SURVEYS

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See an archive of previous surveys

JUNE SURVEY

Since the start of the Covid pandemic in March 2020 have you been able to access NHS services about ME/CFS: 
to receive an early and accurate diagnosis
to see a GP in person as often as you needed to
to see a GP remotely e.g., by video/phone, as often as you needed to
to obtain a home visit as often as you needed to
to get a referral to an ME/CFS specialist service?
to see ME/CFS specialists in person
to see ME/CFS specialists remotely e.g., by video/phone.
to obtain a home visit from ME/CFS specialists
Based on your own experience since March 2020, how do you rate the NHS and its ability to provide adequate accessible support for your needs?

Archive of Surveys

This poll is no longer accepting votes

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

This poll is no longer accepting votes

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

How much do you currently spend on vitamins, minerals and health supplements per month?

  • Nothing (25%)
  • Up to £5 (15%)
  • £6 to £10 (12%)
  • £11 – £25 (16%)
  • £26 – £50 (14%)
  • £51 – £100 (10%)
  • £101 – £250 (4%)
  • Over £250 (2%)
  • Don't know (2%)
  • Total Voters: 378

Start Date: May 3, 2017 @ 1:22 am
End Date: No Expiry

What was the result of your most recent blood test, or before treatment was given, to assess thyroid gland function?

  • low - hypothyroidism (19%)
  • borderline low (14%)
  • normal (44%)
  • borderline raised (2%)
  • raised - hyperthyroidism (2%)
  • don't know (10%)
  • never done (9%)
  • awaiting results (0%)
  • Total Voters: 343

Start Date: April 1, 2017 @ 8:00 am
End Date: No Expiry

How often do you have sensory symptoms in the skin such as 'pins and needles', loss of sensation, or pain on touching the skin?

  • Constantly (20%)
  • Frequently (41%)
  • Quite often (19%)
  • Occasionally (15%)
  • Never (5%)
  • Total Voters: 557

Start Date: March 1, 2017 @ 5:00 pm
End Date: No Expiry

Where is your normal place of residence?

  • England (76%)
  • Scotland (10%)
  • Wales (3%)
  • Northern Ireland (2%)
  • Europe outside the UK (3%)
  • North America or Canada (3%)
  • Asia or Africa (0%)
  • Australia or New Zealand (2%)
  • Other (1%)
  • Total Voters: 629

Start Date: February 2, 2017 @ 1:18 pm
End Date: No Expiry

If you have been to an NHS ME/CFS clinic in the past year, how do you rate the advice/information that was given on management?

  • Excellent (5%)
  • Good (11%)
  • Adequate (6%)
  • Mix of good and bad (13%)
  • Poor (17%)
  • Dreadful (23%)
  • No advice given/required (3%)
  • Waiting for an appointment (3%)
  • Unable to get a referral (19%)
  • Total Voters: 184

Start Date: January 3, 2017 @ 4:04 pm
End Date: February 2, 2017 @ 1:20 pm

Overall, how is your state of health and disability compared to this time last year?

  • Recovered (0%)
  • Almost recovered (1%)
  • Much better (2%)
  • A bit better (13%)
  • Much the same (29%)
  • A bit worse (29%)
  • Much worse (26%)
  • Total Voters: 409

Start Date: December 1, 2016 @ 11:26 am
End Date: No Expiry

Following the re-analysis of the PACE trial data, should NICE remove its recommendations on CBT and GET?

  • Yes - definitely (92%)
  • Yes - to some extent (6%)
  • Neutral (1%)
  • Not sure (0%)
  • Probably not (0%)
  • Definitely not (1%)
  • Total Voters: 765

Start Date: November 1, 2016 @ 1:05 am
End Date: No Expiry

Do you have a diagnosis of PoTS (postural orthostatic tachycardia syndrome) in addition to ME/CFS?

  • YES - definitely (21%)
  • YES - probably (9%)
  • Being assessed at the moment (3%)
  • NOT SURE - never been assessed (46%)
  • NO (21%)
  • Total Voters: 320

Start Date: October 3, 2016 @ 3:20 pm
End Date: No Expiry

Have you applied for a Personal Independence Payment (PIP) from the DWP? If so, what was the initial decision on your claim?

  • Refused at initial application (24%)
  • Refused on appeal (5%)
  • Awarded care and mobility at either rate (26%)
  • Care only at enhanced rate (0%)
  • Care only at standard rate (7%)
  • Mobility only at enhanced rate (1%)
  • Mobility only at standard rate (5%)
  • Application in progress (8%)
  • I'm not applying for PIP (24%)
  • Total Voters: 222

Start Date: September 1, 2016 @ 12:57 pm
End Date: October 3, 2016 @ 3:25 pm

Should ME/CFS charities that support research be collaborating to help fund a Rituximab trial?

  • Yes (67%)
  • No (7%)
  • Not sure (23%)
  • Neutral (3%)
  • Total Voters: 224

Start Date: August 4, 2016 @ 5:45 pm
End Date: October 3, 2016 @ 3:22 pm

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