SURVEYS

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SEVERE ME WEEK SURVEY

We are concentrating on three very important aspects of what GPs (General Practitioners), and other members of a primary care health team, should be doing to care for and manage people with ME/CFS who cannot travel to the surgery for appointments.

  • In relation to home visits and ongoing care, all the evidence that we currently have indicates the many people in this situation experience great difficulty in obtaining a home visit and are often refused one or told they are not available.
  • In regard to ongoing and regular reviews the picture is very similar. In some cases, this means that people no longer have any contact with their GP.
  • When it comes to support for social care and needs assessments, and help with aids and adaptions, the picture is more mixed in that some GPs are happy to be supportive, while others are not.

If you are (or the person you look after is) severely or very severely affected by ME/CFS, how do you rate the service provided by your GP? 

In General:
Home visits:
Regular reviews:
Help with social care:
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Which of the following conditions, which are more common, or appear to be more common in people with ME/CFS, do you currently have:
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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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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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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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