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

Please let us know if, and at what level, M.E. has affected your education and indicate if any of the following statements hold true (multiple answers are allowed):

  • I could not reach my potential at school (9%, 123 Votes)
  • I could not reach my potential in further education - including A'Levels (7%, 97 Votes)
  • I could not reach my potential in higher education (9%, 130 Votes)
  • I was able to reach my education potential despite having M.E. (3%, 37 Votes)
  • My peers left me behind (8%, 112 Votes)
  • I was absent for long periods (10%, 146 Votes)
  • I had to be home-schooled (home-tutored) (5%, 64 Votes)
  • I needed to study part-time (7%, 97 Votes)
  • I needed to study on-line e.g. open university or equivalent (3%, 39 Votes)
  • I was registered as a disabled student (4%, 60 Votes)
  • I needed special arrangements to study e.g. a study-partner or special equipment (4%, 51 Votes)
  • I needed special arrangements to take exams e.g. computer-based, extra time (7%, 103 Votes)
  • I needed to catch-up with coursework during the holidays (6%, 90 Votes)
  • I needed frequent extensions to coursework deadlines (7%, 97 Votes)
  • I had to drop-out of my chosen course and have not been able to return (8%, 111 Votes)
  • I failed exams (or coursework) and had to resit (4%, 56 Votes)
  • Total Voters: 272

Start Date: May 3, 2018 @ 8:40 pm
End Date: No Expiry

What is your current employment status and, if employed, does your employer know you have M.E.?

  • I work full-time (35+ hours a week) (9%, 80 Votes)
  • I work part-time (less than 35 hours a week) (13%, 123 Votes)
  • I work occasionally (i.e. not regular) (1%, 12 Votes)
  • I am self-employed full-time (1%, 5 Votes)
  • I am self-employed part-time (2%, 21 Votes)
  • I am occasionally self-employed (2%, 15 Votes)
  • I work in a full-time voluntary capacity (0%, 0 Votes)
  • I work in a part-time voluntary capacity (1%, 11 Votes)
  • I have told my employer that I have M.E. (19%, 174 Votes)
  • I have not told my employer that I have M.E. (3%, 29 Votes)
  • I am currently looking for work (1%, 5 Votes)
  • I am currently unable to work (49%, 449 Votes)
  • Total Voters: 711

Start Date: April 12, 2018 @ 10:08 am
End Date: No Expiry

What are the 2 most effective forms of pain management you have used to help with ME/CFS symptoms?

  • Amitriptyline or imipramine (10%, 90 Votes)
  • Co-codamol (9%, 81 Votes)
  • Duloxetine/Cymbalta (3%, 25 Votes)
  • Epsom salt bath/muscle soak (9%, 82 Votes)
  • Gabapentin/Neurontin (6%, 53 Votes)
  • Ibuprofen/Brufen (8%, 76 Votes)
  • Pregabalin/Lyrica (6%, 53 Votes)
  • Strong Opioid - e.g. morphine (5%, 46 Votes)
  • Tramadol (6%, 57 Votes)
  • Acupuncture (3%, 29 Votes)
  • TENS machine (2%, 20 Votes)
  • Other (19%, 177 Votes)
  • Nothing is effective (16%, 146 Votes)
  • Total Voters: 583

Start Date: March 5, 2018 @ 8:17 am
End Date: No Expiry

What should be the most important research funding priorities for the ME Association Ramsay Research Fund in 2018? Please indicate your top 3 priorities from the options below:

  • UK M.E. Biobank (10%, 170 Votes)
  • Role of infection (5%, 89 Votes)
  • Immune system dysfunction (19%, 329 Votes)
  • Mitochondrial function (19%, 335 Votes)
  • Neurological involvement e.g. inflammation, PoTS, and nervous system (19%, 342 Votes)
  • Metabolomic research (7%, 132 Votes)
  • Microbiome research (5%, 93 Votes)
  • Sleep research (4%, 75 Votes)
  • Activity management incl. Pacing (3%, 45 Votes)
  • Drug treatments aimed at symptom relief (7%, 121 Votes)
  • Other - please let us know! (2%, 30 Votes)
  • Total Voters: 656

Start Date: January 4, 2018 @ 8:02 am
End Date: No Expiry

Do you have migraine-type headaches (that also have visual disturbances, sickness or speech disturbance) as part of M.E.?

  • Yes, frequently. (29%, 153 Votes)
  • Yes, quite often. (19%, 99 Votes)
  • Yes, occasionally. (24%, 130 Votes)
  • No, but have done in the past. (10%, 56 Votes)
  • No, never had migraines. (18%, 97 Votes)
  • Total Voters: 535

Start Date: December 3, 2017 @ 12:30 pm
End Date: No Expiry

To what extent has the very positive publicity surrounding 'Unrest' changed public recognition and understanding of ME/CFS in the UK?

  • Major improvement (12%, 45 Votes)
  • Partial improvement (16%, 60 Votes)
  • Slight improvement (18%, 66 Votes)
  • Don't know (33%, 120 Votes)
  • Mixed - helpful and unhelpful (5%, 18 Votes)
  • Made slightly worse (3%, 10 Votes)
  • Made a lot worse (1%, 3 Votes)
  • I don't think it has made a difference (12%, 44 Votes)
  • Total Voters: 366

Start Date: November 1, 2017 @ 8:05 am
End Date: No Expiry

Have you used melatonin to help with a sleep problem in ME/CFS? If so, was it helpful?

  • Very helpful (16%, 86 Votes)
  • Of some help (14%, 74 Votes)
  • No effect (11%, 59 Votes)
  • Made worse (3%, 15 Votes)
  • Made much worse (2%, 10 Votes)
  • Not used melatonin (54%, 297 Votes)
  • Total Voters: 541

Start Date: October 2, 2017 @ 4:09 pm
End Date: No Expiry

What has happened to your weight since you developed ME/CFS?

  • Large increase (37%, 266 Votes)
  • Moderate increase (23%, 164 Votes)
  • Small increase (7%, 53 Votes)
  • No change (8%, 57 Votes)
  • Fluctuates (11%, 77 Votes)
  • Small decrease (3%, 23 Votes)
  • Moderate decrease (6%, 40 Votes)
  • Large decrease (5%, 39 Votes)
  • Total Voters: 719

Start Date: September 1, 2017 @ 1:08 pm
End Date: No Expiry

If you have severe ME, which of the following services and DWP benefits have you (or your carer) received?

  • GP Home Visits (11%, 64 Votes)
  • Hospital Home Visits (1%, 8 Votes)
  • Hospital Out Patient Management (7%, 45 Votes)
  • Hospital In Patient Management (1%, 7 Votes)
  • NHS Care Plan (1%, 8 Votes)
  • Social Care (8%, 48 Votes)
  • Personal Independence Payment (PIP) or (DLA) (25%, 152 Votes)
  • Carers Allowance (6%, 35 Votes)
  • Disabled Facilities Grant (3%, 19 Votes)
  • Blue Badge (22%, 134 Votes)
  • None of the above (14%, 84 Votes)
  • Total Voters: 285

Start Date: August 10, 2017 @ 11:53 am
End Date: No Expiry

Do you think the NICE guideline for CFS/ME is working for you?

  • Yes - I think it is (1%, 4 Votes)
  • Yes - but it could be better (0%, 3 Votes)
  • No - I think it needs a minor review (1%, 8 Votes)
  • No - I think it needs a major review (94%, 727 Votes)
  • I am not sure (1%, 7 Votes)
  • What's the NICE guideline? (3%, 24 Votes)
  • Total Voters: 773

Start Date: July 10, 2017 @ 6:38 pm
End Date: No Expiry

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