M.E. patient Sarah Reed has done incredibly well to obtain an early day motion that could lead to a debate in parliament about the inadequacies of the NICE guideline for ME/CFS.
It will certainly bring much-needed attention to the issue – and raise more awareness of M.E.
Stephen Timms, Labour MP for Newham East Ham, is the primary sponsor of the EDM, and Sarah has worked with members of #MEAction to produce a very convenient method for you to contact your own MP and ask that they support it.
The EDM draws particular attention to Graded Exercise Therapy and the fact that more than half of survey respondents have reported adverse events associated with this NICE recommended ‘treatment'.
See also: ME Association survey report, ‘No decisions about me, without me‘, for more information on the safety and effectiveness of graded exercise therapy, and comparisons with cognitive behavioural therapy and pacing. And recent research published by Dr Keith Geraghty that concluded, ‘Pacing brings about the greatest positive impact with the least negative reactions'.
The EDM also notes that research – studies relating to Cardiopulmonary Exercise Testing – is demonstrating abnormal responses to exercise in people with ME/CFS, which may provide support to the survey evidence and should certainly be part of the NICE consideration during the current guideline review process.
⇒ To see which MPs have signed the EDM thus far, click here.
That this House welcomes NICE's consultation with patients and their representatives on whether to review its clinical guidelines on Chronic Fatigue Syndrome/ME (CG53); notes that myalgic encephalomyelitis (ME) is a serious, debilitating, chronic health condition affecting about 250,000 people in the UK, and is concerned that about half of the patients asked in a number of surveys reported adverse effects on their health from Graded Exercise Therapy (GET) which is recommended by NICE; notes recent biomedical research indicating an abnormal physiological response to exercise in ME patients, and that the US Centre for Disease Control no longer recommends GET for ME; notes also the unanimous call from consultation stakeholders, and a petition of 15,180 patients, for NICE to update its guidelines on ME; and urges NICE to review CG53 and to consider patient experience and recent international scientific evidence in its assessment of the merits of GET for treating ME.
Please ask your MP to support this EDM
The ME Association fully supports the aims of the early day motion and we are very grateful to Sarah, Stephen Timms, and Sarah's colleagues at #MEAction for bring it all together in such a handy way.
We would encourage everyone who agrees with the EDM to consider contacting their MP using the method on #MEAction's website, and the helpful pro-forma email content.
It is likely that if you can personalise the email to your MP with some of your own experience of the NICE guideline, or of GET in particular, it will increase the chance that they add their signature to the EDM.
At the time of writing, only the sponsors of the motion are shown as having signed, so there is much work to be done – but given the huge expression of concern for the NICE guideline demonstrated in our recent petition, we are hopeful that this action will be successful.
Special screening of Unrest for MPs in the Speaker's room in Parliament
Several months ago, the ME Association contacted its patron, the Rt Hon John Bercow MP Speaker of the House of Commons, to try and arrange a special screening of Jen Brea's film Unrest.
Working with UK producer Lucy Wilson, we were able to secure the venue, and the early day motion pro-forma letter invites your MP to attend:
‘I would also like to let you know of a lunchtime reception in the Speaker’s State Rooms on 24th October. It includes an opportunity to see an edited version of the award winning film, Unrest. This was directed by Jennifer Brea, who has ME. It shows the reality of living with ME. I would like to invite you to attend. Please RSVP to sarah.reed@meaction.net to confirm your invitation.'
This could help make more MPs aware of the reality of M.E. and we will report the outcome of this reception in ME Essential magazine, in due course.
MPs who have signed the Early Day Motion thus far:
As at 15 September, 30 MPs had signed the EDM
(click image for more detail)
This is a question:
Can friends family and carers also ask their MPs to sign the EDM or is it only patients that can ask?
The pro-forma letter and other information only seems to apply to patients
I think it is perfectly OK for carers and family members of those affected by M.E. to ask their MPs to sign, and invite them to attend the screening of Unrest. You just need to manually amend the pro-forma and it should be fine.