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

How would you prefer your illness to be described?

  • M.E. (70%)
  • ME/CFS (13%)
  • CFS/ME (4%)
  • CFS (3%)
  • PVFS (1%)
  • CFIDS (1%)
  • Other (4%)
  • Not bothered (4%)
  • Total Voters: 887

Start Date: December 1, 2014 @ 1:49 pm
End Date: No Expiry

To what degree does joint pain occur in your ME/CFS?

  • severe (35%)
  • moderate (35%)
  • mild (10%)
  • occasional (11%)
  • never had joint pain (9%)
  • Total Voters: 669

Start Date: November 2, 2014 @ 4:04 pm
End Date: December 1, 2014 @ 2:07 pm

Reports from the Research Collaborative conference in Bristol suggest exciting new directions for ME/CFS research (see http://wp.me/p3Txzy-5ud). What do you think?

  • A breakthrough is on the way (5%)
  • A big step forward (7%)
  • There's potential for better, future research (15%)
  • Looks hopeful, but it's early days (27%)
  • Same old, same old... (20%)
  • Too much emphasis on chronic fatigue/CFS (17%)
  • No comment (9%)
  • Total Voters: 150

Start Date: October 3, 2014 @ 7:54 am
End Date: December 1, 2014 @ 2:07 pm

What is the most effective treatment you have used for pain relief in ME/CFS?

  • acupuncture (4%)
  • amitriptylene (10%)
  • aspirin (1%)
  • gabapentin/Neurontin (10%)
  • pregabalin/Lyrica (7%)
  • ibuprofen/Brufen (9%)
  • paracetamol (6%)
  • strong opiate (11%)
  • TENS machine (1%)
  • tramadol (12%)
  • other (29%)
  • Total Voters: 310

Start Date: September 8, 2014 @ 10:27 am
End Date: December 1, 2014 @ 2:07 pm

Has your GP ever referred you to a specific NHS consultant or ME/CFS service of your choice - regardless of location?

  • YES – successful (34%)
  • YES – not successful (13%)
  • NO – refused to do so (13%)
  • NO – I've never asked (39%)
  • NO – I do not have a GP (1%)
  • Total Voters: 352

Start Date: July 31, 2014 @ 9:00 pm
End Date: December 1, 2014 @ 2:06 pm

If you have severe ME, how do you rate your current care and management by the NHS?

  • Excellent (2%)
  • Good (4%)
  • Average (10%)
  • Poor (20%)
  • Dreadful (17%)
  • Non-existent (47%)
  • Total Voters: 309

Start Date: July 4, 2014 @ 9:59 am
End Date: December 1, 2014 @ 2:00 pm

If you have applied for ESA (Employment and Support Allowance), what was the outcome?

  • Awaiting a decision (9%)
  • Placed in Support Group (31%)
  • Placed in Work-Related Activity Group (16%)
  • Refused - successful on appeal (12%)
  • Refused - appeal in progress (2%)
  • Refused - did not appeal (6%)
  • Have not applied for ESA (20%)
  • Refused – not successful on appeal (4%)
  • Total Voters: 301

Start Date: June 1, 2014 @ 8:03 am
End Date: July 4, 2014 @ 11:31 am

If the MEA wins some money in this month's Direct Debit voting contest, which of our biomed research priorities should it go to?

  • Rituximab trial (18%)
  • Neuro-inflammation and post-mortem research (19%)
  • Immune system research (48%)
  • No preference (15%)
  • Total Voters: 273

Start Date: May 1, 2014 @ 9:31 am
End Date: June 1, 2014 @ 8:09 am

Personal Independence Payment (PIP) was born in April 2013. How long did it take to process your application and reach a decision?

  • One month (1%)
  • Two months (0%)
  • Three months (0%)
  • Four months (2%)
  • Five months (2%)
  • Six months (3%)
  • Six to nine months (5%)
  • More than nine months (3%)
  • Not applied for PIP (84%)
  • Total Voters: 132

Start Date: April 1, 2014 @ 1:27 pm
End Date: June 1, 2014 @ 8:09 am

NICE have stated that there is no reason to review their controversial guideline on ME/CFS. Do you agree?

  • Yes (27%)
  • Not sure (2%)
  • No opinion (0%)
  • NO (71%)
  • Total Voters: 475

Start Date: March 1, 2014 @ 12:33 am
End Date: June 1, 2014 @ 8:08 am

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