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 Post subject: Re: Long Covid.
 Post Posted: Fri Nov 13, 2020 7:12 pm 
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Every little bit or hope is good. I'm glad that attention is starting to be focused on Long COVID...

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 Post subject: Re: Long Covid.
 Post Posted: Sat Nov 14, 2020 10:58 am 
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You hear a lot more about it now in the news so they've finally admitted that there are serious after-effects of the virus for some people.

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 Post subject: Re: Long Covid.
 Post Posted: Sun Nov 15, 2020 3:13 pm 
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I've just read the latest update on the NHS England website about their Covid clinics, it appears (if i'm reading it correctly) the clinics will not be treatment centres, rather they will be more like assessment centres.

Quote:
NHS launches 40 ‘long COVID’ clinics to tackle persistent symptoms
15 November 2020


The NHS will launch a network of more than 40 ‘long COVID’ specialist clinics within weeks to help thousands of patients suffering debilitating effects of the virus months after being infected.

The clinics, due to start opening at the end of November, will bring together doctors, nurses, therapist and other NHS staff to physical and psychological assessments of those experiencing enduring symptoms.

The condition, which is thought to affect more than 60,000 people in the UK, can cause continuing fatigue, brain fog, breathlessness and pain.

NHS England has provided £10 million to fund the pioneering clinics, which will see patients who have been hospitalised, officially diagnosed after a test or reasonably believe they had COVID-19.

Ten sites have been earmarked for the Midlands, seven in the North East, six in the East of England, South West and South East respectively, five in London and three in the North West.

Patients will be able to access services through a GP referral or referral from other healthcare professional, allowing doctors an opportunity to rule out any other possible underlying causes for symptoms, such as suspected stroke, lung cancers or respiratory conditions.

The NHS has also launched a new taskforce, with patients, charities, researchers and clinicians, to help manage the NHS approach to ‘long COVID’ and produce information and support materials for patients and healthcare professionals to develop a wider understanding of the condition.

NHS Chief Executive Sir Simon Stevens said: “Long COVID is already having a very serious impact on many people’s lives and could well go on to affect hundreds of thousands.

“That is why, while treating rising numbers of patients who are sick with the virus and many more who do not have it, the NHS is taking action to address those suffering ongoing health issues.

“These pioneering ‘long COVID’ clinics will help address the very real problems being faced by patients today while the taskforce will help the NHS develop a greater understanding of the lasting effects of coronavirus.”

A study from King’s College London found that older people, women and those with a greater number of different symptoms in the first week of their illness were more likely to develop long COVID with one in 10 still unable to shake off the side effects eight weeks after infection.

More recent evidence is also showing that long COVID can be categorised into four different syndromes: post intensive care syndrome, post viral fatigue syndrome, permanent organ damage and long term COVID syndrome
Source: https://www.england.nhs.uk/2020/11/nhs-launches-40-long-covid-clinics-to-tackle-persistent-symptoms/

It's a start, i guess.


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 Post subject: Re: Long Covid.
 Post Posted: Sun Nov 15, 2020 3:57 pm 
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Yep, at least a start...

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 Post subject: Re: Long Covid.
 Post Posted: Sun Nov 15, 2020 5:00 pm 
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Pure speculation on my part but i can't help wondering if this is actually what Long Covid is?

i.e. The virus mutates in the body before the body can evict it leading to a long cycle of new variants (along with the now familiar cyclic symptoms) until the body finally evicts it?

Quote:
13 November — The coronavirus can mutate swiftly in one person’s body

The new coronavirus resurged again and again in the body of an infected man, eventually killing him while showing evidence of fast-paced evolution.

Manuela Cernadas and Jonathan Li at Brigham and Women’s Hospital in Boston, Massachusetts, and their colleagues followed the course of COVID-19 in a 45-year-old man with a long-standing autoimmune disorder, who was on a medication regimen that included powerful immunosuppressants (B. Choi et al. N. Engl. J. Med. https://doi.org/fhv8; 2020). Roughly 40 days after the man first tested positive for SARS-CoV-2, follow-up tests indicated that the virus was dwindling — but it surged back, despite antiviral treatment.

The man’s infection subsided and then returned twice more before he died, five months after his first COVID-19 diagnosis. Genomic analysis showed that the man had not been infected multiple times. Instead, the virus had lingered and quickly mutated in his body.
Source: https://www.nature.com/articles/d41586-020-00502-w
cf. Embedded in the above article: https://www.nejm.org/doi/10.1056/NEJMc2031364

Only time will tell.

p.s. For anyone reading this and suffering from Long Covid, death from Long Covid is as far as i can tell extremely rare.


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 Post subject: Re: Long Covid.
 Post Posted: Wed Nov 18, 2020 5:12 pm 
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The following link is UK specific and based on UK employment law(s).

That said, i found it an interesting insight into how the minds of HR professionals are being advised to support 'Long Covid' affected employees within the UK.

Quote:
Long Covid: what employers need to know
17 Nov 2020 By Jonathan Owen

With thousands of people still unwell months after contracting coronavirus, how can organisations support employees suffering from the condition? People Management asked the experts...
https://www.peoplemanagement.co.uk/experts/advice/long-covid-what-employers-need-to-know


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 Post subject: Re: Long Covid.
 Post Posted: Sun Nov 22, 2020 6:02 pm 
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At the beginning of this thread i posted a link that some had issues understanding what was being said due to the accent of the OP in the video etc, that page has since been updated and i want to share a couple of new links from the same person.

I wouldn't apologise for the content then and i won't apologise for it now... suffice to say if you have difficulty understanding the content of the links then simply close the window and move on.

That said, if anyone has constructive critisism relating to the content it's more than welcome.

Is THIS What's Causing Long Covid? | Viral Persistence at 4 Months - New Study
Nov 12, 2020
https://youtu.be/94ZYVxtdNHY

What is Long Covid? | 9 Facts in 90 Seconds
Nov 17, 2020
https://youtu.be/WpPnwm9UGrM

A slightlier older link that i've been scratching my head about for over a month is:
Should You Get The Flu Vaccine This Winter? This New Study May Change Your Mind
Oct 29, 2020
https://youtu.be/w22FVIf89_8

There are so many questions that people like myself don't have answers for... :cry:


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 Post subject: Re: Long Covid.
 Post Posted: Sun Nov 22, 2020 8:25 pm 
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I watched all three. Being a data oriented person, I found them all very interesting. I agree that much more research is needed!

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 Post subject: Re: Long Covid.
 Post Posted: Tue Nov 24, 2020 5:30 pm 
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Posted today (the 24th) by the same guy, a very very interesting video.

Disclaimer: The title of the link is potentially misleading given that there is no officially recognised treatment, yet.

Here's How You Treat Long Covid | Lessons From MCAS - Dr Tina Peers
https://youtu.be/sICD0Kn6pR4

cf. https://www.drtinapeers.com/s/DrTinaPeers-LongCovid-12Nov2020-kc9m.pdf


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 Post subject: Re: Long Covid.
 Post Posted: Tue Nov 24, 2020 9:28 pm 
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He certainly makes a number of very intriguing suggestions and observations. I hope that the scientists are able to get to the bottom of Long COVID and how to properly treat it.

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 Post subject: Re: Long Covid.
 Post Posted: Wed Nov 25, 2020 6:53 pm 
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For me the most interesting parts were that vitamins might make a difference, my GP was explicit that i shouldn't take any at all when i enquired about taking B1(Thiamin) & D supplements because doing so might confuse the picture... i took them anyway over a two week period because my GP had no idea what may or may not make a difference back in September and i was desperate... my GP saying that they may or may not make a difference but she didn't know... simply wasn't an option for me at that time.

I was desperate for something that would work and was willing to try anything, that she didn't have clinical evidence to say that vitamins might work (or not) and therefore i shouldn't at least try them was enough for me to order them... it turns out that those vitamins [apparently] didn't work but perhaps i was supplementing the wrong vitamins?

The 'mast cell' hypothesis is of particular interest at this point because all the symptoms i've suffered from appear to overlap those suffering from MCAS.
cf. https://www.aaaai.org/conditions-and-treatments/related-conditions/mcas

The article also goes on to say that the life cycle of Mast Cells is circa 6 months... i'm not sure how that fits my timeline given my understanding is i was infected in February, it's not outwith the bounds of posibility though that i was re-infected in circa August, before i had to stop work.

So much of this virus is yet to be understood :(


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 Post subject: Re: Long Covid.
 Post Posted: Wed Nov 25, 2020 7:54 pm 
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That is so true -- much is still unknown. I would have taken the vitamins as well since both of them are already deemed to be good for your health.

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 Post subject: Re: Long Covid.
 Post Posted: Fri Nov 27, 2020 4:55 pm 
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sboots wrote:
That is so true -- much is still unknown. I would have taken the vitamins as well since both of them are already deemed to be good for your health.

The strange part of this disease is nothing about it seems to make any sense... within my lifetime i've always been able to adust my lifestyle to accomodate an infection or health scare, but with this nothing seems to make any sense.

Activity makes it worse, resting might be making it even worse, but without information (and there is none) no-one knows if resting or activity helps or hinders.

It is so frustrating to be in this situation, where not even doctors can help.

I don't blame doctors, their whole ideology is to help people in need so they must feel equally powerless.

That said they do seem to be ruling out trying what is normally considered 'healthy'... whether or not that turns out to be the right call remains to be seen, given that only a few months ago they didn't even recognise Long Covid existed i don't hold out much hope they have it right.

I looked at the low histamine list of foods, or should i say the list of high histamine foods i should avoid.... i might as well right off my diet and lifestyle if that turns out to be the long term answer... i dont think i'm there yet, i'm certainly not ready to accept it... yet.


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 Post subject: Re: Long Covid.
 Post Posted: Tue Dec 01, 2020 4:19 pm 
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I thought i'd share this because for months i've been asking myself the same question, and still there is no definitve answer...

From a Q&A in one of the UK's foremost broadsheet newspapers...

Quote:
Is it safe for people with long Covid to have the vaccine?
Will it be OK for people still suffering from long Covid symptoms to have the vaccine or would that risk worsening the symptoms?
Robert Fletcher, retired teacher, Sheffield

As with many so things Covid-related, we’re in uncharted territory. None of the Covid vaccines in late stage clinical trials have yet been tested on people who have already had Covid-19 – let alone those still experiencing symptoms. “However, as an immunologist, I can see no reason at all why a vaccine should make them worse,” said Altmann. “The vaccines being developed contain no SARS-CoV-2 virus, just the spike antigen from its surface. If I had long Covid, I wouldn’t want to risk becoming one of the reinfection cases, so I’d get vaccinated.”
Source: https://www.theguardian.com/uk-news/2020/dec/01/is-long-covid-contagious-and-can-children-get-it-your-questions-answered

My taking whatever vaccine is offered used to be a simple choice but now there's one on the horizon it opens a whole new set of questions...

a. Will it stop re-infection with no further side effects for people suffering from Long Covid?
b. Will it cause a flare up of Long Covid?
c. Will it cure Long covid?
d. Because it has never been tested on Long Covid patients will it open a whole new set of unforseen complications?

My gut tells me to absolutely have a vaccine but my head keeps on saying "Not so fast mister, not until you see more evidence!"

I'm really torn on this because i've been living with Long Covid for so long and i feel like my body is finally making progress, the thought that taking a vaccine could set me back is simply terrifying.


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 Post subject: Re: Long Covid.
 Post Posted: Fri Dec 04, 2020 3:54 pm 
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Oh dear... it appears that 'Google' have yet again changed their algorithms because the search string that i've used for months "Long Covid News" is no longer returning the latest links, where i used to get links in chronological order they are now all over the place and mostly useless.
What are Google thinking? <rhetorical>

Fortunately DuckDuckGo appears to use a similar algorithm that Google used to use so there is hope...

Quote:
Covid Survivors With Long-Term Symptoms Need Urgent Attention, Experts Say
In a two-day meeting sponsored by the N.I.H., officials acknowledged an insufficient understanding of the issues and warned of a growing public health problem.

Dec. 4, 2020 Updated 1:28 p.m. ET

There is an urgent need to address long-term symptoms of the coronavirus, leading public health officials said this week, warning that hundreds of thousands of Americans and millions of people worldwide might experience lingering problems that could impede their ability to work and function normally.

In a two-day meeting Thursday and Friday, the federal government’s first workshop dedicated to long-term Covid-19, public health officials, medical researchers and patients said the condition needed to be recognized as a syndrome, given a name and taken seriously by doctors.

“This is a phenomenon that is really quite real and quite extensive,” Dr. Anthony S. Fauci, the nation’s top infectious diseases expert, said at the conference on Thursday.

While the number of people affected is still unknown, he said, if long-term symptoms afflict even a small proportion of the millions of people infected with the coronavirus, it is “going to represent a significant public health issue.”

Such symptoms — ranging from breathing trouble to heart issues to cognitive and psychological problems — are already plaguing an untold number of people worldwide. Even for people who were never sick enough to be hospitalized, the aftermath can be long and grueling with a complex and lasting mix of symptoms...
Source: https://www.nytimes.com/2020/12/04/health/covid-long-term-symptoms.html

I've long felt that the US has been silent on Long Covid and i've never understood why, i hope and pray that might now be changing.


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 Post subject: Re: Long Covid.
 Post Posted: Fri Dec 04, 2020 8:10 pm 
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I presume we shall see much more information after 1/20/21 with the new administration embracing the research and communicating it.

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 Post subject: Re: Long Covid.
 Post Posted: Sun Dec 06, 2020 4:42 pm 
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sboots wrote:
I presume we shall see much more information after 1/20/21 with the new administration embracing the research and communicating it.

Fingers crossed, as the old adage goes... "When America sneezes, the world catches a cold".

While meant as an economics phrase it is equally true for many other things in the Western world... without input from the US on this the rest of the world is i feel left somewhat floundering... the rest of the world will still get there with or without input from the the US of course but both the US and the rest of the world will suffer longer than needed without input from the US.

The following article on Buzzfeed is US specific and very intersting, it's a long read and please skip over the political undertone... something that in my opinion the article didn't need.
Quote:
I’m 33 Years Old. I Got COVID-19 Eight Months Ago. I’m Still Sick.

I’m just one of the thousands of Americans who have long-term post-COVID symptoms. This crisis won't end with a vaccine.
Nidhi Prakash BuzzFeed News Reporter
Posted on December 3, 2020, at 12:08 p.m. ET

https://www.buzzfeednews.com/article/nidhiprakash/covid-coronavirus-longterm-symptoms-future-of-vaccine

There are differencies of course in that i'm British so our healthcare systems are different, as is the Social Care systems for those unable to work when ill, but the story of pain and suffering is the same, as are the symptoms and questions.

This virus doesn't recognise borders, to beat it nor should we.


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 Post subject: Re: Long Covid.
 Post Posted: Sun Dec 06, 2020 5:40 pm 
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For what it's worth i just want to say that i do not believe that Long Covid is ME/CFS... i have no medical experience or training to say that.

It's all very well for some to accept they are related simply because the symptoms "fit" an already known condition but i cannot accept that when there is no evidence to back up that claim.

Should it turn out that medical science can prove i am suffering from ME/CFS then i will have to accept that and move on, until that happens i will continue to believe this is a new and as yet unexplained condition with a 'cure'.


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 Post subject: Re: Long Covid.
 Post Posted: Mon Dec 07, 2020 5:13 pm 
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This video sent shivers down my spine, not because it says anything i don't already know... it's hearing about how others are suffering the same and there are still no answers, so sad.

Covid Long-Haulers Fear for Their Future | WSJ
https://youtu.be/mRikNbf8aGU


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 Post subject: Re: Long Covid.
 Post Posted: Wed Dec 09, 2020 6:56 pm 
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I thought some might find this intersting, it's another long read i'm afraid so i've only quoted the first three paragraphs, if you want to read more the link is just below:

Confronting the pathophysiology of long covid
December 9, 2020
https://blogs.bmj.com/bmj/2020/12/09/confronting-the-pathophysiology-of-long-covid/

Quote:
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 severe disease, and start to recognise that at least as large a disease burden resides with the long aftermath. Relatively few peer-reviewed papers have formally documented the disease features of long covid, but patient groups report several months of sequelae that can involve a varying, relapsing and remitting appearance, including respiratory, cardiovascular, urological, neurological and/or gastrointestinal symptoms in unpredictable combinations. Like other features of covid-19, this is a story narrated in real-time, meaning that we currently do not know whether long covid will come to be seen as a condition typically lasting months, years, or lifelong.

Getting to grips with the phenomenon imposes many challenges to our emerging model of this infectious disease. Not least among these, that many of the risk factors for severity of acute covid-19, such as age, male gender, obesity and ethnicity do not explicitly appear to enhance the chance of long covid. Also, there seems no clear correlation between severity of the acute disease and long-term sequelae. Indeed, many patients come from that large, hidden iceberg of those who self-isolated when they were unwell at home, did not access a PCR test, and so have no formal health record evidence of covid-19. These points highlight an uncharted pathophysiology, demanding a better answer than “post-viral syndrome” or the notion that people are bound to “feel a bit rough” coming out of hospital.

Many estimates of long covid suggest that greater than 10% of acute cases have features that do not resolve over the subsequent months. [1,2] Extrapolated to the current global burden of covid-19, this suggests potentially over five million current “long haulers.” There are pressing biomedical research needs that now need to tackle the many challenges imposed by these estimates: formal assessment of the epidemiology, risk factors, symptoms, and pathology. Recognised criteria for a working diagnosis are needed, not least to facilitate access to appropriate services and allow healthcare provision planning. However, moving forward our goals must move beyond the observational to the interventional. Achieving this will need some hard thinking to decode aetiological mechanisms in a confounding condition that seems to move around the body and between systems, and thus, in terms of healthcare management, between distinct clinical specialties and treatment pathways. What should our starting points be in decoding the unknowns?...


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 Post subject: Re: Long Covid.
 Post Posted: Wed Dec 09, 2020 7:04 pm 
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That's an eye-opening statistic. It does appear that the situation is definitely starting to be recognized and research is underway into this. It may take a while, but with that kind of number, and growing, there will certainly be treatments developed, tested, and made widely available.

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 Post subject: Re: Long Covid.
 Post Posted: Wed Dec 09, 2020 7:35 pm 
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Five million people worldwide suffering from Long Covid is staggering, and it grows by the day.
I'd long heard of the 10% estimate but some newer studies seem to suggest it could be as high as 30%?
I don't know how accurate the 30% figure might be, all i know is when i look at the numbers of people in a country that returned a positive test, i now automatically see the 10% number and think to myself, my god, those poor people... I hope the 30% estimate is wrong.

When i started this thread back in August i'd only just found out that something called "Long Covid" may be the root of what was making me ill and next to no-one was talking about it, except in niche corners of the internet... now it seems like every man and their dog is talking about it.

Where we are compared to then, it feels like we've moved on in years not months.

The only thing that's now missing is treatment but the right people in the right places seem to talking about it so like you, i'm hopeful that sooner rather than later a solution will be found.


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 Post subject: Re: Long Covid.
 Post Posted: Wed Dec 09, 2020 9:50 pm 
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Another update from RUN-DMC, needless to say everything said at this stage is pure speculation...

The Biology of Long Covid | Why the NAD+ Deficiency Theory Could Be The Answer
https://youtu.be/uQlBmy-T2W8

I found the fact that Selenium is mentioned incredibly interesting because if my memory is correct then that was the mineral that was returned as borderline from my blood tests in August... the level of the mineral in my body didn't cause my GP any concern other than it was lower than expected and she didn't see any need for intervention, at that time.

In the morning i will contact my GP to confirm that Selenium was the mineral my body was low on, if it is was then i will take the Selenium tablets that i've already ordered online from Amazon... if it wasn't then it'll only have cost me £8.47 and they'll go in the bin.

My jury is out on Niacin but i'll ask my GP about that as well.

At this stage i'll try anything within reason to try and get back to normal.


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 Post subject: Re: Long Covid.
 Post Posted: Fri Dec 11, 2020 4:17 pm 
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Doddie wrote:
I'd long heard of the 10% estimate but some newer studies seem to suggest it could be as high as 30%?

I thought i'd follow up the above with a link from a study that appears to suggest the 10% estimate is too low...
https://www.acpjournals.org/doi/10.7326/M20-5926

Make up your own mind.


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 Post subject: Re: Long Covid.
 Post Posted: Sat Dec 12, 2020 6:57 pm 
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I just stumbled on an LA Times video from not so long ago (Sept) that i think entirely fitting to post here even though some of the data may now be outdated:

‘Second Opinion,’ Episode 4: The Long-Haulers:
https://youtu.be/bfvpf5rbj2E

It's not a short a short video but compared to what I and others are living with and going through, a 42 minute video is not a long time for others to watch.

One thing that i think is important to re-state, this virus has not gone away, many people continue to die on a daily basis, of those that do not die at least 10% will suffer from Long (haul) Covid, and that could be you.

You can't self diagnose a cure, but you can question the medical advice you recieve... i found a great deal of comfort just knowing that what i'm through via self help groups meant that i wasn't alone.

Science has a long way to go, in time hopefully it will find answers so that people like me no longer have to suffer.

In the meantime the best cure is not to become infected in the first place... i didn't have a choice, i was infected at a time when it wasn't thought possible and tests didn't exist.

Stay safe, wear a mask when your outdoors, avoid crowds.


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