Long Covid

[ska invita]

Last August I went for a lung function test...now 6 months later i got the call back....my lung function is at 70% is the bad news, the good news is they think it can be greatly improved with asthma inhalers, the positive hope based on the fact that part of the lung function test included trying breathing exercises with and without an inhaler hit and inhalers were making a difference

I haven't got the prescription yet but the prescription is for a pink inhaler, with positive effects due after 6 weeks of use....I'm hopeful. Will report back if anything good happens and maybe this is a path others might want to try

 

[Brainaddict]

It's kind of nice when you get something measurable they can address. My lung function tests were all normal so it wasn't an avenue we could explore.

 

[two sheds]

Long-COVID study reveals immunological improvement two years after infection

Immune abnormalities have largely resolved at 24 months in a cohort of patients long COVID, providing optimism that long-COVID can resolve over time.

www.unsw.edu.au

 

[Silas Loom]

Full paper for that is here.

Improvement of immune dysregulation in individuals with long COVID at 24-months following SARS-CoV-2 infection - Nature Communications

Post-acute sequelae of COVID (PASC) or long-COVID can affect a proportion of those infected but this is not well understood. Here the authors perform a single cell transcriptomics analysis of immune cells from long-COVID patients at 24 months and find that cell changes observed at 3 and 8 months...

www.nature.com

31 people, very varied “LC” symptoms, and loads in the “matched controls” group getting worse for some reason. So not much to go on really. I don’t see how proposing a set of biomarkers which neatly resolve in a small cohort does anything to make those biomarkers relevant to persistent LC.

 

[two sheds]

That's a shame, ta

 

[Elpenor]

My friend reckons he has got rid of his 11 year olds post viral fatigue / long covid (not sure if it was ever formally diagnosed) by using some sort of iron tablets from Holland and Barrett and something called augmented NAC, combined with lots of water and dioralyte (he was told to use salt but didn’t think his daughter would manage that without vomiting so substituted). Something to do with flushing out spike proteins he said. I believe they went to a private consultant.

She went from barely being able to get off the sofa for months to being back to her old self and back at school within a month.

Not entirely sure of the science behind it and certainly not endorsing it as treatment as not a doctor I thought it worth mentioning in case it is something that can be explored.

 

[Brainaddict]

A good result! Iron is discussed from time to time on forums and there is this paper Iron dysregulation and inflammatory stress erythropoiesis associates with long-term outcome of COVID-19 - Nature Immunology
But all the easy things to take, like iron or NAC, have been taken by shitloads of people. Sometimes something works for someone but the outcomes with most things are so inconsistent that it's not possible to identify patterns.

 

[kabbes]

It’s worth bearing mind too for any isolated case that you can’t tell whether the thing you took helped or whether the improvement was going to happen anyway.

 

[Silas Loom]

It’s worth bearing mind too for any isolated case that you can’t tell whether the thing you took helped or whether the improvement was going to happen anyway.

It’s pretty much always the latter, unfortunately, at least for LC cases which meet ME/CFS criteria. Spontaneous remission is very common in year one and quite common in year two. Pretty much all patients try some kind of supplement or some other kind of intervention at some point in year one, and in most cases there will be something onto which remission can be pinned. There are no supplements or interventions which have shown consistently good results in blind trials.

 

[rubbershoes]

I haven't got the prescription yet but the prescription is for a pink inhaler, with positive effects due after 6 weeks of use....I'm hopeful. Will report back if anything good happens and maybe this is a path others might want to try

Is that seretide?

I've been using it for ten years and have found it really effective

Has it helped you?

 

[Elpenor]

It’s worth bearing mind too for any isolated case that you can’t tell whether the thing you took helped or whether the improvement was going to happen anyway.

Yes I suspect an element of this too in my friends case

 

[ska invita]

Is that seretide?

I've been using it for ten years and have found it really effective

Has it helped you?

Brand name Fostair
"The two active substances are beclometasone dipropionate and formoterol fumarate dihydrate. Beclometasone dipropionate belongs to a group of medicines called corticosteroids which have an anti-inflammatory action reducing the swelling and irritation in your lungs."

so a different thing, but probably does something simliar ?


...and yes its helping!!

 

[Brainaddict]

I got the novavax vaccine now that it's available privately, on the grounds that some people have seen improvements after it. I think it has helped, I was on an upward trajectory anyway but it seems to have noticeably reduced my mental fatigue. I feel able to do more/think more in a day without problems, and I actually feel mentally energetic sometimes. Fatigue from doing physical stuff is still very much there, though it has been slowly improving.

 

[Riklet]

I got the novavax vaccine now that it's available privately, on the grounds that some people have seen improvements after it. I think it has helped, I was on an upward trajectory anyway but it seems to have noticeably reduced my mental fatigue. I feel able to do more/think more in a day without problems, and I actually feel mentally energetic sometimes. Fatigue from doing physical stuff is still very much there, though it has been slowly improving.

How are you feeling now? Is there much evidence online so far that it can improve LC symptoms?

I am quite tempted tbh. It's available at a local pharmacy for £65. Had Covid again 8 months ago and still recovering from what that's thrown up. On top of the stuff from before. Lots of weird foot and toe cramps and weird feelings I have every day and which tbh are slightly debilitating some days. Affecting my ability to work, do exercise sometimes just even move around the house with ease.

Luckily I'm sleeping well and able to rest enough and my brain fog and the more severe symptoms I had before are a lot better - my energy reserves feel much stronger again.. on good days been cycling swimming in river doing bar work and teaching online plus going out socialising etc. Ive realised that really hot weather can make me more fatigued, make various symptoms worse... so I do need to be careful this summer as going to Spain for 2 weeks.

 

[Brainaddict]

Sorry to hear covid hit you again. Yes, I find hot weather worse than I used to.

I think it's hard to say about long term effects of the vaccine because of the ups and downs you get anyway. On balance I might guess there has been a slight improvement. I think my partner got covid recently (though tested -ve), and it's possible the recent vaccination saved me another bout. So I'm thinking I'll probably get another jab 6 mths after the first, and if it goes well, potentially every 6 mths.

 

[Silas Loom]

So, the NIH in the US is currently by a massive margin the largest investor in long covid research. It’s still spending money on researching behavioural therapies, but is gradually seeing sense and allocating cash to biomedical research.

That looks deeply endangered under a Trump (and RFK?) covid denialist healthcare regime. The smart move might be to rebrand long covid as “vaccine damage”, mitigations to which would be looked at much more sympathetically by antivax and post-truth funding authorities.

 

[Brainaddict]

So, the NIH in the US is currently by a massive margin the largest investor in long covid research. It’s still spending money on researching behavioural therapies, but is gradually seeing sense and allocating cash to biomedical research.

That looks deeply endangered under a Trump (and RFK?) covid denialist healthcare regime. The smart move might be to rebrand long covid as “vaccine damage”, mitigations to which would be looked at much more sympathetically by antivax and post-truth funding authorities.

Except you're looking for the wrong mechanism then, surely?