UK Parliament: ME/CFS Announcements: Statement by Health Secretary Sajid Javid, 12 May 2022

Stephen Holgate may have played the politics in a way that has worked out well for PWME.

But, nope, to be taken in by the BPS crowd is not 'understandable'. It was glaringly obvious to me that these people were bullshitting right from first coming across them. They talked a talk I had heard many times before. Wessely's first email to me showed either a serious lack of transparency or a lack of understanding of his subject.

 

It has been obvious since 1989.

EDIT It has always to be remembered that in his first full paper detailing his new methods SW reported that out of a potential sample of 50 patients eligible, 32 accepted treatment and 5 dropped out (1 claiming to be better). Of the remaining 27 4 finished claiming to be "much the same", and 1 "much worse".

On such findings can careers be made.

 

This has now attracted 38 signatures, so it could be worth UK members looking at the list to see if your MP is one of them.

 

I note that there is only one conservative - one of the sponsors.

Glad to see that Caroline Lucas, the Green, has signed. Perhaps somewhat at odds with her honorary patronship of the Sussex and Kent ME/CFS Society, although I can't search their website properly due to the lack of a search box.

https://www.s4me.info/threads/united-kingdom-sussex-kent-me-cfs-society-news.1906/page-4#post-364556

 

The role of EDMs has changed over time and there are calls for EDMs to be reformed or got rid of, certainly there are MPs who refuse to sign any EDM. Few EDMs get more than 30 signatures and those signatures are predominantly from opposition MPs - notably the smaller Parties for who it's a way of getting some attention, this in turn produces a negative attitude in Governing Party MPs who avoid signing on the grounds they are only giving credibility to the 'other side'.

Edit to reduce word salad.

 

Pleased to see my MP, Sir Ed Davey ( Libdem), in support of the EDM. As party leader (albeit of a small party) I know his time is now more pressured especially with seats in the House to win. Grateful for his ongoing help.

 

"Following @sajidjavid Health Secretary’s announcement to tackle Myalgic Encephalomyelitis (ME) with better care, support and research. Journalist @TimesONeill speaks to @Emmabarnett about ME which took his eldest daughter’s life. Listen at 10: bbc.in/3z0eEiK"

 

Biopsychosocial ideologues are out on twitter, preaching BPS and spreading misinformation in response to the Woman's Hour interview.

https://twitter.com/user/status/1528663312673783808

 

Maybe a breach of BBC editorial guidelines:

Editorial Guidelines

1.3 The public interest

"The BBC’s Mission [4] specifies that we must ‘act in the public interest’. It is in the public interest to fulfil our mission to produce output to inform, educate and entertain. There is no single definition of public interest, but it includes freedom of expression; providing information that assists people to better comprehend or make decisions on matters of public importance; preventing people being misled by the statements or actions of individuals or organisations. The public interest is also served in exposing or detecting crime or significantly anti-social behaviour and by exposing corruption, injustice, significant incompetence or negligence."

my bold^

 

I slept through Woman's Hour because my sleep pattern is all over the place at the moment but have just listened on iplayer. It is at the beginning of the programme 0-22 minutes.
I can't really find words. It was a superb piece. Thanks to Sean for his bravery. He speaks as well as he writes- so many points well made. Condolences to him and his family, and Maeve's mother. Thanks too to Charles Shepherd. I hope what is going on behind the scenes brings us benefits soon.

 

I too thought it was a really touching 25 minutes.
I too was so moved, and to tears by the sheer trauma of it all.

Shame on the R Colleges' NICE Round table Guidance event - dissent and particularly the Academy of Royal Colleges.
I do hope Chair, Professor Dame... H S Lampard can stop and listen in her busy, busy 100% busy schedule.....?

She has had a high media profile with over 20,000 mentions in printed media and completed over 350 broadcast media interviews.
Twitter....."Chair AoMRC, Chair National Acad for Social Prescribing, GP in Lichfield, Prof GP Education B'ham Uni: I care passionately, 100% busy, 100% enthusiastic she/her`'
Does she have time for any practical hands on medicine?

"Following @sajidjavid Health Secretary’s announcement to tackle Myalgic Encephalomyelitis (ME) with better care, support and research.
Journalist @TimesONeill speaks to @Emmabarnett about ME which took his eldest daughter’s life. Listen at 10: bbc.in/3z0eEiK"

What, no ME Services in Wales... well what would you know?
NICE Implementation PDHSL
....???

 

Academy of Royal College A Charity!!!!

https://www.aomrc.org.uk/invited-reviews-2020/

 

The ME Association has a transcript of the broadcast

https://meassociation.org.uk/2022/05/bbc-radio-4-womans-hour-discusses-me-cfs/

 

imagine how ghoulish one would have to be to regurgitate BPS talking points in response to this harrowing and courageous segment? Alas, there are several individuals on social media doing just that. It’s exactly why Medicine is so systemically shattered. We need the type of overhaul in this space the Secretary alluded to, and we need it now.

 

sean o'neill on womans' hour today with Charles Shepherd
BBC Radio 4 - Woman's Hour (23/05/22) discusses ME/CFS - YouTube

 

Dare I ask whom, and saying what exactly?

 

Hard to listen to this interview without tears in your eyes. This line resonated with me in particular, as I suspect it would for all here.

"She researched and researched, she was incredibly knowledgeable about her condition, but the patient can't cure herself. She doesn't have the resources. She can't develop the new technologies and new medicines that are required."

 

Exactly. The previous year Crawley did not get two huge grants as well, and her bogus LP study had also become an embarrassment, perhaps, as well as all her other public antics.