MEA Surveys

Current Survey

    If you have ME/CFS and have made use of the MEA Covid vaccine priority template letters (for GPs and/or CCGs/Health Boards), what was the outcome?

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Archive of Surveys

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

How do you rate the management of your ME/CFS that is provided by your usual NHS GP?

  • Excellent (4%, 19 Votes)
  • Good (9%, 44 Votes)
  • Fair (7%, 33 Votes)
  • Mixed - good and bad (16%, 77 Votes)
  • Poor (23%, 114 Votes)
  • Dreadful (23%, 114 Votes)
  • I don't have a GP (0%, 0 Votes)
  • I have no contact with my GP re: ME/CFS (18%, 87 Votes)
  • Total Voters: 488

Start Date: January 4, 2016 @ 9:23 am
End Date: March 10, 2016 @ 9:38 pm

If you've had a DWP benefit medical assessment with Maximus (who took over from Atos in April) how do rate them?

  • Excellent (7%, 2 Votes)
  • Good (13%, 4 Votes)
  • Fair (7%, 2 Votes)
  • Neutral (7%, 2 Votes)
  • Poor (27%, 8 Votes)
  • Dreadful (39%, 12 Votes)
  • Total Voters: 30

Start Date: December 3, 2015 @ 9:14 pm
End Date: March 10, 2016 @ 9:43 pm

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