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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 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

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