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 Post subject: Re: Long Covid.
 Post Posted: Sat Dec 12, 2020 7:39 pm 
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Doddie wrote:
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.

So, the Selenium supplement arrived from Amazon... i sent an e-consult to my GP but i'm yet to have a reply.

I decided to take one of the Selenium supplements as soon as they arrived, i'm now on day three.
(As an aside i need to check my Forum settings because i posted about the Amazon order on the 10th and they arrived on the 10th, i didn't order them for Same Day delivery so something is wrong there?)

It may be pure coincidence of course or a placebo effect?... but i suddenly fell better than i have done in a very long time... the jury remains out on why i suddenly feel better but time will tell... or if i'll crash again, fingers are crossed.


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 Post subject: Re: Long Covid.
 Post Posted: Sat Dec 12, 2020 8:05 pm 
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I'm about half way through the LA Times video. It is very interesting stuff.
I sure hope that the Selenium supplements do indeed provide you relief!

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 Post subject: Re: Long Covid.
 Post Posted: Sat Dec 12, 2020 9:16 pm 
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sboots wrote:
I'm about half way through the LA Times video. It is very interesting stuff.

It sure is, the sad thing is it was posted in September but it's taken this long for me to find it... there are reasons for that of course, but nonetheless it's sad it's taken this long for me to find it when it should already have been spoken about.

Quote:
I sure hope that the Selenium supplements do indeed provide you relief!

So far so good but i've felt i'm turning a corner before so only time will tell.

That said, both my wife and I feel like i've made huge strides in the last couple of weeks, whether or not Selenium has anything to do with that remains an open question at this point.... i'll be in a better position to deicide that in a couple of weeks.

Personally, i feel like i'm in a whole new world of recovering but again only time will tell... i'm so scared of being overly optimistic because i've built up my hopes before only for them to collapse before my eyes.


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 Post subject: Re: Long Covid.
 Post Posted: Mon Dec 14, 2020 3:52 pm 
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As if Covid-19 itself wasn't weird enough...

What a strange page for the UK Gov to publish today, why not wait until the 16th to publish it?
https://www.gov.uk/government/statistics/announcements/estimating-the-prevalence-of-long-covid-symptoms-and-covid-19-complications

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 Post subject: Re: Long Covid.
 Post Posted: Mon Dec 14, 2020 4:41 pm 
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I don't really have much to say about the following other than i feel for the students, i've already expressed my view on this... e.g. Universities should never have been allowed to re-open except for remote learning or for very limited one-on-one tuition... shared campus accomodation, no matter if it was on-site or off-site, should never have been permitted etc.

Uni students are going through hell trying to do their degrees with long Covid symptoms:
https://thetab.com/uk/2020/12/14/uni-students-are-going-through-hell-trying-to-do-their-degrees-with-long-covid-symptoms-185851

That said, there is a very interesting link within the article above (not yet peer-reviewed) that for me says it all, it's dated 29th Nov and can be found here in case you missed it:

The Kids Are Not Alright: A Preliminary Report of Post-COVID Syndrome in University Students
https://www.medrxiv.org/content/10.1101/2020.11.24.20238261v2#disqus_thread

Quote:
Interpretation Our results contradict the perception that this “yet to be defined” post-COVID syndrome predominantly affects middle-aged adults and suggest that exercise intolerance, dyspnea, chest pain, chemosensory impairment, lymphadenopathy, rhinitis, and appetite loss may differentiate post-COVID syndrome from general symptoms of pandemic, age, and academic related stress. These findings are also consistent with previous reports that females are more vulnerable to this post viral syndrome. Large-scale population-based studies are essential to discerning the magnitude and characterization of post-COVID syndrome in young adults as well as more diverse populations.


In the absence of science, make up your own mind.


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 Post subject: Re: Long Covid.
 Post Posted: Mon Dec 14, 2020 5:09 pm 
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Doddie wrote:
So, the Selenium supplement arrived from Amazon... i sent an e-consult to my GP but i'm yet to have a reply.

I got an email reply from my medical practice today, i'm not convinced it was from a GP because it wasn't 'signed', it certainly doesn't read like it came from a GP.

The whole point of the eConsult service is to remotely communicate with a GP so i'm not sure what's going on and have lost all faith in the service.

You will see from the quote below that the reply i got only mentions "CRP", this was certainly not what i was asking about and indeed i have never had a conversation with anyone about a CRP result... yes i was referrred for a chest x-ray because i MIGHT have had a chest infection but that had nothing to do with blood tests, it was purely because a nurse or GP heard cackling in my lungs during a sounding of my chest, at the same times as the blood were drawn.

Quote:
"Thank you for your recent eConsult request.

thanks for the email.

the only abnormal blood was for CRP.
this is a marker of inflammation but its not specific.
it could be raised for lots of simple reasons.. usually its up when you have a current infection or inflammatory process such as an arthritis...

it was 10 - which is not terrible.
but all i would recommend doing is booking in for a repeat CRP blood test as all others were ok.

see the link below as a starting point.
if you had a positive test / know you had covid and think that this may be long covid.
there are no specific clinics or follow up options available to us as NHS is still learning what to do...

https://www.yourcovidrecovery.nhs.uk/
FYI, the above is not re-formatted, that really as i recieved it!

I'm in no fit state to start a fight with my medical practice but we will be having a discussion about this at some point in the future.

In the meantime i guess i'm still where i always knew i was, devoid of any meaningful healthcare and looking for help elsewhere.


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 Post subject: Re: Long Covid.
 Post Posted: Mon Dec 14, 2020 5:22 pm 
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sboots wrote:
I sure hope that the Selenium supplements do indeed provide you relief!

Yesterday wasn't brilliant, the nausea and insomnia returned, when i did eventually manage to get some sleep at least i felt good when i woke up this afternoon... which is a step forward by my standards because normally my symptoms have dragged on for days at a time.

Only time will tell if supplements are the answer but at this point i don't feel i have anything to lose by trying them.


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 Post subject: Re: Long Covid.
 Post Posted: Wed Dec 16, 2020 4:12 pm 
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The ONS (UK, Office for National Statistics) link mentioned above has gone live:
https://www.ons.gov.uk/releases/estimatingtheprevalenceoflongcovidsymptomsandcovid19complications

The report is in xls format so not the easist to decipher... for that reason i'll post a couple of UK media links that hopefully help make sense of the stats...

Long Covid alarm as 21% report symptoms after five weeks
https://www.theguardian.com/society/2020/dec/16/long-covid-alarm-as-21-report-symptoms-after-five-weeks

Coronavirus: 'Long Covid' impact estimated
https://www.bbc.co.uk/news/health-55331166

Imo these sorts of 'official' studies are long overdue and even though this one isn't perfect it is welcome as a starting point.

UK Govt and others are going to find it hard to keep their heads buried in the sand for much longer.


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 Post subject: Re: Long Covid.
 Post Posted: Wed Dec 16, 2020 4:34 pm 
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Government websites can be so frustrating at times... i've just noticed that buried away within the ONS link, it does indeed have an accompanying statement:

https://www.ons.gov.uk/news/statementsandletters/theprevalenceoflongcovidsymptomsandcovid19complications

I didn't find it ground-breaking but it is interesting... make up your own mind.


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 Post subject: Re: Long Covid.
 Post Posted: Wed Dec 16, 2020 6:14 pm 
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Yes, government websites are indeed frustrating! Nothing groundbreaking, for sure, but still a good sign that Long COVID is finally getting some serious attention.

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 Post subject: Re: Long Covid.
 Post Posted: Thu Dec 17, 2020 4:06 pm 
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The link that follows is equally shocking and enlightening... there are so many things in it that i can relate with, i found it a disturbing read because it brought back so many dark moments that i've lived through and would rather not remember.

It's another long read, even longer if you take the time to follow the embedded links... i'd encourage everyone to read as much they are comfortable with.

The many strange long-term symptoms of Covid-19, explained
Long Covid “is a phenomenon that is really quite real and quite extensive,” Anthony Fauci said earlier this month.
By Lois Parshley Dec 15, 2020, 4:20pm EST
https://www.vox.com/22166236/long-term-side-effects-covid-19-symptoms-heart-fatigue

--------------------------------------------------
Fyi, who is Lois Parshley?
https://www.vox.com/authors/lois-parshley-2


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 Post subject: Re: Long Covid.
 Post Posted: Sat Dec 19, 2020 4:11 pm 
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At last!!

The UK Govt published the long awaited Guidance for Long Covid yesterday, whilst primarily aimed at clinicians it is still a very interesting read as a patient... and imho very well written!

There are still no answers or treatments available but that it's published by officially recognised bodies is (i feel) a massive step in the right direction.

COVID-19 rapid guideline: managing the long-term effects of COVID-19
https://www.nice.org.uk/guidance/ng188

Quote:
This guideline covers identifying, assessing and managing the long-term effects of COVID-19, often described as ‘long COVID’. It makes recommendations about care in all healthcare settings for adults, children and young people who have new or ongoing symptoms 4 weeks or more after the start of acute COVID-19. It also includes advice on organising services for long COVID.

This guideline has been developed jointly by NICE, the Scottish Intercollegiate Guidelines Network (SIGN) and the Royal College of General Practitioners (RCGP).

To develop the recommendations, we have used the following clinical definitions for the initial illness and long COVID at different times:

Acute COVID-19: signs and symptoms of COVID-19 for up to 4 weeks.
Ongoing symptomatic COVID-19: signs and symptoms of COVID-19 from 4 to 12 weeks.
Post-COVID-19 syndrome: signs and symptoms that develop during or after an infection consistent with COVID-19, continue for more than 12 weeks and are not explained by an alternative diagnosis.


It's a huge document that covers almost all areas (for patient and clinician) and takes a lot of reading, for that reason i cherry picked only a couple of the 'best bits' i was happy to see included:

A patient handbook can be downloaded (PDF) on this page:
https://www.sign.ac.uk/patient-and-public-involvement/patient-publications/long-covid

Common symptoms of ongoing symptomatic COVID-19 and post-COVID-19 syndrome
Symptoms after acute COVID-19 are highly variable and wide ranging. The most commonly reported symptoms include (but are not limited to) the following...
https://www.nice.org.uk/guidance/ng188/chapter/Common-symptoms-of-ongoing-symptomatic-COVID-19-and-post-COVID-19-syndrome

Of the 28 symptoms listed in the article immediately above i have suffered and/or continue to suffer from 20 of them... with more that are not listed.

My long road hasn't ended yet but i'm more hopeful now that the end is getting nearer.


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 Post subject: Re: Long Covid.
 Post Posted: Tue Dec 22, 2020 7:25 pm 
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Long Covid clinics 'not envisaged' for Scotland
https://www.bbc.co.uk/news/uk-scotland-55361878

The headline pretty much says it all.
To say i'm disappointed would be understating my frustration (and anger).

Whilst i wouldn't wish Long Covid on anyone i can't help think that someone in power needs to suffer from it before serious action is taken...

Quote:
On Friday the Scottish government told the BBC it was considering evidence for the use of specialist clinics following the publication of new long Covid guidelines.

However, Prof Leitch told Friday's daily briefing the likely outcome would be that long Covid would be managed in a similar way to asthma or epilepsy.

He said the number of people suffering from "long, stubborn debilitating disease" was "very small" and that those individuals would be treated in rehabilitation such as respiratory or cardiac services.


Quote:
Campaigner Lesley Macniven, who is behind the Long Covid Action Group in Scotland, has been experiencing lasting virus symptoms since March.

The group has been speaking to Scottish government officials to inform the guidance given on the condition.

Ms Macniven said while the new guidelines were "brilliant" for people who had been freshly diagnosed with the virus, it was still the "start of the change process".

She added that even if Scotland did not create long Covid clinics, the services needed to be accessible to patients.

"We've got to remember there are people who have been living with this," she said. "What we have at the moment was not designed for long Covid in mind so we're having to catch up and find additional resources or additional services.

"We can't be arbitrary about how long it's going to take people to go through this process and come out the other side - there needs to be an element of service provision that's flexible."


If i could ask a question of Prof Leitch, it would be...
So when do i begin rehabilitation and in what form will that take... i've been waiting for a call from NHS Scotland for over four months since i was forced to stop work, ten months if you include when i first contracted Covid and nine months since i started to develop "Long Covid" symptoms.

I might be one of a "very small" number in Scotland but i'm suffering, and i exist! :x


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 Post subject: Re: Long Covid.
 Post Posted: Thu Dec 24, 2020 5:14 pm 
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Doddie wrote:
The UK Govt published the long awaited Guidance for Long Covid yesterday, whilst primarily aimed at clinicians it is still a very interesting read as a patient... and imho very well written!

I just read the following on The Lancet website and it appears my humble opinion may be wrong, again lol... there's a good reason why i'm not a Doctor!

Long COVID guidelines need to reflect lived experience:
Quote:
We were encouraged by the announcement, on Oct 5, 2020, that the National Institute for Health and Care Excellence (NICE), the Scottish Intercollegiate Guidelines Network (SIGN), and the Royal College of General Practitioners (RCGP) were developing “a guideline on persistent effects of COVID-19 (long COVID) on patients”,9 consulting with a broad range of professional groups and some people with long COVID.

The final NICE–SIGN–RCGP guideline, published on Dec 18, 2020,10 should provide clear information on what is and is not known about the natural history of long COVID, provide guidance for health-care workers to identify cases, and inform clinical practice for the correct management of people with symptoms. Accurate assessment, diagnosis, treatment, and rehabilitation are especially important given the increasing evidence of organ pathology and impairment,11 with preliminary findings from 201 patients in a prospective, longitudinal, observational study suggesting up to 66% of people with long COVID have organ damage and 25% have damage to multiple organs.12 In our view, the NICE guideline10 does not do this sufficiently. We are disappointed that the guideline does not adequately address the following issues...


Source with more: https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(20)32705-7/fulltext


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 Post subject: Re: Long Covid.
 Post Posted: Tue Jan 12, 2021 7:26 pm 
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This video is a fascinating watch, be aware that it's 1hr 29m long.
https://www.pscp.tv/AppgCoronavirus/1vAxRwpqqbXKl?t=6s

What is an APPG?: cf. https://www.parliament.uk/about/mps-and-lords/members/apg/

Fyi, yes the video includes politicians but it is in no way party specific, this post is solely intended to highlight how far forward we have moved, add that without politicians understanding what Long Covid is then nothing ever will change.


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 Post subject: Re: Long Covid.
 Post Posted: Sun Jan 17, 2021 5:47 pm 
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The last time i looked at this number outside of the media, the number was 180,000... i'm not surprised to see an MP now claim it's 300,000.

Quote:
The number of people affected by long Covid is "staggering", an MP has warned.
Opening a debate in the Commons, Layla Moran said 300,000 people were now living with the long-term effects of the virus in the UK.
https://www.bbc.co.uk/news/uk-england-oxfordshire-55668650

It could be much higher, historically since Long Covid was "recognised" the numbers of people affected by Long Covid has been between 10 & 30%... the bean counters always factor the lower estimate of 10%, so it could be between 300,000 to 900,000, in the UK alone.


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 Post subject: Re: Long Covid.
 Post Posted: Sun Jan 17, 2021 6:13 pm 
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I want to share this article because it explains why i don't rate the Covid Centres that are being setup in the UK.

Fyi, my GP told me last week that they are now available in Scotland... i didn't take her up on the offer to be referred to one because i felt tht i might be able to return to work soon... we had a discussion about what exactly the Scottish Covid centres would offer me... i asked, are they not just diagnostic centres to rule out other causes given that there is no known therapy for Long Covid?

She replied no, they are assessment centres.

I didn't quite understand what the difference was and she seemed quite vague when i pressed her on that, suffice to say i backed down and agreed that if my return to work didn't go as planned then i would consider referral to an assessment centre.

After watching the following video, even if i end up being referred to an assessment centre, i won't expect much.

Long-COVID sufferer speaks of constant symptoms and struggles since contracting virus 10 months ago
https://www.euronews.com/2021/01/14/long-covid-sufferer-speaks-of-constant-symptoms-and-struggles-since-contracting-virus-10-m?jwsource=cl

I really wish the World Health Organisation would release their investigation results... i know it's only Jan 17th but people need answers.


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 Post subject: Re: Long Covid.
 Post Posted: Sun Jan 17, 2021 7:51 pm 
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Unfortunately, everything takes time and lots of research study. Hopefully they will come up some solid answers before too long. Clearly there are a significant of people suffering from the myriad symptoms of Long COVID.

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 Post subject: Re: Long Covid.
 Post Posted: Sun Jan 17, 2021 8:04 pm 
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I sort of think that if the WHO had something definite to say they would. I would rather they say nothing instead of saying something before it was proven fact. Mayhaps, if I were suffering, my opinion might be different but it is what it is... Yes, people need answers but do they need answers based on hope or fact? As for myself I want fact.

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 Post subject: Re: Long Covid.
 Post Posted: Mon Jan 18, 2021 4:18 pm 
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jaylach wrote:
I sort of think that if the WHO had something definite to say they would. I would rather they say nothing instead of saying something before it was proven fact. Mayhaps, if I were suffering, my opinion might be different but it is what it is... Yes, people need answers but do they need answers based on hope or fact? As for myself I want fact.

I couldn't agree more.

I guess my frustration comes from suspecting for months i was living with something before i was taken seriously (my first sign of probable Covid-19 infection was in Feb 2020 but testing of any type didn't exist at that time.).
First signs of my post-Covid infection began to surface in March through August, understandably no-one could relate those to Covid, including myself.
In August i was forced to stop working because my health was on a rapid downward spiral, still no-one knew why.
I found out more by luck than chance that hundreds if not thousands of others (mostly healthcare workers at that time) were reporting similar issues, in late Aug/early Sept... still the medical profession and others were seemingly ignorant of this looming issue.

Then in Sept there was this, "We have heard your message about long covid and we will act, says WHO
https://www.longcovidsos.org/post/longcovidsos-take-part-in-historical-meeting-with-the-who

I had high hopes at that time that recognition and guidelines etc for managing Long Covid by the WHO would at least move at a rapid pace after that but as far as i can tell the WHO have been largely silent ever since and i can't understand why?

To be clear, i do not expect the WHO to announce any time soon that a treatment for Long Covid will be announced, rather, they have the expertice and knowledge to collate how countries around the globe are helping people suffering from Long Covid so ought to be the best placed people to issue guideance on this matter... but unless i've missed something, they have been pretty much silent ever since... heck, even a simple 'we don't know anymore than we did then' would be re-assuring in that at least they are still working on it.

The WHO still haven't officially recognised that 'Post-Covid symptoms' even exists depite the fact that every man, dog, and Government probably knows by now that it does.

I find the latter the most frustrating, not only for me, but also for those who have been infected with Covid-19 (recently or about to be), who are about to experience a whole new world of pain... Post Covid Symptoms are horrible, made worse when it's not a recognised condition.


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 Post subject: Re: Long Covid.
 Post Posted: Mon Jan 25, 2021 5:35 pm 
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More bad news i'm afraid, this time in the press today about how Long Covid affects children...

Children battling symptoms of Covid months after being infected
https://metro.co.uk/2021/01/25/long-covid-in-kids-how-covid-affects-kids-months-after-positive-test-13962441/

:cry:


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 Post subject: Re: Long Covid.
 Post Posted: Mon Jan 25, 2021 7:08 pm 
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Yes, the amount of bad news for this virus continues to come. At least there is also some good news in that the latest reports indicate that the vaccines seem to be effective against the latest mutations.

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 Post subject: Re: Long Covid.
 Post Posted: Mon Jan 25, 2021 7:49 pm 
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Hopefully, with the U.S.A getting back in bed with WHO things can get a bit more organized. I don't mean that the U.S.A. opening again with WHO creates an immediate solution or anything. I just mean that it may help to create a globally centralized investigation that hopefully may lead to some very much needed answers.

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 Post subject: Re: Long Covid.
 Post Posted: Mon Jan 25, 2021 7:59 pm 
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I saw in the media today that the Moderna vaccine appears to be effective against the new variants but i've not seen anything so far that says the Pfizer or AstraZeneca etc vaccines are the same?

Talking of the new variants, i was going to start a new thread on that but because it's become a point of discussion in this thread and is pretty much US & Canada specific i might as well post it here...

cf.
The CDC has reached out to UK officials and is reviewing their new mortality data associated with variant B.1.1.7
https://youtu.be/GoGZvQERblI

As always with the videos posted by Dr John Campbell, the links he uses in his presentaion can be found by expanding the "Show More" link below the video.

Quite startling is the link to the following... "What happens if a high-transmission variant becomes established, and is transmitted in the general community in Canada?"
http://www.sfu.ca/magpie/blog/high-transmission-variant-modelling.html


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 Post subject: Re: Long Covid.
 Post Posted: Mon Jan 25, 2021 8:06 pm 
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jaylach wrote:
Hopefully, with the U.S.A getting back in bed with WHO things can get a bit more organized. I don't mean that the U.S.A. opening again with WHO creates an immediate solution or anything. I just mean that it may help to create a globally centralized investigation that hopefully may lead to some very much needed answers.

The USA decision not to communicate with the WHO was in my opinion a catastrophic decision, i have no doubt that had the USA not pulled out from the WHO we'd already have answers, maybe not a solution, but we'd collectively be a year closer to finding one.

Welcome back to the fold :)


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