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How long did it take you to get a diagnosis of ME/CFS from a doctor?

Discussion in 'General ME/CFS Discussion' started by charles shepherd, Sep 1, 2015.

  1. charles shepherd

    charles shepherd Senior Member

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    How long did it take you to get a firm diagnosis of ME/CFS: MEA website poll for September

    This month's MEA website poll is asking how long it took from the initial onset of symptoms to get a firm diagnosis of ME/CFS from a doctor

    Vote via the MEA website home page at:
    http://www.meassociation.org.uk

    Why are we asking this question:
    http://www.meassociation.org.uk/201...get-a-firm-diagnosis-of-mecfs-31-august-2015/

    Current votes:
    The MEA Quick Survey

    • How long did it take between the onset of your symptoms and a firm diagnosis of ME/CFS being made by a doctor?
      • Less than 3 months (2%, 2 Votes)

      • 3 – 6 months (8%, 7 Votes)

      • 6 – 12 months (21%, 18 Votes)

      • 12 – 18 months (12%, 10 Votes)

      • 18 months - 2 years (14%, 12 Votes)

      • 2 – 4 years (13%, 11 Votes)

      • 5 years or more (26%, 22 Votes)

      • Never had a doctor diagnosis (5%, 4 Votes)

      • Awaiting a diagnosis (0%, 0 Votes)


        Total Voters: 86
     
  2. *GG*

    *GG* Senior Member

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    Concord, NH
    @charles shepherd

    So is this ONLY for UK people or are they looking at the whole planet?

    GG
     
    alkt likes this.
  3. msf

    msf Senior Member

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    1 year, 8 months and counting...and I have been a patient of KDM for over a year.
     
    alkt likes this.
  4. charles shepherd

    charles shepherd Senior Member

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    Thanks - I forgot to mention that as this survey links in with our Xmas fundraising campaign, which will provide some straight to the point educational material here in the UK for doctors and patients aimed at improving early and accurate diagnosis, it is just for UK residents on this occasion.
     
    alkt likes this.
  5. Countrygirl

    Countrygirl I'm with Cheesus

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    Thanks for posting. I missed the poll but have voted now, but couldn't find a box for 15 years :) so five or more will have to do.
     
    alkt likes this.
  6. wdb

    wdb Senior Member

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    It was over 5 years for me but I wasn't really pushing for a diagnosis as all that really means is that they have given up looking for anything treatable.
     
    alkt likes this.
  7. barbc56

    barbc56 Senior Member

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    I was diagnosed within three months of breaking my arm with Fibromyalgia which was the start of this debacle. It was a difficult and complicated. fracture. I had never experienced that particular type of pain before. That was 12 years ago. I've always wondered if I hadn't broken my arm if I would have been diagnosed so quickly.

    Somewhere along the line CFS. I finally found the paperwork a few months ago as I was organizing my medical records, but now can't remember the year. But the CFS dropped off, this sometimes happens in the states where FM is more recognized.

    So I have no idea if I have me/cfs. All I know is that it's close enough because of the symptoms and there are days I can hardly get out of bed, but I'm not bedbound.

    It must have been pure hell for those whose diagnosis was in the netherlands hinterlands for so long.
    Blech! Pooey! Pooey!

    Barb

    ETA Apologies if this thread is Brits only. :whistle: :lol:
     
    alkt likes this.
  8. Apple

    Apple Senior Member

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    <6 months.
    I tested positive for glandular fever at 15 and didn't get better, therefore I had CFS. No further testing beyond the basic bloods. No help/support beyond the offer of antidepressants or CBT ever since. Have to fight incredibly hard to get anyone to look beyond the diagnosis. Now 25 years old and 90% housebound. Yay NHS.
     
    Last edited: Sep 2, 2015
    alkt likes this.
  9. justy

    justy Donate Advocate Demonstrate

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    would be nice to have a box for longer than 5 years - took me about 17 years to get a dx, only to then find out I also have Lyme and co. The state of testing and diagnosing in the UK is appalling everywhere and the misdiagnosis rate is a scandal! there may have been some hope of recovering if I had been properly tested 20 years ago, but now my system is so messed up who knows what the rest of my life will be like.
     
    leela and alkt like this.
  10. charles shepherd

    charles shepherd Senior Member

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    Yes, there ought to be a few more options in the Answers column but the website tool that we use to create the website poll restricts the number of options to 9!
     
    justy and alkt like this.
  11. 2Cor.12:9

    2Cor.12:9

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    @charles shepherd - I hope it was okay that I voted (under 3 months) because it was 29 years ago before they called if CFS. In my area it was called "The Yuppie Flu" and the Dr. called it "Chronic Epstein Barr Virus." She said it would take about 18 months to recover - but I'm still sick.
     

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