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28th Sept: The cost of chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) to the UK economy

Discussion in 'Latest ME/CFS Research' started by Esther12, Aug 29, 2017.

  1. Esther12

    Esther12 Senior Member

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    I tend to assume that anything involving the Optimum Health Clinic will be BS intended to sell their expensive services, but thought that this could be of interest.

    I don't know anything about 20/20 Health.

    http://www.2020health.org/2020health/events/Upcoming-Events/28-09-17.html
     
  2. Valentijn

    Valentijn Senior Member

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    Let me guess ... "You'll save money if you add nutritional advice to the CBT, 'cause patients love that useless crap!"
     
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  3. Keith Geraghty

    Keith Geraghty Senior Member

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    I have investigated this clinic before - its run by a chap who completed his BSc in Psychology Alex, then set up the Clinic and he said he had ME/CFS, for few years, age 16-21 by all accounts, he cured himself by diet and lifestyle changes and NLP - which I believe he learned from Phil Parker of the Lightening Process. However, Howard went out on his own to set up the business and brought in some ex-patients mostly to assist him, Dr Megan Arroll, and others. Not sure if she is still involved.

    Not content on having patients pay his clinic it now seems he wants the NHS to send him all patients

    The cost to the UK is a nice touch - seen that one before - Crawley et al

    upload_2017-8-30_9-38-35.png
     
  4. Keith Geraghty

    Keith Geraghty Senior Member

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  5. Philipp

    Philipp

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    I take it 'integrative medicine' is another hackable buzzword that means 'random stuff we believe in because we want to'?
     
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  6. Valentijn

    Valentijn Senior Member

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    They believe in psychological treatments. Their former researcher, Arroll, published her thesis and/or papers advocating for the use of other therapies to make CBT and such more palatable for patients.

    It's still psychosomatic bullshit, wrapped up in some extra dishonesty.
     
  7. Philipp

    Philipp

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    So it's worse than I thought. I was guessing it was something along the lines of calling their brainwashing 'evidence based medicine'. What you describe is straight up cultist-like gaslighting...
     
  8. SilverbladeTE

    SilverbladeTE Senior Member

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    Somewhere near Glasgow, Scotland
    ..and the rich used to inject monkey gland serum to prolong their lives (back in 1920s 30s)
    ..now rich inject teenager's blood to live longer...proving as I keep saying that most of 'em ARE vampires ;)

    and...you get snake oil crooks who not only steal ill/dying people's money and property, they sometimes cause their death
    and there's also misguided but well meaning folk, who's foolishness can cause harm.

    anyway, EVERY such issue, ever such person, should be noted, remembered, facts recorded, for one day, when the ME/CFS *conspiracy* is broken, a whole lot of bastards and idiots will get prosecuted or exposed.
    and make no mistake about it, that IS what has been going on a deliberate conspiracy of silence to deny medical and social aid to desperately ill folk, causing untold, unneeded death and desperate misery.
     
    Last edited by a moderator: Aug 30, 2017
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  9. slysaint

    slysaint Senior Member

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  10. Keith Geraghty

    Keith Geraghty Senior Member

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    So looked at this a little more - basically Alex Howard now wants the NHS to send him patients - he wants to run a trial to show that his clinic can do just as good or better than NHS CBT-GET. " Alex, I always thought you'd go this way" - accessing the NHS is very lucrative, - funny thing is I agree with some of what Alex promotes, the diet and low stress and so on, but he wont reveal some of the more wako elements, the NLP (similar to Lightening Process).

    So the big PR stunt is to get the NHS to take notice. Who is going to fund the RCT I wonder.

    Howard has missed one point - he is now going up against the UK Psych establishment who tried to build the CBT-GET empire - they will fight for the ground, so good luck Alex, you might face some of the things I do in my research.

    I dont think the NHS should fund one private clinic - even if it has renamed itself as a charity (which is funny to me) (im all for a complementary approach - but we havent got the formal medicine right just yet and I cant say I want to rely on his clinic as the may treatment for ME/CFS patients in the UK - we really need good NHS care and access to alternative treatments on preference, one comes before the other, not the other way around.
    upload_2017-8-30_12-34-58.png
     
    Last edited: Aug 30, 2017
  11. Sean

    Sean Senior Member

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    o_O
     
  12. NelliePledge

    NelliePledge plodder

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    so in putting together this groundbreaking research have either OH or the 20/20 people had any discussions with any ME/CFS patient organisations?

    @charles shepherd Im guessing the answer is no
     
  13. A.B.

    A.B. Senior Member

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    Why not also "the cost of low standards of evidence to the UK economy"?
     
    Last edited: Aug 30, 2017
  14. charles shepherd

    charles shepherd Senior Member

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    The Countess of Mar and the Forward ME Group of charities met with a trustee (David Butcher) from the OHC to hear about a research proposal into the economic cost of ME/CFS back in June 2015

    Minutes for this meeting are here:

    http://www.forward-me.org.uk/16th June 2015.htm

    As a group we decided not to get involved

    The MEA also decided that it did not want to get involved with this research proposal

    I cannot speak for any other ME/CFS charities

    CS
     
  15. slysaint

    slysaint Senior Member

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    OHC public relations pushing the proposal:
    http://www.dailyecho.co.uk/news/15469896.Fundraiser_to_bring_vital_treatment_to_NHS/
    "
    Gemma Hunt suffered with myalgic encephalomyelitis, known as ME, for three years, leaving the 33-year-old “struggling to climb stairs and make cups of tea”.

    But after the Colden Common resident began a 90-day programme with The Optimum Health Clinic, she has found a new lease of life.

    The service is not currently offered on the NHS, but fundraising manager Gemma is hoping her event next month will help the organisation so it can continue its research into ME – with a view to having it offered on the NHS in the future."
     
  16. Jenny TipsforME

    Jenny TipsforME Senior Member

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    Bristol
    Yes I think OHC is a mixed bag and more nuanced than most of this thread would suggest (which shouldn't be read as a ringing endorsement) though I'm too ill today to explain well I fear. An example is they are actually quite critical of the Lightning Process, saying that it leaves people with a sense of guilt. They run courses for just people who have previously done the Lightning Process, implying they don't consider it as effective as the hype, as then people wouldn't need a follow up course (though they probably maintain more elements of LP than we'd be comfortable with). Alex Howard said something about distancing himself from LP due to disagreement over marketing techniques. It is something post-LP, moving on from it.

    When I started the nutritional phone appointments (and related supplements) I went from bedbound stage to housebound-up-most-of-the-day stage within 2 weeks. I can't definitely attribute cause but it seemed like more than coincidence at the time.

    I also watched the Secrets to Recovery videos and they were mostly helpful at a time when there was no way I could access this forum (which could have offered similar advice on supplements and pacing, but I couldn't read so that was not an option open to me). There are definitely wacky elements that I didn't pursue. I also didn't have any Psychology style appointments.

    I like the diversity but they do take on a lot of ideas (as a positive this means they're not zealous about one trademarked idea like other clinics).

    What it makes me think of is if a number of us on here got well and decided we knew what had made us well (which might or might not be accurate) and set up the Phoenix Rising Recovery Centre, including all our ideas. Some of it would be spot on, and some of it would be nonsense, and some people would see good results as a mixture of placebo and also hitting on actually relevant protocols.

    I think this analogy helps in terms of conceptualising OHC in your mind, they seem to me to be more like us trying to agree a protocol than the UK CBT/GET Psych Lobby. If it wasn't in the context of UK ME politics (which they seem to ignore) it might not even aggravate us at all. It seems more genuinely BioPsychoSocial than the supposed BPS model of ME which is actually a psychosocial approach. I'm somewhat amused to see how they manage to take on the CBT/GET machine, though perhaps I should be worried.
     
    Last edited: Aug 31, 2017
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  17. Keith Geraghty

    Keith Geraghty Senior Member

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    I think Alex is a decent guy from the outside point of view - but he is a business man, lets be clear, he went straight from Uni down to London, hired a room in Harley Street (man of the people) and started selling himself basically, because he had no professional or clinical quals to work from. He said he got himself better via diet, meditation and so on (which I celebrate); but unfortunately this can lull people like Alex into thinking they understand ME/CFS. He may well get many many people better who have general fatigue and burnout.

    Like all good business men he is looking for business - the NHS is a perfect pool of new clients, 'if they cant help ME/CFS patients, he will' - type thing. This is where I think he will struggle, the Psych people wont give CFS patients over to Alex too easily, and I would advise the NHS not to either. The NHS should be offering better care to ME/CFS patients - then Alex can offer complementary care for those who want it -privately.

    I know Alex will read this via himself or one of his staff - usually his ex clients (who now work for him - converts to this methods).

    Alex and I share something, we both studied in South Wales and were probably in Uni at the same time and we both walked down Swansea beach a good few times -when I visited there.

    Alex has many little ventures - this is his latest ------ lets keep an eye on this space
     
  18. Kati

    Kati Patient in training

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    In my world, health care is free. Complimentary medicine which is not proven useful for cancer, HIV/aids, rheumatoid arthritis and MS, to name a few, and should not constitute the main treatments for a population, especially the most vulnerable, including children and the severely affected. If NHS agrees to this proposed scheme they are basically forcing patients to pay for their health care for one disease, which would be discriminatory. It also prevents the real physicians to see this disease as a medical problem. (You could argue they don't anyways, and I agree).

    There doesn't seem to be a clear view of what this venture suggests as treatments, and how evidence-based it is, and how scientific. Chances are, it is not.
     
    Last edited: Aug 31, 2017
  19. Snowdrop

    Snowdrop Rebel without a biscuit

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    There is a continuing and worrying trend to monetise health care turning it into private enterprise. Who ultimately are they responsible to and how would one access accurate information about the efficacy of any facility or treatment. Health care should be seen as a human right not just for those who can afford it.
     
  20. Sean

    Sean Senior Member

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    Health care is not a luxury, a reward, or even a human right. It is an absolute necessity for a functioning society.
     

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