NHS treatments for people who get covid...?

josepdelafuente

josepdelafuente

Senior Member (Voting Rights)
Hi all, mods apologies if this is the wrong place, please do move it to the right place.

I've just tested positive for covid, the result came back within about a minute, and the symptons are pretty full on & nasty. This is my 3rd confirmed case of covid, might be my 4th in reality.

I see this - https://www.nhs.uk/conditions/coron...s-for-coronavirus/treatments-for-coronavirus/
but I'm not really sure how to access it or make it happen... will ME count for the purposes of getting covid treatment as "a condition affecting your immune system"...

This covid feels pretty bad, like the first time I had, and the first time definitely messed me up / slowed me down a good deal on top of the pre-existing ME.

Should I phone my GP perhaps?

Sorry I'm breaking any forum guidelines here, very covidy and brain pretty slow right now

thanks
 
Sorry to hear that you have Covid again.

Please Contact your GP asap.
If they agree to nominate you for anti virals, it has to be done pretty quickly after infection confirmed (friend with RA received them last year).

Anecdotally, I am not sure how successful you will be in persuading your GP practice, but you can still stress how the previous infection has had a continued/worsened impact on your already lowered quality of life (living with ME).

Wishing you well.
 
hmm doctor seemed to think not actually,
because M.E isn't officially on the list by name, it just says conditions affecting the immune system,
and he said in order for it be to considered a condition affecting the immune system, in my case, I would have to already be on immunosuppressant drugs,
so the kind of backwards logic is, because I'm not on those drugs, that means it isn't a condition affecting my immune system, which means I'm not eligible,
but he said he'd forward all the info to the Medicine Distribution Centre anyway, but he was certain they wouldn't give me the drugs...

Seems weird - now I'm curious - is Paxlovid in very short supply generally?
Or is it that it can have a high possibility of side effects etc?
Trying to understand why it's so hard to get it..
 
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ukxmrv said:
Neurological diseases are on the list of inclusions although it doesn't specifically say ME I don't think it is intended to be a complete list
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Hmm ok that might be useful ammo!

This is becoming quite bizarre, I've now had the same conversation 3 times but with 3 different people from the NHS, first a local "clinical lead", then a doctor who phoned me back, and then someone from the medicine distribution unit at the local hospital who phoned me back after the doctor.
Each time they've asked me the same set of questions about my symptoms, and then said "someone will phone you back to let you know if you're eligible"..

Hopefully phone call #4 will be the winner!

And yes as suggested I'll try to get across the fact that the 1st time I had covid (and the 2nd time, to a lesser extent) it exacerbated/worsened the ME for quite a long time.
 
I think I might have contracted Covid December 4th when I was in a store for 13 minutes, I wore a 3 ply cotton mask. I didn't have a test kit so it might have been influenza.

I thought I recovered after 3 1/2 weeks, sore throat, coughing, chills, leg muscle fatigue, loss of appetite et, but when I went out for a brisk water Jan. 3, I woke up the next morning with EXTREME muscle exhaustion and could barely stand up for the next 3 weeks. I had to eat canned food b/c I couldn't prepare or cook food. I thought my immune system had cleared the virus but apparently it didn't.

I'm doing better now and I wished I tested for Covid and taken Plaxlovid.
 
Mij said:
I would think it would be even more advisable to take Plaxlovid especially with M.E?
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Oh yea that's definitely what I'm hoping to do! It's just that the NHS system for getting paxlovid here seems a bit tricky to navigate, they have some slightly unclear eligibility requirements. So I was asking you (just out of curiosity) when you said "This is what is recommended in Canada. It is advised to take Plaxlovid within 5 days of + infection." if that means that in Canada they just advise everyone who tests positive for covid to take paxlovid?, rather than having specific eligibility criteria like we have here in the UK.
 
Mij said:
I think I might have contracted Covid December 4th when I was in a store for 13 minutes, I wore a 3 ply cotton mask. I didn't have a test kit so it might have been influenza.

I thought I recovered after 3 1/2 weeks, sore throat, coughing, chills, leg muscle fatigue, loss of appetite et, but when I went out for a brisk water Jan. 3, I woke up the next morning with EXTREME muscle exhaustion and could barely stand up for the next 3 weeks. I had to eat canned food b/c I couldn't prepare or cook food. I thought my immune system had cleared the virus but apparently it didn't.

I'm doing better now and I wished I tested for Covid and taken Plaxlovid.
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Wow! That sounds grim. Glad you're doing better now...
 
I am going to practice what I preach and not exercise or go for walks until April to make sure this thing is cleared.

I still have very weird chills, burning tongue and roof of mouth but my leg muscles are fine now- phew! The leg exhaustion scared the crap out of me, I thought it was going to be my new baseline. I'm only wearing respiratory N95 masks from now on! Continue to update on my Covid vax too.
 
Hmm yea seems like a no in the end.
The doctor I spoke to just now (4th person) sounded like he really wanted to give me the drugs, but he kept saying the current commissioning policy is that the drugs are just for people who are at risk of severe acute covid - hospitalization, ICU etc.
He said he would chat to his boss or colleague or something but that they would probably say the same thing. He sounded like he felt really bad about it!
 
Mij said:
How did he determine that you weren't at risk of severe acute Covid?
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I'm not really sure... he asked me questions about my symptoms and I answered honestly - bad frontal sinusy headache, dizzyness on standing, coughing, sore throat, eyes feeling weird, can't really move much etc... maybe because I'm not really having trouble breathing right now?

He did say if the symptoms get worse I should call again, but the "current commissioning policy" is that people with ME should be able to "ride it out" with their immune system...(!)
 
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