MEA Survey Archive
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
What is your overall opinion of the new NICE guideline on ME/CFS?
- It is a significant improvement (27%)
- It is a good improvement (18%)
- It is a step in the right direction (49%)
- I don't see any difference (4%)
- It is worse than the current guideline (1%)
- I do not intend reading it (1%)
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%)
- Moderate exacerbation (11%)
- Severe exacerbation (8%)
- No effect (32%)
- Minor improvement (1%)
- Major improvement (0%)
- Do not have the flu vaccination (36%)
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%)
- I managed education with some absences (16%)
- I managed education with poor attendance (22%)
- I managed education with a reduced curriculum (9%)
- I had home tutoring during this period (12%)
- I could not manage education or receive home tuition (36%)
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%)
- 1-2 years (8%)
- 3-5 years (9%)
- 5-7 years (5%)
- 7-10 years (5%)
- 10 years + (21%)
- Whenever I relapse I experience Severe M.E. (24%)
- Whenever I relapse I experience Very Severe M.E. (8%)
- I have never experienced Severe M.E. (6%)
- I have never experienced Very Severe M.E. (6%)
- Other - please leave a comment on MEA Facebook. (1%)
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%)
- Yes, confident. (2%)
- Yes, reasonably confident. (4%)
- I was uncertain. (9%)
- No, doubtful. (16%)
- No, I had no confidence. (30%)
- No, I have no confidence in the NHS at the best of times. (37%)
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%)
- Fairly well - but have had a few problems (22%)
- Mixed - good and bad experiences (22%)
- Not very well - have had quite a few problems (8%)
- Badly - mainly with the practical problems like shopping (6%)
- Badly - mainly with problems coping with M.E. and/or other medical conditions (11%)
- Badly - mainly with mental health problems and/or loneliness (4%)
- Badly - all three of the above (12%)
Total Voters: 1,573
Start Date: May 6, 2020 @ 8:48 am
End Date: No Expiry
Are you taking simple self-help precautions against catching winter flu and the coronavirus/Covid-19?
- Yes, all the time (74%)
- Yes, some of the time (16%)
- No, not worried about these infections (3%)
- No, not sure what to do (7%)
Total Voters: 1,467
Start Date: March 3, 2020 @ 10:05 am
End Date: No Expiry
How would you describe the relationship you currently have with your GP in regard to ME/CFS?
- Excellent (7%)
- Good (12%)
- Fair - but room for improvement (15%)
- Variable (8%)
- Poor (10%)
- Dreadful (12%)
- No recent contact with GP regarding ME/CFS (19%)
- I don’t have a regular GP – but relations have generally been good with whomever I see (2%)
- I don’t have a regular GP – and relations have been very hard to establish and maintain (15%)
- I do not have a GP (0%)
Total Voters: 533
Start Date: February 4, 2020 @ 1:51 pm
End Date: No Expiry
If funding becomes available from the MRC would you be willing to take part in research that will investigate the genetics of M.E.?
- Yes. I have M.E. and I support this research. (91%)
- Unsure. I have M.E. but I am not sure of my support at this stage. (5%)
- No. I have M.E. but I do not support this research. (1%)
- Yes. I don’t have M.E. but I support this research. (3%)
Total Voters: 502
Start Date: January 6, 2020 @ 10:10 am
End Date: No Expiry
What has happened to your health as a result of ME over the last 12 months?
- Major Improvement (2%)
- Moderate Improvement (2%)
- Minor Improvement (7%)
- No Overall Change - Stable (18%)
- Minor Deterioration (18%)
- Moderate Deterioration (33%)
- Major Deterioration (21%)
- Not had any M.E. symptoms in last 12 months (0%)
Total Voters: 505
Start Date: December 3, 2019 @ 8:16 am
End Date: No Expiry
What are the most important issues about M.E. that you want your MP to raise/lobby about after the general election?
- Increased government funding for biomedical research (13%)
- Inappropriate use of CBT and/or GET by the NHS (10%)
- Fair and accurate medical assessments for DWP benefits (11%)
- Children and adolescents - NHS services, education, inappropriate child care referrals (4%)
- Severe ME - prioritising NHS home visits, including improving social and respite care (7%)
- Provision of home visits from GPs for those that request them (6%)
- Problems with local NHS specialist and/or referral services (7%)
- Increased availability of all aspects of specialist/hospital based care (5%)
- Provision of accurate and continuing medical education for all health professionals (12%)
- Ending the stigma still surrounding the condition (10%)
- All of the above (13%)
- None of the above - please share your comments (0%)
- Other - please share your comments (1%)
Total Voters: 307
Start Date: November 5, 2019 @ 7:51 am
End Date: No Expiry
Do you own a pet? You can choose as many options as you like.
- Yes - Dog/s (26%)
- Yes - Cat/s (24%)
- Yes - Dog/s and Cat/s (6%)
- Yes - Fish (5%)
- Yes - Rabbit/s (2%)
- Yes - Reptile/s (2%)
- Yes - Horse/s (1%)
- Yes - Rodent/s (1%)
- Yes - Another type of pet (2%)
- No - Can't own a pet due to ME/CFS severity (14%)
- No - Can't own a pet due to allergies (4%)
- No - Can't own a pet due mainly to cost (3%)
- No - Can't own a pet due to a lack of space/facilities (5%)
- No - Don't really like pets (2%)
Total Voters: 454
Start Date: October 4, 2019 @ 10:20 am
End Date: No Expiry
If you were/are a pupil/student with M.E. what level of support did you receive from your school, college or university to help you manage your condition and remain in education?
- Excellent Support (4%)
- Good Support (4%)
- Adequate Support (1%)
- Patchy Support – It was sometimes helpful, sometimes not (18%)
- Unhelpful Support (8%)
- Detrimental Support (11%)
- No Support – I was unable to continue my studies and had to drop out (54%)
Total Voters: 91
Start Date: September 4, 2019 @ 11:07 am
End Date: No Expiry
What category of illness severity best reflects your (or the person you care for's) current level of disability? Please refer to the current blog that provides the definitions.
- Mild (9%)
- Moderate (42%)
- Severe (39%)
- Very Severe (10%)
Total Voters: 638
Start Date: August 5, 2019 @ 10:05 am
End Date: No Expiry
As a person with M.E. what has been your experience of physiotherapy?
- Positive and helped make my M.E. much better (1%)
- Positive and helped my M.E. (5%)
- Positive but did not help my M.E. (13%)
- Neither positive, nor negative (5%)
- Negative but helped my M.E. (0%)
- Negative and made my M.E. worse (16%)
- Negative and made my M.E. much worse (12%)
- I have not received physiotherapy for M.E. (48%)
Total Voters: 441
Start Date: July 1, 2019 @ 5:55 pm
End Date: No Expiry
To what extent has loneliness and social isolation become a consequence of having ME?
- Constantly (42%)
- Most of the time (39%)
- Some of the time (17%)
- Occasionally (1%)
- Not at all (1%)
Total Voters: 416
Start Date: June 6, 2019 @ 10:15 am
End Date: No Expiry
What does ME Awareness Week mean to you?
- Raising public awareness in general (13%)
- Providing education/research material to health professionals (6%)
- Informing politicians about the issues (6%)
- Attracting new researchers to the field (6%)
- Improving access to appropriate medical care (6%)
- Reaching out to those who are undiagnosed (4%)
- Highlighting the known facts about M.E. (8%)
- Highlighting those severely affected by M.E. (7%)
- Highlighting children and young people affected by M.E. (5%)
- Campaigning for funding for biomedical research (8%)
- Raising funds for M.E. charities (5%)
- Dispelling the myths about M.E. (11%)
- Connecting with people outside of the community (4%)
- Having some fun and making friends (2%)
- All of the above (8%)
- None of the above (0%)
- Other (please leave comment – see blog for details) (0%)
Total Voters: 260
Start Date: May 1, 2019 @ 9:53 am
End Date: No Expiry
In addition to ME/CFS, do you have a diagnosis of any of the following conditions?
- Endometriosis (5%)
- Fibromyalgia (16%)
- Hypermobility/Ehlers Danlos syndrome (7%)
- Interstitial Cystitis (3%)
- Irritable Bowel Syndrome (21%)
- Jaw pain - Temperomandibular Jaw Dysfunction (9%)
- Migraine (16%)
- Multiple Chemical Sensitivities (7%)
- Postural orthostatic Tachycardia Syndrome (PoTS) (12%)
- None of the above (4%)
Total Voters: 1,024
Start Date: April 3, 2019 @ 8:17 am
End Date: No Expiry
Overall, how would you describe the effect that cognitive dysfunction (“brain fog”) has on your ability to function on a day-to-day basis?
- Constant and severely disabling (16%)
- Constant and moderately disabling (17%)
- Constant and mildly disabling (6%)
- Varies between moderate and severe (23%)
- Varies between mild and moderate (23%)
- Varies between mild and severe (15%)
- No longer suffer with cognitive dysfunction (1%)
- Never had cognitive dysfunction (0%)
Total Voters: 799
Start Date: March 5, 2019 @ 7:44 am
End Date: No Expiry
If you have used private or NHS counselling to help with emotional, mental health or relationship problems linked to ME/CFS did you find it helpful?
- Yes - very helpful overall (9%)
- Yes - very helpful for some aspects (7%)
- Yes - quite helpful overall (4%)
- Yes - quite helpful for some aspects (18%)
- Neutral - neither helpful nor unhelpful (7%)
- No - but not harmful (9%)
- No - the approach taken made matters worse (13%)
- Never tried counselling (33%)
Total Voters: 278
Start Date: February 1, 2019 @ 5:50 pm
End Date: No Expiry
What do you consider are the most important three things that a GP needs to know about ME/CFS?
- Knowledge of range of symptoms and diagnostic criteria to make an early and accurate diagnosis (26%)
- An understanding of the impact of symptoms and awareness of pharmacological symptom management (20%)
- Where and when to refer for specialist medical help e.g. consultants, clinics (9%)
- An understanding of the role of complementary therapy and when it is appropriate to suggest this (2%)
- Treatment options that are currently available (7%)
- Clinical trials into treatments that are being carried out (2%)
- An understanding of the biomedical research into ME/CFS (13%)
- A willingness to make home visits and email/telephone consultations for severely affected (16%)
- Providing support and information re: benefits, employment etc. (5%)
- Other - Please provide comment on Website or Facebook or via email (1%)
Total Voters: 690
Start Date: January 8, 2019 @ 10:01 am
End Date: No Expiry
Does your doctor (GP or specialist) provide medical evidence for benefit, work, education or social care purposes?
- Yes – it was free, supportive and it helped me get what I needed (32%)
- Yes – it was not free, but was supportive, and it helped me get what I needed (16%)
- Yes – it was free, but was not supportive, and I didn't get what was needed (7%)
- Yes – it was not free, was not supportive and I didn't get what was needed (6%)
- Yes – but I couldn't afford to pay and did not get what was needed (1%)
- No – but I got what I needed without medical evidence (5%)
- No - I was unable to get what was needed without medical evidence (3%)
- No – Doctor refused to provide medical evidence (9%)
- I have never needed to ask for medical evidence (15%)
- Other - Please provide comment on Website or Facebook or via email (6%)
Total Voters: 287
Start Date: December 3, 2018 @ 8:57 am
End Date: No Expiry
Do you have a healthcare plan that is consulted, adhered to and kept up to date every time you see a healthcare professional?
- Yes - fully in place from a GP (1%)
- Yes - partly in place from a GP (1%)
- Yes - fully in place from hospital ME/CFS service (1%)
- Yes - partly in place from hospital ME/CFS service (1%)
- Yes - from a private doctor (1%)
- No - I never asked for one and/or was never offered one (73%)
- No - I asked for one but this was refused (8%)
- Not sure (5%)
- Do not have any contact with doctors (9%)
Total Voters: 841
Start Date: November 1, 2018 @ 9:26 am
End Date: No Expiry
If you employ Yoga (or have done in the past) as part of your management plan, how did it affect your M.E.?
- I find it very helpful (8%)
- I find it helpful (14%)
- No benefit for M.E. but I enjoy doing it (13%)
- No benefit for M.E. and no other benefits (5%)
- Felt worse (11%)
- Felt much worse (13%)
- Never used Yoga (36%)
Total Voters: 321
Start Date: October 1, 2018 @ 10:26 am
End Date: No Expiry
How many times have you used the NHS (GP, clinic, hospital etc.) in the last 12 months because of your M.E.?
- 0 times (34%)
- 1-5 times (38%)
- 6-10 times (12%)
- 11-15 times (8%)
- 16-20 times (3%)
- 21 or more times (5%)
Total Voters: 675
Start Date: September 3, 2018 @ 9:27 am
End Date: No Expiry
For women with ME/CFS: To what extent does premenstrual syndrome (PMS) change your ME/CFS symptoms?
- No Change in ME/CFS Symptoms (8%)
- Mild Exacerbation (9%)
- Moderate Exacerbation (24%)
- Severe Exacerbation (40%)
- Variable Exacerbation (10%)
- ME/CFS Symptoms Improved (1%)
- Not Applicable - Developed ME/CFS after periods finished (8%)
Total Voters: 416
Start Date: August 1, 2018 @ 8:42 am
End Date: No Expiry
How would you describe the relationship with your current GP when it comes to M.E.?
- Excellent (7%)
- Good (13%)
- OK (9%)
- Variable - Good and Bad (13%)
- Poor (10%)
- Dreadful - GP Not Interested (15%)
- Dreadful - GP Does Not Believe M.E. Exists (7%)
- No Longer See GP About M.E. (27%)
- Do Not Have An NHS GP (0%)
Total Voters: 467
Start Date: July 2, 2018 @ 8:39 am
End Date: No Expiry
Have you tried using the FODMAP diet for irritable bowel symptoms? If so, what was the effect?
- Helped a lot (19%)
- Helped a bit (6%)
- No change (7%)
- Made symptoms worse (1%)
- Made symptoms much worse (0%)
- Gave up - too complicated (5%)
- Not tried FODMAP (62%)
Total Voters: 193
Start Date: June 5, 2018 @ 9:32 am
End Date: No Expiry
Please let us know if, and at what level, M.E. has affected your education and indicate if any of the following statements hold true (multiple answers are allowed):
- I could not reach my potential at school (9%)
- I could not reach my potential in further education - including A'Levels (7%)
- I could not reach my potential in higher education (9%)
- I was able to reach my education potential despite having M.E. (3%)
- My peers left me behind (8%)
- I was absent for long periods (10%)
- I had to be home-schooled (home-tutored) (5%)
- I needed to study part-time (7%)
- I needed to study on-line e.g. open university or equivalent (3%)
- I was registered as a disabled student (4%)
- I needed special arrangements to study e.g. a study-partner or special equipment (4%)
- I needed special arrangements to take exams e.g. computer-based, extra time (7%)
- I needed to catch-up with coursework during the holidays (6%)
- I needed frequent extensions to coursework deadlines (7%)
- I had to drop-out of my chosen course and have not been able to return (8%)
- I failed exams (or coursework) and had to resit (4%)
Total Voters: 272
Start Date: May 3, 2018 @ 8:40 pm
End Date: No Expiry
What is your current employment status and, if employed, does your employer know you have M.E.?
- I work full-time (35+ hours a week) (9%)
- I work part-time (less than 35 hours a week) (13%)
- I work occasionally (i.e. not regular) (1%)
- I am self-employed full-time (1%)
- I am self-employed part-time (2%)
- I am occasionally self-employed (2%)
- I work in a full-time voluntary capacity (0%)
- I work in a part-time voluntary capacity (1%)
- I have told my employer that I have M.E. (19%)
- I have not told my employer that I have M.E. (3%)
- I am currently looking for work (1%)
- I am currently unable to work (49%)
Total Voters: 711
Start Date: April 12, 2018 @ 10:08 am
End Date: No Expiry
What are the 2 most effective forms of pain management you have used to help with ME/CFS symptoms?
- Amitriptyline or imipramine (10%)
- Co-codamol (9%)
- Duloxetine/Cymbalta (3%)
- Epsom salt bath/muscle soak (9%)
- Gabapentin/Neurontin (6%)
- Ibuprofen/Brufen (8%)
- Pregabalin/Lyrica (6%)
- Strong Opioid - e.g. morphine (5%)
- Tramadol (6%)
- Acupuncture (3%)
- TENS machine (2%)
- Other (19%)
- Nothing is effective (16%)
Total Voters: 583
Start Date: March 5, 2018 @ 8:17 am
End Date: No Expiry
What should be the most important research funding priorities for the ME Association Ramsay Research Fund in 2018? Please indicate your top 3 priorities from the options below:
- UK M.E. Biobank (10%)
- Role of infection (5%)
- Immune system dysfunction (19%)
- Mitochondrial function (19%)
- Neurological involvement e.g. inflammation, PoTS, and nervous system (19%)
- Metabolomic research (7%)
- Microbiome research (5%)
- Sleep research (4%)
- Activity management incl. Pacing (3%)
- Drug treatments aimed at symptom relief (7%)
- Other - please let us know! (2%)
Total Voters: 656
Start Date: January 4, 2018 @ 8:02 am
End Date: No Expiry
Do you have migraine-type headaches (that also have visual disturbances, sickness or speech disturbance) as part of M.E.?
- Yes, frequently. (29%)
- Yes, quite often. (19%)
- Yes, occasionally. (24%)
- No, but have done in the past. (10%)
- No, never had migraines. (18%)
Total Voters: 535
Start Date: December 3, 2017 @ 12:30 pm
End Date: No Expiry
To what extent has the very positive publicity surrounding 'Unrest' changed public recognition and understanding of ME/CFS in the UK?
- Major improvement (12%)
- Partial improvement (16%)
- Slight improvement (18%)
- Don't know (33%)
- Mixed - helpful and unhelpful (5%)
- Made slightly worse (3%)
- Made a lot worse (1%)
- I don't think it has made a difference (12%)
Total Voters: 366
Start Date: November 1, 2017 @ 8:05 am
End Date: No Expiry
Have you used melatonin to help with a sleep problem in ME/CFS? If so, was it helpful?
- Very helpful (16%)
- Of some help (14%)
- No effect (11%)
- Made worse (3%)
- Made much worse (2%)
- Not used melatonin (54%)
Total Voters: 541
Start Date: October 2, 2017 @ 4:09 pm
End Date: No Expiry
What has happened to your weight since you developed ME/CFS?
- Large increase (37%)
- Moderate increase (23%)
- Small increase (7%)
- No change (8%)
- Fluctuates (11%)
- Small decrease (3%)
- Moderate decrease (6%)
- Large decrease (5%)
Total Voters: 719
Start Date: September 1, 2017 @ 1:08 pm
End Date: No Expiry
If you have severe ME, which of the following services and DWP benefits have you (or your carer) received?
- GP Home Visits (11%)
- Hospital Home Visits (1%)
- Hospital Out Patient Management (7%)
- Hospital In Patient Management (1%)
- NHS Care Plan (1%)
- Social Care (8%)
- Personal Independence Payment (PIP) or (DLA) (25%)
- Carers Allowance (6%)
- Disabled Facilities Grant (3%)
- Blue Badge (22%)
- None of the above (14%)
Total Voters: 285
Start Date: August 10, 2017 @ 11:53 am
End Date: No Expiry
Do you think the NICE guideline for CFS/ME is working for you?
- Yes - I think it is (1%)
- Yes - but it could be better (0%)
- No - I think it needs a minor review (1%)
- No - I think it needs a major review (94%)
- I am not sure (1%)
- What's the NICE guideline? (3%)
Total Voters: 773
Start Date: July 10, 2017 @ 6:38 pm
End Date: No Expiry
Overall, how do you rate the June 27th BBC 'file on 4' radio programme that covered children with ME?
- Excellent (9%)
- Very Good (19%)
- Good (28%)
- Average (10%)
- Poor (6%)
- Very Poor (2%)
- No Opinion (0%)
- I did not listen to it (26%)
Total Voters: 128
Start Date: July 1, 2017 @ 2:05 pm
End Date: August 1, 2017 @ 2:05 pm
Should doctors be allowed to prescribe speculative or experimental forms of treatment - e.g. antiviral drugs - for people with ME/CFS?
- Yes - definitely (43%)
- Yes - in some circumstances (40%)
- Not sure (8%)
- No opinion (1%)
- Probably not (4%)
- Definitely not (4%)
Total Voters: 499
Start Date: June 1, 2017 @ 10:00 am
End Date: No Expiry
How much do you currently spend on vitamins, minerals and health supplements per month?
- Nothing (25%)
- Up to £5 (15%)
- £6 to £10 (12%)
- £11 – £25 (16%)
- £26 – £50 (14%)
- £51 – £100 (10%)
- £101 – £250 (4%)
- Over £250 (2%)
- Don't know (2%)
Total Voters: 378
Start Date: May 3, 2017 @ 1:22 am
End Date: No Expiry
What was the result of your most recent blood test, or before treatment was given, to assess thyroid gland function?
- low - hypothyroidism (19%)
- borderline low (14%)
- normal (44%)
- borderline raised (2%)
- raised - hyperthyroidism (2%)
- don't know (10%)
- never done (9%)
- awaiting results (0%)
Total Voters: 343
Start Date: April 1, 2017 @ 8:00 am
End Date: No Expiry
How often do you have sensory symptoms in the skin such as 'pins and needles', loss of sensation, or pain on touching the skin?
- Constantly (20%)
- Frequently (41%)
- Quite often (19%)
- Occasionally (15%)
- Never (5%)
Total Voters: 557
Start Date: March 1, 2017 @ 5:00 pm
End Date: No Expiry
Where is your normal place of residence?
- England (76%)
- Scotland (10%)
- Wales (3%)
- Northern Ireland (2%)
- Europe outside the UK (3%)
- North America or Canada (3%)
- Asia or Africa (0%)
- Australia or New Zealand (2%)
- Other (1%)
Total Voters: 629
Start Date: February 2, 2017 @ 1:18 pm
End Date: No Expiry
If you have been to an NHS ME/CFS clinic in the past year, how do you rate the advice/information that was given on management?
- Excellent (5%)
- Good (11%)
- Adequate (6%)
- Mix of good and bad (13%)
- Poor (17%)
- Dreadful (23%)
- No advice given/required (3%)
- Waiting for an appointment (3%)
- Unable to get a referral (19%)
Total Voters: 184
Start Date: January 3, 2017 @ 4:04 pm
End Date: February 2, 2017 @ 1:20 pm
Overall, how is your state of health and disability compared to this time last year?
- Recovered (0%)
- Almost recovered (1%)
- Much better (2%)
- A bit better (13%)
- Much the same (29%)
- A bit worse (29%)
- Much worse (26%)
Total Voters: 409
Start Date: December 1, 2016 @ 11:26 am
End Date: No Expiry
Following the re-analysis of the PACE trial data, should NICE remove its recommendations on CBT and GET?
- Yes - definitely (92%)
- Yes - to some extent (6%)
- Neutral (1%)
- Not sure (0%)
- Probably not (0%)
- Definitely not (1%)
Total Voters: 765
Start Date: November 1, 2016 @ 1:05 am
End Date: No Expiry
Do you have a diagnosis of PoTS (postural orthostatic tachycardia syndrome) in addition to ME/CFS?
- YES - definitely (21%)
- YES - probably (9%)
- Being assessed at the moment (3%)
- NOT SURE - never been assessed (46%)
- NO (21%)
Total Voters: 320
Start Date: October 3, 2016 @ 3:20 pm
End Date: No Expiry
Have you applied for a Personal Independence Payment (PIP) from the DWP? If so, what was the initial decision on your claim?
- Refused at initial application (24%)
- Refused on appeal (5%)
- Awarded care and mobility at either rate (26%)
- Care only at enhanced rate (0%)
- Care only at standard rate (7%)
- Mobility only at enhanced rate (1%)
- Mobility only at standard rate (5%)
- Application in progress (8%)
- I'm not applying for PIP (24%)
Total Voters: 222
Start Date: September 1, 2016 @ 12:57 pm
End Date: October 3, 2016 @ 3:25 pm
Should ME/CFS charities that support research be collaborating to help fund a Rituximab trial?
- Yes (67%)
- No (7%)
- Not sure (23%)
- Neutral (3%)
Total Voters: 224
Start Date: August 4, 2016 @ 5:45 pm
End Date: October 3, 2016 @ 3:22 pm
Which supplement, if any, have you found to be the most helpful in the management of your ME/CFS?
- carnitine (2%)
- co-enzyme Q10 (9%)
- EPA/eicosapentaenoic acid (2%)
- magnesium (12%)
- multivitamin preparation (2%)
- NADH/Enada (2%)
- vitamin B12 (11%)
- vitamin D (13%)
- none of them (30%)
- Never taken supplements (17%)
Total Voters: 323
Start Date: July 1, 2016 @ 4:35 pm
End Date: August 4, 2016 @ 5:46 pm
Have you had a blood test (25-hydroxyvitamin D) to check your vitamin D level? And if yes, what was the result before any treatment?
- Raised (2%)
- Normal (10%)
- Low (22%)
- Very Low (30%)
- Awaiting result (0%)
- No - never tested (36%)
Total Voters: 355
Start Date: June 1, 2016 @ 5:57 am
End Date: October 3, 2016 @ 3:24 pm
How disabled are you at present on the MEA Disability Rating Scale? The scale is in 'Quick Links' immediately to the right of this question
- 100% (3%)
- 90% (4%)
- 80% (14%)
- 70% (20%)
- 60% (21%)
- 50% (12%)
- 40% (12%)
- 30% (8%)
- 20% (3%)
- 10% (2%)
- 0% (1%)
Total Voters: 298
Start Date: May 10, 2016 @ 8:56 am
End Date: October 3, 2016 @ 3:24 pm
What happened if you recently applied for, or tried to renew, a Blue Badge (for disabled parking)?
- Approved (25%)
- Approved following appeal/reconsideration (3%)
- Refused on first application (4%)
- Refused on renewal (3%)
- Awaiting decision (4%)
- Never applied for one (39%)
- Automatic acceptance following DLA or PIP mobility award (22%)
Total Voters: 205
Start Date: April 2, 2016 @ 11:19 am
End Date: October 3, 2016 @ 3:23 pm