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

We are delighted to formally announce Sir Sajid Javid MP as our newest Parliamentary Champion!

Sir Sajid is committed to supporting people living with ME and as Secretary of State for Health and Social Care, announced the development of the National Delivery Plan on ME/CFS for England.

On joining our Parliamentary Champions Network, Sir Sajid Javid MP said:

"As Health Secretary I was committed to ensuring better care and support for people living with ME. I look forward to continuing this work as one of Action for M.E.’s Parliamentary Champions.”


We are also pleased to announce that Sir Sajid Javid MP will be leading a Westminster Hall debate in the Houses of Parliament on Wednesday 1 May, 16.30 – 17.30.

Ahead of World ME Day on 12th May, this Debate provides an opportunity for MPs to share the experiences of people living with ME/CFS and consider what more can be done to improve experiences and outcomes.

As a Government minister will respond to the debate, it is important that as many MPs attend as possible.

We have therefore developed the following template which we ask you all to use and send to your local MP, encouraging them to attend the Westminster Hall to represent you at the debate: https://www.actionforme.org.uk/uploads/files/FINAL_Template WH MP invite.docx

If you are unsure on who your local MP is, you can use the search function on the parliamentary website to identify them and their contact details: https://ow.ly/s5hN50RoK6W

If you are able and willing to, we also encourage you to include any additional information about your experiences of ME, within the template message to your MP.

We are very grateful to Sir Sajid for ensuring that the voices of people affected by ME are heard and not lost.

#pwME #MECFS #MyalgicE #MyalgicEncephalomyelitis #LongCovid #Parliament #WestminsterHall

 

This is welcome news, to have an opportunity to ask the government about care for the severely ill patients if Sir Sajid or another MP attending does this. I wonder who will reply for the government.

 

Moved post

https://twitter.com/user/status/1783757362022469789



Westminster Hall debate on #MECFS

Our new Parliamentary Champion, @sajidjavid, will be leading a #WestminsterHall debate on Weds 1 May, 16.30 - 17.30 ahead of #WorldMEDay

Read the full article on our website to find out more
ow.ly/GBl550RoKJ8

#pwME #MyalgicEAction

ETA webpage link
https://www.actionforme.org.uk/news/westminster-hall-debate-on-me/cfs-research/

 

For those interested, there is an open letter that can be signed, that has been produced to raise awareness with Sajid Javid over the current cases we know about of people in hospital not getting care in line with the NICE GL. It will be sent on the 30th.

https://twitter.com/user/status/1783932909327454235

 

Thanks for the reminder, Trish.

I have found the parliament TV channel and hope to watch at least some of it live.

 

https://parliamentlive.tv/

 

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.

 

ditto

 

I was impressed that some of the speakers did seem to 'get it' but not all, especially not the Minister.

Does anyone know when this debate was arranged? I posted here when I first saw the AfME advertisement and then wrote to my MP. It seemed quite short notice.

Am concerned about the references to difficulties/ non cooperation in getting NG 206 established. Only about 30% of ICBs were cooperating.(edit: from memory)

 

Any idea if there is more info about how this was measured and where the data is available (or can be retrieved from via FOI)?

 

Omg me too, I thought maybe I was being too harsh. It sounded like he didn’t really know what he was talking about and just reading what he’d been given - which was probably the case. I imagine he thinks it’s all so far off in the future that everyone will have changed and he won’t have to do anything.

 

This was a Westminster Hall debate. We operate open transparent government in the UK.

Whenever there is a debate anywhere in parliament, and a briefing/debate pack is provided for MPs, and they quote statistics and figures in the debate, the briefing where this information has come from is supposed to be published in the commons library/ This is precisely so that people don't have to ask where the figures the MPs quote come from.

This page clearly shows that there was also a debate on Youth Homelessness in Westminster Hall today and there is a link to the debate pack. Debate Pack Publications - House of Commons Library (parliament.uk) I have searched the Commons Library for a debate/briefing pack for today's debate and it comes back 0.

Action for ME on the 26th April announced this debate giving 4 days notice to people with ME/CFS to contact their MPs. The letter asks busy MPs to contact Action for ME for the debate pack if they wanted one?

That's not how this works!

If the government had given people with ME 4 days notice of a debate to get their MPs to represent them, there would've been an outcry about the short notice. 2 of those days were the weekend! How many patients' voices were not heard today because of it?

Action for ME needs to get their debate pack for their debate in the commons library pronto! That is true equality in action.