeared to ascribe to psychological factors, but was perhaps too tactful/diplomatic to state this outright. I sensed his scepticism and decided not to pursue the matter.
     
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  10. Dolphin

    Dolphin Senior Member

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    I recall talk a few years back that UK patients would be put in charge of their own health budgets, so they could decide what they spend money on. As I recall, they were talking about trialing this with a few specific conditions e.g. M.S.

    It seems to me offering non-pharmacological management programmes and therapy can be an almost a bottomless pit in terms of the amount of money involved: patients can always have issues they'd like to talk through.
     
  11. Dolphin

    Dolphin Senior Member

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    Action for ME picked Alastair Miller to replace Tony Pinching as their medical advisor. Both are immunologists. However, I see differences between them e.g. Alastair Miller has said explicit things in support of GET and CBT e.g. with regard to the PACE Trial. Tony Pinching was more into pacing.
     
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  12. alex3619

    alex3619 Senior Member

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    How many people have anything to do with them any more? They could have kept the survey running longer, or advertised more as well.
     
  13. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Prof Pinching didn't try to push CBT or exercise at me when I saw him in 2008, IIRC. He did say that he thought that I was managing my condition very well and had 'remarkable insight' into my condition, or words to that effect. I had given him a detailed summary of my history, experience with medications and supplements, and management strategies, which were of course based on pacing and did not involve any deliberate exercise, and he had read it thoroughly. I liked him.

    He does seem to have given some support to CBT/GET in the past, but I wonder whether this was due to external pressure and he felt unable to 'rock the boat'.
     
    Last edited: Jun 11, 2014
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  14. Wildcat

    Wildcat Senior Member

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    Bob wrote: "Actually, I've heard mixed reports about Pinching, and there's a gaping difference between what I've read online about him, and what I've heard from patients who actually saw him."
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    You make it sound as though criticism of Pinching is just heresay. Not so.
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    What you read about Professor Pinching online is also from patients who actually saw Pinching, or were 'treated'/neglected by his clinic at Barts. Sweet talk and nice words from Pinching do not compensate for the appalling situation at Barts whilst he was there, or the failure of the consultants there to recognise or work with actual ME as opposed to chronic fatigue or depression, leaving very sick ME patients abandoned. Pinching has turned his back on some very seriously sick and mistreated patients. His surface charm is misleading, he switches it on and off.
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    Last edited: Jun 11, 2014
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