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MAY SURVEY

The May website survey is asking about blood pressure measurement and ME/CFS.

Blood pressure is the pressure of blood in your arteries – the vessels that carry blood from your heart to your brain and the rest of your body. You need a certain amount of pressure to keep the blood moving round all parts of your body. Your blood pressure naturally goes up and down throughout the day and night, and it’s normal for it to go up while you’re moving about.

Is your blood pressure usually normal, low (hypotension) or high (hypertension)? Or do you not know what your blood pressure measurement is?

Archive of Surveys

This poll is no longer accepting votes

What do you believe is primarily responsible for triggering your ME/CFS?
1881 votes · 3252 answers

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

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