Current Survey
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Consider the last time you had any contact with the NHS about ME/CFS. How would you rate this experience?
- Excellent (3%, 3 Votes)
- Good (5%, 6 Votes)
- Average (8%, 9 Votes)
- Poor (33%, 39 Votes)
- Very Poor (46%, 54 Votes)
- I do not engage with the NHS (5%, 7 Votes)
Total Voters: 118
Start Date: May 10, 2021 @ 6:00 am
End Date: No Expiry
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?
- England - positive outcome: I received or will receive early vaccination (39%, 295 Votes)
- England - negative outcome: I was told I couldn't have an early vaccination (37%, 279 Votes)
- England - awaiting outcome (4%, 27 Votes)
- N. Ireland - positive outcome: I received or will receive early vaccination (0%, 2 Votes)
- N. Ireland - negative outcome: I was told I couldn't have an early vaccination (1%, 4 Votes)
- N. Ireland - awaiting outcome (0%, 1 Votes)
- Scotland - positive outcome: I received or will receive early vaccination (2%, 14 Votes)
- Scotland - negative outcome: I was told I couldn't have an early vaccination (3%, 19 Votes)
- Scotland - awaiting outcome (1%, 7 Votes)
- Wales - positive outcome: I received or will receive early vaccination (2%, 12 Votes)
- Wales - negative outcome: I was told I couldn't have an early vaccination (2%, 18 Votes)
- Wales - awaiting outcome (0%, 1 Votes)
- General - positive outcome: I didn't use the template letters, but I received or will receive early vaccination (4%, 33 Votes)
- General - negative outcome: I didn't use the template letters, and was told I couldn't have an early vaccination (2%, 14 Votes)
- General - I wasn't aware of the template letters but hope to use them soon (0%, 1 Votes)
- General - I haven't been able to engage with my GP or CCG/Health Board (1%, 7 Votes)
- General - I don't think eligibility is a viable option and I haven't pursued it (1%, 10 Votes)
- General - I haven't been able to pursue eligibility because I am not well enough (2%, 14 Votes)
Total Voters: 751
Start Date: April 7, 2021 @ 11:30 am
End Date: No Expiry
Have you had your Covid vaccination? If so, how did you feel afterwards? Choose up to 3 answers.
- I felt fine. No discernible issues even after a few days. (7%, 201 Votes)
- I felt surprisingly better for a few days after the vaccine. (2%, 70 Votes)
- I experienced side effects e.g., sore arm, increased fatigue, headache, chills, slight fever, etc. (19%, 547 Votes)
- I had some of the above side-effects and an increase in ME/CFS symptoms. (12%, 351 Votes)
- I had some of the above side-effects but no increase in ME/CFS symptoms. (9%, 260 Votes)
- I had all of the above side-effects and an increase in ME/CFS symptoms. (12%, 361 Votes)
- I had none of the above side-effects but had an increase in ME/CFS symptoms. (1%, 35 Votes)
- I had significant side-effects and/or a significant increase in ME/CFS symptoms and had to consult my doctor. (4%, 118 Votes)
- The issues resolved within days of the vaccination. (10%, 296 Votes)
- The issues resolved within a week of the vaccination. (8%, 228 Votes)
- The issues took longer than a week to resolve. (9%, 254 Votes)
- The issues remain unresolved and have led to a relapse in ME/CFS. (7%, 208 Votes)
Total Voters: 1,956
Start Date: March 5, 2021 @ 10:00 am
End Date: No Expiry
Are you going to have a COVID-19 vaccine when it is made available to you?
- Yes - Definitely (57%, 3,439 Votes)
- Yes - I have already been vaccinated (12%, 720 Votes)
- Yes - Probably (7%, 399 Votes)
- Not sure - waiting for more information on possible side effects (5%, 332 Votes)
- Not sure - waiting to see what happens to other people with ME/CFS who are vaccinated (12%, 745 Votes)
- Probably not (2%, 149 Votes)
- Definitely not (5%, 276 Votes)
Total Voters: 6,060
Start Date: January 13, 2021 @ 9:43 am
End Date: No Expiry
What is your overall opinion of the new NICE guideline on ME/CFS?
- It is a significant improvement (27%, 358 Votes)
- It is a good improvement (18%, 233 Votes)
- It is a step in the right direction (49%, 642 Votes)
- I don't see any difference (4%, 48 Votes)
- It is worse than the current guideline (1%, 19 Votes)
- I do not intend reading it (1%, 16 Votes)
Total Voters: 1,316
Start Date: November 10, 2020 @ 11:52 am
End Date: No Expiry
Have you had a flu vaccination either this year, or within the past five years? If so, what effect did this have on your ME symptoms?
- Minor exacerbation (12%, 136 Votes)
- Moderate exacerbation (11%, 115 Votes)
- Severe exacerbation (8%, 86 Votes)
- No effect (32%, 345 Votes)
- Minor improvement (1%, 9 Votes)
- Major improvement (0%, 2 Votes)
- Do not have the flu vaccination (36%, 401 Votes)
Total Voters: 1,094
Start Date: October 7, 2020 @ 7:05 am
End Date: No Expiry
How has your M.E affected your attendance at school, college, or university during the past academic year, prior to lockdown?
- I managed education with good attendance (5%, 16 Votes)
- I managed education with some absences (16%, 49 Votes)
- I managed education with poor attendance (22%, 67 Votes)
- I managed education with a reduced curriculum (9%, 28 Votes)
- I had home tutoring during this period (12%, 36 Votes)
- I could not manage education or receive home tuition (36%, 113 Votes)
Total Voters: 309
Start Date: September 10, 2020 @ 6:25 am
End Date: No Expiry
Have you experienced Severe or Very Severe M.E.? If so, for how long were you affected to this extent? Please visit the MEA blog for severity definitions etc.
- Up to a year (6%, 97 Votes)
- 1-2 years (8%, 129 Votes)
- 3-5 years (9%, 138 Votes)
- 5-7 years (5%, 82 Votes)
- 7-10 years (5%, 84 Votes)
- 10 years + (21%, 327 Votes)
- Whenever I relapse I experience Severe M.E. (24%, 371 Votes)
- Whenever I relapse I experience Very Severe M.E. (8%, 121 Votes)
- I have never experienced Severe M.E. (6%, 91 Votes)
- I have never experienced Very Severe M.E. (6%, 88 Votes)
- Other - please leave a comment on MEA Facebook. (1%, 21 Votes)
Total Voters: 1,123
Start Date: August 2, 2020 @ 7:13 pm
End Date: No Expiry
During the national covid-19 lockdown, have you felt confident in the NHS's ability to provide appropriate care and support for your needs as a person with ME/CFS?
- Yes, extremely confident. (2%, 22 Votes)
- Yes, confident. (2%, 24 Votes)
- Yes, reasonably confident. (4%, 48 Votes)
- I was uncertain. (9%, 109 Votes)
- No, doubtful. (16%, 191 Votes)
- No, I had no confidence. (30%, 350 Votes)
- No, I have no confidence in the NHS at the best of times. (37%, 438 Votes)
Total Voters: 1,182
Start Date: July 7, 2020 @ 7:42 am
End Date: No Expiry
How have you coped with the Covid-19 lockdown?
- Very well - no significant problems (15%, 239 Votes)
- Fairly well - but have had a few problems (22%, 343 Votes)
- Mixed - good and bad experiences (22%, 341 Votes)
- Not very well - have had quite a few problems (8%, 129 Votes)
- Badly - mainly with the practical problems like shopping (6%, 96 Votes)
- Badly - mainly with problems coping with M.E. and/or other medical conditions (11%, 171 Votes)
- Badly - mainly with mental health problems and/or loneliness (4%, 64 Votes)
- Badly - all three of the above (12%, 190 Votes)
Total Voters: 1,573
Start Date: May 6, 2020 @ 8:48 am
End Date: No Expiry