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Dr David Tuller: Trial By Error: The CDC Drops CBT/GET

Discussion in 'General ME/CFS News' started by Countrygirl, Jul 10, 2017.

  1. Countrygirl

    Countrygirl ME is not MUS

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    http://www.virology.ws/2017/07/10/trial-by-error-the-cdc-drops-cbtget/

    Here is an extract from the article.

     
  2. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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  3. deleder2k

    deleder2k Senior Member

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    This a major shift by the CDC. They can't do this in secrecy. We demand a statement. Has anyone tried sending them a letter? E-mail? Called them?
     
    Luther Blissett, leela, A.B. and 2 others like this.
  4. Esther12

    Esther12 Senior Member

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    It is a bit strange that they've not said much abut the change.
     
    Luther Blissett, leela, mango and 2 others like this.
  5. Mary

    Mary Senior Member

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    This is great - so glad to see it! One would hope that as the CDC goes, so goes the rest of the country (eventually) -- at least it will be a bit more ammunition for patients when dealing with medical ignorance and harmful treatments -- I know many doctors hate the idea of the patients educating themselves and using the internet to boot, but I don't see how they could object to being informed about the CDC (well, of course they could and I'm sure some will ... :bang-head:)

    Anyways, it's good news! :thumbsup:

    And maybe it might eventually have some impact across the pond? (Though I have no idea how CDC policy influences other nations, if at all.)
     
  6. deleder2k

    deleder2k Senior Member

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    It might. But it to get a grasp at this when they haven't said anything. #TimeToSpeakUpCDC
     
    Luther Blissett likes this.
  7. Snowdrop

    Snowdrop Rebel without a biscuit

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    As a general statement this is true. There is no other mainstream academic or medical establishment view other than the BPS.
     
  8. deleder2k

    deleder2k Senior Member

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    That is sad. Why is it like that in the U.K? Even though many doctors believe in some sort of the BPS model in Norway, things are changing. There is no agreement that CFS is merely a disorder that is maintained by stress, even though one of the kings of the stress theory is from Norway (dr. Wyller). Things are and have changed.

    One of the things that annoys me the most is that the most common medical "dictionary" for doctors in Norway is mostly BPS BS. I have tried contacting those who administer it, but they didn't want to change and revise a lot. I couldn't understand why. They I found out that they dr. i was arguing with had published a couple of CBT/stress theory papers with Wyller. Too bad.

    The Norwegian Directorate of Health says that the evidence for CBT/GET is not very good, but it says that patients can try it. I think they are revising it now. I hope that they will remove it, or at least say that GET is harmful, and that CBT for sure doesn't lead to objective improvements.
     
  9. Snowdrop

    Snowdrop Rebel without a biscuit

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    Hi @deleder2k

    You might want to be more public with things in their dictionary that are potentially embarrassing to them because they are so non-science non-evidence based.

    I wrote some notes on a video by Peter Tatchell that AndyPR uploaded in a thread and it really gives some good advice regarding advocacy.

    Here's the link if you're interested: http://forums.phoenixrising.me/inde...ge-happen-for-human-rights.52693/#post-872566

    I think as time goes on we are in fact getting better at figuring out how to best use our efforts. And that is starting to pay off. But as you know there is so much more to be done.
     
  10. alex3619

    alex3619 Senior Member

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    Let me reply for them - " We made a mistake. Its fixed. We don't want to talk about it."

    ???
     
  11. taniaaust1

    taniaaust1

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    CDC majorly influences other places. Im in Sth Australia, when I went to a GP who didnt know much about ME/CFS, he went to CDC website to look it up :( (ignoring reading the educational stuff I took in to him including the canadian consensus overview book)
    .........

    As far as Im concerned, the CDC should issue a public appology seeing they've harmed many of us throu their info on our illness.
     
  12. taniaaust1

    taniaaust1

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    I havent looked the CDC stuff for ages, wow this page was good https://www.cdc.gov/features/cfsawarenessday/

    https://www.cdc.gov/me-cfs/ oh wow, this is so good that I may be able to use the CDC info for my court case of discrimination and neglect against my Aussie gov disability services. " People with ME/CFS have severe fatigue and sleep problems. ME/CFS may get worse after people with the illness try to do as much as they want or need to do."

    https://www.cdc.gov/me-cfs/treatment/index.html Check out their treatments.. WOW no CBT or GET mentioned at all! Plus they even get warnings re giving us anti depressants or and anti anxiety drugs. wow.. finally good info. I'd never thought I would see the day when the CDC got their info right to the point in which I felt comfortable to recommend their website to anyone

    the only bad advice in their treatment section I can see is in their sleep treatment... where it says to limit daytime sleep to 30mins in total. A severe ME/CFS person or one who is very crashed, that just isnt enough and wont allow any recovery.

    Is anyone able to work with the CDC to alter that? I'll start up a new thread. New thread to discuss the CDC changes http://forums.phoenixrising.me/index.php?threads/cdc-website-changes.52749/


    A big thank you to David Tuller!! You should get a award for the what you've done for us
     
    Last edited: Jul 11, 2017
  13. Jonathan Edwards

    Jonathan Edwards Senior Member

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    I disagree. The comments I have been making of late in various journals and reviewer's reports are the mainstream academic view in the UK. It is just that 95% of UK medical academics have never thought twice about ME/CFS and have never heard of the BPS mumbo jumbo. For academics still in post it is too much hassle making their views known - even if they are interested. Psychological medicine certainly seems to be in deep trouble - but then that seems to be an international problem.
     
  14. Stewart

    Stewart Senior Member

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    I think getting a statement from the CDC explaining the reasons for this change is the single most useful thing that could be done before the NICE consultation closes in 10 days time. Do we know of anyone that has an existing line of communication with them?
     
  15. Daisymay

    Daisymay Senior Member

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    First thanks so much Professor Edwards for standing up for PWME.

    I'm sure most doctors and academics are very busy people but there is surely a professional and moral obligation for them to speak out over this.

    So surely doctors should follow "First do no harm" and second don't sit back and let harm be done to patients by members of your profession. Defend patients, don't be an enabler of the abuse.
     
  16. alex3619

    alex3619 Senior Member

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    Its also a long standing problem. When hasn't psychological medicine been in trouble? Its just better or worse in places due to specifics. All countries are affected. The UK is just more prominent because poor medical standards are supported by NICE along with the good standards, and because the UK is where the main researcher base is for this kind of thing, along with some small effort in parts of northern Europe.

    I have long held the view that the main problem in medicine stems from the bureaucratic-medical culture (medical systems alongside bureaucratic watchdogs) combined with lack of information. Doctors operate in uncertainty, and the bureaucratic watchdogs often create "guidelines" to give the impression of certainty, and frequently to contain costs.

    I am in favour of more medical training, especially in science and evidence based practice (largely just scientific principles, statistics, and logic, with less emphasis on central authorities) , and more medical autonomy.
     
  17. Jonathan Edwards

    Jonathan Edwards Senior Member

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    The problem is that we are now in a situation where a doctor who expresses an opinion that is considered 'troublesome' may be told that their services are no longer required by their employer. Exactly that has recently happened to the chief of the Department of Medicine at UCL.

    When I resigned from the NHS I did so because I did not feel I was able to continue to provide a safe or effective service. I had to consider very hard which would do more harm: to carry on providing poor care or to resign and leave the patients without continuity of care and my unique expertise. I decided to leave because my second in command knew all the patients well and had acquired the same special expertise. But it was not easy.

    Doctors cannot be blamed for not speaking out. If they do they get weeded out and the situation is worse. The reason I can write about PACE is that, unlike some others, nobody can ring up my employer and suggest a change of contract might be in order - which as we know has happened more than once over PACE.
     
  18. Daisymay

    Daisymay Senior Member

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    Point taken but what an utterly shocking indictment of the state of the NHS/medical professions.

    Who are the ones ruling things in this manner, the hospital management? The government? The medical establishment "elites" with vested interests to promote their specific agendas eg BPS? Or all of the above?
     
  19. alex3619

    alex3619 Senior Member

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    All of the above, though in differing degrees. And more. Its vastly complicated, and there are no simple answers. What is required however is the medical profession to engage the public and other stakeholders into supporting a move for the better. Alternatively the public can organize and bring medical professionals in. Or both of these, which is more likely.
     
  20. Large Donner

    Large Donner Senior Member

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    Oh you are such a conspiracy theorist.!! :p
     

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