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Where is the UK coverage of the FDA/NIH paper???

Discussion in 'Action Alerts and Advocacy' started by V99, Aug 23, 2010.

  1. coxy

    coxy Senior Member

    Oh really Min, so it's not a good idea then? What is GMC please?
    I didn't mean to draw attention to the doctors for the wrong reasons, i was hoping the me/cfs doctors/neuros would be on their patients side and want to help us by getting this reaearch out in the open for all to see.
  2. Min

    Min Guest

    The General Medical Council are trying (and succeeding in some cases) to stop doctors who treat ME as a physical illness from practising. Scandalous when ME has been classified as a physical illness by the World Health Organisation since 1969. The politics of ME (and Lyme disease) are extremely frightening for sufferers and their loved ones.
  3. Sunshine

    Sunshine Senior Member

    Hi Coxy. Here are some answers to your questions.

    Professor Findley describes ME as 'fatigue syndrome'. Fatigue syndrome is a psychiatric disorder categorised in F48.0. (mental health). The truth is ME is classified in G93.3, as a neurological disorder.

    The National ME runs a belief system copied from Simon Wessely (Kings) & Peter White (St Barts Hospital) of using psychological rehabilitation for somatization/conversion disorder causing 'fatigue' states, and takes place within a general NHS neurological ward, not in a 'National ME Centre'. This centre is fiction. (The concept isn't), but the building is.

    The 'specialists' in 'fatigue' inpatients bed bound patients can see amount to a:

    Occupational Therapist
    Rehabilitation Assessment

    The NHS website of Queens hospital (where 'The National ME Centre' is based) states that ME/CFS patients have 'perpetuating factors' that maintain their chronic disease state, some which include:

    Low mood and anxiety
    Other physical and psychological stressors
    Family dynamics
    Bowel Movements

    Their 'Evidence Based Treatments' include:

    Individual lifestyle management
    Return to Work Group
    Lifestyle Management Group
    Stress Management Group
    Graded exercise therapy
    Person centred counselling
    Couple counselling
    Family counselling
    Cognitive behavioural therapy


    The Barking, Havering& Redbrdige University Hospitals NHS Trust, house... The National CFS Diagnostic & Specialist Rehabilitation Service in Romford, Essex, UK. (where 'The National ME Centre' is based) states that their service that offers 8 beds to a patients population of 250,000 offers a:

    ''Pioneering and Flagship Service''


    ''Very High Standard Of Care''

    The NHS website promoting the 'National ME Centre' erroneously states that:

    ''The World Health Organisation (WHO) has classified CFS as a neurological condition''.

    This is a lie.

    The WHO classify ME (Myalgic Encephalomyelitis) as a neurological condition, not CFS. Additionally, CFS is not a psychiatric illness, fatigue syndrome is. Professor Findley has stated on BBC Radio 4 that CFS, ME or a car. (Yes a car!), are the same thing.....yet then calls CFS & ME 'fatigue syndrome' which is listed as a psychiatric disorder.

    This perhaps explains why Professor Findley has no interest in talking about XMRV in public on behalf of his 'fatigue' patients, or contacting the WPI to get access to testing!!!!!
  4. Sherby

    Sherby Sherby

    London UK
    I can confirm with you about Prof Findley. I first saw him about 15 years ago. Was one of his inpatients for a month. I was diagnosed by Prof Findley as have severe M.E.
    The next time i saw him a couple of months ago, he had some trainee students with him. Without saying hello he turned to the students and described me as a typical CFS patient.
    How the hell did i go from M.E to CFS. That opened my eyes about what is going on. The remainder of appointments was with his close assistant. Her opinion was that XMRV like the others
    wont hold water. Funny that, she is about to retire and go back to America. Could it be just coincidence?
  5. Athene


    My mother was a patient of Prof Findley and with her he seemed very nice at first, but then changed, and eventually was totally useless.
    Several of his staff (other doctors and nurses) said he had been on a trip to Rome and, in the Vatican, had received a blessing from the Pope. From this time on, they said, he believed he was divine and that he was incapable of ever being wrong because he was on a mission from God. They said he had become "impossible" since then.
    My mother never bothered seeing him again.
    True story.
  6. Sherby

    Sherby Sherby

    London UK
    True story, but still unbelievable
  7. coxy

    coxy Senior Member

    why did he put our 8 yr old daughter on amitriptyline and migraine tablets to be taken every day if he only believes it to be a mental illness? That was 8 yrs ago now, but he wrote some very stroppy letters to school making sure they understood that she was going into school purely to see her friends at lunchtime, and she needed as much rest as possible. We were told an average ME lasts approx 4.5yrs.

    He also diagnosed me nearly 3 yrs ago now and immediately put me on enada, b12 injections, melatonin for sleep. He actually told me to stop work and got very cross with me when i wanted to try and carry on, telling me my illness was no joke & very serious!
    We don't see him anymore because he wanted me to try his new neuro lingistic programme (his version of the lightning process), i also couldn't understand where his 4.5yrs came from when he doesn't follow any of his patients up.
    I emailed him about xmrv and he did say that he agreed it was very interesting.

    I'd love to hear any other peoples views on him.
  8. OverTheHills


    New Zealand
    I saw him about 5 years ago and I didn't take to him.

    I found him pretty old school 'doctor as god' - he fires questions at you but avoids interacting with you as a person or explaining what he's thinking. He was keen to refer me to another consultant as well (completely out of the question financially) and for me to do GET. I declined after a telephone call with his therapist, who could not explain to my satisfaction how my marked fluctuations in capability (seasonal and menstrual) would fit with the idea of her programme. I hadn't read anything about GET at that point, I just have a reluctance to obey people who cannot explain the logic behind what they are doing for/to/with me.

    He did suggest enada (I can't tolerate very much of that) and B12 injections which I do find helpful. He did a very stroppy memo to my local GP when she withdrew B12 jabs after someone drew her attention to the NICE guidelines. But alas that didn't help.

    I felt he was exploiting a gap in the market and playing on his status as a professor rather than really motivated to help patients.

  9. Mark

    Mark Former CEO

    Sofa, UK
    Well I might come across as naive about the Tories, which I'm not, but it has seemed to me that there might be one slight window of opportunity for us. A major principle they have stated for their health policy is to put power back in the hands of the patients, and to give patients and doctors more freedom of choice as to how they spend their funds and what treatments they prefer. Now I imagine that is mostly about something like some kind of fund-holding trick to enable doctors to get rich quick, and of course the budget is going to shrink massively and that's got to be a big part of it too - but at least on the face of it, greater freedom of choice and devolution of power back to local level should in theory be part of what the Conservatives are supposed to be about, especially after an era of centralisation and strong state control. Those nasty NICE guidelines remain in place of course, and Dr Myhill remains unable to prescribe thanks to a vindictive witchhunt in the dying days of the outgoing administration, but still...there should at least be a theoretical opportunity in those alleged principles of greater individual empowerment.

    I would be making the argument that with greater freedom for doctors and patients to pursue alternative treatments to CBT/GET, there's at least a chance that some patients might actually get a little better and be able to resume a more productive place in society and get off welfare benefits (for those that can get them, of course) - and failing that, the private and alternative practitioners are at least a private enterprise that would be encouraged.

    I'd mention that New Labour's dominant and rigid system for heatlhcare needs rolling back and opening up, and that maybe certain physicians currently outside the NICE guidelines could be allowed to practice again, perhaps with an element of public/private mixture - ie. patients would get some sort of voucher towards the cost of the private healthcare solution of their choice. I'd also point out that any sign of moves in this direction could be a big vote-winner for the Conservatives amongst ME/CFS patients.

    Of course one would have to warn IDS that the distinction between benefit scroungers and ME/CFS patients could be hard to make, though I have no easy solutions to that conundrum - you could mention the tests that aren't currently available in the UK.

    And finally, I wouldn't be able to resist the argument that if his government is looking for an area to cut, they could do a lot worse than to examine the expanding army of psychologists and Wessely's CBT/GET approach. The involvement of former Revolutionary Communist Party Members in founding and running the Science Media Centre might be something else they could be interested in rooting out as well, since their re-worked ideology is avowedly to 'destroy the environmentalist movement' and wage war on the planet, and Cameron at least likes to be seen as a green.

    So oddly enough, in our topsy-turvey world there could be some positives to pursue - and after all, it's not like the NHS is offering us anything at all at the moment, so we've nothing to lose, really. And if you don't look hard for the positives in life, you're unlikely to stumble across them by chance...

    More on how New Labour's UK Science Media Centre controls media reporting of science, and the agenda of infiltrators from Living Marxism to enable unfettered scientific progress by disregarding and concealing the victims of experimental science and environmental illnesses, here:

    My post #50 on that thread quotes from LobbyWatch to set out just how drastically their hidden agenda is opposed to our interests.
  10. coxy

    coxy Senior Member

    i'm not sure i've ever heard of anyone taking to him to be honest, he scared the life out of me & my daughter, but was honest enough to say he knew he came across as ubrupt sometimes & that he said he had little experience of dealing with children.
    I found the amount of time he spent talking about his house in Barbados slightly unnerving, it did seem to me he was in it for the huge amount of money he's obviously made/making over the years!
  11. *GG*

    *GG* senior member

    Concord, NH
    This is why I was so against the "Reform" the Democrats pushed through our Congress!

    And Then the WPI, I private institution is the Non-Government agency that made a huge discovery and will hopefully bring us all some major relief!!


    NH's motto is "live free or die" and I take this motto seriously, like many Granite Staters! I am only a 1st Generation American, but I definetly think this Country is great, with all it's flaws!

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