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Never Ask Us if We're Hungry -- The Answer's Always No
There are three of us here and for many years, none of us ever got hungry. When our brains would turn to mush, when our faces would go numb, and we would start the invisible vibration which is the signature dance of ME/CFS, we knew we needed to eat.
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Editorial in British Medical Journal

Discussion in 'General ME/CFS News' started by Kati, Feb 10, 2010.

  1. Dolphin

    Dolphin Senior Member

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    This Stulemeijer et al study was one of the three studies in this review.
    The authors didn't release the actometer data when they first published it (actometers tells one how much activity the wearer did)

  2. Dolphin

    Dolphin Senior Member

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  3. Koan

    Koan Be the change.

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    Does this sound completely nonsensical to anyone else? Am I just deep in a dense fog? I'm assuming this results from participants saying, "Yes, yes, I'm less fatigued! Please can I stop now?!"
  4. PoetInSF

    PoetInSF Senior Member

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    SF
    In other words, if you improve, you don't have true CFS. Conversely, if you have true CFS, you are not going to improve. I'm sure people like Bell intend well for CFS patients. They just don't realize the damage they do in the process.
  5. usedtobeperkytina

    usedtobeperkytina Senior Member

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    No, that's not what I meant. He was saying that depression is improved by getting out of the house and some activity. But CFs patients see symptoms get worse if they get out and are active. Basically, CFS has PEM, but depression doesn't.

    Of course, some people with CFS improve, in fact, I would say majority see some improvement in years. But, they likely improved by pacing, reducing stress, improving sleep quality, etc. They didn't see improvement because they got more active and got around people and went out shopping more.

    Tina
  6. Dolphin

    Dolphin Senior Member

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    That is one possibilty. Also, generally fatigue is pretty subjective so you might convince yourself you feel a bit less fatigued without it really meaning very much.

    But they have claimed that CBT leads to full recovery in 23% of cases (we don’t have actometer data for that study) and generally is an effective rehabilitation strategy while this data looks like this is a joke: people may walk a bit more as part of the program, but they end up cutting other activity from their lives to do it.

    Personally, a lot of people I know with ME/CFS don’t have lots of energy to waste. Dropping other activity may mean other people have to do more work for them around the house, they have less energy for their kids and/or less energy for their partner, less energy for paid employment, etc. In this context, giving up these things just so you feel you are doing something by going for a walk (and your doctor/therapist feels good), seems like it could be a waste of "good" energy in many cases.
  7. Dolphin

    Dolphin Senior Member

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    Link to rapid responses so far

    Rapid responses so far

    http://www.bmj.com/cgi/eletters/340/feb11_1/c738

    It would be worth picking holes in the original piece - some points have not been made yet. The more people that do this, the worse the original piece looks and the more likely they are to feel that they should publish one or more responses (I would hope).
  8. Koan

    Koan Be the change.

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    Yes, and, given that ME is a remitting and relapsing illness, at any given time a certain percentage of people would be entering remission which would account for some of these people. In addition, in a poorly identified cohort, a percentage of people would be suffering from clinical depression which might respond in this way. And, some pay have been suffering from post viral fatigue which was resolving. It is not difficult to account for this 23%.
  9. jackie

    jackie Senior Member

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    heart sinking, too...but must remain articulate...so.....


    LIAR LIAR PANTS ON FIRE.



    j
  10. PoetInSF

    PoetInSF Senior Member

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    Yes, but getting out of the house for a light activity, if they are able to manage, can also help some CFS patients feel better. However well intentioned, I'm afraid putting too much emphasis on the organic nature (and infection) in this fashion can have a side effect of misleading patients into thinking that they cannot be helped.

    No Christmas shopping for CFS patients though, I agree. It almost killed me for a few days!

    I mostly agree.
  11. Gerwyn

    Gerwyn Guest

    there is no statistical dfference at all .THAT IS WHY THEY USE THE TERM CLINICALLY SIGNIFICANT an old trick subjective self report answers they can manipulate even this is rubbish you could drive a bus through the confidence intervals .once again no improvement in any objectively measued parameter
  12. Gerwyn

    Gerwyn Guest

    they are mixing up ME and MS
  13. jace

    jace Off the fence

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    Off the top of my head, and bearing in mind that I am following media coverage with great interest, I would say that statement was b**ls. There have been accurate reports of Lynn Gilderdale's decline, bless her soul, but most media coverage assumes that most people get better within a few years, and we are constantly told of people who have fully recovered within a year or three including the Minister of State of the Department of Work and Pensions and Colin thingy who runs the Sussex ME/CFS society (measussex.org.uk) Interestingly, he states he was running a hotel while he was ill with ME.

    The psychologists and psychiatrists lobby, in general, have the floor, with a few notable exceptions. They are showing signs of paranoia. Interesting times.
  14. Gerwyn

    Gerwyn Guest

    I have written to the BMJ

    refer to the article "Air of defeatism exists within the medical profession that chronic fatigue syndrome can be treated" This article trivialises the severity of the illness and contains a number of factual inaccuracies.

    NICE is selectively quoted.Nice actually point out that CFS/ME is a very serious real illness of yet unknown origin and can be more disabling as multiple sclerosis or late stage aids---There is no known cure or effective treatment.

    This should have been quoted.

    NICE specifically make the point that CBT is not a treatment for the symptoms but an aid to help patients come to terms with their illness. Is this what is meant by" working"?

    CBT has never shown any objective benefit

    Some studies, using self reporting, have shown a subjective benefit on fatigue i.e as assessed by the patient, but no effect at all on activity levels when measured scientifically.

    The confidence intervals in these studies are so wide as to make extrapolation into a general ME/CFS population impossible.The studies are clearly underpowered.

    Many sufferers take their lives because living with the symptoms is unbearable These symptoms cannot be treated

    There is no robust scientific evidence to support GET although there was a recent heart attack!

    Would any pharmaceutical product obtain a product licence based on patient self evaluation----or with the confidence interval values associated with CBT studies.The answer is a resounding No!

    Why therefore are sufferers of ME/CFS classified by the WHO as a neurological disorder only offered CBT

    Why were NICE instructed to ignore all the biomedical evidence when draughting their guidelines

    Yours Sincerely,
    G J Morris BSc(Psych) LLB(Lond) Dip Law
  15. Dolphin

    Dolphin Senior Member

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    Well done.

    Fingers crossed it goes up.

    As I said, people might increase their chances by quote at least one reference.
    For example, you quoted the NICE Guidelines (1).

    Reference:
    1. National Institute for Health and Clinical Excellence. NICE clinical guideline 53: Chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy). 2007. www.nice.org.uk/CG53.
    (borrowed that one from the bottom of the article).

    The reference wouldnt have to be exactly in the right format, just put something down the bottom and it looks more like a letter to the editor of a medical journal and harder to turn it down.
  16. Gerwyn

    Gerwyn Guest

    good point
  17. Dolphin

    Dolphin Senior Member

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    Good points - the trial in question was uncontrolled (Knoop, 2007).
    Also the definition of recovery was just not very low (bottom 15 percentiles) scores on a few questionnaires doesnt mean they were really recovered.
  18. V99

    V99 *****

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    More responses to the editorial.

    http://www.bmj.com/cgi/eletters/340/feb11_1/c738#231202


  19. Dolphin

    Dolphin Senior Member

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    The BMJ hasn’t put up any responses to this article in the last two days (but has for others).

    I know at least two people who sent in replies (one asked me about references so I presume they included one or more).

    So it’s probably best not to waste one’s time sending in a reply until we see that more appear.

    In the past, the BMJ let lots and lots of responses through in reply to other articles and papers.
  20. Dolphin

    Dolphin Senior Member

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    Back to normal again. Four comments went up there now (they usually put up comments once per day and had already put comments up today so I thought it was it for today)

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