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 Post subject: Re: Long Covid.
 Post Posted: Tue Jan 26, 2021 8:05 pm 
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OMG!!!

Sorry for being so vocal about this but OMG the WHO has at long last published something about Long Covid!!!

WHO recommends follow-up care, low-dose anticoagulants for COVID-19 patients

Quote:
26 January 2021

WHO recommends that patients who have COVID-19 - both confirmed and suspected - should have access to follow-up care if they have persistent, new or changing symptoms.

This is one of the recommendations made by WHO in revised clinical management guidelines.

Evidence was gathered on the post COVID condition, so-called ‘long COVID’, where people who have recovered from COVID-19 continue to have longer-term issues like extreme fatigue, persistent cough and exercise intolerance.

Understanding this condition is one of WHO’s priority areas of work. In February 2021, WHO will organize a series of consultations to reach consensus on a description of this condition and its subtypes, and case definitions. This scientific understanding will inform the name of the condition. The consultations will include a broad range of stakeholders, including patient groups.


For COVID-19 patients at home, WHO suggests the use of pulse oximetry to measure oxygen levels in the blood. This needs to be coordinated with other aspects of home care, such as education for the patient and care provider and regular follow-up of the patient.

For hospitalized patients, WHO suggests the use of low dose anticoagulants for preventing the blood clots forming in blood vessels (thrombosis).

For hospitalized patients who are taking supplemental oxygen (including high-flow nasal oxygen) or non-invasive ventilation, WHO suggests positioning patients on their stomachs to increase oxygen flow (awake prone positioning).

The guidelines also include recommendations on the use of care bundles to systematize care provision for COVID-19 patients, as well as a recommendation to favour clinical judgement over models in making decisions for the patient’s care.

The recommendations were made by an independent panel of experts, the Guideline Development Group, on the basis of detailed rapid reviews of all available evidence.

The guidelines are a living document, updated regularly as more data becomes available.

Source, edited for emphasis: https://www.who.int/news-room/feature-stories/detail/who-recommends-follow-up-care-low-dose-anticoagulants-for-covid-19-patients

I haven't had a chance to drill down into the facts yet but that this is even posted by the WHO, it's huge.


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 Post subject: Re: Long Covid.
 Post Posted: Tue Jan 26, 2021 9:24 pm 
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Quote:
Understanding this condition is one of WHO’s priority areas of work. In February 2021, WHO will organize a series of consultations to reach consensus on a description of this condition and its subtypes, and case definitions. This scientific understanding will inform the name of the condition. The consultations will include a broad range of stakeholders, including patient groups.

To be clear, after almost a year when nearly no-one believed i had Covid in February last year when i was certain i had... to get to this position today is nothing short of a seismic shift.

I don't know what the outcome of the WHO consultations will be but i'd be amazed if it was backward step.

A recognised condition would be a starting point.


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 Post subject: Re: Long Covid.
 Post Posted: Thu Jan 28, 2021 3:35 pm 
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I've had a chance to look in more detail at the WHO link above and it is not for the faint of heart... they really are looking at every aspect! :D
The link again: https://www.who.int/publications/i/item/WHO-2019-nCoV-clinical-2021-1

cf. from the link above:
COVID-19 Clinical management: living guidance:
https://apps.who.int/iris/rest/bitstreams/1328457/retrieve
COVID-19 Clinical management: living guidance, 25 January 2021: web annex:
https://apps.who.int/iris/bitstream/handle/10665/338871/WHO-2019-nCoV-clinical-web_annex-2021.1-eng.pdf

Both of those links lead to PDF documents, the former to my untrained eye is an easier read, page 50+ & 60 especially.
The latter is full of statistics and medical jargon that largely flew right over my head.


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 Post subject: Re: Long Covid.
 Post Posted: Tue Feb 02, 2021 5:49 pm 
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Time to team up and tackle Long Covid, says WHO expert
https://www.france24.com/en/live-news/20210201-time-to-team-up-and-tackle-long-covid-says-who-expert

I don't normally quote an entire article but on this occasion i will make an exception simply because if the entire article isn't read then you won't get the full context of what is being said... that a lead from the WHO has said this today, is for me, a remarkable sign that things are soon about to change for sufferers of Long Covid.

I say that not only for people like me who have lived through the Long Covid nightmare for months, but also for those who are about to experience it now and in the future.

Quote:
It is time to start solving the mystery of Long Covid, an aspect of the pandemic blighting millions of lives, the World Health Organization's leader on post-Covid conditions told AFP.

Little is known about why some people, after coming through the acute phase of Covid-19, struggle to recover and suffer ongoing symptoms including tiredness, brain fog, cardiac and neurological disorders.

At this stage of the pandemic, the world is fixated on vaccine roll-out and new, more contagious variants of the coronavirus.

However, Long Covid deserves similar urgent attention, said Janet Diaz, the clinical care lead in the WHO's emergencies programme, ahead of a push for a globally-unified approach to the problem.

"We still don't fully understand what Long Covid is," Diaz told AFP in an interview outside the WHO's headquarters in Geneva.

"There's quite a bit to learn, but I am confident that the scientific community is really rallying around."

Tellingly, Long Covid does not yet have a proper name.

The WHO currently calls it post-Covid condition, while other terms in circulation include post-acute Covid syndrome and Covid long haulers.

- Building up a picture -

The WHO is hosting a first global seminar on Long Covid on February 9. It will bring scientists, experts and clinicians together to define the condition, give it a formal name and harmonise study methods.

"It's a condition that needs further description, further understanding of how many are affected and further understanding of what is causing it, so we can better prevent, manage and treat it," said Diaz, 48, a US respiratory physician and intensive care doctor.

She said British and other studies suggested potentially one in 10 cases may have prolonged symptoms one month after infection, but there was no picture yet of how long those conditions might persist.

The elderly and those with underlying conditions are most at risk of serious disease from Covid-19.

But the profile of Long Covid patients does not match. It affects people with varying degrees of severity of disease and "seems to potentially also include younger people", including children, said Diaz.

While the pandemic response priority remains preventing people from catching the virus and falling ill, treating coronavirus cases "must also now include care after the acute illness... until you get back to full health", Diaz said.

- Cracking the code -

Diaz said fatigue seemed to be the most common symptom, with others including post-exertional malaise, cognitive dysfunction or brain fog, shortness of breath, heart palpitations and neurological problems.

"How these are all related -- that's what we don't understand. Why would one person get this, and the other person get that?" asked Diaz, saying researchers needed to crack the underlying mechanisms of the disease that were causing these persistent symptoms.

"Is it something due to the virus? Due to the immune response? If we had a better idea, we could start to target some interventions to reduce symptoms."

Diaz said a "tremendous amount" of research was underway, largely classic observational studies following discharged patients.

The first Covid-19 cases were discovered in China in December 2019. But it was only when Long Covid started appearing on the radar months later that mystified sufferers began reaching out and joining the dots themselves.

"That's been a tremendous movement," said Diaz, who took on the Long Covid remit in October.

In the first wave of the pandemic, struggling health care systems got patients through the acute illness, "but then didn't realise they weren't recovering to their previous health".

She said the patient-led research had driven scientists to do further studies, and "collaboratively we should get to an answer quicker".

- 'Stay hopeful' -

The February 9 seminar, at which scientists will present their latest findings, will be the first in a regular series.

"Right now, we probably have enough descriptive data to start to bring it all together," said Diaz.

Besides agreeing a definition and a name, the meeting will launch a standardised data collection methods for monitoring patients, and start opening doors towards clinical prevention and management.

"We quickly have to build our understanding from each other's experiences," Diaz said.

Crucially, donors will be taking part, and are "really aware" of the pressing need for Long Covid funding, she added.

In a message to the potential millions still suffering long after they are officially considered recovered, Diaz said: "Stay hopeful".

"People may have prolonged symptoms, but we do know people are recovering. It may take a long time, but they are still recovering to previous health. We're with you."


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 Post subject: Re: Long Covid.
 Post Posted: Mon Feb 08, 2021 8:14 pm 
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From the PBS America website:

Why we haven’t cracked the mystery of COVID ‘long-haulers’
Quote:
“Long-haul” COVID, long COVID, post-COVID: it’s an illness still without an official name. But for people whose COVID-19 symptoms linger for months, the effects can be devastating and debilitating. Their symptoms range from the mundane to the bizarre: brain fog, shortness of breath, fatigue, tremors, tooth loss, racing heart, glaucoma, among others. In this episode of “America, Interrupted,” PBS NewsHour correspondent Stephanie Sy talks with three “long haulers” about their experiences battling this mysterious illness, and Dr. William Li, a vascular biologist who is trying to unravel this medical mystery through his research.

https://www.pbs.org/newshour/podcasts/special-series/why-we-havent-cracked-the-mystery-of-covid-long-haulers

It is so good that the US mainstream media is at long last talking about this mysterious syndrome, the world has missed you.


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 Post subject: Re: Long Covid.
 Post Posted: Wed Feb 10, 2021 11:43 pm 
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Still silence from the WHO...
https://www.france24.com/en/live-news/20210201-time-to-team-up-and-tackle-long-covid-says-who-expert

Quote:
The February 9 seminar, at which scientists will present their latest findings, will be the first in a regular series.

"Right now, we probably have enough descriptive data to start to bring it all together," said Diaz.

Besides agreeing a definition and a name, the meeting will launch a standardised data collection methods for monitoring patients, and start opening doors towards clinical prevention and management.

"We quickly have to build our understanding from each other's experiences," Diaz said.

Crucially, donors will be taking part, and are "really aware" of the pressing need for Long Covid funding, she added.

In a message to the potential millions still suffering long after they are officially considered recovered, Diaz said: "Stay hopeful".


@Diaz (i know it won't be read here), it is becoming very hard to stay hopeful when i see the WHO publish nonsense like the Wuhan investigation outcome instead of publishing what really matters.

i.e. I don't need to know where it came from, i need answers to help me get through it.

I caught this disease in circa February last year, every day feels like another nail, i'm tired of it, if i can't have my life back then i want the illness catagorised so i can seek the appropriated medical care and/or social security.

I feel i need to start getting angry with the WHO about this, not in a revolutionary way, just that sometimes you need to push your case in order to be taken seriously... the one avenue i haven't so far pushed is the WHO because i still have answers to come back from my parliamentarians.

My patience, health, and finances, are wearing thin from the lack of action... i need to sleep on this even though i know what the outcome will be... likely the WHO won't listen to me but that doesn't mean there isn't a world of people associated with the WHO who won't.

The single belief that has got me through the last 12 months is that someone out there cares and that answers will be found, I can't give up on that now.


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 Post subject: Re: Long Covid.
 Post Posted: Sun Feb 14, 2021 10:53 pm 
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UK specific again i'm afraid, but i can't be blamed for that, if you know of something more specific to your region please share it:

Long Covid Minister needed to respond to growing crisis (3 February 2021)
https://www.pslhub.org/learn/coronavirus-covid19/patient-recovery/long-covid-minister-needed-to-respond-to-growing-crisis-3-february-2021-r3983/

Quote:
Summary

Official statistics indicate there are currently hundreds of thousands of people living with Long Covid in the UK. Many of those who contracted Covid-19 at the start of the pandemic are still experiencing significant symptoms almost a year on from their initial infection; some have already passed that grim milestone.

Meanwhile, we can expect case numbers of Long Covid to rise significantly as people continue to become infected; recent data shows that at least 1 in 10 people still experience symptoms 12 weeks after initial infection.[1]

The implications of Long Covid for individual patients, our health service and wider society are multifaceted, complex and likely to be long-term. There has been some progress to put in place support for people with Long Covid, but many are yet to receive help.

The article continues.


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 Post subject: Re: Long Covid.
 Post Posted: Sun Feb 14, 2021 11:26 pm 
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Does anyone other than myself and the mods read this thread?

I'm starting to think that no-one other than myself really cares... a simple yes would suffice to let me know that what i'm researching and sharing here isn't wasted time and effort.


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 Post subject: Re: Long Covid.
 Post Posted: Sun Feb 14, 2021 11:28 pm 
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Since I'm an admin, not a mod... ;) I look but just don't have much to say.

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 Post subject: Re: Long Covid.
 Post Posted: Mon Feb 15, 2021 1:14 am 
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Another admin here. I am interested in your updates and almost always follow your links to videos and articles. I can't speak for anyone else, but I do believe you have been accumulating a valuable collection of resources here.

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 Post subject: Re: Long Covid.
 Post Posted: Mon Feb 15, 2021 7:22 am 
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I read them I don't always follow the links but it is all valuable information for anyone wanting to know or keep informed about this terrible pandemic we all find ourselves in.

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 Post subject: Re: Long Covid.
 Post Posted: Mon Feb 15, 2021 8:02 pm 
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Thanks Jay, Steve & Joan :)

This has been the worst year of my life, i feel like this disease has consumed it entirely... which it certainly has but, and i know i've expressed this before, i won't let it win.

Just about all of my life in the last 6 months has been spent trying to understand what is happening to my body, and why?
I can't honestly say i'm any closer to understanding the what, but at least the why is now clear.

Part of travelling along that path has meant i've found out more than i ever wanted to know about medical jargon and Covid-19 but it has been a path i needed to travel... until i'm back at full health, and even then, so long as others suffer from Long Covid when there is no scientific knowledge about how to treat Long Covid i will keep on the path.

I have no doubt that being able to post here has helped me work through what otherwise would have been impossible for me to cope with.

Anyway, i looked yesterday at the Covid-19 forum and i was shocked to see how many different threads i'd started, Jay started 8 and vic479h started 1, all the rest i started! :shock:

Call it it what you will but i suddenly thought what am i doing and does anyone actually care about what i'm saying?

I don't expect every word to be read, and certainly don't expect every second of all the videos to be viewed, some of the videos are stupidly long which is why i try when applicable to give time markers for the relevant info... anyway, good to know i'm not wasting my time :D

As an aside, is an admin not just a mod with elevated privelages? e.g. They are all mods?

Runs for the dugout, tin hat ON! :lol:


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 Post subject: Re: Long Covid.
 Post Posted: Mon Feb 15, 2021 8:30 pm 
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Doddie wrote:
As an aside, is an admin not just a mod with elevated privelages? e.g. They are all mods?

Runs for the dugout, tin hat ON! :lol:

There different levels. Lets just take Admins. The highest level of Admin is a Founder. A Founder can remove a regular Admin but a regular Admin cannot remove a Founder. Then it goes further. Say that these forums were more diverse as to topic. I could give Admin privileges to a person for just one forum but not others. The last part is even true as to regular users. I could give a specific user access to specific forums denying access to others.

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 Post subject: Re: Long Covid.
 Post Posted: Mon Feb 15, 2021 8:39 pm 
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Sticks helmet above fortified parapet to ask...

Yes, but an admin and a mod can all moderate can't they?

Retreats back to dugout


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 Post subject: Re: Long Covid.
 Post Posted: Mon Feb 15, 2021 8:51 pm 
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Yes, an Admin can do anything that a Mod can do but a Mod cannot do all that an Admin can do in general.

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 Post subject: Re: Long Covid.
 Post Posted: Mon Feb 15, 2021 8:55 pm 
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I know that, that's why i used the word mod and not admin, or mods and admins... i suspect i might be being pedantic? :lol:


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 Post subject: Re: Long Covid.
 Post Posted: Mon Feb 15, 2021 9:07 pm 
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The funny thing is that I could actually make it so a Mod had higher privileges than an Admin. What I mean is that in the case of a more diverse forum setup a person could be an Admin in a specific forum and a regular user in others. In the forums where the Admin of one forum and a regular user in others a Mod would have more privilege in the forums where the Admin was just a regular user even though that Admin would still show as being an Admin; in this case the Admin's name would still show as red even though they were a regular user in that specific forum.

Really, for a totally free package, this forum software is VERY diverse.

BTW, when I said "Since I'm an admin, not a mod..." I was teasing as I'm sure that Steve was also. :mrgreen:

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 Post subject: Re: Long Covid.
 Post Posted: Mon Feb 15, 2021 9:20 pm 
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jaylach wrote:
BTW, when I said "Since I'm an admin, not a mod..." I was teasing as I'm sure that Steve was also. :mrgreen:

I got that at the time, i'm teasing back at you... whether you are an admin or a mod, the fact remains that both have the power to moderate posts in a Forum, naturally you have the power as an admin to set what powers any mod might be given, but the fact remains that whether an admin or a mod, both can moderate to some degree, hence i chose to use the word mod other than admin in my post. :P


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 Post subject: Re: Long Covid.
 Post Posted: Mon Feb 15, 2021 9:36 pm 
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Doddie wrote:
jaylach wrote:
BTW, when I said "Since I'm an admin, not a mod..." I was teasing as I'm sure that Steve was also. :mrgreen:

I got that at the time, i'm teasing back at you... whether you are an admin or a mod, the fact remains that both have the power to moderate posts in a Forum, naturally you have the power as an admin to set what powers any mod might be given, but the fact remains that whether an admin or a mod, both can moderate to some degree, hence i chose to use the word mod other than admin in my post. :P

Ya, I know. ;)

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 Post subject: Re: Long Covid.
 Post Posted: Mon Feb 15, 2021 9:49 pm 
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jaylach wrote:
Ya, I know. ;)

I sometimes wonder about our sanity, which is the more sane? :rofl2:


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 Post subject: Re: Long Covid.
 Post Posted: Mon Feb 15, 2021 11:52 pm 
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jaylach wrote:
BTW, when I said "Since I'm an admin, not a mod..." I was teasing as I'm sure that Steve was also. :mrgreen:


Yep. :-)

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 Post subject: Re: Long Covid.
 Post Posted: Tue Feb 16, 2021 12:27 am 
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Doddie wrote:
jaylach wrote:
Ya, I know. ;)

I sometimes wonder about our sanity, which is the more sane? :rofl2:

As a one line definition of sane "Whatever is considered the norm within a given society." works fairly well... Ya, my line... Now, given the condition of today's society, I much prefer to not be sane.

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 Post subject: Re: Long Covid.
 Post Posted: Tue Feb 16, 2021 10:01 am 
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Who wants to be normal, where's the fun in that. :rofl2:

Joking aside though who can honestly say what is normal, what is normal to you and me could be seen as crazy to someone else but as long as we're not hurting anyone or breaking any rules we should be okay. :D

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 Post subject: Re: Long Covid.
 Post Posted: Wed Feb 17, 2021 11:44 pm 
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Normal is what i say is normal, at least in my head :rofl2:


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 Post subject: Re: Long Covid.
 Post Posted: Sun Feb 21, 2021 8:19 pm 
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Long Covid: ‘It’s a year since I’ve felt like myself’
https://www.theguardian.com/society/2021/feb/20/long-covid-still-suffering-effects-virus-months-nhs-clinics

While yet to be convinced the so called clinics in the link above will actually help, that people like George in the link are one year on and still suffering is more than worthy of note.

I am not far behind her.


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