ME Assocaition Surveys

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

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