SURVEYS

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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?

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

If you have had a Covid-19 booster how did it affect you....

  • Pfizer (Comirnaty) - no adverse reaction (11%)
  • Pfizer (Comirnaty) - mild reaction (25%)
  • Pfizer (Comirnaty) - moderate reaction (16%)
  • Pfizer (Comirnaty) - severe reaction (7%)
  • Moderna (Spikevax) - no adverse reaction (2%)
  • Moderna (Spikevax) - mild reaction (11%)
  • Moderna (Spikevax) - moderate reaction (10%)
  • Moderna (Spikevax) - severe reaction (4%)
  • Waiting to have a booster (3%)
  • Not yet decided (2%)
  • Not having a booster (4%)
  • My ME has improved after Pfizer (Comirnaty) (1%)
  • My ME has improved after Moderna (Spikevax) (0%)
  • My ME has improved after Astrazeneca (0%)
  • Astrazeneca - no adverse reaction (1%)
  • Astrazeneca - mild reaction (1%)
  • Astrazeneca - moderate reaction (1%)
  • Astrazeneca - severe reaction (1%)
  • Total Voters: 1,563

Start Date: December 7, 2021 @ 2:46 pm
End Date: No Expiry

Do you agree/disagree with the decision by NICE to state that GET should no longer be used as a recommended treatment for ME?

  • Agree (99%)
  • Not Sure (1%)
  • Disagree (0%)
  • Total Voters: 1,909

Start Date: November 3, 2021 @ 10:07 pm
End Date: No Expiry

Are you currently receiving welfare benefits, carers allowance, social care or have you made any applications in the last 12 months?

  • I receive Personal Independence Payment (PIP) (34%)
  • I receive Employment and Support Allowance (ESA) (25%)
  • I receive Universal Credit (UC) and Limited Capability For Work (LCW) (2%)
  • I receive Universal Credit (UC) and Limited Capability For Work Related Activity (LCWRA) (6%)
  • I receive Disability Living Allowance (DLA) (2%)
  • I receive Attendance Allowance (AA) (0%)
  • I receive Social Care (SC) (1%)
  • I receive Carers Allowance (CA) (1%)
  • I applied for PIP but was unsuccessful (4%)
  • I applied for ESA but was unsuccessful (2%)
  • I applied for UC but was not given LCW (1%)
  • I applied for UC but was not given LCWRA (1%)
  • I applied for DLA but was unsuccessful (0%)
  • I applied for AA but was unsuccessful (0%)
  • I applied for SC but was unsuccessful (0%)
  • I applied for CA but was unsuccessful (0%)
  • My initial application was declined, and I am waiting on a mandatory reconsideration (1%)
  • My initial application was declined, and I am waiting for a tribunal hearing (0%)
  • I did not think I was eligible for these benefits and so haven’t applied (8%)
  • I have not needed to apply for any of these benefits (5%)
  • I am currently going through the application and assessment process (5%)
  • Total Voters: 460

Start Date: October 4, 2021 @ 8:17 pm
End Date: No Expiry

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

  • Yes, they have acted responsibly (4%)
  • Not sure (2%)
  • No, they have acted irresponsibly (94%)
  • Total Voters: 1,789

Start Date: September 1, 2021 @ 9:45 am
End Date: No Expiry

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%)
  • Yes – I will be having the 3rd vaccine booster if I am eligible (31%)
  • Yes – I had the 2nd vaccine and a short-term bad reaction (13%)
  • Yes – I had the 2nd vaccine and a medium-term bad reaction (5%)
  • Yes – I had the 2nd vaccine and a relapse that is ongoing (7%)
  • No – I haven’t had the 2nd vaccine, but will when it is offered (2%)
  • No – I decided not to have the 2nd vaccine and won’t have the 3rd vaccine either (1%)
  • No – I decided not to have the 2nd vaccine because the 1st caused a bad reaction (4%)
  • No – I will not be having the 3rd vaccine booster because the 2nd vaccine caused a bad reaction (3%)
  • I haven’t made my mind up about the 3rd vaccine booster even if I am eligible (8%)
  • I haven't received the 1st vaccine yet and will see how I get on (6%)
  • 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%)
  • ESA - Good (3%)
  • ESA - OK (6%)
  • ESA - Mixed - good and bad (5%)
  • ESA - Poor (2%)
  • ESA - Very poor (8%)
  • PIP - Excellent (3%)
  • PIP - Good (5%)
  • PIP - OK (4%)
  • PIP - Mixed - good and bad (4%)
  • PIP - Poor (7%)
  • PIP - Very poor (19%)
  • Not claiming any DWP benefits (28%)
  • 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%)
  • Good (5%)
  • Average (8%)
  • Poor (33%)
  • Very Poor (46%)
  • I do not engage with the NHS (5%)
  • 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%)
  • England - negative outcome: I was told I couldn't have an early vaccination (37%)
  • England - awaiting outcome (4%)
  • N. Ireland - positive outcome: I received or will receive early vaccination (0%)
  • N. Ireland - negative outcome: I was told I couldn't have an early vaccination (1%)
  • N. Ireland - awaiting outcome (0%)
  • Scotland - positive outcome: I received or will receive early vaccination (2%)
  • Scotland - negative outcome: I was told I couldn't have an early vaccination (3%)
  • Scotland - awaiting outcome (1%)
  • Wales - positive outcome: I received or will receive early vaccination (2%)
  • Wales - negative outcome: I was told I couldn't have an early vaccination (2%)
  • Wales - awaiting outcome (0%)
  • General - positive outcome: I didn't use the template letters, but I received or will receive early vaccination (4%)
  • General - negative outcome: I didn't use the template letters, and was told I couldn't have an early vaccination (2%)
  • General - I wasn't aware of the template letters but hope to use them soon (0%)
  • General - I haven't been able to engage with my GP or CCG/Health Board (1%)
  • General - I don't think eligibility is a viable option and I haven't pursued it (1%)
  • General - I haven't been able to pursue eligibility because I am not well enough (2%)
  • 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%)
  • I felt surprisingly better for a few days after the vaccine. (2%)
  • I experienced side effects e.g., sore arm, increased fatigue, headache, chills, slight fever, etc. (19%)
  • I had some of the above side-effects and an increase in ME/CFS symptoms. (12%)
  • I had some of the above side-effects but no increase in ME/CFS symptoms. (9%)
  • I had all of the above side-effects and an increase in ME/CFS symptoms. (12%)
  • I had none of the above side-effects but had an increase in ME/CFS symptoms. (1%)
  • I had significant side-effects and/or a significant increase in ME/CFS symptoms and had to consult my doctor. (4%)
  • The issues resolved within days of the vaccination. (10%)
  • The issues resolved within a week of the vaccination. (8%)
  • The issues took longer than a week to resolve. (9%)
  • The issues remain unresolved and have led to a relapse in ME/CFS. (7%)
  • 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%)
  • Yes - I have already been vaccinated (12%)
  • Yes - Probably (7%)
  • Not sure - waiting for more information on possible side effects (5%)
  • Not sure - waiting to see what happens to other people with ME/CFS who are vaccinated (12%)
  • Probably not (2%)
  • Definitely not (5%)
  • Total Voters: 6,060

Start Date: January 13, 2021 @ 9:43 am
End Date: No Expiry

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