This activism about this problem is ridiculous and is inside all of the long covid communities. I recently recovered from my second long haul and the people in those communities think they know better than world class clinical researchers tackling novel chronic illnesses.
They continue to think that money is being wasted from this "limited" pool on things like exercise/pacing and CBT trials which are known tools to help certain long haulers but especially "harmful" to ME/CFS where there is already limited research on controversial PACE trials. They believe that we should just be throwing all that money towards trials of unknown medications that haven't been tested instead. Many promising ones have already seen mixed results.
Also this tends to be a huge misunderstanding by armchair medical experts/"patient-led researchers" of what a DCC (data coordination center) is and how that would actually help with these trials long term.
Look, I get it. My last 2 years have been hell on earth. I've blogged countless times on this and I wanted immediate relief too. But the only things that helped me were the "controversial" things(paced exercise, CBT, etc) outlined here.
They continue to think that money is being wasted from this "limited" pool on things like exercise/pacing and CBT trials which are known tools to help certain long haulers but especially "harmful" to ME/CFS where there is already limited research on controversial PACE trials. They believe that we should just be throwing all that money towards trials of unknown medications that haven't been tested instead. Many promising ones have already seen mixed results.
Also this tends to be a huge misunderstanding by armchair medical experts/"patient-led researchers" of what a DCC (data coordination center) is and how that would actually help with these trials long term.
Look, I get it. My last 2 years have been hell on earth. I've blogged countless times on this and I wanted immediate relief too. But the only things that helped me were the "controversial" things(paced exercise, CBT, etc) outlined here.