Tell our charities: QMUL must release PACE data

[Sasha]

@ClarkEllis

 

[Art Vandelay]

It is the same text. There was a group of 4 pwME/CFS who organised to write to all the Australian ME/CFS state societies, and we included a template letter (in soft copy, that they could tweak to suit) that we also wrote for them to use, to reduce the work involved in them sending a letter to QMUL. We were very aware that many of our state societies are very small, and run by patient volunteers. We were also very aware that they generally focus on patient support, not advocacy, so asking them to do this was adding to their already overflowing work. We used to have a national body in Australia, that took on more of an advocacy role, but unfortunately it is no longer functioning, which meant that our only option for an organised voice was the state societies. We are very appreciative of the societies who have written to QMUL.

Well done @simeyss Our charities are small and over-worked I agree, so this was a very clever idea.

 

[simeyss]

Well done @simeyss Our charities are small and over-worked I agree, so this was a very clever idea.

Thanks, @Art Vandelay!
We also provided our template to @ClarkEllis, in case there were other organisations for whom lack of resources was an obstacle to participation.