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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Here's what it's like to have Chronic Fatigue Syndrome

Discussion in 'General ME/CFS News' started by Ysabelle-S, Nov 13, 2016.

  1. Ysabelle-S

    Ysabelle-S Highly Vexatious

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  2. worldbackwards

    worldbackwards A unique snowflake

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    I think this is one of the few places that covered the PACE reanalysis. Probably someone high up on the staff is sick or something like that at a guess.
     
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  3. Snowdrop

    Snowdrop Rebel without a biscuit

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    It was a reasonable and good article all the way through til you get to the end:

    quote: And it does seem that the disease is starting to get the attention it deserves. Earlier this month, the NHS announced that is is trialling a therapy to treat two-thirds of the children who suffer from CFS. By using online behavioural therapy sessions on 734 children, the trial aims to adjust children’s sleeping habits and activity levels to try and adapt the way they live and alleviate the symptoms.

    However, for me, being pushed to do more exercise, sleep more, or try therapy certainly wasn’t the answer.

    While any research or trial on the topic can only be a good thing, the next step should be encouraging people to take the time and rest they need when they need it, both physically and mentally – and fostering an environment in schools and workplaces that allows them to do so.

    My italics for the dodgy bits. If only it were true that any research is a good thing. Sadly if it's in support of rolling out CBT as the 'best' hope for sufferers then it is surely not the case.

    Colour me hugely suspicious but it reads like an article that the community could get behind and then needlessly includes EC subtly at the end. Maybe just offhand inclusion but the (b)P(s) crowd have had to become rather more clever about how they present to the public. We'll see if there's more of this to come.
     
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  4. taniaaust1

    taniaaust1 Senior Member

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    I personally thought it was a very good article and smartly done as it was probably one which will fit well and be well accepted by the UK where it was done and by her little comment starting from the "However for me " sharing how the what they are proposing for that trial with children doesnt work for her .. she's actually getting out there they are doing this study "but it didnt work" kind of message.

    If the artical included ranting about the trial, she would of been probably been far less likely to get it published and it would of made her in the eyes of many in the UK out to be one of those trouble making ME/CFS patients out there who say and do all kinds of crazy things... would then make many UK readers just shut down rather then absorb info from article.

    Anyway its a good one as its very truthful, nothing played down but was quite acceptable for the UK

    I really like the fact that she was able to bring up the lake tahoe epidemic in it too (publishing something mentioning this I'd think is a big achievement in the UK!!), too many arent aware this illness can appear in epidemics and that helps get people thinking much more about it.

    Anyway, I think it gets across some very good messages in a way people in UK could take (and most people wouldnt click that link on the study. Unfortunately that linked BBC article does have some false info on it).

    Part of her article

    Its helping get out there that the PACE trial failed.

    Im happy that EC didnt get any media space in this article given to her actual name though it mentioned her study. I wonder if EC will feel like as a bit of a kick people mentioning her study in news articles but not mentioning her at all. With her name not even being here, I dont feel like this article was any way about giving EC attention at all.

    There is nothing either in this article which Simon Wessely or co buddies could put his own comment about the article and mislead others away from actually what this article says. (that's why I think this article is so smartly done, nothing in it can be disputed even with putting it out to the UK audience its going out to).
     
    Last edited: Nov 13, 2016
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  5. Rvanson

    Rvanson Senior Member

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    Yeah, I guess cause PACE is a load of bullstuff.
     
  6. hellytheelephant

    hellytheelephant Senior Member

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    I thought it was a good account, but a pity the focus seems to be only on fatigue....rather than the other symptoms which can be so disabling.
     
    Jennifer J likes this.
  7. Snowdrop

    Snowdrop Rebel without a biscuit

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    Yes, fatigue is often a byproduct of so many other neurological, endocrine, cardio and autoimmune symptoms that it's not really the heart of the problem just the most obvious.
     
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  8. hellytheelephant

    hellytheelephant Senior Member

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    ...I think people often imagine we are sleepy/falling asleep all the time. Quite ironic really, as a) many of us have problems getting to sleep/staying asleep, AND b) Sleep doesn't help much anyway.

    Since joining PR I have become more convinced that the term 'Chronic Fatigue' is unhelpful- many conditions/illness feature long term 'fatigue'....and it doesn't really describe what we have wrong with us....
     
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  9. Snowdrop

    Snowdrop Rebel without a biscuit

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    Yes, we may in fact feel tired but our body is in a state of hyper-arousal due to the disease process--this is why sleep hygiene has only limited success for some of us.
     
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  10. Kalliope

    Kalliope Senior Member

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