Archive of MEA Surveys

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

Overall, how do you rate the June 27th BBC 'file on 4' radio programme that covered children with ME?

• Excellent (9%, 11 Votes)
• Very Good (19%, 24 Votes)
• Good (28%, 36 Votes)
• Average (10%, 13 Votes)
• Poor (6%, 8 Votes)
• Very Poor (2%, 3 Votes)
• No Opinion (0%, 0 Votes)
• I did not listen to it (26%, 33 Votes)

Total Voters: 128

Start Date: July 1, 2017 @ 2:05 pm
End Date: August 1, 2017 @ 2:05 pm

Should doctors be allowed to prescribe speculative or experimental forms of treatment - e.g. antiviral drugs - for people with ME/CFS?

• Yes - definitely (43%, 215 Votes)
• Yes - in some circumstances (40%, 202 Votes)
• Not sure (8%, 38 Votes)
• No opinion (1%, 3 Votes)
• Probably not (4%, 19 Votes)
• Definitely not (4%, 22 Votes)

Total Voters: 499

Start Date: June 1, 2017 @ 10:00 am
End Date: No Expiry