I can't believe that Covid-19 and the long hauler aspect hasn't turned the medical professions head-on ME/CFS and related conditions. It really destroys the hope I had that it might finally change the research funding situation and finally bring some proven treatments. One of the key problems with ME/CFS was understanding what caused the patient to get this way, a virus but which one, was it trauma etc. Well in Covid19 we know the exact DNA sequence of the bugger that kicked it off and when. 35% of people who positively tested for having it are suffering long term it's clear as day. Most have PEM and other ME symptoms and those that don't if they don't recover will develop it, the obvious PEM came later for me in the development of my condition.
I think the medical world may be broken beyond repair if a pandemic causing it, that will disable millions in the USA alone, isn't enough to change attitudes. Maybe the massive social care bill associated with this will make the government take notice but it really depends how far this virus rips before a vaccine appears if its years more. Maybe the 5-10% that end up with ME/CFS longterm will massively increase the patient base and start to wake them up, but honestly, I doubt it now based on the lack of response we have already seen combined with their insistence to call the same disease something different.
But the BMJ the best they can do is say maybe GET isn't appropriate for the C19 Long haulers, but those ME patients over there they should be exercised to death. There are lots of bad things about this disease but what really rips the hope from you is seeing how you are treated with complete contempt. I think the treatment of ME patients constitutes a crime against humanity, they are torturing people here in the UK knowing the evidence for it has been thoroughly rubbished internationally and by their own experts.
