Is participation in this survey limited to UK residents?
Details about the survey are on the ME Association website. http://anonymouse.org/cgi-bin/anon-www.cgi/http://www.meassociation.org.uk/?p=11204
WHY DO THE SURVEY NOW?
We expect the results will influence the next review of the NICE Guideline on ME/CFS treatments, which is due to be announced next year. We’ll include the results in our submission to the review which may lead NICE (the National Institute for Health and Clinical Excellence) to come up with new guidance to doctors.
And the evidence we gather from people who have tried out these therapies may be helpful to medical researchers when they apply for funding for new studies into these approaches. As yet there has been no substantive research carried out into Pacing.WHO CAN TAKE PART?
Anyone who has – or has had – ME/CFS or PVFS AND
and have taken part in a course of CBT, GET or Pacing, either attending in person or going online. If you only completed part of a course, we would still welcome your views.OR
you must have self-managed your symptoms using one or more of these therapiesOR
have been refused a course.
HOW CAN I TAKE PART?
Either go online now
by clicking on the link below, and saving the form when you’ve had enough. You can always return to the form by clicking on the link which is showing in our “Quick Links’ box. It will take you straight to where you left off and, at any point, you can look back at or alter your earlier answers if you wish.
Or you can request that the form be sent to you by email for downloading to your screen for printing off yourself. Email Gill in our office
and she will send you a copy. Please make sure you post the form back to Gill by the middle of August.
If you don’t have an email address, for have difficulty reading on screen, ask for a paper copy to be posted to you by writing to Gill Briody, Ramsay ResearcH Fund, ME Association, 7 Apollo Office Court, Radclive Road, Gawcott, Bucks MK18 4DF, or phoning 01280 818964. Again, we ask for the forms to be returned by the middle of August. But please take part online if at all possible – it will save us expense and probably be easier for most of you.
To read more about the background to the survey, please click HERE.