SURVEYS

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See an archive of previous surveys

JUNE SURVEY

Since the start of the Covid pandemic in March 2020 have you been able to access NHS services about ME/CFS: 
to receive an early and accurate diagnosis
to see a GP in person as often as you needed to
to see a GP remotely e.g., by video/phone, as often as you needed to
to obtain a home visit as often as you needed to
to get a referral to an ME/CFS specialist service?
to see ME/CFS specialists in person
to see ME/CFS specialists remotely e.g., by video/phone.
to obtain a home visit from ME/CFS specialists
Based on your own experience since March 2020, how do you rate the NHS and its ability to provide adequate accessible support for your needs?
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Archive of Surveys

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Is your blood pressure usually normal, low (hypotension) or high (hypertension)? Or do you not know what your blood pressure measurement is?
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What do you believe is primarily responsible for triggering your ME/CFS?
1881 votes · 3252 answers
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Some researchers are linking ME to problems in childhood. So did you, on balance, have a happy childhood?

  • Yes, very happy (27%)
  • Yes, happy (23%)
  • Neutral (4%)
  • Mixture of happy and unhappy (26%)
  • No, unhappy (12%)
  • No, very unhappy (8%)

    • Total Voters: 1,254

Start Date: April 1, 2013 @ 12:18 am
End Date: June 2, 2013 @ 5:47 pm

Overall, how do you rate the content, layout, ease of use etc of the MEA website:

  • Excellent (37%)
  • Good (41%)
  • Fair (14%)
  • Poor (4%)
  • Very poor (4%)

    • Total Voters: 314

Start Date: March 1, 2013 @ 7:40 am
End Date: June 2, 2013 @ 5:47 pm

Does your current GP have the skills and knowledge to care for ME/CFS patients?

  • NO - sympathetic but needs more education (43%)
  • NO - not interested in ME/CFS (21%)
  • YES - to some extent (17%)
  • NO - knows nothing about ME/CFS (11%)
  • YES - very much so (8%)

    • Total Voters: 958

Start Date: February 1, 2013 @ 12:38 am
End Date: March 28, 2013 @ 5:22 pm

Overall, what has happened to your health in relation to ME/CFS during the course of 2012?

  • Major improvement (4%)
  • Minor improvement (14%)
  • No change (19%)
  • Minor deterioration (31%)
  • Major deterioration (32%)

    • Total Voters: 1,033

Start Date: January 1, 2013 @ 12:08 am
End Date: March 28, 2013 @ 5:22 pm

Who uses our website? Up to 2 votes per person are allowed

  • I have ME/CFS (UK) (65%)
  • I have ME/CFS (Overseas) (4%)
  • I may have ME/CFS (9%)
  • Carer (3%)
  • Partner (4%)
  • Parent (6%)
  • Health Professional (3%)
  • Journalist/Broadcaster (0%)
  • Other (6%)

    • Total Voters: 970

Start Date: December 1, 2012 @ 1:10 am
End Date: March 28, 2013 @ 5:21 pm

Have you consulted your MP (whole of the UK) about an ME/CFS or benefit related issue? If so, what was the response?

  • Very helpful (10%)
  • Fairly helpful (9%)
  • Neutral (9%)
  • Unhelpful (18%)
  • Refused to help (6%)
  • Awaiting a response (4%)
  • No - never contacted my MP (44%)

    • Total Voters: 457

Start Date: November 1, 2012 @ 12:00 am
End Date: December 31, 2012 @ 6:26 pm

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

  • Awaiting a decision (10%)
  • Placed in Support Group (14%)
  • Placed in Work Related Activity Group (24%)
  • Refused - successful on appeal (7%)
  • Refused - unsuccessful on appeal (7%)
  • Refused - appeal in progress (11%)
  • Refused - did not appeal (7%)
  • Have not applied for ESA (20%)

    • Total Voters: 568

Start Date: October 2, 2012 @ 7:42 pm
End Date: November 1, 2012 @ 9:15 am

How many hours of solid uninterrupted sleep (regardless of medication) do you normally have each night?

  • Less than one (1%)
  • 1-2 (8%)
  • 2-3 (18%)
  • 3-4 (22%)
  • 4-5 (14%)
  • 5-6 (10%)
  • 6-7 (7%)
  • 7-8 (6%)
  • 8-10 (7%)
  • More than 10 (7%)

    • Total Voters: 1,890

Start Date: September 1, 2012 @ 6:02 am
End Date: November 1, 2012 @ 9:16 am

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%)
  • YES – but they were not very helpful (5%)
  • YES – but they were not at all helpful (2%)
  • YES – but they were misleading (2%)
  • NO – I got my notes from my GP (4%)
  • NO – I did not receive any notes from the person who diagnosed me (73%)
  • CAN'T REMEMBER (3%)

    • 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%)
  • YES - but they were not very helpful. (3%)
  • YES - but they were not at all helpful. (1%)
  • YES - but they were misleading. (1%)
  • NO - I did not receive any GP notes. (88%)
  • CAN'T REMEMBER (2%)

    • Total Voters: 903

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

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