Listen to MEAction volunteers on Radio Scotland!
Available as an MP3 (7Mb) or stream via BBC iPlayer (starts at 36.23)
On 14th of February 2018, my mum (Janet) and I were on Radio Scotland to discuss #MEAction’s Millions Missing campaign in Scotland. The piece was instigated after the Millions Missing Time for Unrest event at the Scottish Parliament a couple of weeks ago.
As ME news seems to be moving excitingly fast at the moment, Radio Scotland invited on Carol Monaghan MP to talk about her Westminster debate on the PACE trial (if you haven’t asked your MP to attend please do so ). The PACE trial is the only piece of research the Scottish government, along with the Department of Work and Pensions, has funded into ME for 20 years, so it great to see a Scottish MP organise this debate. Carol Monaghan talked with real knowledge about the PACE trial, the many problems it has caused patients and its influence both locally and internationally. Hopefully the Scottish MPs who support the debate will call on the Scottish Government to provide funding for ME research. Dr Vance Spence from ME Research UK talked about how public funding could be used effectively and made a strong recommendation for Government funding for a Centre of Excellence.
Unfortunately we missed the introductions due to difficulty connecting and it turned out that the presenter had not been briefed on the campaign, so we were just asked to tell our “story” when it would have been nice to keep the pressure up on the Scottish Parliament! However, it was wonderful to have a piece which focussed on the problems of PACE rather than defending it, and an MP who has taken the time to learn about the problems and take action. We felt the segment was too short, and that the many problems with the PACE trial and CBT/GET are worth a longer segment. Something that an investigative programme could really sink it’s teeth into.
In August, we shared with you that we and six other ME/CFS organizations had submitted a proposal to the National Center of Health Statistics (NCHS) to fix the coding of ME/CFS in the US International Classification of Diseases (ICD-10-CM). Today, we are writing with an update on that proposal and asking that you sign the