Archive of MEA Surveys

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    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

    Have you had a blood test (25-hydroxyvitamin D) to check your vitamin D level? And if yes, what was the result before any treatment?

    • Raised (2%, 8 Votes)
    • Normal (10%, 34 Votes)
    • Low (22%, 77 Votes)
    • Very Low (30%, 105 Votes)
    • Awaiting result (0%, 0 Votes)
    • No - never tested (36%, 131 Votes)
    • Total Voters: 355

Start Date: June 1, 2016 @ 5:57 am
End Date: October 3, 2016 @ 3:24 pm

    How disabled are you at present on the MEA Disability Rating Scale? The scale is in 'Quick Links' immediately to the right of this question

    • 100% (3%, 9 Votes)
    • 90% (4%, 13 Votes)
    • 80% (14%, 42 Votes)
    • 70% (20%, 59 Votes)
    • 60% (21%, 62 Votes)
    • 50% (12%, 35 Votes)
    • 40% (12%, 35 Votes)
    • 30% (8%, 25 Votes)
    • 20% (3%, 8 Votes)
    • 10% (2%, 7 Votes)
    • 0% (1%, 3 Votes)
    • Total Voters: 298

Start Date: May 10, 2016 @ 8:56 am
End Date: October 3, 2016 @ 3:24 pm

    What happened if you recently applied for, or tried to renew, a Blue Badge (for disabled parking)?

    • Approved (25%, 52 Votes)
    • Approved following appeal/reconsideration (3%, 6 Votes)
    • Refused on first application (4%, 9 Votes)
    • Refused on renewal (3%, 6 Votes)
    • Awaiting decision (4%, 9 Votes)
    • Never applied for one (39%, 80 Votes)
    • Automatic acceptance following DLA or PIP mobility award (22%, 43 Votes)
    • Total Voters: 205

Start Date: April 2, 2016 @ 11:19 am
End Date: October 3, 2016 @ 3:23 pm

    Should or should not the anonymised data from the PACE trial be released for independent analysis?

    • Should be released (99%, 1,459 Votes)
    • Should not be released (1%, 8 Votes)
    • Not sure (1%, 11 Votes)
    • No opinion (0%, 2 Votes)
    • Total Voters: 1,480

Start Date: March 1, 2016 @ 11:02 am
End Date: October 3, 2016 @ 3:23 pm

    How long did it take from the onset of your ME/CFS symptoms to a doctor confirming a diagnosis of ME/CFS?

    • Less than 3 months (4%, 26 Votes)
    • 4 to 6 months (14%, 91 Votes)
    • 7 to 12 months (15%, 96 Votes)
    • 13 to 24 months (17%, 111 Votes)
    • 2 to 5 years (26%, 172 Votes)
    • 6 to 10 years (8%, 55 Votes)
    • Over 10 years (11%, 70 Votes)
    • Not certain (2%, 10 Votes)
    • Never confirmed by a doctor (3%, 25 Votes)
    • Total Voters: 656

Start Date: February 1, 2016 @ 10:26 am
End Date: March 10, 2016 @ 9:39 pm