Archive of MEA Surveys

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    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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