UK Parliament: Westminster Hall debate on ME/CFS, Wednesday 1st May 2024, 16.30 - 17.30

@Maat
Can you take us a bit further? Why / to what advantage was it for Action for ME to organise/ assist in organising a debate on ME at just 4 days notice?
Action for ME got several references in WH, the MEA got one. What was that about? Were they based on the briefing provided by Action for ME?
 
@Binkie4 I guess they were trying to tie in with 12th May and maybe that was the only slot they could get before the actual day.

I got the impression that although the MPs where there, 7 or 8 I think, told their own constituents stories which did show all the relevant areas of concern. I got the impression that it was more about getting it on the Hansard record about the delayed delivery plan and pushing the government to publish before the summer recess.

That's important because once parliament returns from the recess they'll probably announce the date for the general election. Once they do that they have a period of purdah. From recollection its about a month, in the immediate run up to the election where the government should not issue major long term policy documents which would bind the next government whoever that is. It's so the incumbent party can't play politics with major policy affecting the public. Sort of stopping them from making election campaign promises affecting the public, especially when there is a good chance they're not going to be returned to government to have to fulfill them. Not, unrelevant is the fact that Dan Poulter MP and part-time NHS Psyhiatrist has just defected to Labour.

He was shocked, shocked I tell you that after being in parliament for the last 14 years to find out that the Tory's have a lack of compassion when it comes to the NHS and patients. As if.

Not much else was achieved, because it's clearly not going to be published before the election.

ETA: Sorry yet it was based on the Action for ME one of the MPs thanked them specifically for it.
 
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Sajid Javid is standing down as an MP at the election. I suspect he initiated the debate to try to force his party to get on and complete the implementation plan he set up that was supposed to be completed in 2022, or at least to get it recorded in Hansard that he had tried, and that his party has failed. I think it was probably the only time slot available.
 
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tornandfrayed said:
The minister (I've never seen him before) not getting it on severity. Starts saying some people with ME struggle with activities others take for granted - and then it's going to work and taking their kids to football matches, not teeth brushing or writing a short email.


Disappointing that the delivery plan is taking so long and being an election year we won't be a priority. I'm sorry that Andrew Gwynne has Long Covid, but, if he is able to remain in that post, he could be a valuable ally.
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Yes, at the previous debate the minister replied that people could be in bed “for weeks“. If the ministers are not getting the severity then of course the urgency and resources committed are not commensurate with need. Difficult to have any trust in the process with this fundamental flaw at senior level
 
tornandfrayed said:
The minister (I've never seen him before) not getting it on severity. Starts saying some people with ME struggle with activities others take for granted - and then it's going to work and taking their kids to football matches, not teeth brushing or writing a short email.
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Cinders66 said:
Yes, at the previous debate the minister replied that people could be in bed “for weeks“. If the ministers are not getting the severity then of course the urgency and resources committed are not commensurate with need. Difficult to have any trust in the process with this fundamental flaw at senior level
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The minister is Andrew Stephenson and he has only been in post since last November.

I wonder if part of the problem is the constant change in departments for ministers.

Not sure who the previous minister was but I do remember Steve Brine being the minister who replied to a previous debate a few years ago and it seems that his tenure ended in 2019.

I wonder how many there have been in between?
 
@Fleur there have been 4 different prime ministers in place over the period since the last parliamentary debates on ME so unfortunately changes of cabinet and junior ministers flow from that. Which certainly makes things more challenging for departments as ministers like to make their mark and have different areas of interest. And makes things harder for advocates to get any momentum. Most ministers would be starting from minimum or no awareness of ME. The short Javid period was an exceptional opportunity and the advocates did make use of it but unfortunately that momentum faded.
 
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There is an article in hard copy of today's Times about the Westminster Hall debate, page 6, written by Eleanor Haywood, entitled
Javid:ME patients are too often dismissed by medics

There is a paywalled online copy
https://www.thetimes.co.uk/article/...h-me-are-being-dismissed-by-doctors-twp2xhs5n

"During a debate held in Westminster Hall on Wednesday, the former health secretary spoke of the distressing experience of his cousin’s “amazing” daughter who developed the debilitating illness seven years ago, aged 13.

ME is a complex neurological disorder that affects about 250,000 people in the UK and leads to symptoms including exhaustion and pain. Severe cases can be fatal, with patients bedridden and unable to eat or drink, and care held back by a lack of specialist NHS services.

Urging ministers to stop delaying the publication of a plan to overhaul care, Javid said that the fight against the illness is “not just an important policy area but simply very personal”."..........


"Two years ago, when he was health secretary, Javid announced a new “delivery plan” to radically improve research into the condition, and tackle the stigma, to ensure patients got appropriate care. However, the government has not yet published a final version of the plan, initially promised by the end of 2022. Javid said he had heard “disturbing reports” that the final report would not be published until the end of the year, and “there is absolutely no time to waste”.

An interim plan published last year set out steps to ensure patients with ME are no longer dismissed by the NHS, including by improving medical training."

..........
Javid said: “There is a huge cultural problem when it comes to ME, with a lack of medical understanding and awareness. There is a critical lack of data and research, and there is still no existing cure or even treatments.”

The debate was told that patients with ME are being “let down time and time again” by poor hospital care and a lack of specialist NHS services. Most NHS hospitals are also failing to follow official NICE treatment guidelines for those with the condition..........


A lack of medical research into ME means there are no effective treatments, and little is understood about the underlying mechanisms or causes of the condition. Many patients face a battle to get a diagnosis. Health minister Andrew Stephenson said the government “strongly agree” on the importance of improving research and hospital care for ME. He said he will “do all in my power to ensure that the plan is published as soon as possible”

edit: all text is from the paywalled article.
 
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Binkie4 said:
There is an article in hard copy of today's Times about the Westminster Hall debate, page 6, written by Eleanor Haywood, entitled
Javid:ME patients are too often dismissed by medics

There is a paywalled online copy
https://www.thetimes.co.uk/article/...h-me-are-being-dismissed-by-doctors-twp2xhs5n

"During a debate held in Westminster Hall on Wednesday, the former health secretary spoke of the distressing experience of his cousin’s “amazing” daughter who developed the debilitating illness seven years ago, aged 13.

ME is a complex neurological disorder that affects about 250,000 people in the UK and leads to symptoms including exhaustion and pain. Severe cases can be fatal, with patients bedridden and unable to eat or drink, and care held back by a lack of specialist NHS services.

Urging ministers to stop delaying the publication of a plan to overhaul care, Javid said that the fight against the illness is “not just an important policy area but simply very personal”."..........


"Two years ago, when he was health secretary, Javid announced a new “delivery plan” to radically improve research into the condition, and tackle the stigma, to ensure patients got appropriate care. However, the government has not yet published a final version of the plan, initially promised by the end of 2022. Javid said he had heard “disturbing reports” that the final report would not be published until the end of the year, and “there is absolutely no time to waste”.

An interim plan published last year set out steps to ensure patients with ME are no longer dismissed by the NHS, including by improving medical training."

..........
Javid said: “There is a huge cultural problem when it comes to ME, with a lack of medical understanding and awareness. There is a critical lack of data and research, and there is still no existing cure or even treatments.”

The debate was told that patients with ME are being “let down time and time again” by poor hospital care and a lack of specialist NHS services. Most NHS hospitals are also failing to follow official NICE treatment guidelines for those with the condition..........


A lack of medical research into ME means there are no effective treatments, and little is understood about the underlying mechanisms or causes of the condition. Many patients face a battle to get a diagnosis. Health minister Andrew Stephenson said the government “strongly agree” on the importance of improving research and hospital care for ME. He said he will “do all in my power to ensure that the plan is published as soon as possible”

edit: all text is from the paywalled article.
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Dread to think what the comments on this would be like!
 
Hard to say whether it will make any difference, but having it all on legislative record, again, will matter in the long term. Once the lie can no longer be maintained and people start looking at why and how it happened, it will not be possible for anyone involved to say that they didn't know without showing themselves either too incompetent or too indifferent to do their job.

For the general public? Whatever, people don't have to know about everything, that's why we have governments and elected representatives. For medical professionals, for those involved in this horror, those words, those records, will always be there to show that they had everything right in front of them to know better, and simply chose to go with the old myths and beliefs.

This record is in the news media, in writing and on video, it's in academic literature, in popular literature in the form of books, novels and so on. And this isn't the first time that it's on legislative record, but it only shows how it was always wrong for a long time. There are records to this effect dating back decades, in multiple countries, and every time medical institutions and their leaders simply shrugged it off, and blamed whatever was fanciful to blame it at the time. Mostly us, the people they were failing.

They knew. They lied. They bullshitted. They harmed. They caused suffering and death. All for a bunch of garbage pseudoscience and egos that can't take criticism, despite working in jobs where that criticism is critical to the whole thing.
 
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