We would like to respond to some of the points made on this thread.
As surveys by charities including Action for M.E. and the ME Association acknowledge, CBT, GET and GAT have benefit for some people with M.E. while others experience negative effects as a result. Further investigation is needed to find why it may benefit some people and not others.
However, we do know that there is absolutely no high-quality evidence base for treating the most severe form of M.E.
Prof Mark Baker of NICE acknowledged at a recent
Forward M.E. meeting that the NICE guideline fails to address the real issues in M.E. and has had a disappointing impact on specialist care and commissioning issues.
Clare McDermott and George Lewith will attend the Symposium to present their recent findings on the lack of NHS service provision for those most severely affected by M.E. We are aware of their other research and the concerns that have been expressed about some of this. But their focus for our Severe M.E. Symposium is the study
published in the BMJ Open in July.
Thank you to those who have been in touch to apply to take part in our virtual table discussions. We will be in touch as soon as possible to let you know what to do next.
We recognise that some people will not be well enough to take part at all. With input from our patient reference group, we decided that 45 minutes (35 minute discussion, 10 minutes feedback) would be the optimum length for productive discussion. Any contribution you can make will be hugely valued.
You can also:
- contribute to the discussion in advance via email
- sign-up to watch the event via Livestream on the day, with the facility to make comments on proceedings if you wish.
More details about this
here.
Severity of symptoms can fluctuate for each individual, and our symposium is open to
anyone affected by M.E., at whatever level of severity, to discuss how to better support those most severely affected (ie. those who are entirely house or bedbound).
Whatever your experience of M.E., we would still love to hear from you. You
can contribute to our discussion via email or sign-up to watch the event live on the day.
We do NOT support the misrepresentation of people with M.E. as mentally ill. As
discussed at a Forward M.E. meeting in June, we are working on a publication offering advice and support for people with M.E. who are/have been threatened with being sectioned under the Mental Health Act.
We work hard to raise awareness among the public, the media, the medical profession and the Government that M.E. is a physical illness of uncertain duration, defined by the World Health Organisation (G93.3) as neurological and affecting many body systems, typically the nervous and immune systems.
But we still do not know the cause of M.E. That’s why we support high-quality, evidenced-based
medical, social and economic research and invest in pilot research projects to help us learn more and to stimulate greater mainstream funding of M.E. research.
Please
let us know more details and we will help if we can. We have produced a
step-by-step guide to signing up to watch the event by Livestream that you might find useful.
Absolutely. We will feed some of the key points made here into our discussions on the day, and reiterate our invitation above to watch (and comment, if you are able to) via Livestream and/or contribute to discussions in advance.
As our CEO Sonya Chowdhury says in a
recent blog post, “I fundamentally believe that the only way to make any real progress is to unite to collaborate. We don't have to agree about some things or even most things (I am not trivialising the importance of these differences, I hasten to add). Surely we can find a way to work together, in spite of our differences? Speaking at the recent UK CFS/M.E. Research Collaborative conference, Prof Ian Lipkin challenged notions about criteria and exclusion, and encouraged the community to pull together because there is strength in numbers, a louder voice that cannot be ignored.”
