25/5 Chat on ME and the Psychosocial Agenda: Introductory Tweets and Questions

CripTheVoteUK
3 min readMay 21, 2017
[Image: Black text on faded dark orange background that says #CripTheVoteUK / Special Twitter Chat / ME/CFS & the Psychosocial Agenda / 25 May, 2017 / 19:00–20:15 BST / guest hosted by @robmcd85 / @CripTheVoteUK ]

Introductory Tweets and Questions for the 25/5 #CripTheVoteUK chat

Welcome to tonight’s #CripTheVoteUK chat, looking at ME & the #psychosocialagenda

We are pleased to have guest host @robmcd85 with us today!

Please remember to use the #CripTheVoteUK hashtag when you tweet. FYI: today’s chat will be 70min long.

If you respond to a question such as Q1, your tweet should follow this format: “A1 [your message] #CripTheVoteUK”

Some background information: myalgic encephalomyelitis is a disabling neuroimmune condition. #CripTheVoteUK

It is often misdiagnosed as or wrongly conflated with chronic fatigue syndrome — in fact its symptoms are much more wide-ranging than just fatigue. #CripTheVoteUK

Within the #NHS, ME is treated exclusively using the ‘biopsychosocial model’. #CripTheVoteUK #endthestigma

The biopsychosocial model uses holistic language — negotiating biological impairment within psychological & social contexts. #CripTheVoteUK

However, it has actually been used to frame ME as a psychological disorder — and to limit available treatments for ME to graded exercise & psychotherapy. #CripTheVoteUK

This is despite the fact that the large-scale PACE trial that ‘validated’ these treatments has now been widely discredited. #CripTheVoteUK

Link to article on the discredited PACE trial: https://www.statnews.com/2016/09/21/chronic-fatigue-syndrome-pace-trial/ #CripTheVoteUK

The continued application of the BPS model to ME is referred to as the #psychosocialagenda. #CripTheVoteUK

It is significant in the context of #GE2017 because it is a case where scientific research and medical protocols have been manipulated > #CripTheVoteUK

in service of government agendas such as ‘welfare-to-work’ and decreased NHS spending. #CripTheVoteUK

Because of this, & because ME often receives very little attention in either medical or political contexts, > #CripTheVoteUK

we want to spend this evening discussing it in greater depth. #CripTheVoteUK

With that, we’ll hand the reins over to @robmcd85 who will be tweeting today’s questions!

Q0. Please introduce yourself in a way you’re comfortable with. What is your interest in ME and/or the #psychosocialagenda? #CripTheVoteUK

Q1. If you have an #invisibleillness, what has your experience with seeking health / social care been like? #CripTheVoteUK

Q2. If you have had psychotherapy and / or done graded exercise therapy, how have they affected your physical and #mentalhealth? #CripTheVoteUK

Q3. If you have claimed benefits as a person with #invisibleillness, what has your experience with the DWP been like? #CripTheVoteUK

Q4. How does treatment of ME in Britain differ from elsewhere in the world? #CripTheVoteUK

Q5. Do you consider the #psychosocialagenda to be a political issue? Why or why not? #CripTheVoteUK

This concludes the #CripTheVoteUK chat on ME and the #psychosocialagenda. Thank you to our guest host @robmcd85!

Please keep the convo going & join us for our 28/5 chat on Disability & the NHS, guest hosted by @HannahPopsy!

If you are interested in sharing your experiences with the treatment of ME in Britain, you can do so (anonymously) at https://t.co/Bi9lRNkGNv

Thanks again for joining us!

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CripTheVoteUK

Grassroots campaign to make disability rights a key issue in British politics. Donation link: paypal.me/cripthevoteuk