#ThereForME campaign / Building an NHS that’s there for Long Covid and ME

"Six things you’d like to see in the Delivery Plan for ME - Sharing feedback from our readers about their priorities for the Delivery Plan":

https://www.thereforme.uk/p/six-things-youd-like-to-see-in-the

It appears #ThereForME are in the "Task and Finish" group for the DHSC effort. (They also posted a list of other organisations that were invited to that DHSC group).

 

The problem is that if most patients are not well-enough informed to know what they really want or need you end up with the same old mish-mash.

How do you 'prevent' people with ME/CFS getting worse?

 

By stopping the use of GET and curative CBT which is widely reported to lead to deterioration. Obviously this won't protect everybody but I and many others would likely still be mild If not for psychosomatic/bps interventions.

And by teaching people and their carers how to manage their condition and rest more, so they don't do what is natural for human beings and push and push until they cant function anymore.

Obviously this does not account for other factors which might cause worsening, and I'm aware it's not entirely clear why we get worse sometimes. But it would go a long way.

 

I think PIP and benefits is a really good demonstration of why people don’t slow down.
Are you well enough to work? Yes, but I shouldn’t as it’s probably going to make me permanently disabled in a few years.
Are you well enough to wash, dress, cook, walk etc yes but it tired me out and cumulatively that will probably lead to making me permanently disabled.

Yeah, you’re not entitled to anything. Good luck finding a sucker to finance your life whilst you sit about meditating and “trying not to get really ill”.

 

Exploring the barriers that impact access to NHS care for people with ME and Long Covid

https://www.pslhub.org/learn/improv...are-for-people-with-me-and-long-covid-r12677/