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Help me find some facts! :)

Discussion in 'General ME/CFS Discussion' started by Sasha, Jul 9, 2015.

  1. Sasha

    Sasha Fine, thank you

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    I'm updating some of our static pages and I need some sources for some facts. I'll need more as I go along so I expect I'll post more questions on this thread as things develop.

    Can anyone provide me with:
    • a link to the source for the statement that 25% of PWME are bedbound/housebound
    • a link to an official UK (DoH/DWP/NHS) statement that ME/CFS is an organic (non-psychological) disease
    • sources for the latest figures on prevalence in the UK and worldwide (I have US figures)
    Thanks!
     
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  2. Scarecrow

    Scarecrow Annie Gsampel

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    From 2011

    Prevalence of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) in three regions of England: a repeated cross-sectional study in primary care
    Luis C Nacul12*, Eliana M Lacerda1, Derek Pheby3, Peter Campion4, Mariam Molokhia5, Shagufta Fayyaz1, Jose CDC Leite6, Fiona Poland6, Amanda Howe6 and Maria L Drachler6

    This study estimates minimum prevalence rates as 0.11% for CCC, 0.19% for CDC and 0.03% for ECD (Epidemiological Case Definition, whatever that is)

    Edited: I mistyped the CCC prevalence rate as 0.1%. I've corrected the figure above.
     
    Last edited: Jul 13, 2015
  3. worldbackwards

    worldbackwards A unique snowflake

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    At your service. A statement from a health minister in the Lords from 2008:
    http://www.meassociation.org.uk/2008/06/in-the-house-of-lords-yesterday/

    Note: this dates back to the last Labour government. I don't think that it's come up since.
     
    Last edited: Jul 9, 2015
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  4. worldbackwards

    worldbackwards A unique snowflake

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    The 25% statistic is like a rabbit hole - everytime you follow it, it just takes you to someone else quoting it. If I keep going I'll probably run it down to an old wives tale from the 18th century.
     
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  5. Sasha

    Sasha Fine, thank you

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  6. Sasha

    Sasha Fine, thank you

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    I asked this question a year or two ago (and have googled on myself and can't find it for the life of me) - someone answered and came up with (I think) a DoH source which itself was vague in its basis but did seem likely to be the original source.
     
  7. Scarecrow

    Scarecrow Annie Gsampel

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    FWIW, I think that 25% with severe ME is probably an overestimate. I think that the more severely affected you are, the more likely you are to have a diagnosis. At the milder end of the scale, it might be possible for you to muck along and stay (relatively) lucky.
     
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  8. worldbackwards

    worldbackwards A unique snowflake

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    Best I can do. A statement in the Lords is basically government policy though.
     
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  9. Sasha

    Sasha Fine, thank you

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    Thanks!
     
  10. Scarecrow

    Scarecrow Annie Gsampel

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    Apologies in advance. This is from an April 2009 DWP Training Manual demonstrating exactly what you are not looking for

    https://www.whatdotheyknow.com/request/49426/response/123990/attach/html/5/Chronic Fatigue MED S2 CMEP 0017 Mod 6 V4.doc.html

     
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  11. Sasha

    Sasha Fine, thank you

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  12. Scarecrow

    Scarecrow Annie Gsampel

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    I'm sorry. I'll be very surprised if you find what you are looking for. At best, it'll be about as equivocal as the document I found.
     
  13. Sasha

    Sasha Fine, thank you

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    I've seen a definitive DWP or something statement that ME/CFS is legit. I think someone in the Amazon debacle on the 'all in your minds, you MUP(PET)S' book might have included it in a comment. I've seen it recently.
     
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  14. eafw

    eafw Senior Member

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  15. Scarecrow

    Scarecrow Annie Gsampel

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    @Sasha Still not what you are looking for but getting better. Not definitive - still a mish mash - but I fear I may be looking in the wrong place.

    This is the updated version (April 2015) of the document I linked to before. This is a Health Assessment Advisory Service doc so still DWP. It even mentions SEID.

    http://www.actionforme.org.uk/Resources/Action for ME/Documents/get-informed/News/dwp-haas-mecfs.pdf

    A few extracts
    Also of interest
     
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  16. Scarecrow

    Scarecrow Annie Gsampel

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    Still no link but I've previously seen the 25% figure claim as the proportion of pwME being housebound or bedbound at some point in their lives
     
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  17. Sasha

    Sasha Fine, thank you

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    Pity it starts off with psychosocial bullshit. :bang-head:
     
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  18. Sasha

    Sasha Fine, thank you

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  19. Scarecrow

    Scarecrow Annie Gsampel

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    And continues with it. For this style of document, it's quite subtly couched.
     
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  20. worldbackwards

    worldbackwards A unique snowflake

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    Crikey, they've got it in for old fat women haven't they. That "female and overweight" thing sounds like rubbish to me, something White's pulled out of the Wichita research or something.
     
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