United Kingdom: Oxford Long Covid clinic (includes The Long Covid Self-Help Guide. Practical Ways To Manage Symptoms)

[Trish]

The video is pretty good with messages about listen to your body and don't push, but I'm concerned about the general impression I get from it that the therapists are overconfident that their strategies are right for everyone, and their general message that everyone will recover.

 

[ukxmrv]

The video is pretty good with messages about listen to your body and don't push, but I'm concerned about the general impression I get from it that the therapists are overconfident that their strategies are right for everyone, and their general message that everyone will recover.

There was a participant at the New Zealand LC Symposium last week from a UK LC clinic. I could only hear parts of the discussion (time difference) and she said that people were getting "hope" from the exercise clinic. She was only talking to patients for 20 minutes or so.

It's fair to think that a percentage with LC people will recover even by themselves over a couple of years but false hope is in my experience very painful.

 

[Haveyoutriedyoga]

The video is pretty good with messages about listen to your body and don't push, but I'm concerned about the general impression I get from it that the therapists are overconfident that their strategies are right for everyone, and their general message that everyone will recover.

This general messaging about recovery keeps coming out, although we're yet to see evidence.

NHS england did a national comms video about long covid a few months ago, which said that people will be tested for everything, and that when the tests all come back clear nothing is wrong and they can recover. This was a message pushed hard by the long covid national clinical lead (he's on the video).

The video was made shortly after people from the Behavioural Science and Insights Unit at UKHSA released a study that said if you tell people they will get better then they will expect to get better, and that since "evidence suggests" that thinking you'll get better actually leads you to get better, people should be told they will get better. One of their references is Moss-Morris 1996. They said that "further research is needed" but that seems to have been set aside.

Then there's the PHOSPH study, which involves the clinics of the practitioners in that NHS video, suggests that people are not really recovering.

It was discussed elsewhere on S4ME
https://www.medrxiv.org/content/10.1101/2022.01.18.22269467v1

https://www.medrxiv.org/content/10.1101/2021.12.13.21267471v1.full-text