Healthwatch Trafford reopen their ME/CFS survey (and launch one on fibromyalgia) | 4 August 2016

The results of a major survey into the health needs of people with ME/CFS, and how patients are being treated by GPs and hospitals – launched by Healthwatch Trafford last year – are still being analysed.

Almost 900 people completed the survey by the initial closing date in June last year.

Since then, local ME/CFS activist Karen Morris has been regularly pressing for publication of the report. She has learned that academics at Manchester Metropolitan University have been bought in to analyse trends thrown up by the interim 100-page report to make the results as meaningful as possible.

The survey has the support of both The Patients Association and Thyroid UK, whose chief executive Lyn Mynott asked Healthwatch Trafford why there had been a lengthy delay in publishing the results.

Adam Webb, from Healthwatch Trafford, told Thyroid UK:

“When it is completed, there will be the full report as well as a summary report, which will be shared with everyone involved as well as with every Healthwatch organisation in England, along with the results for their area. Please also note that the survey will remain open for the foreseeable future.”

Besides reopening the ME/CFS survey which contains 45 questions, Healthwatch Trafford has also launched a similar piece of work for people with fibromyalgia. Healthwatch Trafford tweeted this week that in fact the ME/CFS survey had never closed.


FULL RESPONSE TO LYN MYNOTT FROM HEALTHWATCH TRAFFORD


Hello

I just wanted to get in touch to share an update on what is going on with the ME/CFS survey we launched last year. It has been a simply huge piece of work which has attracted lots of attention, both nationally and (surprisingly) internationally and from media around the country.

Creating the report has been much more difficult than I ever anticipated. Having no background in research, I didn’t plan the project in the most efficient way and am now paying the price.

The report is currently over 100 pages long and still requires lots of work. However, we are now working with Manchester Metropolitan University to analyse trends and ensure that the report is of a high standard and as accurate as possible.

When it is completed, there will be the full report as well as a summary report, which will be shared with everyone involved as well as with every Healthwatch organisation in England, along with the results for their area. Please also note that the survey will remain open for the foreseeable future.

Find it at healthwatchtrafford.co.uk/get-involved/surveys/mecfs-survey/

Following the interest in the ME/CFS work, we are currently undertaking a similar piece of work on Fibromyalgia. We have an intern from Manchester University working with us to conduct a survey on experiences of health services of those with Fibromyalgia. I am aware that due to the nature of the conditions, there are some joint ME/CFS and Fibromyalgia support groups and that many people have symptoms of both, so I would ask that you help us publicise our new survey and fill it out if appropriate.

Find it at healthwatchtrafford.co.uk/get-involved/surveys/fibromyalgia-survey/

Thanks for all your help and patience, it is really appreciated.

Kind regards,
Adam Webb
Communications & Information Officer
Healthwatch Trafford

ME CONNECT HELPLINE

0344 576 5326

Available every day of the week between these times: 10am - 12noon, 2pm - 4pm and 7pm - 9pm.

Calls cost the same as other standard landline numbers (starting 01 or 02). If you have a call package for your landline or mobile phone then calls will normally come out of your inclusive minutes.