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 funding becomes available from the MRC would you be willing to take part in research that will investigate the genetics of M.E.?

  • Yes. I have M.E. and I support this research. (91%, 455 Votes)
  • Unsure. I have M.E. but I am not sure of my support at this stage. (5%, 24 Votes)
  • No. I have M.E. but I do not support this research. (1%, 3 Votes)
  • Yes. I don’t have M.E. but I support this research. (3%, 20 Votes)
  • Total Voters: 502

Start Date: January 6, 2020 @ 10:10 am
End Date: No Expiry

What has happened to your health as a result of ME over the last 12 months?

  • Major Improvement (2%, 8 Votes)
  • Moderate Improvement (2%, 12 Votes)
  • Minor Improvement (7%, 33 Votes)
  • No Overall Change - Stable (18%, 90 Votes)
  • Minor Deterioration (18%, 89 Votes)
  • Moderate Deterioration (33%, 169 Votes)
  • Major Deterioration (21%, 104 Votes)
  • Not had any M.E. symptoms in last 12 months (0%, 0 Votes)
  • Total Voters: 505

Start Date: December 3, 2019 @ 8:16 am
End Date: No Expiry

What are the most important issues about M.E. that you want your MP to raise/lobby about after the general election?

  • Increased government funding for biomedical research (13%, 148 Votes)
  • Inappropriate use of CBT and/or GET by the NHS (10%, 120 Votes)
  • Fair and accurate medical assessments for DWP benefits (11%, 131 Votes)
  • Children and adolescents - NHS services, education, inappropriate child care referrals (4%, 49 Votes)
  • Severe ME - prioritising NHS home visits, including improving social and respite care (7%, 81 Votes)
  • Provision of home visits from GPs for those that request them (6%, 74 Votes)
  • Problems with local NHS specialist and/or referral services (7%, 80 Votes)
  • Increased availability of all aspects of specialist/hospital based care (5%, 60 Votes)
  • Provision of accurate and continuing medical education for all health professionals (12%, 133 Votes)
  • Ending the stigma still surrounding the condition (10%, 114 Votes)
  • All of the above (13%, 146 Votes)
  • None of the above - please share your comments (0%, 0 Votes)
  • Other - please share your comments (1%, 8 Votes)
  • Total Voters: 307

Start Date: November 5, 2019 @ 7:51 am
End Date: No Expiry

Do you own a pet? You can choose as many options as you like.

  • Yes - Dog/s (26%, 153 Votes)
  • Yes - Cat/s (24%, 138 Votes)
  • Yes - Dog/s and Cat/s (6%, 35 Votes)
  • Yes - Fish (5%, 29 Votes)
  • Yes - Rabbit/s (2%, 14 Votes)
  • Yes - Reptile/s (2%, 13 Votes)
  • Yes - Horse/s (1%, 5 Votes)
  • Yes - Rodent/s (1%, 7 Votes)
  • Yes - Another type of pet (2%, 14 Votes)
  • No - Can't own a pet due to ME/CFS severity (14%, 84 Votes)
  • No - Can't own a pet due to allergies (4%, 24 Votes)
  • No - Can't own a pet due mainly to cost (3%, 20 Votes)
  • No - Can't own a pet due to a lack of space/facilities (5%, 32 Votes)
  • No - Don't really like pets (2%, 14 Votes)
  • Total Voters: 454

Start Date: October 4, 2019 @ 10:20 am
End Date: No Expiry

If you were/are a pupil/student with M.E. what level of support did you receive from your school, college or university to help you manage your condition and remain in education?

  • Excellent Support (4%, 4 Votes)
  • Good Support (4%, 4 Votes)
  • Adequate Support (1%, 1 Votes)
  • Patchy Support – It was sometimes helpful, sometimes not (18%, 16 Votes)
  • Unhelpful Support (8%, 7 Votes)
  • Detrimental Support (11%, 10 Votes)
  • No Support – I was unable to continue my studies and had to drop out (54%, 49 Votes)
  • Total Voters: 91

Start Date: September 4, 2019 @ 11:07 am
End Date: No Expiry

What category of illness severity best reflects your (or the person you care for's) current level of disability? Please refer to the current blog that provides the definitions.

  • Mild (9%, 56 Votes)
  • Moderate (42%, 268 Votes)
  • Severe (39%, 252 Votes)
  • Very Severe (10%, 62 Votes)
  • Total Voters: 638

Start Date: August 5, 2019 @ 10:05 am
End Date: No Expiry

As a person with M.E. what has been your experience of physiotherapy?

  • Positive and helped make my M.E. much better (1%, 5 Votes)
  • Positive and helped my M.E. (5%, 20 Votes)
  • Positive but did not help my M.E. (13%, 59 Votes)
  • Neither positive, nor negative (5%, 23 Votes)
  • Negative but helped my M.E. (0%, 1 Votes)
  • Negative and made my M.E. worse (16%, 71 Votes)
  • Negative and made my M.E. much worse (12%, 53 Votes)
  • I have not received physiotherapy for M.E. (48%, 209 Votes)
  • Total Voters: 441

Start Date: July 1, 2019 @ 5:55 pm
End Date: No Expiry

To what extent has loneliness and social isolation become a consequence of having ME?

  • Constantly (42%, 175 Votes)
  • Most of the time (39%, 164 Votes)
  • Some of the time (17%, 69 Votes)
  • Occasionally (1%, 6 Votes)
  • Not at all (1%, 2 Votes)
  • Total Voters: 416

Start Date: June 6, 2019 @ 10:15 am
End Date: No Expiry

What does ME Awareness Week mean to you?

  • Raising public awareness in general (13%, 160 Votes)
  • Providing education/research material to health professionals (6%, 81 Votes)
  • Informing politicians about the issues (6%, 80 Votes)
  • Attracting new researchers to the field (6%, 69 Votes)
  • Improving access to appropriate medical care (6%, 75 Votes)
  • Reaching out to those who are undiagnosed (4%, 53 Votes)
  • Highlighting the known facts about M.E. (8%, 99 Votes)
  • Highlighting those severely affected by M.E. (7%, 83 Votes)
  • Highlighting children and young people affected by M.E. (5%, 67 Votes)
  • Campaigning for funding for biomedical research (8%, 97 Votes)
  • Raising funds for M.E. charities (5%, 67 Votes)
  • Dispelling the myths about M.E. (11%, 132 Votes)
  • Connecting with people outside of the community (4%, 56 Votes)
  • Having some fun and making friends (2%, 25 Votes)
  • All of the above (8%, 94 Votes)
  • None of the above (0%, 5 Votes)
  • Other (please leave comment – see blog for details) (0%, 4 Votes)
  • Total Voters: 260

Start Date: May 1, 2019 @ 9:53 am
End Date: No Expiry

In addition to ME/CFS, do you have a diagnosis of any of the following conditions?

  • Endometriosis (5%, 135 Votes)
  • Fibromyalgia (16%, 423 Votes)
  • Hypermobility/Ehlers Danlos syndrome (7%, 189 Votes)
  • Interstitial Cystitis (3%, 75 Votes)
  • Irritable Bowel Syndrome (21%, 575 Votes)
  • Jaw pain - Temperomandibular Jaw Dysfunction (9%, 246 Votes)
  • Migraine (16%, 441 Votes)
  • Multiple Chemical Sensitivities (7%, 201 Votes)
  • Postural orthostatic Tachycardia Syndrome (PoTS) (12%, 310 Votes)
  • None of the above (4%, 97 Votes)
  • Total Voters: 1,024

Start Date: April 3, 2019 @ 8:17 am
End Date: No Expiry

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