Next Thursday, Parliament will hold a 3-hour Westminster Hall debate on Myalgic Encephalomyelitis treatment and research in a monumental victory for the ME community.
In preparation for the debate, #MEAction UK volunteers prepared a parliamentary briefing along with three other charities – ME Association, Action for M.E., and the ME Trust. (Learn more about how the charities came together to work on the briefing.) While overall the briefing was strong, it contained some language that was inconsistent with what we stand for as an organisation and have always fought for as a community. We are sorry for the distress this has caused.
Over the last week, we’ve worked hard to incorporate the key feedback we’ve received from our volunteers, #MillionsMissing organisers and the community at large to ensure that there is no ambiguity regarding the urgent need to remove Graded Exercise Therapy and Cognitive Behavioural Therapy from the NICE Guidelines. We are grateful to all the charities who have supported this document for their responsiveness and feedback.
The briefing was meant to be a high level summary of the core issues people with ME face accessing appropriate medical care, social care and benefits. We urge individuals to contact their MPs to share their personal stories to underline the evidence put forth in this briefing – such as harm caused from following the psychosocial model of CBT/GET – or to draw attention to issues the briefing was not able to include. We also encourage other ME charities to submit their own briefings since it is not uncommon for MPs to receive multiple briefing documents for a debate.
[maxbutton id=”7″ url=”https://meaction.net/2018/06/08/westminster-hall-debate/” text=”Contact your MP” ]
[maxbutton id=”11″ url=”http://meaction.net/wp-content/uploads/2015/05/ME_Briefing_21_June_2018.pdf” text=” text=”Read the amended parliamentary briefing” ]
The parliamentary briefing deserved, and would have benefited from, a more robust process and greater staff support. Unfortunately, the limits of volunteer and staff capacity combined with a shifting external deadline meant that the process was rushed and the briefing was not reviewed as comprehensively as needed. We are going to be announcing in the coming weeks some changes to strengthen our internal processes. (And we believe all of these efforts will be greatly helped once we have a full-time, on-the-ground UK coordinator to provide support and project management for our #MEAction UK team of volunteers. Learn more about our UK fundraising campaign.)
We want to thank the ME community for bringing these issues to our attention. Your feedback and participation push us to do better, and we will continue to try our best to create an ethos of constructive criticism, transparency and engagement.
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8 thoughts on “Read the new parliamentary briefing”
As long as everyone doesn’t forget severely ill sufferers. They are always marginalized and often not even mentioned when arguing for our cause though they are the best proof just how horrific this illness can get.
Thank you sorry much for reviewing it to reflect ours ME community’s concerns. I really appreciate it.
Thank you too for all your hard work so far for our cause.
With my very best wishes and Love to you all.
Carol
Through my own personal experience, I always felt CBT and GET was a hinder rather then helpful for me.
Thank you to the four charities for your dedication and urgency on this matter.
*TYPO*
– the email generated by the “Take Action” link states Carol Monaghan’s EDM is 124 when it is 1247.
https://www.parliament.uk/edm/2017-19/1247
Sorry, we had some problems with our website yesterday but the link should be working now if you want to try again.
Thanks so much for this. It sums up the core issues very well. With my cognitive issues I often want to express these and can’t find the words so I will save the document and refer people to it instead!
People are also upset with the use of IOM definition. A person with major depression can meet the IOM definition. ICC is the definition I would support.
I’ve struggled for 12 years with this horrendous disease. Past 3 being my worst. I’m becoming more housebound and sometimes bedbound. I had very little help from anyone. This disease has robbed me of everything, my independence dignity and pride my marriage and so much more . I worked for a further 6/7 years after being diagnosed. Being told to keep pushing through. Don’t lie down to this . I wish I had listened to my body back then and not to doctors who clearly knew nothing about my disease . I’m now a shadow of the person I once was . We need help and soon before more life’s are lost to this . I simply cannot do another 12 years of this . It’s soul destroying.
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