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NHS website entry for CFS/ME changed

Discussion in 'General ME/CFS News' started by slysaint, Sep 4, 2017.

  1. slysaint

    slysaint Senior Member

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    I noticed this a few days ago and @RogerBlack posted the link to the archived version from Feb.
    The pages on CFS , ME were reviewed in May this year and have been updated/changed.

    I won't go through all the changes as there are too many and the way they are presented ie headings etc have changed so difficult to make direct comparisons.

    this was the original overview:

    https://web.archive.org/web/2017020...onic-fatigue-syndrome/Pages/Introduction.aspx

    "Introduction

    Chronic fatigue syndrome (CFS) causes persistent fatigue (exhaustion) that affects everyday life and doesn't go away with sleep or rest.


    CFS is also known as ME, which stands for myalgic encephalomyelitis. There's some debate over the correct term to use for the condition, but these pages will refer to the condition as CFS.


    CFS is a serious condition that can cause long-term illness and disability, but many people – particularly children and young people – improve over time."

    And this is what it says now:

    "Chronic fatigue syndrome (CFS) is a long-term illness with a wide range of symptoms. The most common symptom is extreme tiredness.

    CFS is also known as ME, which stands for myalgic encephalomyelitis. There's some debate over the correct term to use for the condition, but these pages will refer to it as CFS/ME.

    CFS/ME can affect anyone, including children. It's more common in women, and tends to develop between your mid-20s and mid-40s."

    the video by charles shepherd has been 'reviewed' but is the same one as before.

    Also in the current version:
    "
    Living with CFS/ME
    Living with CFS/ME can be difficult. Extreme tiredness and other physical symptoms can make it hard to carry out everyday activities. You may have to make some major lifestyle changes.

    CFS/ME can also affect your mental and emotional health, and have a negative effect on your self-esteem."


    They were pretty awful before but I think they are now worse.
    Who if anyone was consulted re change of content? @charles shepherd
     
  2. Invisible Woman

    Invisible Woman Senior Member

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    .....there always has to be the little dig about mental health.......

    Wouldn't mind so much if a general disclaimer that being chronically ill may affect some people's mental health was slapped across everything.

    In our case they are weasel words.....
     
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  3. arewenearlythereyet

    arewenearlythereyet Biscuit Antagonist

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    I can just imagine how an employer would use that...advise you to get more sleep probably and ask whether you wanted an appointment to see the work "life counsellor".

    When I got diagnosed I consulted the web pages for advice. I think I find the most misleading was this:

    "Most people with CFS get better over time, although some people don't make a full recovery. It's also likely there will be periods when your symptoms get better or worse. Children and young people with CFS/ME are more likely to recover fully."

    This hasn't changed. Most people?

    Perhaps this needs rephrasing to "Currently there is no cure or effective treatment. Most people won't recover fully and it is likely you will have to manage symptoms by pacing activities for the rest of your life".

    At least you can start getting your head around it straightaway and it would make you question the validity of the lightening process etc when you stumble on it online.

    I know dream on !
     
  4. charles shepherd

    charles shepherd Senior Member

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    I wasn't consulted about the content of this update

    CS
     
    mango, MEMum, Jennifer J and 7 others like this.
  5. anni66

    anni66 mum to ME daughter

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    can someone please knock the " extreme tiredness" on the head and stick to defined condition parameters - MUS is muscling in.
     
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  6. slysaint

    slysaint Senior Member

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    They use your video and the only link on the first page is:
    "
    As well as asking your family and friends for support, you may find it useful to talk to other people with CFS/ME.

    ME Association is a charity that provides information, support and practical advice for people affected by the condition. You can find a local support group on their website."

    although there are links to MEA, AfME and AYME on the external links part on the treatment page (I have written to them to tell them that AYME no longer exists and maybe they should put TYMEs trust there).

    don't you think they should have consulted the MEA?
     
  7. Subtropical island

    Subtropical island

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    This bears repeating.
     
    Wonko, lauluce, MEMum and 1 other person like this.
  8. Snow Leopard

    Snow Leopard Hibernating

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    Anyone who describes it as "extreme tiredness" either has no experience with CFS patients or is not fluent in English.
     
  9. lauluce

    lauluce as long as you manage to stay alive, there's hope

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    argentina
    Indeed, that is an excelent description of how it is to live with this disease... I don't know what criteria they use to hire the people that write these pages, they could have hired you!
     
  10. lauluce

    lauluce as long as you manage to stay alive, there's hope

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    argentina
    This is know to everybody here, but I would rather describe it as a combination of the worst flu you ever had increased ten times, hangover, and what I think would be the results of a very powerful poison, every day, every month, every year, for the rest of your life
     
  11. Cinders66

    Cinders66 Senior Member

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    It does say about feeling unwell but misses the fatiguabilty rather than tiredness aspect

    I find the prognosis thing most wrong and misleading and are they aware of how few severe actually get specialists help?

    Next for review 2020. Perhaps if many write to them they'd change it.

    I think we in uk should push for SEID to replace CFS, it's such a damaging name and concept AFAIC. Everyone I meet thinks my symptoms and payback is fatigue alone
     
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  12. Wonko

    Wonko Senior Member

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    New names - Unfortunately TB is already taken (totally b@@@ered), is TF taken? (totally fu@@ed) - accurate with the added advantage of being able to get away with swearing at doctors, civil servants. nosy neighbours etc.
     
  13. Cinders66

    Cinders66 Senior Member

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    It's still pushing aerobic exercise with no caveats too.
     
  14. slysaint

    slysaint Senior Member

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    Yes it's awful.
    But were any of the ME charities or patient groups consulted?
    Did any of the charities or patient groups contact whoever is responsible for reviewing the entry? (I would have thought this would be 'in the calendar' and the date for review is clearly mentioned on the site).
    And again, although it gives the link to the NICE guidelines, why do the NHS still not recognise/mention PEM?
    You also would have thought that the NHS would know that the NICE guidelines are(potentially) under review and so it might have been better to wait for their decision?
     
    Last edited: Sep 5, 2017

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