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

When you were diagnosed with ME/CFS, did the person who diagnosed you, OTHER THAN YOUR GP, give you notes to help you understand about ME and the best ways to cope with your symptoms?

  • YES – they were helpful (11%, 84 Votes)
  • YES – but they were not very helpful (5%, 38 Votes)
  • YES – but they were not at all helpful (2%, 18 Votes)
  • YES – but they were misleading (2%, 15 Votes)
  • NO – I got my notes from my GP (4%, 30 Votes)
  • NO – I did not receive any notes from the person who diagnosed me (73%, 559 Votes)
  • CAN'T REMEMBER (3%, 18 Votes)
  • Total Voters: 764

Start Date: August 1, 2012 @ 2:12 am
End Date: November 1, 2012 @ 9:19 am

When you were diagnosed with ME/CFS, did your GP give you notes to help you understand about ME and the best ways to cope with your symptoms?

  • YES - they were helpful (5%, 45 Votes)
  • YES - but they were not very helpful. (3%, 30 Votes)
  • YES - but they were not at all helpful. (1%, 9 Votes)
  • YES - but they were misleading. (1%, 9 Votes)
  • NO - I did not receive any GP notes. (88%, 797 Votes)
  • CAN'T REMEMBER (2%, 11 Votes)
  • Total Voters: 903

Start Date: July 1, 2012 @ 2:06 am
End Date: November 1, 2012 @ 9:19 am

Are you doing our survey on CBT, GET and Pacing? Results will go into our response to the NICE guideline review.

  • YES - completed (45%, 79 Votes)
  • YES - doing in stages (10%, 18 Votes)
  • YES - will be doing (13%, 23 Votes)
  • MIGHT DO (5%, 9 Votes)
  • NO (UK) (23%, 41 Votes)
  • NO (Oversease) (4%, 5 Votes)
  • Total Voters: 176

Start Date: June 1, 2012 @ 2:02 am
End Date: November 1, 2012 @ 9:19 am

Overall, what best describes the attitude of your immediate family towards your illness?

  • Very understanding (17%, 181 Votes)
  • Understanding (11%, 121 Votes)
  • Mixed (understanding in some ways but not in others) (44%, 473 Votes)
  • Lacking in understanding (19%, 207 Votes)
  • Not interested (7%, 75 Votes)
  • No immediate family (2%, 21 Votes)
  • Total Voters: 1,078

Start Date: May 1, 2012 @ 1:02 am
End Date: June 30, 2012 @ 10:11 am

If you have been referred to an NHS hospital-based ME/CFS clinic how would you rate the experience? If not, why have you not been referred?

  • Excellent (8%, 57 Votes)
  • Good (11%, 75 Votes)
  • Average (6%, 44 Votes)
  • Poor (9%, 63 Votes)
  • Useless (25%, 173 Votes)
  • Mixed - good and bad (9%, 66 Votes)
  • No local service (16%, 116 Votes)
  • Cannot get a referral (9%, 60 Votes)
  • Do not want a referral (6%, 39 Votes)
  • Do not need a referral (1%, 12 Votes)
  • Total Voters: 705

Start Date: April 1, 2012 @ 1:00 am
End Date: June 30, 2012 @ 10:10 am

How disabled are you on the MEA Disability Rating Scale? The scale can be found in 'Quick Links' immediately above this question

  • 100% (2%, 28 Votes)
  • 90% (6%, 66 Votes)
  • 80% (11%, 128 Votes)
  • 70% (16%, 192 Votes)
  • 60% (17%, 203 Votes)
  • 50% (16%, 186 Votes)
  • 40% (10%, 119 Votes)
  • 30% (11%, 130 Votes)
  • 20% (5%, 61 Votes)
  • 10% (2%, 29 Votes)
  • 0% (4%, 28 Votes)
  • Total Voters: 1,170

Start Date: March 1, 2012 @ 12:30 am
End Date: April 2, 2012 @ 5:54 pm

If the MEA Ramsay Research Fund helps to fund a high quality Rituximab trial, would you be willing to take part?

  • YES - definitely (57%, 498 Votes)
  • YES - probably (21%, 189 Votes)
  • Not sure (12%, 103 Votes)
  • Probably not (5%, 40 Votes)
  • Definitely not (5%, 51 Votes)
  • Total Voters: 881

Start Date: February 1, 2012 @ 1:00 am
End Date: April 2, 2012 @ 5:55 pm

What has happened to your alcohol intake since developing ME/CFS?

  • No longer drink alcohol (49%, 677 Votes)
  • Decreased (32%, 445 Votes)
  • No change (5%, 74 Votes)
  • Increased (5%, 63 Votes)
  • Never drunk alcohol (9%, 124 Votes)
  • Total Voters: 1,383

Start Date: January 1, 2012 @ 11:42 am
End Date: February 27, 2012 @ 3:42 pm

What is the most important problem/concern facing you as 2011 comes to an end?

  • Benefits and finances (40%, 469 Votes)
  • Depression (10%, 122 Votes)
  • Education (3%, 37 Votes)
  • Employment (9%, 105 Votes)
  • Good medical care (19%, 225 Votes)
  • Loneliness (6%, 73 Votes)
  • Relationships (5%, 59 Votes)
  • Social care/support (3%, 37 Votes)
  • No problems/concerns (1%, 13 Votes)
  • None of the above (4%, 32 Votes)
  • Total Voters: 1,172

Start Date: December 1, 2011 @ 8:10 am
End Date: February 27, 2012 @ 3:38 pm

How much help/support do you need with personal care, meals, mobility etc from a partner, friend or carer?

  • Day and night (15%, 121 Votes)
  • Only at night (0%, 3 Votes)
  • Over 75% of the day (11%, 85 Votes)
  • 50% to 75% of the day (18%, 142 Votes)
  • Less than 50% of the day (21%, 166 Votes)
  • Occasionally (17%, 134 Votes)
  • Rare occasions (6%, 50 Votes)
  • No care required (10%, 76 Votes)
  • Tick this box if you answered as a carer (2%, 17 Votes)
  • Total Voters: 794

Start Date: November 1, 2011 @ 11:00 am
End Date: December 1, 2011 @ 8:17 am

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