Series of Guardian articles on Long Covid, October 2022

SNT Gatchaman · Oct 15, 2022

This post has been copied and some others have been moved from the Long covid in the media thread.
The Guardian link to the series of articles is here:
https://www.theguardian.com/society/series/living-with-long-covid
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WHO chief urges immediate action to tackle ‘devastating’ long Covid (Guardian)

Long Covid is “devastating” the lives and livelihoods of tens of millions of people, and wreaking havoc on health systems and economies, the head of the World Health Organization (WHO) has warned as he urged countries to launch “immediate” and “sustained” efforts to tackle the “very serious” crisis.
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Levant · Oct 12, 2022

Also from The Guardian, requests for write-ins from sufferers on life with long covid:
https://www.theguardian.com/society...ng-with-long-covid?CMP=Share_AndroidApp_Other

Jonathan Edwards · Oct 13, 2022

https://www.theguardian.com/society/2022/oct/13/long-covid-patient-testimony

Not bad. Discusses the issue of urgency for trials.
Unfortunately, the key expert seems to be a young research fellow at Oxford who may not have the best person to give a meaningful overview - but then it could be worse.

BrightCandle · Oct 13, 2022

I quite like they led with a 10 year old kid. After so much "kids don't get Covid, they don't get Long Covid" this just exposes the lie right up front alongside some enormous numbers for those already suffering from this condition. 1 in 14 children are being ruined by this thing that is very similar to the adult rate.

“The doctor didn’t believe it was long Covid.... it must be all in your head.”” - Completely normal, you might if your lucky get recognition in a decade which is pretty normal for ME/CFS after your 30th doctor.

This whole thing is a damning portrayal of the health care system and there are bunch of real head bangers in there from doctors including some nice exercise therapy and Psychotherapy to get him back into school. We are doomed and that kids life will be ruined by these doctors unless he recovers naturally.

Trish · Oct 13, 2022

There is a series of Guardian articles about long Covid listed here:
https://www.theguardian.com/society/series/living-with-long-covid

13th February:
The great gaslighting: how Covid longhaulers are still fighting for recognition

12th October:
The astounding impact and reach of long Covid, in numbers and charts

Are you living with long Covid? We want to hear from you

WHO chief urges immediate action to tackle ‘devastating’ long Covid

The data is clear: long Covid is devastating people’s lives and livelihoods
Tedros Adhanom Ghebreyesus

13th October
‘It felt like I was never going to get better’: patients navigating long Covid
(see first posts on this thread)

Solstice · Oct 13, 2022

BrightCandle said: ↑

I quite like they led with a 10 year old kid. After so much "kids don't get Covid, they don't get Long Covid" this just exposes the lie right up front alongside some enormous numbers for those already suffering from this condition. 1 in 14 children are being ruined by this thing that is very similar to the adult rate.

“The doctor didn’t believe it was long Covid.... it must be all in your head.”” - Completely normal, you might if your lucky get recognition in a decade which is pretty normal for ME/CFS after your 30th doctor.

This whole thing is a damning portrayal of the health care system and there are bunch of real head bangers in there from doctors including some nice exercise therapy and Psychotherapy to get him back into school. We are doomed and that kids life will be ruined by these doctors unless he recovers naturally.
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My brothers kids go to a school where there's 30 kids a class. Imagine 2 out of each class of kids coming down with Long Covid.... This should be visible and palpable for anyone that's even remotely around those kids. Teachers and classmates should be up in arms, parents should be kicking up a huge fuss.

Within my family 2 persons came down with Long Covid and have recovered somewhat, but the jaded reaction to it all is just, well we know what it is like. I'm glad of being able to offer at least some support in that matter, but it shouldn't be necessary. This whole paradigm of fobbing people off when they don't have something easily treatable needs to be kicked on it's arse.

John Mac · Oct 14, 2022

When doctors become long Covid patients – and still aren’t believed
Our instinct now is to ignore and deny what we can’t understand or help. I suspect such a reaction stems from fear

I first saw my long Covid patients in April 2020. I tried to reassure them as best as I could that their myriad of symptoms would fade with time. “For some people, it takes a bit longer,” I’d say, not knowing that what ailed them was not an acute phase infection, but their bodies’ reaction to it.

Since then, I’ve seen countless long Covid patients in the ER. Some of them are young and at the peak of their health – former cyclists and marathoners. Others are frail and have comorbidities that make coping particularly difficult. Some are well-educated professionals who understand the potential pathophysiology of their ailments better than I do. Some are anti-vaxxers fearful of the healthcare system without being able to articulate why.

And yet I see one commonality: the look of complete bewilderment in their eyes as they ask: “What’s happening to me? Why am I not the same any more?”

The turning point for me came last year, when a co-worker developed memory problems following a Covid infection. At one point, her symptoms became so severe that she could no longer find her way home. After each neurologist appointment, she’d recount her experience of being dismissed. “They think I’m depressed. They say nothing is wrong. Maybe they’re right. Maybe I’m just crazy.”

In the years I’ve known her, she’s never once struck me as someone who was not fully in charge of her emotions or faculties, and I told her so.

Unfortunately, many others now find themselves in similar predicaments – and they’re learning the medical community does not spare its skepticism, even towards its own.
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https://www.theguardian.com/society/2022/oct/13/long-covid-patients-not-believed-doctors

John Mac · Oct 15, 2022

Long Covid is said to affect white middle-aged women more – but data suggests otherwise

Race, wealth and free time dictate who gets to be treated for long Covid – making the condition ‘the new pandemic’

Nisha Viswanathan is a physician at the University of California, Los Angeles (UCLA), where she also directs the institution’s long Covid program. Her work involves both researching the mounting chronic health crisis, as well as treating patients suffering from its symptoms.

But, she says, the divide between what her research shows and who she sees in her clinic is alarming.
A recent study by Viswanathan and her UCLA colleagues followed Covid patients for up to 90 days after a Covid infection and found that long Covid symptoms cut across demographic groups, with only about a third of those with long Covid identifying as white. In a clinical setting, however, Viswanathan says roughly 80% of the patients seeking treatment for long Covid are white.

“They are disproportionately affluent white individuals,” said Viswanathan of her patients. It’s an equity gap that clinicians across the country are seeing and, Viswanathan says, points to potentially enormous swaths of underserved populations. “Many people may be living with long Covid and not seeking treatment because the treatment themselves can be labor, time and money intensive.”

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https://www.theguardian.com/society/2022/oct/14/long-covid-care-access

Kitty · Oct 15, 2022

I am severely dischuffed. I knew this wasn't going to go well, and it hasn't.

My letter to The Guardian this morning:

Dear Editor,

Re: “A young life, interrupted”, 15/10/2022
https://www.theguardian.com/society/2022/oct/15/long-covid-ravi-veriah-jacques-hope-identity

I was pleased to see your series on long Covid, and began reading Ravi Veriah Jacques’s story with interest. Until I reached “Long Covid shares traits with ME/CFS, as chronic fatigue is often abbreviated”.

No.

No.

No.

“Chronic fatigue” is what ill-informed, slapdash journalists call ME/CFS.

Chronic fatigue is not an illness, it’s a symptom. A symptom of any one of dozens of diseases. Like headaches. Or rashes.

Imagine you have suffered from this cruel, wasteful illness for almost 50 years. A life blighted by extreme pain, fatigue, and cognitive dysfunction. Potential never achieved; gaslit by everyone from medicine to the media; a constant battle to survive on little money and no help. Can you begin to imagine how insulting it is to read this?

Did you even consider the potential effect on Ravi and his father?

If you can’t do this properly, for God’s sake, please leave it alone.
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I doubt it'll have much effect, but I feel better.

RedFox · Oct 15, 2022

That's dramatically different from how ME was presented back in the day.

ME: "It's just a condition suffered by a bunch of upper-class housewives"

Long Covid: "Anyone can get it, regardless of race or social class, but mostly white and upper-class are coming to see us. All the people who can't get to a doctor are being neglected."

Sly Saint · Oct 15, 2022

another article in guardian on long covid
https://www.theguardian.com/society/2022/oct/15/long-covid-ravi-veriah-jacques-hope-identity

with this in the middle;

Ravi’s father and the no-nonsense former editor of the London-based political magazine Marxism Today (he also has contributed for the Guardian on a regular basis), has suffered throughout life from serious episodes of chronic fatigue syndrome that could last months.

Long Covid shares traits with ME/CFS, as chronic fatigue is often abbreviated, a disease which can also be triggered by a viral infection. Martin worried Ravi might have inherited the same risk of fatigue, just as the two share the same color eyes and laugh.
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RedFox · Oct 15, 2022

They're so close though! Using the term ME/CFS, then referring to it as a disease. "All publicity is good publicity." We should be grateful this and advocate for better.

rvallee · Oct 15, 2022

Hopefully it will be corrected, lots of comments on Twitter and the interviewed, Ravi, also pitched in to notify the author. Of course it's usually editors who do this...

Kitty · Oct 15, 2022

rvallee said: ↑

the interviewed, Ravi, also pitched in to notify the author
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Good, I'm glad to hear it. Normally, when you research a highly politicised topic like this, one of your objectives is to make a list of What Not To Say Under Any Circumstances. This would probably make the top three.

dratalanta · Oct 16, 2022

I’m not sure I knew before reading that piece that Martin Jacques has ME.

Those older than me will remember better than I do the vicious ideological warfare in the nineties between Jacques’ Marxism Today (journal of the CPGB) and the RCP’s Living Marxism. I wonder if this personal connection contributed to the views on ME held by certain members of the RCP circle.

Former RCP members, as George Monbiot and others have pointed out, have been highly influential at the Science Media Centre.

Kitty · Oct 16, 2022

dratalanta said: ↑

Those older than me will remember better than I do the vicious ideological warfare in the nineties between Jacques’ Marxism Today (journal of the CPGB) and the RCP’s Living Marxism. I wonder if this personal connection contributed to the views on ME held by certain members of the RCP circle.
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I don't, but it's an interesting thought. I hadn't heard of Martin Jacques except through this article.

I had vaguely heard of both of those publications, but assumed they were historic titles that largely predated my coming of political age in the mid-70s. I was only involved in environmental, trade union, antiracist, and anti-apartheid campaigns, though—all in an industrial context, the intellectual stuff was for university types. Ignorance is vast but possibly not surprising!

Andy · Oct 17, 2022

The ME Association writes to The Guardian about their 'Living with Long Covid' series:

"Dear Bianca
Re: https://www.theguardian.com/.../long-covid-future...

I have just been reading your article in the Guardian with all the comments from ‘experts’ who are all perplexed by both the cause and management of Long Covid

I was very surprised and disappointed to see that not one of them appeared to acknowledge and fully understand the very important clinical and pathological overlaps with ME/CFS

The ME Association has been providing information and support to people with Long Covid dating right back to May 2020 - when it became apparent that significant numbers of people were not recovering from COVID-19 and developing a post-covid syndrome that included symptoms that are the same as ME/CFS. And in some cases people with Long Covid were meeting diagnostic criteria for ME/CFS.

Since then we have continued to cover all aspects of Long Covid on our social media where we regularly report on research and treatment developments.

We are very happy for people with Long Covid to join the ME patient community and many now take part in our discussions on MEA Facebook.

We have also been critical of the way in which many clinicians and researchers have failed to acknowledge the important clinical and causative overlaps between Long Covid and ME/CFS and the failure to realise that what we know about the cause and management of of ME/CFS - especially activity and energy management - could help people with Long Covid.

MEA GUIDE TO LONG COVID AND ME/CFS
This is our new guide to the clinical and pathological overlaps between ME/CFS and Long Covid

This guide also explains how we can help people with Long Covid who have ME/CFS like symptoms - debilitating fatigue and post exertional malaise, cognitive dysfunction, unrefreshing sleep, orthostatic intolerance, PoTS etc

Free MEA website download:
https://meassociation.org.uk/.../new-free-booklet-long.../

I hope you will take this information into account when you next cover Long Covid

Dr Charles Shepherd
Hon Medical Adviser, MEA"

https://www.facebook.com/meassociat...m7b7W6V7xmxdeVMgc7wrzJX8su84uNiTH5NnEPn3JPstl

John Mac · Oct 17, 2022

Can long Covid research unlock other great medical mysteries of our time?

Attention and funding for research into mononucleosis, HIV, Lyme, Ebola, Sars and other infections have historically been limited – but long Covid changed that

Chronic fatigue syndrome and long Covid are both part of a much larger group of illnesses that arise after a viral, or sometimes bacterial, infection. Mononucleosis, HIV, Lyme, Ebola, Sars and many other infections can also have similarly prolonged effects. But experts say attention, funding and research into these post-infectious illnesses has historically been limited, and patients have often had their symptoms minimized or dismissed.

Long Covid has changed that. While millions of people across the world were already living with post-viral illnesses before the pandemic, a 2021 study published by the American Medical Association found that more than half of Covid patients reported symptoms lasting longer than six months. That means that the pool of potential post-viral illness patients has probably grown many times over during the pandemic. The surge has left scientists scrambling to find answers and unlocking the mysteries of persistent Covid, they say, could translate to further understanding of other post-infectious afflictions as well.

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https://www.theguardian.com/society/2022/oct/17/long-covid-research-unlock-medical-mysteries

RedFox · Oct 17, 2022

Here's another article in the series, a comic about a woman who went from being highly athletic to being disabled by POTS.
I was an athlete – now I’m 30 and in a wheelchair thanks to long Covid

Laurie P · Oct 17, 2022

Dr Anthony Fauci: long Covid is an ‘insidious’ public health emergency

https://www.theguardian.com/society...ong-covid-risk-emergency-response-coronavirus

Dr Anthony Fauci, America’s top infectious disease expert, has warned against prematurely declaring victory over the pandemic, not only due to short-term needs but because long Covid represents an “insidious” public health emergency for millions of people.

In an interview with the Guardian, Fauci urged US Congress to avoid complacency and resume funding to combat the virus as well as long Covid, a chronic and prolonged illness that continues to elude scientists and healthcare providers.

“It’s a very insidious beneath-the-radar-screen public health emergency,” Fauci said via Zoom. “It isn’t that you have people who are hospitalized or dying, but their function is being considerably impaired. For reasons that are obvious, that doesn’t attract as much attention as a death rate.”
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“One of the unfortunate, challenging and frustrating parts about it is that there are so many elements of it that don’t fit into a known or recognizable pathogenic process,” Fauci said. If a person is severely fatigued and unable to work, for example, there is no laboratory test, X-ray, CT scan or MRI that points to something and says: “There’s inflammation here and that’s the reason for the fatigue.”

Fauci continued: “We don’t know what the mechanisms of brain fog are. How come someone who is very sharp intellectually and very energetic all of a sudden can’t concentrate for more than half an hour on anything? And how come people who are polished athletes no longer have any exercise tolerance?”
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Fauci added: “The other interesting thing is that it also is more prominent in people who have underlying psychological issues: depression and things like that. The one thing you don’t want to fall into the trap of saying is well, it’s all psychological, because it’s not, it’s real.”

Less predictably, several studies indicate that long Covid is more common among women than men. Noting that diseases such as lupus have a similar gender bias, Fauci speculates that some of aspect of dysregulation of the immune system is more common in women than in men.
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Early in the pandemic, the view that viruses don’t discriminate was quickly eviscerated by daily reminders that societies do. A recent CDC survey found that 38% of Black people, 37% of Hispanic or Latino people and 20% of white people with long Covid also reported significant limitations on their activities.
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The social safety net could be crucial for disadvantaged communities. Long Covid is categorised as a disability, but the government’s social security disability benefits are generally paid to people who can demonstrate they are unable to work for a year or more. In the case of long Covid, that could be hard to prove.

Fauci said: “The non-specificity and the vagueness of this is its own worst enemy because you can’t pin down what’s wrong or it takes a while to document how long it lasts. If one of the conditions for disability is that you have to have a condition last for a year, what is the parameter that you’re going to use to indicate that it’s lasted a year? If there’s no lab test, if it’s only subjective feeling - ‘well, I’ve been incapacitatingly fatigued for a year’ – how do you prove that?”
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Series of Guardian articles on Long Covid, October 2022

SNT Gatchaman Senior Member (Voting Rights)

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Series of Guardian articles on Long Covid, October 2022

SNT Gatchaman Senior Member (Voting Rights)

Levant Established Member (Voting Rights)

Jonathan Edwards Senior Member (Voting Rights)

BrightCandle Senior Member (Voting Rights)

Trish Moderator Staff Member

Solstice Senior Member (Voting Rights)

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