The Times: Sean O'Neill: Sajid Javid promises radical action for patients debilitated by ME

[Countrygirl]

https://www.thetimes.co.uk/article/...tion-for-patients-debilitated-by-me-9bkq6qf5g

Sajid Javid promises radical action for patients debilitated by ME
Health secretary challenges orthodoxy that chronic condition is only psychological

new
Sean O’Neill
Thursday May 12 2022, 6.30pm, The Times

The health secretary marked World ME Day by becoming the first senior minister to speak out about the condition
JACOB KING/PA
Sajid Javid has promised a radical new approach to the debilitating illness myalgic encephalomyelitis, making the government a world leader in tackling what he called “an incredibly disabling condition”.
The health secretary marked World ME Day by telling parliament he was “committed to better care and support for people living with ME and their families”.
Javid will lead the development of a delivery plan for patient care and new research into the condition — also known as chronic fatigue syndrome (CFS) — which affects at least 250,000 people across Britain.

“At the heart of the delivery plan will be two core principles; firstly, that we do not know enough about ME/CFS, which must change if we are to improve experiences and outcomes. Secondly, we must trust and listen to those with lived experience of ME/CFS,” he said.

Javid’s intervention marks the first time a senior government minister has spoken out about the condition, for which there is no diagnostic test, treatment or cure. It signals the emergence of new thinking on ME which has been viewed by many in medicine for decades as a psychological or behavioural disorder.

(Sean O'Neill's 27-year-old daughter died of ME Octorber 2021after being unkindly treated and disbelieved by the hospital where she was taken because she could no longer eat. She required a feeding tube but was, instead, met with hostility and disbelief. For those who remember, it is the hospital of 'Muppets' fame where Dr now Professor Esther Crawley lectured on ME in children.)

 

[Hip]

Sajid Javid has promised a radical new approach to the debilitating illness myalgic encephalomyelitis, making the government a world leader in tackling what he called “an incredibly disabling condition”.

Sounds very good!

It would be great if the UK became a world leader in tackling ME/CFS. The UK is one of the world great science nations, so if the UK set its mind to tackling ME/CFS, I am sure progress could be made.

This would make very welcome change to the UK being the chief promotor of psychobabble nonsense approaches to ME/CFS, as it has been ever since that blithering idiot Simon Wessely stepped into ME/CFS research in the 1980s, and tried to con everyone that ME/CFS was "all in the mind".

 

[Pyrrhus]

https://twitter.com/i/web/status/1524753025658617857

 

[Countrygirl]

Way back in 1988, Jimmy Hood MP campaigned for ME in parliament. It has been a long time coming to fruition.....if it really has.

You may like to take a trip down memory lane and see Jimmy Hood MP in action in parliament plus a number of other saints and rogues, including Dr Ramsey, a young Dr William Weir, The Very Revd Michael Maine, the misogynist Dr McEvedy, and others. It does reveal how little progress has been made in the last 35 years.

 

[Treeman]

It's great news, but as always I'm not holding my breath until I see action. It could be like the response to the living crisis. They keep telling us their helping by giving us £150 and a loan of £200 in response to spiralling increases of up to £3000 for some......

 

[BrightCandle]

I am still getting nothing but abuse from my GP and that was just 3 weeks ago so they have an awful long way to go. There may well be recognition in government but there has been recognition in the house of commons for decades. We also have NICE changing the guidelines and its changed nothing on the ground in the NHS as a whole. The plan on how they intend to force doctors to treat people with this condition is what I need to see because its not enough to just say its real its going to require enforcement as the prejudice runs very deep through the organisation. If a treatment is found off the back of this recognition I suspect it comes from the private medical companies in the UK not the NHS.

 

[Hip]

You may like to take a trip down memory lane

I enjoyed watching that BBC Horizon video "Believe ME" you posted. I like the calm slightly introverted speaking composure that people had back then, which contrasts to the more frenetic extraverted speaking style we have nowadays.

Interesting to see great historical figures of ME, like Prof James Mowbray, who invented the VP1 enterovirus test that Dr Chia still uses today, and Dr Melvin Ramsay.

 

[Countrygirl]

I enjoyed watching that BBC Horizon video "Believe ME" you posted. I like the calm slightly introverted speaking composure that people had back then, which contrasts to the more frenetic extraverted speaking style we have nowadays.
.

It sounds as if you are describing the typical British understatement, @Hip

 

[Hip]

It sounds as if you are describing the typical British understatement, @Hip

The old fashioned British understatement is definitely almost extinct these days; but I was referring more the gentleness, and almost spiritual nature, of people's dispositions back then, and the calm slowness of speech.

It seems to me that nowadays, we are all wired into the Internet and the world of incessant information 24/7 by our mobile phones, tablets, computers, and cable TV channels, keeping the brain in a permanent state of anxious hyperarousal.