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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

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

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

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