UK 21 June 2018 | 3-hour ME debate in Westminster Hall, secured by Carol Monaghan

Lord Winston, for example, who should have known better, given his previous career was in medicine.

Agree. We have to adapt to the phase the argument is at in the political sphere.

 

Huge thanks to everybody in the patient, medical, and parliamentary communities who made this debate possible and made sure it was well informed. Likes for all!

If we can break the back of this monster in the UK, from whence it was hatched, then it is basically over. Then we can turn our attention to the remaining handful of isolated holdouts, such as in Denmark.

 

https://www.actionforme.org.uk/news/parliamentary-debate-on-me-our-summary/
brief summary posted on AFME website

Parliamentary debate on M.E. - our summary
June 21, 2018

“At the moment M.E. receives practically no funding in terms of biomedical research…the treatments that are currently available are often more damaging to the person than no treatments at all.”

Carol Monaghan MP, Member of the UK Parliament for Glasgow North West, has been speaking out on the lack of appropriate treatments and biomedical research available for people with M.E. at a debate in Westminster Hall today.

Carol Monaghan MP highlighted the flaws of the PACE trial and the influence it’s had on healthcare and insurance for people affected by M.E. before informing the gathered members that Professor Sharpe – one of the PACE trial authors - has this week emailed her to say her actions are “unbecoming of an MP”. In response to his message, Carol Monaghan said: ““If members of parliament are not willing to stand up for the most vulnerable members of society, what hope do we have.”

The debate went on to highlight the effect M.E. has on children and the way social services are often called in when a child is too ill to attend school, the lack of biomedical research funding provided by the government, and that “the treatments that are currently available are often more damaging to the person than no treatments at all.”

Carol Monaghan MP stated that “the hope of the M.E. community is that when the NICE guidelines are revised GET will not be featured” and described how “the lack of understanding shown by some healthcare professionals to a person with M.E.’s suffering is one of the greatest frustrations.”

Several MPs later spoke on behalf of their constituents to raise awareness of the impact of M.E. before Carol Monaghan MP delivered a message to the M.E. community: “I don’t see this as being the end…the fight for the people with M.E. continues.”

A full transcript of the debate will be available on the Hansard website in the next few days.

 

Given he works for Oxford and it was written as part of his job (i.e. backing his research) I would question whether it should be private (at least I would have thought it would be subject to the FoI act).

 

I am always interested to see their reasoning to try to justify their methodology and changes. I keep feeling they may say something interesting - they just haven't yet.

 

https://twitter.com/user/status/1010055477747732480