New Atmosphere, New Vision: Gibson and Whittemore Kick Off Invest in ME Conference 2016
Mark Berry reports on Dr. Gibson's introduction and Dr. Whittemore's keynote speech, at the 11th Invest in ME International ME Conference in London.
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Podcast by Dr Ronald Hoffman on PACE Trial

Discussion in 'General ME/CFS News' started by Yogi, Oct 14, 2016.

  1. Yogi

    Yogi Senior Member

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    http://drhoffman.com/podcast/part-1-a-flawed-study-on-chronic-fatigue-syndrome/



    Excellent podcast by Dr Hoffman on PACE trial. Starts off a bit sensationalist about activists but covers the PACE trial criticism well. The podcast is based on and refers to David Tuller Virology work and Julie Rehmeyer's statnews piece and the FOI case.

    It criticises UK socialised medicine which allowed the PACE trial and finally CONGRATULATES the "vexatious" activists for challenging established scientists and the Lancet.

    Just love listening to Americans talk (Tuller, Ranciello, Rehmeyer, and now Hoffman) about CFS whilst the British after inflicting PACE on the world now sit silently.

    http://drhoffman.com/about/about-dr-hoffman/

    He is and I like conventionally trained mainstream doctors who also do complementary and alternative medicine.
     
    Last edited: Oct 14, 2016
  2. worldbackwards

    worldbackwards A unique snowflake

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    Yeah, George Lewith is great isn't he. :)

    Actually I do know what you mean, but was prepared to sacrifice such understanding for a cheap joke. Sorry.
     
  3. BurnA

    BurnA Senior Member

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  4. Dolphin

    Dolphin Senior Member

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    I thought it was very good. He got on top of the subject matter. And it's at a level that most people should be able to understand.
     
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  5. Dolphin

    Dolphin Senior Member

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  6. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

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    Give him some Twitter-love (if you're so inclined).

     
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  7. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    Hmm...

    Pity that although he calls himself intelligent medicine he does not seem to have much idea of the issues. He could not remember if blood pressure was up or down in ME and clearly did not have much grasp of what was actually wrong with the study. He just quoted what other people had said. His grasp of English also seems limited. He seemed to think 'vexatious' was an 'Englishism'. He should look up US law! (The first Vexatious Litigant law in the United States was enacted in California in 1963. By 2007 five US states had passed similar legislation: California, Florida, Hawaii, Ohio, and Texas.) He also had trouble pronouncing oxymoron (why bother to use a fancy word if you don't know how to say it). To me, he gave the impression of someone with rather little intelligence trying to bluster through, but at least he carried the message onward.

    The reference to socialised medicine seemed to me non sequitur. he was referring to private insurance interest and pressure on social security costs which are exactly the same in the USA. It is iniquitous that these interests were allowed to sully medical research funded by the MRC but that actually has nothing to do with the NHS! Research is done by universities, just like in the US, not by the NHS.

    And it is a pity he could not quite remember who I was, or quite what I had said, but was happy to remember his commercial colleagues in the US, who like the PACE authors have a clear financial interest in what they say and in scratching each other's backs.

    Still, maybe I am biased because in rheumatology all the big therapeutic developments occurred in the UK and Japan while the Americans poured money down the drain and got nowhere.
     
  8. Dolphin

    Dolphin Senior Member

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    Can't remember what he said but in general I think socialised medicine can be to related to the fact that CBT and GET are so prominent in the UK (which has then influenced thinking worldwide). If patients had their own budgets/were spending their own money, I think many patients [with ME/CFS] would prefer other therapies to CBT and GET. Socialised medicine has allowed patients not to be listened to.
     
    Last edited: Oct 15, 2016
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  9. slysaint

    slysaint Senior Member

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    So now we are the 'Village People of Transylvannia'! :cool::whistle:

    (he also got ME wrongo_O)
     
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  10. AndyPR

    AndyPR Senior Member

    I love Google :D
    [​IMG]
     
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  11. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    Psychotherapy is much bigger in the US than in the UK I believe. And since there are no treatments to spend money on for ME I am not sure how having your own budget would help! Where would the budget come from for people with no income? As I understand it for a lot of conditions in the US if you are chronically disabled you have to sell your house and still don''t get much long term benefit.

    I cannot see the link between the NHS and CBT to be honest. As far as I can see CBT is driven by entrepreneurial doctors who like to make a nice private income on the side and aggrandise themselves with lots of therapist handmaidens. All in the wake of a private practitioner called Sigmund!
     
  12. Dolphin

    Dolphin Senior Member

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    Not for ME/CFS (which is what we are discussing here).

    Also the US is not the only other country in the world. I'm in the Republic of Ireland which has a mix of public and private: very few people with ME/CFS pay for CBT privately (except where they are forced to to try to keep disability insurers happy due to hype of the efficacy of CBT & GET that has come from the UK)

    For one thing, there wouldn't be lots and lots of people employed giving CBT and GET as there are now in the UK. Some of these people then go on to promote these therapies and get research grants who keep the cycle going.

    I really don't think it should be that hard to see that CBT and GET have flourished in the UK for ME/CFS because ME/CFS patients/consumers don't have that much say in what they are offered.

    Also having a situation where one isn't offered much can be better then the situation where the corrosive CBT and GET ideology exists where patients are effectively blamed for not getting better and even where their families can be encouraged not to support them and their maladaptive beliefs and behaviours. Unfortunately we all around the world now suffer due to how the ideologies of CBT and GET have flourished.

    ---

    I don't know what is the best medical system. Each have their pros and cons. In my opinion, how CBT and GET for ME/CFS have flourished in the UK is an example of a con of the NHS system.
     
    Last edited: Oct 15, 2016
  13. JayS

    JayS Senior Member

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    Yes, it is. But to be honest taking into consideration who he is and what he does--people I know have been to his practice, and he is quite the 'wellness' empire builder, if not nearly as offensively as someone like, say, Gary Null--I see this as a positive. He's getting the word out to a good number of people who would otherwise never have heard of PACE, so that he's just repeating what's already known without any additional insight doesn't especially bother me. Beyond that, as long as people understand this guy isn't the second coming, the idea of any medical doctor coming around to the understanding that the near-universal consensus that exercise is appropriate 'treatment' for ME/CFS can be shown to be wrong, again, another positive. There are others like him, people like Andrew Weil, who also have empires and followings. If Hoffman is saying this, I have a feeling Weil is listening, and maybe this might begin a process where he & others stop flogging GET on their websites, too. After all, Hoffman didn't say 'but in spite of these developments, we still recommend exercise...' which is almost what I would've expected. Like when the IOM came out & all these doctors went on television & said they read the report but that exercise is still important.

    I tweeted to Julie & others that I didn't think of this guy as the best source--but, considering, I think this is overall a strong net positive.
     
  14. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    I see your point but the real problem with PACE is that doctors have just believed it without bothering to find out. Believing without bothering to find out is not what people think they are paying doctors to do, and I thought we might be making some progress there!
     
  15. Kati

    Kati Patient in training

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    It's not only that doctors believed it, it's that psychiatry took the monopoly, decided on the guidelines, wrote the Cochrane guidelines, and made it so that physicians not following gudelines would be punished. Doctors in the UK have had no choice but to comply and to believe.
     
  16. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    Not strictly true, Kati. I had the choice and never sent anyone with CFS for CBT or GET. I did my best to look after them in my own clinic. Admittedly I retired in 2010 before PACE was published but I never took any notice of NICE guidelines. My colleagues always did and still do have the choice not to refer for these treatments. The problem is that they don't think. I don't think the problem is the system, it is a profession that is happy not to think - something that seems to have crept up on itself. We always have the choice not to believe, I would say.
     
  17. Kati

    Kati Patient in training

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    I agree with you on this point.

    I find it particularily strange that Dr Nigel Speight was prevented to care for young patients with ME. Seemingly a very smart doctor who was thinking very critically, and then prevented to even speak publicly. We might never know the circumstances surrounding the College's decision, but it just goes on to prove the power that the psych lobby has into silencing those who think.
     
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  18. Barry53

    Barry53 Senior Member

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    Where we used to live, we had a very (very!) good and empathetic doctor, when my wife was diagnosed with ME some 10 years ago. He did not try to pretend he had the answers, and did not try at all to push CBT (which was one of the 'popular' treatments even then). The specialist we also saw, concluded my wife's own determination and ability to pace herself, meant CBT would not be helpful. Where we live now, the doctors are still good, but seem to only be interested in conditions they understand; ME/CFS is not one of them. In fairness they are so busy they scarcely have to to scratch their ears - a 5.30 pm appointment can be seen at nearly 7.00 pm.
     
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