Archive of MEA Surveys

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    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

    Overall, how would you describe the effect that cognitive dysfunction (“brain fog”) has on your ability to function on a day-to-day basis?

    • Constant and severely disabling (16%, 127 Votes)
    • Constant and moderately disabling (17%, 134 Votes)
    • Constant and mildly disabling (6%, 44 Votes)
    • Varies between moderate and severe (23%, 183 Votes)
    • Varies between mild and moderate (23%, 183 Votes)
    • Varies between mild and severe (15%, 119 Votes)
    • No longer suffer with cognitive dysfunction (1%, 4 Votes)
    • Never had cognitive dysfunction (0%, 5 Votes)
    • Total Voters: 799

Start Date: March 5, 2019 @ 7:44 am
End Date: No Expiry

    If you have used private or NHS counselling to help with emotional, mental health or relationship problems linked to ME/CFS did you find it helpful?

    • Yes - very helpful overall (9%, 25 Votes)
    • Yes - very helpful for some aspects (7%, 19 Votes)
    • Yes - quite helpful overall (4%, 10 Votes)
    • Yes - quite helpful for some aspects (18%, 49 Votes)
    • Neutral - neither helpful nor unhelpful (7%, 19 Votes)
    • No - but not harmful (9%, 26 Votes)
    • No - the approach taken made matters worse (13%, 36 Votes)
    • Never tried counselling (33%, 94 Votes)
    • Total Voters: 278

Start Date: February 1, 2019 @ 5:50 pm
End Date: No Expiry

    What do you consider are the most important three things that a GP needs to know about ME/CFS?

    • Knowledge of range of symptoms and diagnostic criteria to make an early and accurate diagnosis (26%, 507 Votes)
    • An understanding of the impact of symptoms and awareness of pharmacological symptom management (20%, 393 Votes)
    • Where and when to refer for specialist medical help e.g. consultants, clinics (9%, 170 Votes)
    • An understanding of the role of complementary therapy and when it is appropriate to suggest this (2%, 38 Votes)
    • Treatment options that are currently available (7%, 128 Votes)
    • Clinical trials into treatments that are being carried out (2%, 34 Votes)
    • An understanding of the biomedical research into ME/CFS (13%, 249 Votes)
    • A willingness to make home visits and email/telephone consultations for severely affected (16%, 317 Votes)
    • Providing support and information re: benefits, employment etc. (5%, 103 Votes)
    • Other - Please provide comment on Website or Facebook or via email (1%, 23 Votes)
    • Total Voters: 690

Start Date: January 8, 2019 @ 10:01 am
End Date: No Expiry

    Does your doctor (GP or specialist) provide medical evidence for benefit, work, education or social care purposes?

    • Yes – it was free, supportive and it helped me get what I needed (32%, 93 Votes)
    • Yes – it was not free, but was supportive, and it helped me get what I needed (16%, 46 Votes)
    • Yes – it was free, but was not supportive, and I didn't get what was needed (7%, 20 Votes)
    • Yes – it was not free, was not supportive and I didn't get what was needed (6%, 17 Votes)
    • Yes – but I couldn't afford to pay and did not get what was needed (1%, 4 Votes)
    • No – but I got what I needed without medical evidence (5%, 14 Votes)
    • No - I was unable to get what was needed without medical evidence (3%, 9 Votes)
    • No – Doctor refused to provide medical evidence (9%, 27 Votes)
    • I have never needed to ask for medical evidence (15%, 43 Votes)
    • Other - Please provide comment on Website or Facebook or via email (6%, 14 Votes)
    • Total Voters: 287

Start Date: December 3, 2018 @ 8:57 am
End Date: No Expiry

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