What planet is dr shepherd on here
He doesn't mention pain in his description- not me, but for many its a huge symptom
He talks as if our MRC is doing loads rather than continuing a tradition of virtual neglect - WTH
He says uk is making great strides on diagnosing early. Uk isn't really making strides in anything AFAIC , although yes compared to 30 years ago we have shuffled to NICE guidelines and earlier diagnosis
He says there lots of clinical trials going on - really ? Rituximab has flunked. What is there beyond valcyte and even that isn't getting large trials?
He makes out there's lots can be done to help patients - basically same old activity management and sleep pain meds and says It's all Very hopeful
As someone with long term severe ME I've long given up on the uk charities adopting the right tone and level of advocacy/activism for our illness and feel utterly unrepresented. I realise he's speaking to the whole South African community, some of whom are newly ill but the debilitation wasn't conveyed, the neeed for urgent action wasn't, nor was there imo a realistic picture that compared to other major illness we have just fragments of research going on, dire lack of funds and really only America is touching an adequate response.
