The new NICE ME/CFS guideline sets out the treatment for ME in England and Wales, but is not mandatory in Scotland. The Scottish Government has made it clear that it is waiting for this new guideline to develop support and treatment for people with ME. #MEAction Scotland is calling on the Scottish Government to act urgently and announce what it proposes to do to support the 21,000 people living with ME in Scotland.
The Government has responded to our campaign to end the use of graded exercise therapy (GET) as treatment for ME in Scotland by adding warnings to the Scottish statement on ME. We know, however, that GET is still being offered and we hope that the NICE guideline will lead to the removal of GET as treatment across Scotland.
As recently as April 2021, Roxanne O'Neill was prescribed/recommended GETby a physiotherapist at the Glasgow Centre for Integrative Care. Roxanne commented, "In 2008 I was made to do GET and I was in a wheelchair for a year! I was shocked to be offered it as recently as April this year, despite the release of the draft NICE guidelines in December 2020. The draft guidelines recommended that graded exercise therapy should no longer be given as treatment for ME. As a result of the physiotherapist’s recommendation, I ended my treatment at the Glasgow Centre - all the trust is gone."
We see the new NICE guideline as an opportunity to bring increased pressure on the Government to develop services for people with ME that are based on sound recommendations.
Janet Sylvester, volunteer with #MEAction Scotland, commented, “The NICE guideline is positive news for people with ME who have been neglected for so long. The Scottish Government must respond urgently to the recommendations. In particular, it is essential that an immediate warning on the harm done by graded exercise therapy is issued to all health professionals. There is currently only one specialist nurse in Scotland and no specialist consultants. The Scottish Government needs to put plans in place for specialist teams as is recommended in the new guideline”