There’s been a recent government announcement about ME/CFS which deserves some attention.
As the government says:
Plans to help improve the lives of people living with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) have been outlined by the government today and a consultation launched on how best to deliver the plan.
The interim delivery plan identifies how care and support for those who experience ME/CFS can be practically improved, and sets out the next steps necessary to improve understanding of ME/CFS and support for those affected.
Further down the report it adds:
ME/CFS is a long-term health condition that remains poorly understood, despite affecting an estimated 241,000 children and adults in England. It is a complex, multi-system, chronic medical condition. It is not clear what causes ME/CFS. In many cases, symptoms are thought to have been triggered by infection, but it is not simple post-illness fatigue – it lasts longer, and even minimal mental or physical activity can make symptoms worse.
Hopefully, this will be a small step in gaining further recognition of this terrible condition. It needs much research and a paradigm shift in the public’s attitude to it.
The report gives some examples of the comments which some chronic sufferers of the condition have faced, for example to those who have chronic fatigue:
“Just go to bed earlier.”
“I’d love it if I could stay in bed all day.”
“You’re just lazy.”
“Yeah, I’m very tired too.”
“Sounds like a normal life (as a parent)”
The lack of obvious signs that someone has ME/CFS can meet with the following responses:
“You look normal”.
“Is it as bad as you say it is?”
“You don’t need the wheelchair because I saw you walk last week.”
“Of course you can walk, you don’t have a broken leg or anything.”
This is an appalling condition which blights many peoples’ lives. But there is hope. Research into the causes of the condition is making headway. There are enlightened practitioners who are making ME/CFS sufferers better.
But as a general public, we need to take those who experience ME/CFS very seriously.
You can read the full government report here.
* Paul Walter is a Liberal Democrat activist and member of the Liberal Democrat Voice team. He blogs at Liberal Burblings.
One Comment
Thank you for this wise article, Paul.
The past treatment of ME/CFS sufferers by medical profession has been woefully inadequate. Anyone who cares to read back over the history of ME will be shocked by some of the shenanigans of the profession at the expense of ill to very ill people.
Long Covid is the sequel to viral infection with a particular virus. ME/CFS sufferers will correctly recognise their own condition as Long Flu or Long Epstein-Barr and so forth.
There should be no question that viral infection can cause multiple damage to body and brain function.
This is a possibly welcome initiative by the government.