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Long Covid

blogs.bmj.com

Confronting the pathophysiology of long covid - The BMJ

Many are by now familiar with terms such as “long covid” or “long-haulers”—the notion that we need to move beyond covid-19 as an acute episode stratified into asymptomatic, mild-symptomatic, or [...]More...
blogs.bmj.com
The notion of long-term, virus persistence is not one that had previously been considered for coronaviruses, so this seems to be a new textbook chapter to be written: gastrointestinal biopsies taken some four months after acute disease show persistent live virus in about a third of cases. However, the presence of the virus would not be a prerequisite to account for persistent disease. There are many precedents for perturbation of immune and inflammatory responses by acute viral infection leading to long term sequelae...
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Brainaddict said:
Just to say I have been taking the niacin regime advocated here and in various places: The Team of Front-line Doctors and Biohackers Who Seem to Have Solved “Long Covid”

And it seems to have really helped a lot with my fatigue and post-exertional malaise. I added in 5-htp since the theory is you get a seratonin shortage, and I think that also helped.
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Can you say a little about your nicotinic use - what you bought, did you taper up the dose, any side effects etc
Likewise for 5-htp
thank you
 
Riklet said:
Hi guys been absent from Urban for months as have been having a very hard time with long covid. 8 months of symtpoms and skin stuff too as above. was very depressed for a few months. diagnosed with chronic fatigue and living with my parents. not easy tbh.

been improving a bit slowly the past 2 months so fingers crossed. i have no antibodies btw or lung damage. tests showed i was exposed to glandular fever at some point too.
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Let us know how things are going Riklet x
 
ska invita said:
Can you say a little about your nicotinic use - what you bought, did you taper up the dose, any side effects etc
Likewise for 5-htp
thank you
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Sure, I use 50mg capsules from Health Leads, described as 'flush effect'. I am taking 150mg a day having tapered up from a 50mg start. A lot of people do start lower than that but I couldn't be arsed to split the capsules.

I've stopped the 5-htp now but was taking either 50mg a day or 100mg a day in two doses, depending on how crappy I felt.
 
Meant to post this, about parosmia, the other day.
www.bbc.com

Parosmia: 'The smells and tastes we still miss, long after Covid'

A small proportion of people who've had Covid end up with a scrambled sense of smell and taste. Here 13 explain what they miss most.
www.bbc.com
"Common descriptors of the different parosmia smells include: death, decay, rotten meat, faeces," says AbScent founder Chrissi Kelly, who set up the Facebook group in June after what she describes as a "tidal wave" of Covid-19 parosmia cases.

People have used phrases like "fruity sewage", "hot soggy garbage" and "rancid wet dog".

Often they struggle to describe the smell because it's unlike anything they've encountered before, and choose words that convey their disgust instead.

Around 65% of people with coronavirus lose their sense of smell and taste and it's estimated that about 10% of those go on to develop a "qualitative olfactory dysfunction", meaning parosmia or a rarer condition, phantosmia, when you smell something that isn't there.

If this is correct, up to 6.5 million of the 100 million who have had Covid-19 worldwide may now be experiencing long-covid parosmia.
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:(
 
When I had Covid over last Christmas it was quite bad. I had never felt so ill in all my life. The fear that this would never end & the rest of my life was completely fucked made me actually see death as a good alternative. I am not a suicidal person & I always knew I would not have the guts to actually kill myself so I just felt so desperate & depressed which was probably part of what made me feel so ill. Tbf I was doing too much googling about long Covid. I really did not need to keep reading all the horror stories.

I rang my GP a couple of times for advice & bless him he was so worried about my mental state I got a phone call from the mental health team nurse. I had a good chat with her. It was good to talk. After a couple of weeks I felt better & started to eat & sleep again & my mouth gradually stopped tasting like metal. I was still getting very fatigued though but this gradually passed & I appear to have fully recovered. I feel very fortunate.
 
Badgers said:
www.thelondoneconomic.com

'Will I end up in a wheelchair?': Ministers urged to recognise 'horrendous' long Covid

The London Economic | MPs have urged the Government to establish a compensation scheme for key workers | Politics
www.thelondoneconomic.com www.thelondoneconomic.com
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This is the exact thing I worried myself with the other night for my partner who has post viral fatigue. She's been off work for 6 months and has been referred to the fatigue clinic who have a waiting list until June - it'll be nearly a year before she has spoken to anyone for more than ten minutes about what she is going through.
 
An update on things that have helped me, in addition to the niacin and quercetin regime above. Despite being a bit sceptical of pro-biotics as a cure-all I started drinking kefir every day and I think it has helped stabilise me. A lot of people are taking pro-biotic tablets and swear by them. I'm making kefir at home now.

I wrote on another thread but I'm also doing lung physiotherapy atm, just from videos from youtube. It has helped with stopping the fatigue I got when I got out of breath.

I have also been taking some lose dose naltrexone, which people take for various reasons. For me it is just giving me a bit more energy and clearing my head.

So I've been treating myself with lots of things, but in good news, I do feel much better than in the past. Went for quite a long walk today and though I'm tired I don't feel terrible as I would have done only a month ago.
 
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Brainaddict said:
An update on things that have helped me, in addition to the niacin and quercetin regime above. Despite being a bit sceptical of pro-biotics as a cure-all I started drinking kefir every day and I think it has helped stabilise me. A lot of people are taking pro-biotic tablets and swear by them. I'm making kefir at home now.

I wrote on another thread but I'm also doing lung physiotherapy atm, just from videos from youtube. It has helped with stopping the fatigue I got if I got out of breath.

I have also been taking some lose dose naltrexone, which people take for various reasons. For me it is just giving me a bit more energy and clearing my head.

So I've been treating myself with lots of things, but in good news, I do feel much better than in the past. Went for quite a long walk today and though I'm tired I don't feel terrible as I would have done only a month ago.
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Good to hear you're continuing to progress. :)
 
www.theguardian.com

Data on long Covid in UK children is cause for concern, scientists say

With lack of vaccinations and schools in England set to reopen cases must not be ignored, experts warn
www.theguardian.com www.theguardian.com
Recently published data from the Office for National Statistics (ONS) has caused worry. The data suggest that 13% of under 11s and about 15% of 12- to 16-year-olds reported at least one symptom five weeks after a confirmed Covid-19 infection. ONS samples households randomly, therefore positive cases do not depend on having had symptoms and being tested.

With schools in England poised to reopen on Monday – Prof Christina Pagel, a member of the Independent Sage committee and director of clinical operational research at University College London – in a Twitter postsuggested that although emerging data on long Covid in children was uncertain, it should not be ignored, particularly given there was no licensed vaccine for these age groups, and there probably won’t be until the end of this year or early next year.
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Eventually, the group Long Covid Kids was born – now the support group includes about 1,700 children with long-term symptoms post-Covid-19.

Frances Simpson, a lecturer in psychology at Coventry University and co-founder of the group, said she was very worried about the emerging data on long Covid in children. “We just think that there should be a much more cautious and curious approach to long Covid rather than a kind of a sweeping generalisation that children are OK, and that we should just let them all go back to school without any measures being put in place.”

One issue, she said, is the sizeable gap between acute infection and long Covid kicking off. Some children are initially asymptomatic or have mild symptoms but then it might be six or seven weeks before they start experiencing long Covid symptoms, which can range from standard post-viral fatigue and headaches to neuropsychiatric symptoms such as seizures, or even skin lesions.
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Thanks for these links Zahir some great info. those videos from the Gez fella very useful too.

I am bit cautious of taking much niacin as I'm on SSRIs but im going to take a standard B vitamin complex from now on (which includes the right flush kind but at a low dose). I think the psychlogical and psychosocial element to the illness should not be downplayed though, there is no magic solution, and ive learnt from a year of illness not to expect too much too soon.

How are you getting on ska invita? Staying posiive I hope
 
Maybe, but why should the expectation of feeling better outweigh the expectation of feeling worse after vaccination? I certainly feel uneasy about it. I'll get the vaccination when it's offered but I'm more or less expecting to get long covid related side effects.
 
zahir said:
Maybe, but why should the expectation of feeling better outweigh the expectation of feeling worse after vaccination? I certainly feel uneasy about it. I'll get the vaccination when it's offered but I'm more or less expecting to get long covid related side effects.
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It's entirely down to the individual. There is the opposite of the placebo, its called the nocebo effect and it can make you feel really unwell too.
The primary reason we have clinical trials.

An entertaining lecture on the nocebo effect
 
thanks, well if theres any chance of it then bring on the vaciine shot, nothing else seems to be making any difference

(weird edits above as i didnt realise vaccine effect was already being discussed)
 
To be fair the placebo effect can make almost any illness better. It doesn't mean the illness was imaginary. It's a bit of a tactless thing to say to people who aren't being believed about their bodily experiences, but scientifically it is a possibility.
 
ska invita said:
your suggestion that a placebo effect would make long covid sufferers get better irks. its suggests we need to be tricked into feeling better.
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I know a long covid suffer who can't walk too far without stopping, so I am fully aware it's a very real condition. Definitely not out to deride the issue.
Snake oil, belief and the placebo are in combination responsible for 'miracle cures'.
 
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