Posts moved from the Long Covid in the media and social media thread (I think this is a GET study, from what comments suggest) https://twitter.com/user/status/1516461378143465474 Edit: from the horse's mouth https://twitter.com/user/status/1512402384038813702
Another one ? There' s an " adaptive pacing" one too https://www.uws.ac.uk/news/long-covid-link-to-extreme-fatigue-targeted/ Seems little knowledge re cumulative effects and tendency of baselines to move - particularly in early illness
The class action lawsuits were already guaranteed to be huge. They will be so much huger, just straight up gigantic. Just straight up seize all the budgets for psychosomatic medicine for the next century and use it to repair the catastrophic harm they caused, and fire everyone involved, not a single thing of value would be lost. There is no basis to recommend GET for LC, none whatsoever. This recommendation is based on applying to LC what is now advised not to recommend for ME (in the UK anyway). So many long haulers will have been harmed because of harmful advice that should never have been given about ME and was mindlessly applied to LC, even though it was all debunked and never had any basis to recommend in the first place. Despite clear warnings not to recommend this. It could not be any clearer, and still here we are. https://twitter.com/user/status/1516834240390135808
It’s really scary and demoralising seeing GET vultures getting their claws into another patient group. No amount of debunking of bad research seems to stop the BPS juggernaut. They just use a different name for the same illness and continue as if nothing has happened.
The UWS study ( link in earlier post) has been active on social media looking for participants . No 2 day CPET ( UWS sports science can do these) . Response on Twitter with copy of participant info https://twitter.com/user/status/1568117490055581696 I've asked for confirmation as to which " validated questionnaires" they are using .
I was involved. I thought that the questionnaire was completely inappropriate. If I had known that questions about shopping carrier bags would be involved I wouldn't have taken part. I think in modern parlance, 'mugged off' would sum up my feelings. The questionnaire was completed on an app which then closed on completion.
No response to tests used . These are done via an app which closes when finished. Participant has provided screenshot https://twitter.com/user/status/1568275567019016195
I'm not sure. I had a number of back and forward emails to the Doctor who dealt with me after first opening the app.. I had the choice, I completed the app. 12 different sections. I was disgusted when I finished it and understood the extent they were going with anxiety etc. Also as a person with ME - 10 years - my answers would have been completely different at various stages. I wrote again to her. Expressing my unhappiness. I also looked up Prof Sculthorpe. I listened to a talk he gave to a Long Covid activist. In no part of the podcast did he mention somatic. Yet the group I was part of, 50% of the test involved questions about 'feelings'. And 75% of the app consisted of 'feelings'. It doesn't all add up. When this study was posted on his board in January, there were assurances that the study wouldn't involve 'bags of shopping' . But it did. I'm really angry about it.
When discussing the trial initially via zoom. I said that a tilt test would be useful. I was told that they couldn't access one. In the lab where the ultrasound took place there was a tilt table on the wall in the corner. I didn't get the ultrasound of my heart only on the arm. The explanation for that was the person who did the heart ultrasound hadn't turned up that day, which I thought amateurish.
