Archive of MEA Surveys

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    What was the result of your most recent blood test, or before treatment was given, to assess thyroid gland function?

    • low - hypothyroidism (19%, 66 Votes)
    • borderline low (14%, 48 Votes)
    • normal (44%, 150 Votes)
    • borderline raised (2%, 8 Votes)
    • raised - hyperthyroidism (2%, 6 Votes)
    • don't know (10%, 33 Votes)
    • never done (9%, 31 Votes)
    • awaiting results (0%, 1 Votes)
    • Total Voters: 343

Start Date: April 1, 2017 @ 8:00 am
End Date: No Expiry

    How often do you have sensory symptoms in the skin such as 'pins and needles', loss of sensation, or pain on touching the skin?

    • Constantly (20%, 109 Votes)
    • Frequently (41%, 229 Votes)
    • Quite often (19%, 104 Votes)
    • Occasionally (15%, 85 Votes)
    • Never (5%, 30 Votes)
    • Total Voters: 557

Start Date: March 1, 2017 @ 5:00 pm
End Date: No Expiry

    Where is your normal place of residence?

    • England (76%, 476 Votes)
    • Scotland (10%, 63 Votes)
    • Wales (3%, 22 Votes)
    • Northern Ireland (2%, 13 Votes)
    • Europe outside the UK (3%, 18 Votes)
    • North America or Canada (3%, 19 Votes)
    • Asia or Africa (0%, 2 Votes)
    • Australia or New Zealand (2%, 10 Votes)
    • Other (1%, 6 Votes)
    • Total Voters: 629

Start Date: February 2, 2017 @ 1:18 pm
End Date: No Expiry

    If you have been to an NHS ME/CFS clinic in the past year, how do you rate the advice/information that was given on management?

    • Excellent (5%, 9 Votes)
    • Good (11%, 21 Votes)
    • Adequate (6%, 11 Votes)
    • Mix of good and bad (13%, 24 Votes)
    • Poor (17%, 31 Votes)
    • Dreadful (23%, 42 Votes)
    • No advice given/required (3%, 5 Votes)
    • Waiting for an appointment (3%, 6 Votes)
    • Unable to get a referral (19%, 35 Votes)
    • Total Voters: 184

Start Date: January 3, 2017 @ 4:04 pm
End Date: February 2, 2017 @ 1:20 pm

    Overall, how is your state of health and disability compared to this time last year?

    • Recovered (0%, 2 Votes)
    • Almost recovered (1%, 3 Votes)
    • Much better (2%, 9 Votes)
    • A bit better (13%, 53 Votes)
    • Much the same (29%, 117 Votes)
    • A bit worse (29%, 120 Votes)
    • Much worse (26%, 105 Votes)
    • Total Voters: 409

Start Date: December 1, 2016 @ 11:26 am
End Date: No Expiry

    Following the re-analysis of the PACE trial data, should NICE remove its recommendations on CBT and GET?

    • Yes - definitely (92%, 704 Votes)
    • Yes - to some extent (6%, 49 Votes)
    • Neutral (1%, 4 Votes)
    • Not sure (0%, 0 Votes)
    • Probably not (0%, 3 Votes)
    • Definitely not (1%, 5 Votes)
    • Total Voters: 765

Start Date: November 1, 2016 @ 1:05 am
End Date: No Expiry

    Do you have a diagnosis of PoTS (postural orthostatic tachycardia syndrome) in addition to ME/CFS?

    • YES - definitely (21%, 66 Votes)
    • YES - probably (9%, 29 Votes)
    • Being assessed at the moment (3%, 9 Votes)
    • NOT SURE - never been assessed (46%, 148 Votes)
    • NO (21%, 68 Votes)
    • Total Voters: 320

Start Date: October 3, 2016 @ 3:20 pm
End Date: No Expiry

    Have you applied for a Personal Independence Payment (PIP) from the DWP? If so, what was the initial decision on your claim?

    • Refused at initial application (24%, 53 Votes)
    • Refused on appeal (5%, 10 Votes)
    • Awarded care and mobility at either rate (26%, 57 Votes)
    • Care only at enhanced rate (0%, 1 Votes)
    • Care only at standard rate (7%, 16 Votes)
    • Mobility only at enhanced rate (1%, 2 Votes)
    • Mobility only at standard rate (5%, 12 Votes)
    • Application in progress (8%, 18 Votes)
    • I'm not applying for PIP (24%, 53 Votes)
    • Total Voters: 222

Start Date: September 1, 2016 @ 12:57 pm
End Date: October 3, 2016 @ 3:25 pm

    Should ME/CFS charities that support research be collaborating to help fund a Rituximab trial?

    • Yes (67%, 151 Votes)
    • No (7%, 15 Votes)
    • Not sure (23%, 51 Votes)
    • Neutral (3%, 7 Votes)
    • Total Voters: 224

Start Date: August 4, 2016 @ 5:45 pm
End Date: October 3, 2016 @ 3:22 pm

    Which supplement, if any, have you found to be the most helpful in the management of your ME/CFS?

    • carnitine (2%, 6 Votes)
    • co-enzyme Q10 (9%, 28 Votes)
    • EPA/eicosapentaenoic acid (2%, 7 Votes)
    • magnesium (12%, 39 Votes)
    • multivitamin preparation (2%, 8 Votes)
    • NADH/Enada (2%, 6 Votes)
    • vitamin B12 (11%, 35 Votes)
    • vitamin D (13%, 42 Votes)
    • none of them (30%, 98 Votes)
    • Never taken supplements (17%, 54 Votes)
    • Total Voters: 323

Start Date: July 1, 2016 @ 4:35 pm
End Date: August 4, 2016 @ 5:46 pm