Long Covid in the media and social media 2023

[Dx Revision Watch]

For the record, Dr Tedros Adhanom Ghebreyesus on Twitter on August 22, 2020:

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If my memory serves, this was the Twitter thread from three years ago, in which Janet Dafoe had offered to provide the WHO with research studies and discusions. I had also asked for the expediting of a coding issue within this thread. Ghebreyesus ignored my request and I don't think Janet heard anything at all from him or his WHO colleagues, either.

 

[rvallee]

For the record, Dr Tedros Adhanom Ghebreyesus on Twitter on August 22, 2020:

---------------------------------------------------------------------------------------

If my memory serves, this was the Twitter thread from three years ago, in which Janet Dafoe had offered to provide the WHO with research studies and discusions. I had also asked for the expediting of a coding issue within this thread. Ghebreyesus ignored my request and I don't think Janet heard anything at all from him or his WHO colleagues, either.

There was a huge drumbeat from the start to fully separate anything LC with ME/CFS or any existing known illness. It probably ended this very quickly, with lots of very angry experts saying they would have nothing to do with this. Although ironically, the only people who did accept that overlap was the quacks, but for the wrong reasons. Strange world.

It's still there, but the barrier has thinned out a lot. The overlap will be impossible to dismiss over time, it's just a matter of time and meanwhile it's worth taking shots at it, making it visible that all of that this could have been done right from the start, and it may create more urgency to act based on that.

Having so publicly and completely missed what was so obvious that huge numbers of people with zero medical training could see it like the damn Sun at high noon looks really bad, or at least it will eventually. It's a unique failure for an entire profession to be outpredicted so accurately this way. We have to embarrass the hell out of them for it.

 

[Sly Saint]

Long Covid: Plugging the gaps
Amy Somerton and Holly Jeffrey – Assistant Psychologists with the Humber and North Yorkshire Resilience Hub – look to continue psychological care beyond the pandemic.

As assistant psychologists working in the Humber and North Yorkshire (HNY) Resilience Hub, we see that the impact of Long-Covid persists. We believe that psychological support for those with Long-Covid is imperative and should continue. Long-Covid must not become background noise, lost in messages that ‘the pandemic is over’.

Why psychology?
Long-Covid has entered the realms of pre-established chronic illness without a biological marker (although potential candidates have been identified). Fibromyalgia, chronic fatigue syndrome (CFS) and myalgic encephalomyelitis (ME) have long suffered from a lack of societal understanding leading to a sense of loneliness and isolation amongst these communities (Boulazreg & Rokach, 2020). This has been reflected in the stories of individuals who have accessed our service. Whether it be friends, family members or workplaces, Long-Covid sufferers are faced with a lack of understanding, social-isolation and even disbelief.

So, when met with a misunderstood illness which worsens quality of life, leaves you fatigued and strips you of your identity, how do you cope? Understandably, we look for a cure. Can rheumatology help? How about cardiology? Immunology? ENT? Somebody? Individuals with Long-Covid are shifted and shunted around departments, often with no concrete answers.

We witnessed the medical-oriented approach to Long-COVID at the recent National Health Service England Long-Covid National Workshop in Birmingham. Whilst psychological support was alluded to by some speakers, none of the presentations had this as their focus. This felt symbolic of the lip-service which is often paid to psychological support.

Psychological model of illness
The psychological model of illness perception proposed by Leventhal et al. (2003) provides a schema through which individuals can come to terms with and process the unpredictable and turbulent nature of Long-Covid. They encourage us to consider five domains: identity, cause, timeline, consequences, control/cure.

Learning as we go
Since the inception of the HNY Resilience Hub in February 2021, our team has co-produced an extensive Long-Covid support pathway. This pathway has been designed to plug the gaps.

Its development has been informed by individuals with Long-Covid, combined with psychological theory. Comprising a peer-support group, key workers, a wellness recovery action plan, neurocognitive screening and rehabilitation, as well as an Acceptance and Commitment Therapy (ACT) for Long-Covid group.

It has been a privilege to develop a pathway which has been psychologically informed and evidence-based but also needs-driven.

Long Covid: Plugging the gaps | BPS

 

[rvallee]

Long Covid: Plugging the gaps
Amy Somerton and Holly Jeffrey – Assistant Psychologists with the Humber and North Yorkshire Resilience Hub – look to continue psychological care beyond the pandemic.





Long Covid: Plugging the gaps | BPS

The problem is not social understanding. It's medical understanding. Specifically because of the psychology-driven belief system where not understood = malingering. This entire discipline completely absolves themselves of the major role they play in continuing this perception, one that is taught to doctors. It's not random, and not some social or cultural oddity. It's a purposeful ideology.

All the money wasted on this would be far more beneficial if it was put on actually trying to solve them and build the medical understanding that will make the social misunderstanding that it causes disappear entirely. It's medicine that must look for a cure, and they aren't doing it exactly because this here is presented as not only good enough, but a full solution.

This is exactly like refusing to address poverty and hunger while putting money on therapy to deal with poverty and hunger. It's completely misplaced and does not serve the needs of those who are suffering.

 

[Sly Saint]

that was the emoji I was looking for.
It's like sending psychotherapists to the frontline in wartime to 'help' those suffering.
And in this instance they are 'assistant psychologists'; so what, we're running out of actual psychologists now?
Social care is almost non existant now and we have 'assistant psychologists'?

 

[SNT Gatchaman]

The Boston Globe: Actually, we can’t yet ‘ignore COVID’

Responses from readers to an article written by Dr Ashish Jha and which was titled “With a few basic steps, most of us can finally ignore COVID”

Archived here. Eg:

Long COVID has destroyed my life

I would love nothing more than to “finally ignore COVID,” as the headline to Dr. Ashish Jha’s July 31 op-ed reads (“With a few basic steps, most of us can finally ignore COVID”). As a healthy, vaccinated, and recently boosted 35-year-old, I did what he said: I ignored COVID-19 on a weekend trip with friends in September 2022. But the infection I got as a result has all but destroyed my life.

A week after my infection, I began to experience intense fatigue, overwhelming headaches, and cognitive challenges that continue to this day. These symptoms are debilitating: I can no longer work, socialize, or travel. My finances are dire. And if I am unable to avoid another infection, my condition may deteriorate even further.

Jha wrote of long COVID “treatments” being promising. Perhaps he could clarify what treatments he is referring to, because my doctors say that there are no approved treatments for long COVID.

 

[Amw66]

CDC updating info with info which was relevent in 2020....

 

[Dakota15]

Just sharing this S/O in Mass ME's August Newsletter today

 

[Trish]

Posts about a Gez Medinger interview with Dr Jenna Tosto-Mancuso about Autonomic rehab. have been moved to:
USA: Mount Sinai PACS clinic and Dr Putrino

 

[Sly Saint]

I have long covid. For the millions like me, the pandemic isn’t over.

In 2019, I was in high gear. I had two young children, a busy social life, a book tour and a novel in progress. I spent my days racing between airports, juggling to-do lists and child care. Yes, I felt tired, but I come from a family of high-energy women. I was proud to be keeping the sacred flame of Productivity burning.

Then I got covid.

I didn’t know it was covid at the time. This was early February 2020, before the government was acknowledging SARS-CoV-2’s spread in the United States.

In the weeks after infection, my body went haywire. My ears rang. My heart would start galloping at random times. I developed violent new food allergies overnight. When I walked upstairs, I gasped alarmingly.

I reached out to doctors. One told me I was “deconditioned” and needed to exercise more. But my usual jog left me doubled over, and when I tried to lift weights, I ended up in the ER with chest pains and tachycardia. My tests were normal, which alarmed me further. How could they be normal? Every morning, I woke breathless, leaden, utterly depleted.

Worst of all, I couldn’t concentrate enough to compose sentences. Writing had been my haven since I was 6. Now, it was my family’s livelihood. I kept looking through my pre-covid novel drafts, desperately trying to prod my sticky, limp brain forward. But I was too tired to answer email, let alone grapple with my book.

For me, one of the worst was post-exertional malaise (PEM), a Victorian-sounding name for a very real and debilitating condition in which exertion causes your body to crash. In my new post-covid life, exertion could include washing dishes, carrying my children, even just talking with too much animation. Whenever I exceeded my invisible allowance, I would pay for it with hours, or days, of migraines and misery.

https://www.washingtonpost.com/opinions/2023/08/09/madeline-miller-long-covid-post-pandemic/

 

[rvallee]

At least, a main focus of Long Covid is really PEM. It makes the fanatical crusade of the ideologues so much more damning, especially with their bleating and whining about the NICE guidelines and backroom manipulations. It is THE feature of our illness. And they focused most of their career and efforts erasing it, simply cannot accept that what they don't understand still exists.

ME may not be getting the attention it deserves out of Long Covid, but PEM is. It's impossible to put it back in the box. There is still heavy resistance because that's not how medicine works, they don't know what to do with symptoms and until the physiology of PEM is understood there is little that can happen.

But at least the efforts can focus on the most important aspect. It's a damn shame they aren't yet, I don't think there's anything at all about it in the RECOVER initiative. But we have crossed the damn Rubicon. The rest of the journey ahead is long but there is no turning back from it.

 

[Amw66]

I have long covid. For the millions like me, the pandemic isn’t over.


https://www.washingtonpost.com/opinions/2023/08/09/madeline-miller-long-covid-post-pandemic/

The audio of Madeline Miller reading the article is excellent

 

[Tom Kindlon]

Long covid an 'ongoing and active issue' in Ireland with 200 symptoms

https://www.irishexaminer.com/news/spotlight/arid-41200315.html

I think Prof Linnane gives a likely overly positive view of outcomes. He does have a conflict of interest. Also people with #LongCovid could stop going as they don’t feel it’s helping much & don’t want to spend any more effort/money

No mention of ME or #CFS.

 

[Sly Saint]

Opinion | The next Covid surge is here. We can't ignore it.

“Covid’s back on the board,” a colleague said to me recently as he signed out at the end of his emergency room shift and I signed in at the beginning of mine.

Further, long Covid is no joke. Every time I see a patient with long Covid, like the one I cared for the other day, I am struck by how it stubbornly challenges any comforting notions about the disease itself. We’d like to think, for example, that because acute Covid is often (though not universally) mild, it’s nothing to worry about. But long Covid most often occurs after mild disease.

Some people are convinced that Covid “only” matters if the person who gets it is elderly, immune compromised, chronically ill or disabled, and the eagerness of so many people to embrace this line of thinking exposes how quick we are to devalue the lives of people in those categories. But long Covid also appears in young, previously healthy and highly active people, including children.

Yes, many people recover from long Covid. And also, some don’t. The waiting list for my health system’s long-Covid clinic remains full, and those who are seen there have severe, debilitating illness, the defining feature of which is a disabling and devastating fatigue.

Every time I see a patient with long Covid, I am struck by how it stubbornly challenges any comforting notions about the disease itself.

As we publicly cheered the end of the pandemic, there have been few celebratory laps for those affected by long Covid. We still don’t understand the underpinnings of the disease, the timeline of symptoms or improvement for those with severe disease, or the impact of successive waves of acute Covid illness on those with chronic Covid illness.

The Office of Long Covid Research and Practice announced a year ago only launched last week. So too did the first trials of therapeutics to treat long Covid. Like post-viral myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) before it, the existence of long Covid is so inconvenient that it is standard to ignore and dismiss it. But our journey with long Covid is just beginning.

https://www.msnbc.com/opinion/msnbc-opinion/long-covid-surge-2023-rcna97597

 

[Dakota15]

Obviously very very trivial again but I did see that Dr. Marrazzo (new NIAID Director) “liked” this below yesterday on Twitter from Madeline Miller who wrote the Washington Post feature on LC yesterday.

 

[Hoopoe]

A look at her twitter feed shows attention to LC.

 

[Dakota15]

I sent the STAT News reporting to her yesterday, about NIH's underwhelming RECOVER trials.

She replied back "Thank you for the outreach. Really hope we can make some progress ASAP as I know many are suffering." Just sharing for visibility.

 

[Sly Saint]

Cause of long COVID remains most troublesome question about the syndrome
Harvard Medical School

What causes long COVID? More than three years after the start of the pandemic, this remains the most bedeviling question about a mystifying syndrome estimated to affect some 65 million people globally—an epidemic in its own right with no clear end in sight.

Long COVID presents with remarkable variation across individuals. It can involve different organs and organ systems and different degrees of severity. One thing is becoming increasingly clear: the condition is likely to have long-lasting physiologic, social, and economic consequences, ripple effects of the initial disaster.

By some accounts, more than 1 million people in the United States alone may be pushed out of the labor force because of long COVID, causing both individual financial devastation and hurting the economy as a whole. This calculus does not factor in the sheer human toll of the disease.

Although infection with SARS-CoV-2 is the known spark plug that ignites long COVID, no one yet knows how this syndrome arises at the cellular and molecular levels. The answer holds the key to solving the long COVID puzzle. It may also help scientists understand syndromes that resemble long COVID and can develop in the wake of other acute infections, such as Lyme disease or herpes zoster.

Without a clear understanding of the driving mechanism—the fuel causing and sustaining the fire—long COVID treatment will remain confined to alleviating symptoms rather than resolving the underlying problem.

To be sure, in the last three years, researchers have gleaned some important insights about long COVID. They have defined the clinical syndrome and the organ systems involved; they have characterized how often it occurs and how widespread it is; and they have identified some of the key risk factors.

But for now, researchers are still circling the periphery of the terra incognita that is the cause of long COVID.

With accumulating evidence, several hypotheses have emerged that are bringing scientists closer the answer.

https://medicalxpress.com/news/2023-08-covid-troublesome-syndrome.html

 

[Amw66]

Video from Germany with subtitles
Video

For discussion go to News from Germany where this is also posted.

 

[rvallee]

Ror Preston is the lead data scientist at Visible Health.

Very cool.

My mum, who is a doc, got an invite for a web seminar on #LongCovid from the Royal Society of Medicine

The paper they've linked to as an explainer is the @patientled paper by @ahandvanish and co. Patient led work is getting out there

Simon Wessely was president of the RSM a few years ago, which later awarded him for his career's work, including his ideological dedication to suppress the reality of ME/CFS and for pushing the gaslighting behavioral model of CFS. He remains one of the leading figures standing against Long Covid research and anything good for the millions suffering from LC will be terrible for his reputation.

For sure there will be arm-twisting happening behind the scenes.