SURVEYS

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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

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

Should or should not the anonymised data from the PACE trial be released for independent analysis?

  • Should be released (99%)
  • Should not be released (1%)
  • Not sure (1%)
  • No opinion (0%)
  • Total Voters: 1,480

Start Date: March 1, 2016 @ 11:02 am
End Date: October 3, 2016 @ 3:23 pm

How long did it take from the onset of your ME/CFS symptoms to a doctor confirming a diagnosis of ME/CFS?

  • Less than 3 months (4%)
  • 4 to 6 months (14%)
  • 7 to 12 months (15%)
  • 13 to 24 months (17%)
  • 2 to 5 years (26%)
  • 6 to 10 years (8%)
  • Over 10 years (11%)
  • Not certain (2%)
  • Never confirmed by a doctor (3%)
  • Total Voters: 656

Start Date: February 1, 2016 @ 10:26 am
End Date: March 10, 2016 @ 9:39 pm

How do you rate the management of your ME/CFS that is provided by your usual NHS GP?

  • Excellent (4%)
  • Good (9%)
  • Fair (7%)
  • Mixed - good and bad (16%)
  • Poor (23%)
  • Dreadful (23%)
  • I don't have a GP (0%)
  • I have no contact with my GP re: ME/CFS (18%)
  • Total Voters: 488

Start Date: January 4, 2016 @ 9:23 am
End Date: March 10, 2016 @ 9:38 pm

If you've had a DWP benefit medical assessment with Maximus (who took over from Atos in April) how do rate them?

  • Excellent (7%)
  • Good (13%)
  • Fair (7%)
  • Neutral (7%)
  • Poor (27%)
  • Dreadful (39%)
  • Total Voters: 30

Start Date: December 3, 2015 @ 9:14 pm
End Date: March 10, 2016 @ 9:43 pm

How do you rate the UK newspaper coverage of the latest PACE trial analysis that was published in Lancet Psychiatry?

  • Excellent (1%)
  • Good (0%)
  • Fair (0%)
  • Mixed – Good and Bad (4%)
  • Poor (11%)
  • Dreadful (82%)
  • No opinion (2%)
  • Total Voters: 435

Start Date: November 2, 2015 @ 4:53 pm
End Date: March 10, 2016 @ 9:42 pm

How long did it take between the onset of your symptoms and a firm diagnosis of ME/CFS being made by a doctor?

  • Less than 3 months (3%)
  • 3 – 6 months (9%)
  • 6 – 12 months (16%)
  • 12 – 18 months (11%)
  • 18 months - 2 years (10%)
  • 2 – 4 years (18%)
  • 5 years or more (26%)
  • Never had a doctor diagnosis (5%)
  • Awaiting a diagnosis (2%)
  • Total Voters: 773

Start Date: August 31, 2015 @ 5:20 pm
End Date: March 10, 2016 @ 9:42 pm

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