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

If you need to nap during the daytime, how do you generally feel afterwards?

  • Better cognitively, Unchanged physically (15%, 105 Votes)
  • Better physically, Unchanged cognitively (7%, 46 Votes)
  • Better - both cognitively and physically (29%, 198 Votes)
  • No change (13%, 90 Votes)
  • Worse - both cognitively and physically (15%, 107 Votes)
  • Worse cognitively, Better physically (5%, 32 Votes)
  • Worse physically, Better cognitively (3%, 18 Votes)
  • I don't nap in the daytime (13%, 95 Votes)
  • Total Voters: 691

Start Date: February 3, 2015 @ 9:00 am
End Date: No Expiry

To what extent do you suffer from cold hands and/or feet during the winter months?

  • All of the time (31%, 253 Votes)
  • Most of the time (50%, 413 Votes)
  • Only in cold weather (6%, 48 Votes)
  • Occasionally (10%, 79 Votes)
  • Never (3%, 25 Votes)
  • Total Voters: 818

Start Date: January 1, 2015 @ 8:15 am
End Date: No Expiry

How would you prefer your illness to be described?

  • M.E. (70%, 620 Votes)
  • ME/CFS (13%, 115 Votes)
  • CFS/ME (4%, 34 Votes)
  • CFS (3%, 30 Votes)
  • PVFS (1%, 12 Votes)
  • CFIDS (1%, 11 Votes)
  • Other (4%, 34 Votes)
  • Not bothered (4%, 31 Votes)
  • Total Voters: 887

Start Date: December 1, 2014 @ 1:49 pm
End Date: No Expiry

To what degree does joint pain occur in your ME/CFS?

  • severe (35%, 234 Votes)
  • moderate (35%, 237 Votes)
  • mild (10%, 67 Votes)
  • occasional (11%, 75 Votes)
  • never had joint pain (9%, 56 Votes)
  • Total Voters: 669

Start Date: November 2, 2014 @ 4:04 pm
End Date: December 1, 2014 @ 2:07 pm

Reports from the Research Collaborative conference in Bristol suggest exciting new directions for ME/CFS research (see http://wp.me/p3Txzy-5ud). What do you think?

  • A breakthrough is on the way (5%, 8 Votes)
  • A big step forward (7%, 10 Votes)
  • There's potential for better, future research (15%, 22 Votes)
  • Looks hopeful, but it's early days (27%, 41 Votes)
  • Same old, same old... (20%, 30 Votes)
  • Too much emphasis on chronic fatigue/CFS (17%, 25 Votes)
  • No comment (9%, 14 Votes)
  • Total Voters: 150

Start Date: October 3, 2014 @ 7:54 am
End Date: December 1, 2014 @ 2:07 pm

What is the most effective treatment you have used for pain relief in ME/CFS?

  • acupuncture (4%, 13 Votes)
  • amitriptylene (10%, 32 Votes)
  • aspirin (1%, 4 Votes)
  • gabapentin/Neurontin (10%, 31 Votes)
  • pregabalin/Lyrica (7%, 22 Votes)
  • ibuprofen/Brufen (9%, 28 Votes)
  • paracetamol (6%, 18 Votes)
  • strong opiate (11%, 33 Votes)
  • TENS machine (1%, 4 Votes)
  • tramadol (12%, 38 Votes)
  • other (29%, 88 Votes)
  • Total Voters: 310

Start Date: September 8, 2014 @ 10:27 am
End Date: December 1, 2014 @ 2:07 pm

Has your GP ever referred you to a specific NHS consultant or ME/CFS service of your choice - regardless of location?

  • YES – successful (34%, 121 Votes)
  • YES – not successful (13%, 44 Votes)
  • NO – refused to do so (13%, 45 Votes)
  • NO – I've never asked (39%, 136 Votes)
  • NO – I do not have a GP (1%, 6 Votes)
  • Total Voters: 352

Start Date: July 31, 2014 @ 9:00 pm
End Date: December 1, 2014 @ 2:06 pm

If you have severe ME, how do you rate your current care and management by the NHS?

  • Excellent (2%, 5 Votes)
  • Good (4%, 13 Votes)
  • Average (10%, 31 Votes)
  • Poor (20%, 62 Votes)
  • Dreadful (17%, 53 Votes)
  • Non-existent (47%, 145 Votes)
  • Total Voters: 309

Start Date: July 4, 2014 @ 9:59 am
End Date: December 1, 2014 @ 2:00 pm

If you have applied for ESA (Employment and Support Allowance), what was the outcome?

  • Awaiting a decision (9%, 27 Votes)
  • Placed in Support Group (31%, 92 Votes)
  • Placed in Work-Related Activity Group (16%, 48 Votes)
  • Refused - successful on appeal (12%, 35 Votes)
  • Refused - appeal in progress (2%, 6 Votes)
  • Refused - did not appeal (6%, 19 Votes)
  • Have not applied for ESA (20%, 61 Votes)
  • Refused – not successful on appeal (4%, 13 Votes)
  • Total Voters: 301

Start Date: June 1, 2014 @ 8:03 am
End Date: July 4, 2014 @ 11:31 am

If the MEA wins some money in this month's Direct Debit voting contest, which of our biomed research priorities should it go to?

  • Rituximab trial (18%, 50 Votes)
  • Neuro-inflammation and post-mortem research (19%, 53 Votes)
  • Immune system research (48%, 131 Votes)
  • No preference (15%, 39 Votes)
  • Total Voters: 273

Start Date: May 1, 2014 @ 9:31 am
End Date: June 1, 2014 @ 8:09 am

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