Long Covid: PostCovidSyndrome19 Patient Group

Pyrrhus

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I just learned about a U.K. organization for Long Covid patients called "PostCovidSyndrome19.com".
https://www.postcovidsyndrome19.com/

What I find interesting about this organization is that the founder, Louise Barnes, sits on the UK NHS Taskforce for Long Covid, the NICE review Committees, and the NIHR. They are opposed to GET/CBT, fight efforts to psychologize Long Covid, and are aligned with the ME/CFS community.

If you're a Long Covid patient, they encourage you to join their Facebook group, where they organize informal trials of potential therapies:
https://www.facebook.com/groups/868936136917020
 

Pyrrhus

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Here's an article about the founder of this group Louise Barnes:

Wigan-born campaigner launches Long Covid petition
https://www.wigantoday.net/health/c...mpaigner-launches-long-covid-petition-3236051

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Excerpt:
Wigan Today 14 May 2021 said:
The Government is being called on to make sure patients have the right support available.

Louise Barnes, who founded the Post Acute Covid-19 Syndrome Support group online, is trying to drum up public support to help those still suffering symptoms months after first becoming ill on leading petition website Change.org.

Her petition Dying To Live calls on ministers to safeguard those suffering from Long Covid by ensuring they have access to high-quality support and help.

The Department for Health and Social Care (DHSC) said it is investing heavily in trying to understand and treat this new illness.

Louise said: “We feel patients need to be safeguarded from some of these therapies.

“We’re trying to prevent this being labelled as a psychosomatic illness. We know Long Covid patients are developing organ damage and yet some people on the Facebook group have been told they are feeling ill because of childhood trauma or that it’s all in their heads.

“Treatment needs to be science-based and peer-reviewed. NICE has already said that people with similar conditions to us shouldn’t be doing the exercise therapy. It is ridiculous that people are being sent for it.”

The petition says Long Covid patients need to be offered scans to check their organs and describes the current position across the country for getting help as a “postcode lottery”.
The petition is here:
https://www.change.org/p/we-call-on...d-patients-from-discredited-harmful-therapies