Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Tweets on talks on CFS by Peter White, Julia Newton & Alastair Miller

Discussion in 'General ME/CFS News' started by Tom Kindlon, Oct 17, 2014.

  1. Tom Kindlon

    Tom Kindlon Senior Member

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    [I found the ones by Peter White the most interesting e.g. "White: only treatments that have bn successful for CFS derive from psychiatry/psychology #GAP2014."


    They're in reverse chronological order i.e. newest first]


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  2. duncan

    duncan Senior Member

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    It's like eavesdropping on a clandestine conversation about a new story line between J.R.R. Tolkien and C.S. Lewis and Robert E. Howard - with a comparable amount of fantasy.

    I am particularly drawn to the reference attributed to Miller that CFS is often associated with viral infections and adverse life events. Everyone, pretty much I should imagine, has had viral infections and adverse life events. Everyone.
     
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  3. Sidereal

    Sidereal Senior Member

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    Disturbing comments by White, as usual, particularly the bit about everyone with CFS being able to feed themselves and that if they don't eat they have an eating disorder. I know from personal experience that he's wrong.
     
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  4. catly

    catly Senior Member

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    Maybe Ron Davis needs to have a conversation with him.
     
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  5. Snowdrop

    Snowdrop Rebel without a biscuit

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    It really is very NICE of P White to constantly provide us with his perspective on this illness. As his thinking is 'out there' for everyone to view in perpetuity.

    I guess that he has no qualms about how his opinions will be viewed in the long term.
     
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  6. biophile

    biophile Places I'd rather be.

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    Why do I get the feeling this is based on an uncontrolled study which fails to account for natural course?

    [edit: It is! Thanks to A.B. for pointing out the relevant thread: http://forums.phoenixrising.me/inde...pilot-study-on-the-comparison-with-hea.32563/ ]

    APT is not the same pacing as done by many other patients.

    Nonsense. Patients may be too ill to cook or eat properly. Patients may have nausea, digestion issues, or reduced appetite. Treatments may also have side-effects which adversely affect eating. e.g. Tramadol.

    These treatments have an unfair advantage, as treatments from other fields of medicine are expected to demonstrate efficacy in placebo-controlled trials, but CBT/GET for CFS gets a free pass. Nonblinded trials into a range of quackery are probably just as effective as CBT/GET for CFS.

    Yet research funding for CFS is chump change.

    And we wonder why almost half of patients in the clinic don't have CFS?

    CFS probably isn't the same as ME if 'CFS' means chronic fatigue e.g. Oxford criteria.

    Plenty of researchers seem to have their own fixed views.
     
    Last edited: Oct 17, 2014
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  7. Valentijn

    Valentijn Senior Member

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    Peter White is going to look like such an idiot once we have proof of biological pathology.

    Oh wait, we already do! I guess he can't understand the two-day CPET research, nor comprehend the rather different CPET and blood results obtained from controls who actually are deconditioned, versus ME patients.

    How long til he's shouting this on a street corner instead of getting yawned at in lecture halls?
     
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  8. Cheshire

    Cheshire Senior Member

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    I don't understand. What is this supposed to be humor, cynism?
     
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  9. A.B.

    A.B. Senior Member

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    NK17, WillowJ and biophile like this.
  10. jimells

    jimells Senior Member

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    No, just the poster's daily experience. Currently I am only able to get to the grocery about twice a month because I don't have the energy to drive 20 miles round trip. And to think I used to drive 500 miles a day, five or six days a week!
     
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  11. Cheshire

    Cheshire Senior Member

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    Ok, thanks! I thought it was Peter White talking, and making fun of us. :vomit:
     
  12. Valentijn

    Valentijn Senior Member

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    It was the personal comment from the twitter user who was also posting Peter White's comments so that the rest of us could point and laugh.
     
  13. user9876

    user9876 Senior Member

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    The problem is he hasn't bothered to listen to his patients and understand what CFS is and he is just equating it with feeling tired. Hence he doesn't appreciate issues such as nausea, loss of appetite as well as the issues of getting support to get meals when severely affected.

    When he claims psychological treatments are the only ones to have success we should remember that he had to change practically every element of the PACE protocol to get results that were still way below what he predicted. Including changing the definition of recovered to be below the trial entry criteria and suppressing the results as defined in the protocol. So does he really believe what he is saying he must know his results are rubbish and don't support his theories.
     
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  14. A.B.

    A.B. Senior Member

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    Is there more information about Dr Newton's point of view?

    Is there a video of the event available?
     
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  15. Snow Leopard

    Snow Leopard Hibernating

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    A particularly interesting claim right there...

    It's funny how we sometimes mistake the trees for the forest.
     
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  16. WillowJ

    WillowJ คภภเє ɠรค๓թєl

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    It's weird how a supposedly qualified psychiatrist does not know that the the necessary prerequisite for diagnosis of eating disorders is a deliberate change in eating habits specifically due to body dismorphia (fixation on appearance, usually with a distorted view of self-appearance). You cannot have an eating disorder without fixation on strictly controlling body shape or size, and this must be the cause of change in eating habits.

    (I read up on this because I get accused of having one, solely due to being underweight, from time to time.)

    Saying you are too sick, too exhausted, too nauseated, too weak, or just don't feel hungry is not an eating disorder.

    Suggesting otherwise is a massive fail, and risks missing potentially hugely important medical pathology. This is dangerous.
     
    Last edited: Oct 24, 2014
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  17. Esther12

    Esther12 Senior Member

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    re trouble feeding oneself: he seems to take no account of the real poverty a lot of patients find themselves in. That, along with difficulty shopping and cooking, can make it a lot more difficult to eat properly because the sort of convenient foods that do not take a lot of energy to prepare are often more expensive too. I had a period of being really broke, and it did mean that I ended up eating less than I should... that's not an eating disorder!
     
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  18. Dolphin

    Dolphin Senior Member

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    Peter White/St Bartholomew's Hospital Chronic Fatigue Services comments on the draft NICE guidelines

    One can find more of such quotes in the link in my signature.
     
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  19. Valentijn

    Valentijn Senior Member

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    Generally I agree ... if someone has an illness, that's far more likely to be the cause. And Peter White needs some intensive psychotherapy himself, regarding his various delusions about ME/CFS.

    But anorexics and bulemics will often claim a medical reason for their low weight. A girl in my dorm at uni did that (hogging the one working toilet on our floor in the process :meh:), and when I called them I was told by uni Health Services that they wouldn't get involved unless she approached them. Her medical claim was rather bizarre, involving a supposed car accident, but she admitted she had a problem and thanked me after I printed out a "how to get help" brochure and a brief personal letter and slid it under her door.
     
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  20. WillowJ

    WillowJ คภภเє ɠรค๓թєl

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    why would they just remove the comment, I wonder? I would edit to "dietitian or gastroenterologist". There is nothing that says a patient with a CFS diagnosis cannot have celiac disease, Crohns, etc. And dietitian is perfectly well qualified to diagnose and treat eating disorders, in case that's present. (edit: not that it's bad to have a psychiatrist do this, but it's unnecessary to complain that there is no one to diagnose/treat eating disorder, on the original list)

    However it is 100% untrue that persons with CFS do not lose weight or experience malabsorption, though this might be due to comorbid IBS (yes, you can have that from "IBS"). Maybe this is not in the research, but that is only because no one thought to ask.

    Edit: of course the GI problems or "IBS" could be from the ME itself
     
    Last edited: Oct 24, 2014
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