Action for ME survey on NHS provision for ME

[Jenny]

http://www.actionforme.org.uk/NR/rd...ceandneglect.pdf?dm_i=1HO,SXSI,5X3YHE,2CZHI,1

Report shows 'ignorance, injustice and neglect' in care for those with ME.

Jenny

 

[Esther12]

I read that more thoroughly than I needed to.

It could have been written by Esther Crawley, and reads like an appeal for more money to be given to those who have treated CFS so badly.

At the moment, we don't need to spend more money on the 'care' that they are offering, we need to ensure that less money is given to those who are willing to mislead and manipulate patients.

It completely failed to go in to specifics about what A for ME thought this 'care' that needed funding was, and what sort of value for money it provided. I don't think it's ignorance which leads PCTs to distrust Crawley's claim that PACE showed a 30-40% recovery rate for CFS - anyone interested in looking at the evidence can see that she was lying.

PS: Thanks for posting it though Jenny.

 

[Min]

I keep asking AfME on their facebook page to tell me how their involvement in the PACE trial helped end the "ignorance, injustice and neglect" we face. They keep deleting my question.

 

[Esther12]

I keep asking AfME on their facebook page to tell me how their involvement in the PACE trial helped end the "ignorance, injustice and neglect" we face. They keep deleting my question.

I'm oblivious to facebook stuff, but it does seem like more on-line discussion is going there.

I can only keep up with one site!

Do they say exactly what 'care' they think the NHS should be paying for, or who should be given this money? Without those details, this report seems worthless, and something that could be easily abused by anyone looking to make money out of CFS.