People taking part in this survey can take a break at any time, and then return to complete the form later. MAKE SURE YOU HAVE ENABLED ‘COOKIES' IN YOUR WEBSITE BROWSER – FAILURE TO DO SO WILL RESULT IN YOU RETURNING TO THE BEGINNING OF THE FORM EACH TIME YOU GO BACK TO IT. There are plenty of opportunities throughout the form to express one’s own views. It is not just a ‘tick box’ exercise – there are plenty of open questions for people to tell us anything they want to tell us about their courses or self management of any of the therapies.
Over 1,000 people have now taken part in a major survey launched by the ME Association in May to ascertain people’s feelings about Cognitive Behaviour Therapy, Graded Exercise and Pacing.
It is for people with ME/CFS or Post Viral Fatigue Syndrome who have actually tried any of these approaches whether by attending a course or self-managing their symptoms.
The survey will run through the rest of the Spring and during the Summer and can be completed online by clicking on the link that appears below.
Plenty of advance notice will be given about when we intend to close the survey and the results will be published towards the end of the year.
If possible, please take part online. It will make the process of analysing the results so much easier.
Previous surveys have found that while – for some – these therapies improved their symptoms, significant proportions found they either had no effect on them whatsoever and in many cases actually made people feel worse.
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.
You may remember that the first NICE guidelines on ME/CFS, issued in 2007, were a huge disappointment to many in the ME UK population because Pacing was not a recommended therapy and no therapies were recommended for severe sufferers. Doctors have to follow NICE guidelines in giving advice to their patients and so you can see why your help in influencing a review is vital.
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 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 therapies
OR have been refused a course.
HOW CAN I TAKE PART?
Either go online now by clicking on the link below.
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, have difficulty reading on screen or don’t have a printer, 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. PLEASE ALLOW A WEEK OR TWO FOR THE FORMS TO BE SENT OUT. 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, click HERE.
A number of early comments were made when we launched the survey. To download a pdf of our answers to the 10 most frequently questions, please click HERE.