Andy
Retired committee member
Warwick Uni press release from December about this trial, https://warwick.ac.uk/newsandevents...ctured_exercise_benefits_long_covid_patients1
https://www.physiosforme.com/post/regain-trial-for-long-covid?postId=6000594ec7b36300185f8797From looking at the responses on social media we knew we were not alone in our concerns, but were very pleased to receive an invitation from the REGAIN trial team to discuss the trial protocol in more detail. Along with representatives from the “Long Covid Physio” team, we met with the trial team just before Christmas and were able to outline our concerns.
Although we were pleased to have been able to meet the team, we have as yet had no further outcome from the meeting or acknowledgement that the protocol may need to be altered to include staff training and screening for post viral fatigue symptoms.
You beat me to it - thank you for sharing this. We have written to the National Institute for Health Research with our concerns so will keep you postedUpdate from @PhysiosforME
REGAIN trial for Long Covid
https://www.physiosforme.com/post/regain-trial-for-long-covid?postId=6000594ec7b36300185f8797
HmmmmmmmmmThere’s constructive engagement and then there’s having a meeting for the sake of appearances let’s hope these researchers are just slow on further communicating and not stonewalling.
Good to know thanks for sharing - obviously the amount of challenge about PEM became too much to ignore!#MEAction Discussions With REGAIN Trial Clinicians Led To Staff Training On PEM, https://www.meaction.net/2021/06/11...rial-clinicians-led-to-staff-training-on-pem/
@PhysiosforME
Dr Asad Khan
has been vociferous on Twitter re those with LC avoiding this trial.
He's also been vociferous on the ReDIRECT trial where diet is being assessed
Diet and exercise - who knew ?
Trial By Error: Can Someone Please Slap a Warning Label on this Exercise-and-Rehab Long Covid Study?
"I’ve been writing for a while about the rush to treat long Covid patients with the outdated and debunked approach long applied to ME/CFS. A major effort to demonstrate that an exercise program can lead to “recovery” from long Covid, sponsored by the University of Warwick and funded with £1.200,000 from the UK’s National Institute for Health Research, is currently recruiting. It goes without saying that the REGAIN study is seriously flawed–as we have come to expect from this type of research."
https://www.virology.ws/2022/03/30/...-on-this-exercise-and-rehab-long-covid-study/
This!Meanwhile, in real life, the most common problem I see on the issue of food is being able to eat enough and losing too much weight as a result. People have to try radical dietary changes without any support from professionals. They struggle to keep food down, while some face the difficulty of being unable to eat either because they can't even sit up, or because it massively raises their heart rate.
And then of course there are those who are struggling to eat because they have had no income for too long and cannot find any support.
I am significantly underweight. Not to the point where it's a problem but it's easy to find evidence that this is utterly foolish and pointless.