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 Post subject: Re: Long Covid.
 Post Posted: Thu Feb 25, 2021 4:19 pm 
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At long last there is some movement by the Scottish Government on setting up help for sufferers of Long Covid, below is part of an email that i recieved yesterday from "Chest Heart & Stroke Scotland", aka CHSS.

A wee recap, CHSS was the organisation that i used many months ago to fill out a template email to send to all of my Members of the Scottish Parliament (MSP's) in a call for help, all 8 of them! :dunno: :omg:
I got a reply from 3 saying they would either raise the matter in the Scottish Parliament or write to the First Minister for further information on what the Government plans were, i never heard any more.


Naturally this good news is not all down to me (as the email sort of suggests lol) but to the actions of many thousands like me, still, it's a start.

Quote:
Dear George,

We're delighted to announce that thanks to your support we have secured £760,000 of joint funding with the Scottish Government to develop a national support service for people living with Long Covid.

This is a vital step towards a national, co-ordinated care service for Long Covid patients - and it's all because of you.

Because you took action and emailed your MSP, urging them to take action to offer better care for people with the condition, the Scottish Government have taken notice.

The funding, which will see the Scottish Government contribute £460,000 and £300,000 provided from Chest Heart & Stroke Scotland, will boost capacity for our vital support services. Over the coming months it will also lead to the creation of a co-ordinated nationwide care pathway between the NHS, GPs and Chest Heart & Stroke Scotland.


More here, at time of typing i can't find a press release on the CHSS website:

Fund could ease 'constant battle' of long Covid in Scotland
https://www.bbc.co.uk/news/uk-scotland-56183996


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 Post subject: Re: Long Covid.
 Post Posted: Thu Feb 25, 2021 5:38 pm 
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WHO says patients suffering long Covid symptoms ‘need to be heard’
https://www.france24.com/en/europe/20210225-who-says-patients-suffering-long-covid-symptoms-need-to-be-heard

Quote:
The World Health Organization's European branch said Thursday that patients experiencing post-Covid or long Covid symptoms needed to be listened to and understanding long-term consequences should be made a priority by health authorities.

"The sufferers of post-COVID conditions need to be heard if we are to understand the long-term consequences and recovery from COVID-19. It's a clear priority for WHO, and of the utmost importance. It should be for every health authority," Hans Kluge, regional director for WHO Europe, told a press conference.

While some studies are beginning to shed light on the illness, it is still unclear why some patients with Covid-19 continue to show symptoms for months, including tiredness, brain fog, and cardiac and neurological disorders.

"The burden is real and it is significant. About one in 10 Covid-19 sufferers remain unwell after 12 weeks, and many for much longer," Kluge said.

Noting that reports of long-term symptoms came soon after the disease was first discovered, he said that some patients were "met with disbelief or lack of understanding."

Kluge stressed that those patients "need to be heard if we are to understand the long-term consequences and recovery from Covid-19."

WHO Europe called on European countries and institutions to "come together as part of an integrated research agenda," harmonising data collection tools and study protocols.

The regional director also said he would bring together the 53 member countries of the WHO's European region, including several countries in Central Asia, "to set out a regional strategy."

In early February, WHO organised the first virtual seminar devoted to so called "Long Covid," in order to properly define it, give it a formal name and harmonise methods for studying it.


Fwiw, I have been unable to find anything about the outcome of the February seminar.


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 Post subject: Re: Long Covid.
 Post Posted: Thu Feb 25, 2021 8:10 pm 
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I'm simply stunned, it was only a few weeks ago that no-one was talking about this, now look where we are!

WOW!!!!

I think this is the UN report that my previous post is talking about, the level of detail is astonishing!
[PDF download] https://apps.who.int/iris/bitstream/handle/10665/339629/Policy-brief-39-1997-8073-eng.pdf


Quote:
Foreword
Over the past year the world has tracked the progress of the
COVID-19 pandemic using data on cases and deaths. Yet we
now know that these provide only a partial picture. Many
people struggle to recover from the acute infection,
suffering often disabling symptoms that last weeks or
months and, in some cases, with disabilities that are likely to
be very long lasting. Our understanding of this new
condition, now termed Long COVID, is growing rapidly. For
this, we owe a great deal to many people, but especially to
those affected who have come together to document,
analyse and report on the complex nature of this condition
and its impact on their lives, as well as the health
professionals, in some cases themselves suffering from Long
COVID, who have initiated important research projects.
This policy brief seeks to raise awareness of Long COVID and
to provide a resource for those in decision-making roles,
setting out in basic terms what we know about this
condition and what the policy options are for developing a
response that leaves no one behind.
This is rapidly changing field and one where we have much
to learn from the many initiatives being taken across Europe,
some of which are described in this policy brief. We now
need to implement and evaluate new models of care,
building on the key messages from the 2018 Tallinn
Conference that called on us to include, invest, and innovate
and from the European Programme of Work 2020–25
United Action for Better Health. The legacy of COVID-19
will, sadly, be with us for a long time.
Hans Kluge
Regional Director
WHO Regional Office for Europe


Source:
WHO-backed policy brief calls for action to address ‘long COVID’
https://news.un.org/en/story/2021/02/1085772


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 Post subject: Re: Long Covid.
 Post Posted: Fri Feb 26, 2021 7:32 pm 
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In my opinion this is fantastic advice:

How To Support A Loved One Who Has Long-Haul COVID-19
https://www.huffingtonpost.co.uk/entry/support-loved-one-long-haul-covid_l_6037eceac5b60f03d9b320d9


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 Post subject: Re: Long Covid.
 Post Posted: Fri Feb 26, 2021 7:52 pm 
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As an aside to the above, my wife has gone above and beyond for me.

My sister has also been outstanding.

Without the support of both of them i'm not so sure if i'd still have a will to live.

If you have a sister then you'll know how annoying they can be... but omg, i am so glad i have one.

Because of them i will continue my fight.


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 Post subject: Re: Long Covid.
 Post Posted: Sun Feb 28, 2021 8:43 pm 
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Every word she says i understand:

My long covid journey - Part 3 - Tiredness Vs Fatigue.
https://youtu.be/Ukd8gR3ur9g

Hearing her voice fade as she talks i live nearly every day, this is Long Covid and it's so sad to watch.


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 Post subject: Re: Long Covid.
 Post Posted: Tue Mar 02, 2021 8:03 pm 
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Below is the France24 source, i think:

25 February, 2021 - Statement from the Regional Director
https://youtu.be/Tzt8z6E94Ts

WHO Source:
https://www.euro.who.int/en/media-centre/sections/statements/2021/statement-update-on-covid-19-whoeurope-calls-for-action-on-post-covid-conditionslong-covid
----------------------------------------------------------------------------------------------------------------------

Doddie wrote:
WHO says patients suffering long Covid symptoms ‘need to be heard’
https://www.france24.com/en/europe/20210225-who-says-patients-suffering-long-covid-symptoms-need-to-be-heard

Quote:
The World Health Organization's European branch said Thursday that patients experiencing post-Covid or long Covid symptoms needed to be listened to and understanding long-term consequences should be made a priority by health authorities.

"The sufferers of post-COVID conditions need to be heard if we are to understand the long-term consequences and recovery from COVID-19. It's a clear priority for WHO, and of the utmost importance. It should be for every health authority," Hans Kluge, regional director for WHO Europe, told a press conference.

While some studies are beginning to shed light on the illness, it is still unclear why some patients with Covid-19 continue to show symptoms for months, including tiredness, brain fog, and cardiac and neurological disorders.

"The burden is real and it is significant. About one in 10 Covid-19 sufferers remain unwell after 12 weeks, and many for much longer," Kluge said.

Noting that reports of long-term symptoms came soon after the disease was first discovered, he said that some patients were "met with disbelief or lack of understanding."

Kluge stressed that those patients "need to be heard if we are to understand the long-term consequences and recovery from Covid-19."

WHO Europe called on European countries and institutions to "come together as part of an integrated research agenda," harmonising data collection tools and study protocols.

The regional director also said he would bring together the 53 member countries of the WHO's European region, including several countries in Central Asia, "to set out a regional strategy."

In early February, WHO organised the first virtual seminar devoted to so called "Long Covid," in order to properly define it, give it a formal name and harmonise methods for studying it.


Fwiw, I have been unable to find anything about the outcome of the February seminar.


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 Post subject: Re: Long Covid.
 Post Posted: Tue Mar 02, 2021 8:24 pm 
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Related to my last post, i really wish i hadn't watched the embedded video but best i don't go there...

The text verion speaks more than the video does (video is embedded):

Understanding and managing Long COVID requires a patient-led approach
https://www.euro.who.int/en/media-centre/events/events/2021/02/virtual-press-briefing-on-covid-19-understanding-long-covid-post-covid-conditions/understanding-and-managing-long-covid-requires-a-patient-led-approach

The last paragraph in particular says it all:
Quote:
So what needs to happen now?
We need multidisciplinary, multispecialty approaches to assessment and management. We need to work with patients and their families to develop new care pathways, including rehabilitation and online support tools. We need to look at employment rights, sick pay policies and access to benefit packages for those affected. And we need much more research, again with patients fully involved in deciding what questions to ask and how to answer them.


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 Post subject: Re: Long Covid.
 Post Posted: Mon Mar 15, 2021 5:46 pm 
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This is a video that in my opinion should be split into two different videos.

The first half is predominantly about the AstraZenica vaccine and the perceived health implications by some governments.

The second half is focused on Long Covid, very much a must watch in my opinion.

International vaccine safety concerns
https://youtu.be/Sjtrev8cZnk

Quote:
From the bullet points:

Early data, vaccination and long covid
Vaccine may alleviate symptoms in long Covid
Patient groups and scientists
About 10% symptomatic for 12 weeks, some longer
20 to 50% reduced symptoms, fatigue, headaches, brain fog
Effects may be temporary

Dr David Strain, University of Exeter
Runs long Covid clinics, member of the NHS long covid taskforce
We are getting people reporting improvements, and it’s quite widespread, about half of the people we are asking.

As always, watch and make up your own mind.


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 Post subject: Re: Long Covid.
 Post Posted: Mon Mar 15, 2021 6:30 pm 
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I like your use of "perceived" regarding the AstraZenica vaccine. I've been following the story and it is concerning that several countries have now suspended use of that vaccine. I do hope that they are able to prove that the vaccine is indeed safe as getting people vaccinated as quickly as possible is critical to curbing the spread and the potential for further variants...
And I do hope that the vaccine also brings relief for Long COVID sufferers such as yourself! That news is indeed encouraging.

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 Post subject: Re: Long Covid.
 Post Posted: Mon Mar 15, 2021 7:28 pm 
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sboots wrote:
I do hope that they are able to prove that the vaccine is indeed safe as getting people vaccinated as quickly as possible is critical to curbing the spread and the potential for further variants...

More to the point, they need to prove the vaccine is as ineffective as claimed.


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 Post subject: Re: Long Covid.
 Post Posted: Mon Mar 15, 2021 7:45 pm 
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As I stated before I had to pass on my offer of a shot with the Pfizer vaccine due to a cold spell preventing my car from starting. In hindsight I think that I am happy that happened. I think I would rather get the J&J vaccine. If I understand right the Pfizer vaccine just pumps you full of already formed anti-bodies. This does not "teach" the body to produce anti-bodies on it's own. The J&J vaccine seems to do just like most flu vaccines pumping in dead COVID cells that makes the body learn and form its own anti-bodies. The J&J method just seems more likely to be long term.

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 Post subject: Re: Long Covid.
 Post Posted: Mon Mar 15, 2021 7:46 pm 
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sboots wrote:
And I do hope that the vaccine also brings relief for Long COVID sufferers such as yourself! That news is indeed encouraging.

I'm clinging onto that, what mental state i'll be in when i get my vaccine and if nothing changes i don't know...

I'm on month 7 now since i had to down tools, one way or another i'll find a way to cope, but it isn't getting easier.


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 Post subject: Re: Long Covid.
 Post Posted: Mon Mar 15, 2021 8:05 pm 
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jaylach wrote:
As I stated before I had to pass on my offer of a shot with the Pfizer vaccine due to a clod spell preventing my car from starting. In hindsight I think that I am happy that happened. I think I would rather get the J&J vaccine. If I understand right the Pfizer vaccine just pumps you full of already formed anti-bodies. This does not "teach" the body to produce anti-bodies on it's own. The J&J vaccine seems to do just like most flu vaccines pumping in dead COVID cells that makes the body learn and form its own anti-bodies. The J&J method just seems more likely to be long term.


I'm almost lost for words, not because i think you don't know what you're talking about, more that i hoped this debate was long put to bed.

i.e. No-one knows how long any vaccine will last whether it is MRNA or not.

The fact is, no matter what you are offered you will be afforded a level of protection that will outlive not having anything.... to not have a vaccine is in my opinion borderline stupidity on a level that makes all we've lived through over the last 12 months meaningless.

To put that another way, i've lived with Long Covid for a year now and as every month has ticked by i've questioned whether what i'm going through is in my head or not... as each month ticked by i realised i wasn't alone because others in my position kept on reporting the same... i was living day by day, week by week, month by month.

That i could potentially be reinfected and put back to the position i was in in August scares the living daylights out of me.

I NEVER want to go through that again so i WILL take whatever vaccine is offered to me, it might not be the best and it might not be the most efficacious but i WILL take it.... to do otherwise when it is a known fact that ALL the vaccines protect against death and serious disease would just be stupidity on a level i've never reached before.


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 Post subject: Re: Long Covid.
 Post Posted: Mon Mar 15, 2021 8:48 pm 
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Don't get me wrong. If I had been able to get there I would have taken the Pfizer vaccine and will still do so when my turn comes around again and that is what is available. That said I still hope that when my turn comes up again it is the J&J version.

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 Post subject: Re: Long Covid.
 Post Posted: Tue Mar 16, 2021 11:07 am 
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jaylach wrote:
If I understand right the Pfizer vaccine just pumps you full of already formed anti-bodies. This does not "teach" the body to produce anti-bodies on it's own.


Not true, Jay -- https://www.acsh.org/news/2020/10/21/how-pfizers-rna-vaccine-works-15104
Your body produces the antibodies, but with the mRNA vaccines the trigger for your body to produce them is different.

-steve

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 Post subject: Re: Long Covid.
 Post Posted: Tue Mar 16, 2021 11:15 am 
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Thanks for the correction Steve.

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 Post subject: Re: Long Covid.
 Post Posted: Tue Mar 16, 2021 7:30 pm 
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The following is a second review and was published today, 16th March 2021, by the National Institute for Health Research in the UK:

Be aware that the links that follow are not light reading.

Quote:
The National Institute for Health Research Centre for Engagement and Dissemination (NIHR) has today published its second themed review into ‘Long Covid’.

Building upon its first themed review published in October 2020, the second review considered over 300 papers and academic opinion pieces from across the world, and provides a unique, evidence-based perspective.

The review finds that there is a considerable variation in the range of symptoms that have been considered Long Covid by researchers. Used as an umbrella term, Long Covid may cover conditions which may have different causes.

This lack of consistency around the definition and measurement of Long Covid makes it difficult to synthesise all the different emerging results, and also continues to hinder clinical consensus on what Long Covid actually is.

Nevertheless, after assessing the most recent available evidence, the review supports the possibility, highlighted in its first iteration, that there may be grounds to understand Long Covid as up to four syndromes, with different underlying causes and treatment needs.

These syndromes could include post-ICU syndrome; long-term organ damage; post-viral syndrome and, potentially, an entirely novel syndrome, separate from the others such that it could more specifically and uniquely be identified as ‘Long Covid’. Indeed there is some recent evidence that Long Covid might be an active disease, with continued inflammatory responses, lingering viral activity and/or blood clotting disorders.

Source and more:
NIHR publishes second themed review on ‘Long Covid’
https://www.nihr.ac.uk/news/nihr-publishes-second-themed-review-on-long-covid/27232

Yet more detail can be found here:
Living with Covid19 – Second review
https://evidence.nihr.ac.uk/themedreview/living-with-covid19-second-review/


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 Post subject: Re: Long Covid.
 Post Posted: Wed Mar 17, 2021 7:09 pm 
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sboots wrote:
jaylach wrote:
If I understand right the Pfizer vaccine just pumps you full of already formed anti-bodies. This does not "teach" the body to produce anti-bodies on it's own.


Not true, Jay -- https://www.acsh.org/news/2020/10/21/how-pfizers-rna-vaccine-works-15104
Your body produces the antibodies, but with the mRNA vaccines the trigger for your body to produce them is different.

-steve


I just want to expand on the link that Steve provided so we can all be absolutely clear about this...

Understanding mRNA COVID-19 Vaccines
https://www.cdc.gov/coronavirus/2019-ncov/vaccines/different-vaccines/mrna.html

Hands up, i have to admit i was somewhat scepticle myself when i first heard about mRNA technology, but the more i read and learned the more i began to realise i was wrong.


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 Post subject: Re: Long Covid.
 Post Posted: Wed Mar 17, 2021 7:28 pm 
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This can be considered nothing but good news as to vaccines. Don't know about other vaccine versions but the Moderna vaccine seems to advance protection to an unborn child. This is still early and research is not yet totally conclusive but a woman got the Moderna vaccine and three weeks later gave birth. The child tested as to having COVID anti-bodies.

https://www.cbsnews.com/news/first-baby-born-covid-19-antibodies-florida-mom-moderna-vaccine/

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 Post subject: Re: Long Covid.
 Post Posted: Wed Mar 17, 2021 7:57 pm 
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jaylach wrote:
This can be considered nothing but good news as to vaccines...

Everything about the vaccines, no matter the brand, appears to be good news so far.

As with everything Covid-19 nothing is certain until it's proven to be certain, the article you linked is a preprint that can be found here:
https://www.medrxiv.org/content/10.1101/2021.02.03.21250579v1

Until it's peer reviewed it might be possible that the mother was asymptomatic during pregnancy so that might explain how the unborn child got the antibodies?

I don't know enough about the subject to have an opinion one way or another but i do hope the supposition is correct.


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 Post subject: Re: Long Covid.
 Post Posted: Sat Mar 20, 2021 6:05 pm 
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Can vaccines help long-haul COVID-19 sufferers?
https://www.cbsnews.com/news/covid-19-long-haulers-vaccine/


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 Post subject: Re: Long Covid.
 Post Posted: Tue Mar 23, 2021 5:56 pm 
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This might be disturbing viewing for some so please be aware of that before clicking on any of the links below.

There is nothing gory about them but still it isn't pleasent to watch, let alone live with.

It was published today by The Guardian newspaper in the UK.

The first link is from The Guardian website (may be paywalled?), the second is the same video uploaded by University College London Hospital onto YouTube (so hopefully is viewable worldwide?).

Inside a long Covid clinic: ’I look normal, but my body is breaking down’ – video
https://www.theguardian.com/society/video/2021/mar/23/inside-a-long-covid-clinic-i-look-normal-but-my-body-is-breaking-down-video

Inside a long Covid clinic: ’I look normal, but my body is breaking down’
https://youtu.be/YsJr2u3V83U

Quote:
The Guardian has had unique access to University College London hospital's long Covid clinic where patients are treated for a multitude of different chronic symptoms ranging from ongoing fatigue to issues with taste and smell. Some patients have been suffering for months, and the toll on their mental and physical health has been significant. It’s been a year since the first UK lockdown and the NHS has warned it may have to treat a million patients for a condition we now know as long Covid


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 Post subject: Re: Long Covid.
 Post Posted: Thu Mar 25, 2021 7:55 pm 
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This article i found interesting, not because it's anything ground-breaking for me, more that it's relevant to where i was and am today:

Vaccines are making some long Covid sufferers feel better:
https://www.wired.co.uk/article/covid-19-long-haulers-vaccine


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 Post subject: Re: Long Covid.
 Post Posted: Tue Apr 06, 2021 9:26 pm 
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UK's long Covid patients facing postcode lottery for support

Survey finds 90% of those with long-term symptoms have not been able to get clinical help

Quote:
Long Covid patients have voiced growing frustration at a “postcode lottery” in clinical support for debilitating symptoms, with some areas of the UK offering no specialist clinics more than a year after coronavirus took hold.

Other sufferers said they were disappointed by long Covid clinics investigating certain symptoms only, with no comprehensive treatment plan.

Official figures suggest there are almost 700,000 Britons with Covid symptoms lasting over three months. In October, NHS England announced more than £10m for a network of clinics bringing together doctors, nurses, therapists and other NHS staff to conduct physical and psychological assessments and recommend treatments for long Covid patients.

Additional local funding would also be available to help establish a clinic in every area, the NHS England chief executive, Simon Stevens, said. By December, 69 clinics had been set up in England with a further 12 sites earmarked to launch in January.

But Louise Barnes, founder of the Post Acute Covid Syndrome 19 (Pacs19) patient advocacy group, said a survey of 200 British members revealed about 90% had not been able to access a clinic because there wasn’t one available, their GP could not refer them or they were declined without explanation. Others were disappointed by the type of services on offer.

Barnes said: “Patients in the UK have waited going on a year to get support for the multitude of symptoms they’ve been experiencing. To finally think you are going to get referred to a clinic but your GP tells you they don’t have any information, or you get there to find it’s a ‘respiratory-only clinic’ or only staffed by physiotherapists leaves them feeling despondent. For the most part, sadly, patients are coming away massively feeling let down and with no viable treatment plan offered – even a rudimentary one, whilst a treatment is found.

Source and more: https://www.theguardian.com/society/2021/apr/06/uk-long-covid-patients-facing-postcode-lottery-for-support

I am really torn when i read the article above, i get that this is a novel virus and the medical profession is playing cathup but the officiating bodies really need to understand that for many people this is no longer novel because they have been living with it for up to (and in some cases for more than) a year, to pretend, or at least appear to pretend, that they are supplying a level of care is akin to denying what people are living with.

cf. For more up to date numbers see:
Prevalence of ongoing symptoms following coronavirus (COVID-19) infection in the UK: 1 April 2021
https://www.ons.gov.uk/peoplepopulationandcommunity/healthandsocialcare/conditionsanddiseases/bulletins/prevalenceofongoingsymptomsfollowingcoronaviruscovid19infectionintheuk/1april2021

I am lost for words at the following from The Guardian artice above:
Quote:
A Scottish government spokesperson said: “Our approach is for people to have access to the support they need in a setting that is as close to their home as possible … [supported by] GPs, wider primary care teams and community based rehabilitation services.”


The quote doesn't say who the spokesperson is, likely for good reason... "as close to their home as possible", they are having a laugh!!!


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