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Carole's avatar

Thank you for this. You’ve been listening and have presented the feedback incredibly clearly for us all.

It seems that for decades ME has been organised by an outdated business model which replaced the primarily scientific plan. I understand that finance is at the root but since the late 80s business models have prevailed often presented as scientific treatments but are basically business. This has stymied innovation of all kinds. I believe this is intentional but it succeeds in simply going round in circles.

The current government’s threats about benefits have been used before by previous governments. Apart from being cruel and dangerous they are incredibly short sighted.

I’m not expressing this very well, sorry. Brain fog rules today!

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Myra's avatar

Starmer and reeves have both disgracefully written in the Tory media about the need for ruthless cuts to benefits. Let's be clear benefit cuts kill people. The current labour government is stigmatising disabled people claiming benefits through it's reactionary rhetoric that we are a burden on society.

I have no faith whatsoever that the DWP will change it's murderous policies towards disabled people. I would urge people to read John Prings new book, The Department, which chronicles in forensic detail how the DWP has caused the deaths of hundreds of disabled people.

As John McDonnell MP has stated recently there needs to be a public enquiry into the actions of the DWP. I would add that the UN has severely criticised the DWP for it's repressive actions in its April 2024 report into the UK.

Unless disabled people with ME can access benefits, when they are too ill to work, then that will make their health much worse.

Sadly, the self appointed spokespersons of the ME community such as the ME Association, ME Action don't take this issue seriously.

One last thing. No one in the ME community wants to tackle the taboo issue of suicide amongst people with ME. I've interviewed scientists doing research into this area but no one wants to touch this issue which is very unhelpful.

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