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Article: It took me eight years to convince docs something was wrong after ME left me 'unrecognisable' - Dec 2019

Discussion in 'General ME/CFS News' started by Sly Saint, Dec 24, 2019.

  1. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    https://www.thesun.co.uk/fabulous/10615282/eight-years-convince-docs-me-unrecognisable/

    eta: I wish they would get away from this thing that the 'pain' side of things is Fibro; ie ME causes pain too.
     
    Last edited: Dec 24, 2019
    Chezboo, MEMarge, JemPD and 14 others like this.
  2. MeSci

    MeSci Senior Member (Voting Rights)

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    "a sore throat or sore glands that aren't swollen"?

    I hope this will be changed in the new guidelines. My neck glands are permanently swollen now - have been for years.
     
    MEMarge, alktipping, Mithriel and 7 others like this.
  3. Trish

    Trish Moderator Staff Member

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    But that may not be true for many of us. I think they should only list in the guidelines symptoms that are common to most people with ME. Not everyone has sore throats, and not everyone has swollen glands.
     
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  4. MeSci

    MeSci Senior Member (Voting Rights)

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    But there are probably other listed symptoms that we don't all have, but which are common, for example headaches and feeling dizzy or sick.
     
    MEMarge, alktipping, DokaGirl and 8 others like this.
  5. Trish

    Trish Moderator Staff Member

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    Thats true.
     
    MEMarge, alktipping, DokaGirl and 3 others like this.
  6. Sing

    Sing Established Member (Voting Rights)

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    Yes, they came up with clinical descriptions and criteria, also research criteria, before any really big, detailed studies were made. Do we even have those results yet? I think what we have so far is the accumulation of many small studies, plus »anecdotal » reports and what our few expert clinicians have said.

    I never had swollen glands myself, though in the early years, I had the chronic sore throat and very frequent colds. Hydrocortisone, as well as years ill and probably « readjustments » of my immune system helped the sore throats and colds (but other problems filled right in.

    Worse than « fatigue » or PEM were the cognitive and memory difficulties of my first 10 years, and now in the second decade, I have bad orthostatic hypotension and other dysautonomias.
     
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  7. Mithriel

    Mithriel Senior Member (Voting Rights)

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    Symptoms vary between us and for each of us over time but they are all pointers to having ME. There needs to be a list of symptoms that many people have but not all. This is true for lots of illnesses and is only a problem if ignorant doctors start excluding people because they do not have the classic list.

    Experts who treat lots of patients would be great!
     
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  8. NelliePledge

    NelliePledge Moderator Staff Member

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    held my nose and clicked on the link. It’s not what I would write but there aren’t any major issues with it. John Siddle and ME Association strategy of using personal stories to get their message into local and national media seems to be reasonably effective. Hopefully they will be able to contribute a lot to the GWAS publicity efforts.
     
    MEMarge and Trish like this.

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