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    Have the Royal Colleges behaved responsibly in obstructing publication and implementation of the new NICE guideline on ME/CFS?

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Archive of Surveys

Did you have the 2nd Covid vaccine, and will you have the 3rd vaccine booster in September?

  • Yes – I had the 2nd vaccine with no bad reactions (21%, 342 Votes)
  • Yes – I will be having the 3rd vaccine booster if I am eligible (31%, 491 Votes)
  • Yes – I had the 2nd vaccine and a short-term bad reaction (13%, 203 Votes)
  • Yes – I had the 2nd vaccine and a medium-term bad reaction (5%, 82 Votes)
  • Yes – I had the 2nd vaccine and a relapse that is ongoing (7%, 106 Votes)
  • No – I haven’t had the 2nd vaccine, but will when it is offered (2%, 32 Votes)
  • No – I decided not to have the 2nd vaccine and won’t have the 3rd vaccine either (1%, 11 Votes)
  • No – I decided not to have the 2nd vaccine because the 1st caused a bad reaction (4%, 58 Votes)
  • No – I will not be having the 3rd vaccine booster because the 2nd vaccine caused a bad reaction (3%, 51 Votes)
  • I haven’t made my mind up about the 3rd vaccine booster even if I am eligible (8%, 125 Votes)
  • I haven't received the 1st vaccine yet and will see how I get on (6%, 94 Votes)
  • Total Voters: 998

Start Date: July 6, 2021 @ 8:35 am
End Date: No Expiry

What has been your experience of DWP benefit assessments, or re-assessments, for ESA and / or PIP during the past year?

  • ESA - Excellent (5%, 12 Votes)
  • ESA - Good (3%, 7 Votes)
  • ESA - OK (6%, 13 Votes)
  • ESA - Mixed - good and bad (5%, 10 Votes)
  • ESA - Poor (2%, 5 Votes)
  • ESA - Very poor (8%, 18 Votes)
  • PIP - Excellent (3%, 7 Votes)
  • PIP - Good (5%, 12 Votes)
  • PIP - OK (4%, 9 Votes)
  • PIP - Mixed - good and bad (4%, 8 Votes)
  • PIP - Poor (7%, 16 Votes)
  • PIP - Very poor (19%, 43 Votes)
  • Not claiming any DWP benefits (28%, 61 Votes)
  • Total Voters: 183

Start Date: June 3, 2021 @ 12:34 pm
End Date: No Expiry

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

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