Kings Long Covid Clinic (such as it is)

[Jody Reynard]

Hi All,

Posting on here in desperation after 2 years of gas lighting from the somewhat mythical organisation that is the Kings Hospital Long Covid Clinic.

The service mostly seems to involve me periodically filling out very long online template forms with leading questions about how I feel about my illness and little to no questions about Long Covid, my illness or symptoms.

It seems like both metaphorical and actual box ticking and I've had enough and want to demand more.

If anyone has had similar frustrations please do PM me (happy to discus things in general terms here), maybe we can set up a whats app grp, share what works and push to get some actual treatment or at the least help with symptom relief in the absence of a cure.

Cheers

Jody

[Spartacus]

Hi Jody

Have you registered with the long covid support group https://www.longcovid.org/ or been on their Facebook page https://m.facebook.com/100071509996381/ where I suspect you will find others in your situation and gain support for your drive to get treatment at Kings.

[Jody Reynard]

Thanks Spartacus, kind of you to post, I can only join that group via facebook, which I'm currently locked out of (just haven't used FB in yrs and having trouble validating who am with meta)

I'm sure I will get that sorted shortly and was just exploring all avenues in the meantime.

Thanks again as that does look like the most sensible route

[HeadNun]

Hey Jody,

Do you know if there is any actual medical treatment for Long Covid? So little is known about it, other than a very large list of (often quite vague) symptoms. I'm not sure what can be done medically for post viral complications / fatigue, other than waiting for it to pass.

Have you considered contacting a group like https://www.sirpa.org/about?

They are a group of medical & healthcare professionals who are having great success helping patients with chronic pain, ME and Fybromylgia etc. Also, try the Curable app - some clued up GPs will write you a prescription, so you can use it for free for six weeks.

Try reading anything by Howard Schubiner or John Sarno. Some people have been 'cured' just by reading Sarno's book, though it of course depends on what your symptoms are.

I have a GP friend who is making great strides helping patients with Long Covid symptoms and the other illnesses listed above, without the use of drugs. You can always message me if you'd like to know more

Edited November 25, 2022 by HeadNun

[HeadNun]

Have a listen / watch to this too.

https://drchatterjee.com/how-to-heal-chronic-pain-with-dr-howard-schubiner/

[SouthernBelle]

Hi Jody

I'm heavily involved with all things related to Long Covid. Happy for you to DM me if you want to find out more. That invite is open to anyone else who would like information!

Take a look at the bmj practice pointer especially this infographic page https://www.bmj.com/content/378/bmj-2022-072117/infographic

You can also fill in this clinics survey https://www.surveymonkey.co.uk/r/MGXXYGM

[Froglander]

It might be worth contacting the PALS department at Kings so they can get some answers. They’ve been very helpful to me in the past.

[Peckhamgatecrasher]

This may be useful, from today's Guardian.

https://www.theguardian.com/society/2022/nov/28/long-covid-the-patient-whos-made-an-app-to-track-its-symptoms

[Jody Reynard]

thanks peckhammgatecrasher, I am from Pecknarm so I guess also a gate crasher too!

I am keeping a diary of exertion and using pacing strategies at the moment but this looks like could be an aide to that, particularly interested to see how using phones camera for heart rate measurements works, that seems like a game changer.

Without going into detail about my condition there are multiple ways the Long Covid Clinic insofar as it exists is failing, even given that there isn't a cure or proven remedies at this stage, so I will continue to plug away until I get a response if not a resolution. It might not sound like it but I am completely realistic about what can be done, but things are still falling far short of what can be reasonably be expected, even accepting the incredible burden the NHS is currently under.

Thanks again for the link, could be really helpful and very kind of you!

[Jody Reynard]

thanks also froglander and headnun!

[Froglander]

thanks also froglander and headnun!

 

I also meant to say that on Twitter there is a supportive community, including @drclairetaylor who is based in Scotland.