Thursday, 24 January 2019

#MEdebate (+ transcript for video)

Today's in parliament M.E.* is being debated finally after 20 years (the last debate was in 1999).

Here's my virtual contribution. 


Stop GET (Graded Exercise Therapy) & CBT (Cognitive Behavioural Therapy) - it doesn't work.
NICE* guidelines need to change. 
Give people with M.E. (/CFS*) equal access to care wherever they live - no more 'postcode lottery' and increase specialist rehab centres.
Invest in biomedical research. 


In the UK 250,000 people have M.E/CFS; 1 in 4 people are severely affected, thats 62,500 people if you put that in numbers.


For to long M.E. suffers are left alone in silence. We want to contribute and be part of society; not hidden away. We deserve better.


Stephen Pound MP gave a really good contribute to today's debate.



[Video CC: "What we're talking about is that we have to change attitudes. You cannot dictate an attitude; we haven't had a dictator in this country since Oliver Cromwell. You cannot say what a people will do. But what you can do is to raise this issue calmly, objectively and using all the pragmatic skills available to us and to actually use the data that's available and I'd like to say to all those people out there suffering from M.E.; all those people who suffer from Chronic Fatigue Syndrome; all those people who've been ignored and belittled and insulted in many cases, this house recognises the reality of your condition. This house will not sit idly by whilst you suffer. This house will not ignore you. This house will devote it's intelligence and its resources to research, ultimately to resolve and to cure this terrible condition because we respect you, we understand you, and we give credit and credibility to what so many people have for far far too long been denied. M.E. sufferers the world over must know that this house and this nation is finally speaking for you."]

Thank you to all the MP's that went along to the debate today. Hopefully change will happen.

*UPDATE*
Watching the debate was very moving. Seeing such support for people like me and hearing that parliaments agrees that GET and CBT do more harm than good and that more biomedical research is needed and that M.E/CFS needs to be seen and treated and a physiological condition. That care professionals need to change their attitudes and that areas such as education, work, DWP and housing also need addressing. MP's also read out case studies from constituents in their area with M.E. and hearing their stories made me feel like I wasn't alone in my struggle with the condition.

To follow and find out more about the date search #MEdebate on Twitter.
The full debate can be found on Youtube here.

I also wanted to highlight how the PACE trial contributed towards the NICE guidelines developing the GET and CBT care for people with M.E/CFS. The PACE trial was deeply flawed and the results altered to make it look like GET and CBT worked for people with M.E/CFS. 
My favourite YouTuber Jessica Kellgren-Fozard makes a great video examining what is the PACE trial and how misleading it was.



(Myalgic Encephalopathy)
* (National Institute for Clinical Excellence)
* (Chronic Fatigue Syndrome)

No comments:

Post a Comment