Archive of MEA Surveys

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    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

    Do you have a healthcare plan that is consulted, adhered to and kept up to date every time you see a healthcare professional?

    • Yes - fully in place from a GP (1%, 5 Votes)
    • Yes - partly in place from a GP (1%, 12 Votes)
    • Yes - fully in place from hospital ME/CFS service (1%, 9 Votes)
    • Yes - partly in place from hospital ME/CFS service (1%, 8 Votes)
    • Yes - from a private doctor (1%, 7 Votes)
    • No - I never asked for one and/or was never offered one (73%, 612 Votes)
    • No - I asked for one but this was refused (8%, 68 Votes)
    • Not sure (5%, 45 Votes)
    • Do not have any contact with doctors (9%, 75 Votes)
    • Total Voters: 841

Start Date: November 1, 2018 @ 9:26 am
End Date: No Expiry

    If you employ Yoga (or have done in the past) as part of your management plan, how did it affect your M.E.?

    • I find it very helpful (8%, 27 Votes)
    • I find it helpful (14%, 45 Votes)
    • No benefit for M.E. but I enjoy doing it (13%, 41 Votes)
    • No benefit for M.E. and no other benefits (5%, 17 Votes)
    • Felt worse (11%, 36 Votes)
    • Felt much worse (13%, 41 Votes)
    • Never used Yoga (36%, 114 Votes)
    • Total Voters: 321

Start Date: October 1, 2018 @ 10:26 am
End Date: No Expiry

    How many times have you used the NHS (GP, clinic, hospital etc.) in the last 12 months because of your M.E.?

    • 0 times (34%, 230 Votes)
    • 1-5 times (38%, 256 Votes)
    • 6-10 times (12%, 83 Votes)
    • 11-15 times (8%, 53 Votes)
    • 16-20 times (3%, 22 Votes)
    • 21 or more times (5%, 31 Votes)
    • Total Voters: 675

Start Date: September 3, 2018 @ 9:27 am
End Date: No Expiry

    For women with ME/CFS: To what extent does premenstrual syndrome (PMS) change your ME/CFS symptoms?

    • No Change in ME/CFS Symptoms (8%, 34 Votes)
    • Mild Exacerbation (9%, 38 Votes)
    • Moderate Exacerbation (24%, 99 Votes)
    • Severe Exacerbation (40%, 165 Votes)
    • Variable Exacerbation (10%, 43 Votes)
    • ME/CFS Symptoms Improved (1%, 4 Votes)
    • Not Applicable - Developed ME/CFS after periods finished (8%, 33 Votes)
    • Total Voters: 416

Start Date: August 1, 2018 @ 8:42 am
End Date: No Expiry

    How would you describe the relationship with your current GP when it comes to M.E.?

    • Excellent (7%, 32 Votes)
    • Good (13%, 60 Votes)
    • OK (9%, 42 Votes)
    • Variable - Good and Bad (13%, 59 Votes)
    • Poor (10%, 47 Votes)
    • Dreadful - GP Not Interested (15%, 68 Votes)
    • Dreadful - GP Does Not Believe M.E. Exists (7%, 31 Votes)
    • No Longer See GP About M.E. (27%, 124 Votes)
    • Do Not Have An NHS GP (0%, 4 Votes)
    • Total Voters: 467

Start Date: July 2, 2018 @ 8:39 am
End Date: No Expiry

    Have you tried using the FODMAP diet for irritable bowel symptoms? If so, what was the effect?

    • Helped a lot (19%, 36 Votes)
    • Helped a bit (6%, 12 Votes)
    • No change (7%, 14 Votes)
    • Made symptoms worse (1%, 2 Votes)
    • Made symptoms much worse (0%, 0 Votes)
    • Gave up - too complicated (5%, 9 Votes)
    • Not tried FODMAP (62%, 120 Votes)
    • Total Voters: 193

Start Date: June 5, 2018 @ 9:32 am
End Date: No Expiry

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