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Hunting down the cause of ME/CFS & other challenging disorders - Lipkin in London
In a talk to patients in London on 3rd September, Dr. W. Ian Lipkin described the extraordinary lengths he and his team are prepared to go to in order to track down the source of an illness, with examples ranging from autism to the strange case of Kawasaki disease.
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UK NHS Choices web site "

Discussion in 'Action Alerts and Advocacy' started by olliec, Jul 1, 2011.

  1. olliec

    olliec

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    I made a complaint to NHS Choices recently:

    =====
    Your page on Chronic Fatigue Syndrome says "Most people improve over time"
    I don't believe this to be true. Can you please check your sources as I'm not aware of any studies that show this to be true, and in fact studies show the illness does NOT get better over time and can in fact get worse.
    http://www.nhs.uk/Conditions/Chronic-fatigue-syndrome/Pages/Introduction.aspx
    ======

    They replied:

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    The information on the prognosis was taken from a number of studies, such as:

    Chronic fatigue syndrome: aetiology, diagnosis and treatment - BMC Psychiatry 2009

    Outcome and Prognosis of Patients With Chronic Fatigue vs Chronic Fatigue Syndrome
    Arch Intern Med. 1995;155(19):2105-2110.

    The prognosis of chronic fatigue and chronic fatigue syndrome: a systematic review - Q J Med 1997; 90:223233

    NICEs clinical guidelines on CFS (http://www.nice.org.uk/nicemedia/live/11824/36193/36193.pdf) also state:

    Most people with CFS/ME will improve over time and some people will recover and be able to resume work and normal activities.
    However, others will continue to experience symptoms or relapse and some people with severe CFS/ME may remain housebound.
    The prognosis in children and young people is more optimistic

    So at the current time we do not see a need to change the information, though we are always willing to consider any new evidence on any issues we cover on our website.
    Many Thanks,

    Editorial Team,
    NHS Choices
    =====

    Can any of you super-organised folk who keep track of research give me a set of high quality studies to respond with to refute their position?

    David Bell seemed to suggest at the IiME conference that many people get better, temporarily, at about five years, but that long-term the majority remain sick, but just adjust their mindset to make life tolerable (which I suspect some studies have not taken into account - subjective assessment of illness seems particularly poor for ME/CFS people).
     
  2. Snow Leopard

    Snow Leopard Senior Member

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    Australia
    This is the paper (systematic review) that is typically referred to:
    http://occmed.oxfordjournals.org/content/55/1/20.abstract
    Some CFS patients do report improvements after their initial diagnosis. But how much of this is due to optimism and inflated self efficacy and how much is due to actual reduction in disability? The above paper also shows that most will continue to have symptoms for a long time, even if they report minor improvements.

    I think instead of "improve over time", the correct wording should be along the lines of "improve up to a point". Improve over time suggests progressive improvement towards a normal/healthy state, which is rare.
     
  3. jace

    jace Off the fence

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    England
    David Bell said, at Invest In ME, that of the 210 people he assessed in his recent study, when he asked them the simple question "are you still ill?" 80% said no, and 20% said they were. But when he looked more closely at the 80%, and used some objective measures of health, such as how long each day they remained active, he found that half were managing their energy carefully, and had obviously learned to cope with the disease. The 20% who said they were still sick, were really poorly. In all, of the original cohort, 72% were still suffering with ME/CFS, only 8% had truly recovered, and 20% were coping well, but still symptomatic to some degree.

    More about that study here http://www.masscfids.org/resource-library/3/311 but unless it's been published in a medical journal, it may not help you in your mission to re-educate the NHS.

    This page has more references for you to check on at the bottom of the webpage. http://www.supportme.co.uk/prognosis.htm
     
  4. Snow Leopard

    Snow Leopard Senior Member

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    That's the problem with self-report questionnaires: people are naturally optimistic even when they have a chronic disease.
     
  5. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    NYC (& RI)
    Ollie, you are right. This is the standard BS from the charlatans. It is worded in such a way that it clearly misrepresents all the science on prognosis. They use the usual weasel words to do this- 'others', 'some', 'improve' 'will' and 'may'. Their tricky wording lends the false impression that most 'recover' and 'some' 'may' remain housebound. This makes it seem that if you're typical you will 'improve', perhaps 'recover' and that it is not certain if anyone will remain housebound (through the use of 'may'- 'some may remain housebound'). They start and end with the good news so that you will remember those.

    I remember looking up all the prognosis papers which looked at people over a course of years- I think the shortest was something like 5 years and the longest was decades. They all said between 0% and 30% 'improved.' Throwing out the highest (an NIH meta-analysis, ie BS) and lowest two studies, they were all between 2 and 14% 'improved' over however many years the study looked at. Most of them were 5-8%. Note these were improved. As I remember it, there weren't any that had stats for 'recovery.'

    So, as I remember it, my summary of the studies was that most people remained at approximately the same level of disability. Some deteriorated, with 25% being bedbound, wheelchair bound and/or housebound. And a very small minority 'improved.'
     
  6. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    Concord, NH
    Yeah, I think this line: Most people with CFS/ME will improve over time and some people will recover and be able to resume work and normal activities.

    What does recover mean? I was at the MA CFIDS talk recently, and I asked Dr. Bell about exercise or activity, and he gave me the impression that it is not defined scientically. Every person has there own perception of what is exercise and activity, to them.

    Also, so if you can resume work, then you are recovered/cured? Do people have much choice, but to return to work? Or do they just suck it up, and trudge on, but don't have much of a life otherwise?
     
  7. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    This is a great point. Because disability payments and medical treatment are so often denied, most sick pwME are forced to go back to work which further deteriorates their health.
     
  8. SilverbladeTE

    SilverbladeTE Senior Member

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    Somewhere near Glasgow, Scotland
    Yeah, you may learn to COPE better, but short of a minorioty who happily recoveror perhaps more likey, go into remission, most folk tend ot stay roughly the ame, but it can swing
    I ws "Light", stress made it go to "Moderate" (pituitary problems etc)
     

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