Long Covid in the media and social media 2023

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The Long Covid Sessions Podcast - Episode 53: Prof. Jack Lambert – LDN and the Lambert protocol

Pretty good run-through on the biology of LC, as much as it is and isn't known, recognising conjecture. Recording the following quotes at 45:17 —

"You can't exercise and make yourself better: graded exercise, and that's still being recommended — disaster. People are still recommending CBT therapy. It's not a psychiatric problem. I think the people who are recommending that should get CBT therapy themselves. It's criminal the way that some health professionals are discounting the issues of Long Covid and putting them in a psychiatric basket."
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Then responding to 'a lot of funding is going to graded exercise and CBT' —

"I think my clinic being closed down in Ireland is an example of hidden politics that I don't understand. But it's not really hurting me - it's hurting patients, which is tragic. Because I see patients every day who have been failed by the system and the system is standing up saying 'we're great and we're doing everything right' and they're not."
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'I've been blown up, stabbed and shot at... but long Covid is worse'

EXCLUSIVE: Before contracting the virus, Antony was a war correspondent travelling around the world, but long Covid means he and his wife have lost both their careers and their physical health.

A former war correspondent has detailed the horrors of living with long Covid, which he says "stole everything" he and his wife "hold dear". Former journalist Antony Loveless, 55, described his pain and suffering during his ongoing journey with long Covid in an exclusive chat with Express.co.uk.

He said because he and his wife, Claire Hooper, 53, were so physically fit before the pandemic they thought they would “be a bit ill for a week and then we’ll bounce back”.

However, this wasn’t the case, and the virus hit them hard. Antony said their symptoms were so bad that “we thought we wouldn’t wake up in the morning. We thought we’d die in the night”.

The Office for National Statistics estimates there are around two million people in the UK suffering from long Covid as a result of the pandemic. While some of these patients can continue to work, others have lost their careers and their lives.

https://www.express.co.uk/news/uk/1750485/long-covid-sufferer-symptoms


 
Unfortunately, this article is behind a paywall.

Ex-McKinsey Worker With Long Covid Sues Unum for Disability Pay
A former McKinsey & Co. consultant sued Unum Life Insurance Co. of America for disability benefits, saying the severe fatigue and brain fog she’s experiencing after a “relatively mild” bout of Covid-19 prevents her from working.

The consultant says that nearly two years after her infection, she continues to need more than 12 hours of sleep per night and remains “severely limited in terms of her daily energy budget for either physical or mental tasks.” She says Unum initially approved her for disability benefits but improperly terminated those benefits in 2022, despite the unanimous agreement of her treating physicians that ...
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https://news.bloomberglaw.com/emplo...-with-long-covid-sues-unum-for-disability-pay


Court Dockets: https://www.bloomberglaw.com/public...DocketNo123cv01200NDGaM/1?doc_id=X1Q6OJ0PV782
 
A patient shares his experience with Long Covid, talks about peripheral neuropathy, mentions ME/CFS and dysautonomia.

These are just a few of the points in the article, I didn't read the whole thing carefully:

Long COVID has reached the ‘Russian Roulette’ stage in the US

As the nation seeks to return to a maskless, congregate 'normal,' the brutal virus is still out there, and repeated infections seem linked to longterm health problems.

https://48hills.org/2023/03/long-covid-has-reached-the-russian-roulette-stage-in-the-us/
 
Adam pwme said:
Part 3 Full Segment

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Interesting episode

the doctor from the Evelina says 'we have a model for treatment, but that doesn't work for everyone' - what is this model that she is referring to?

I think the end part where Gez says the issue well in that is that they have tied their own hands by insisting on only evidence-based medicine, when they don't have an evidence base and they aren't tackling that by investing in a new evidence base (and I'd of course add: from places they haven't done to death already in ME/CFS to no avail)
 
Adam pwme said:
Part 3 Full Segment

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Transcribed. YouTube's auto-generated captions, but touched up.

Male anchor: Now all this week we are highlighting the devastating effects long Covid is having on children. Young people have been left disabled, unable to attend school and many have struggled to access treatment on the NHS.

Female anchor: The government has recognized long Covid is a significant problem, setting up 15 pediatric hubs across the country, including in London, and yet it seems many children are not receiving the specialist care they need to get better. Well, Stacy Poole has been speaking to families about the struggles they face and asking the long Covid clinics why children are waiting so long to access care.

[Sad Music]

Mother: It took us six months of fighting to finally get a diagnosis. It was six months of phone calls to the GP, trips to the A&E begging them to take me seriously.

Woman: There needs to be more treatments available and more more thorough investigations there are children still two and a half years on who are still not any better and it's not good enough.

Stacy Poole, announcer: All of these families have struggled to access the care that they need for their children. Emily and Hannah lost the use of their legs after contracting COVID-19, and Logan suffers crippling headaches. They've lost months of education and Emily is now registered as disabled and yet the families are still fighting for treatment.

Mother: There's nothing really in place to support and to treat the children. There's clinics being set up, but the waiting lists for them are ridiculously long! Children just to me feel like they've been forgotten or pushed aside to a certain extent.

Woman: The NHS are failing a lot of these children.

Poole: These stories are not unusual. Sammy McFarlane set up the charity long Covid kids after her daughter developed the condition. She said thousands of families are struggling. The experiences that we're hearing about time and time again is that it's difficult to get care, it's difficult to get a referral, it's difficult to be believed.

Poole: On top of that there is very little in the way of treatment, meaning children are left in terrible pain with devastating consequences.

Woman: We have a tsunami of disability of varying degrees throughout more than 70,000 children currently in the UK. I mean this is a massive problem.

Poole: So why aren't these children receiving the care they need? I've traveled to the Evelina clinic in London to speak to one of the consultants involved and I asked her if she's surprised by the number of children who are affected.

Doctor: I don't think I'm surprised given the number of people that were exposed to
Covid during the pandemic and we know that there was likely to be post-viral illnesses that came about after the pandemic.

Interviewer: Are you surprised by how severely children are affected though?

Doctor: I think we're seeing a similar severity to what we saw with some post-viral illnesses before Covid, but I guess what we're seeing is a much larger scale, so that's more shocking, is the scale of it rather than the severity of the illness because we knew it would potentially be severe for a number of cases.

Interviewer: One of the problems that we've heard time and time again is the length of time it takes to get to the long Covid Clinic. Children are waiting six months, eight months, over a year on regular occasions. This isn't good enough, is it?

Doctor: It's not what we would want to be able to provide. I think it's what we have at our disposal at the moment and what we do is spend a long time with each individual family, so each clinic appointment is two hours and with a number of professionals. So finding that ability to manage to do that more regularly is hard.

Interviewer: As you know, the long Covid Kids Charity has done a survey of all of their members and the response is pretty damning. 73% said they did not feel the long Covid clinics met their expectations. 50% have gone private because they felt like they didn't get the care they needed. And 60% of children that were seen by the long Covid clinics had been admitted to A&E. So it shows the desperate situation that these families were in. What's your response to this survey and the findings?

Doctor: The numbers are shocking, and obviously there's a disappointment that people don't feel that they're getting their needs met. So, I think we would be open to to hearing that feedback and to understanding where can we have influence to to do that. But I know that what we are not ignoring is the patient group and trying to reach the needs of those young people. But it probably is an indication of how overworked the system is and overworked individuals are.

Interviewer: It seems to me that there's a tsunami of cases and we just don't have the system to accommodate all of the children that are affected.

Doctor: Yes, I guess that is in some way the case. Because we knew that so many people were affected by Covid during the pandemic, there would be a large number affected afterwards. But yeah we don't have all the answers and we don't have them yet. But I remain hopeful that with collective will and the bigger numbers of families that are now affected, we might start to get some treatments that can that can improve things.

Poole: But all of the children that we've spoken to have already lost more than a year of their lives. Some nearly three. And they're desperate for things to move more quickly. It's very hard to know what more can be done at this point because we don't have any...there's nothing that we're holding back, that could be given.

Interviewer: So you don't have the treatment options is really the bottom line?

Doctor: We have a treatment model that works with the input of different members of the multidisciplinary team that seems to work for a lot of young people, but it's obviously not working for everyone. And what we don't have at the moment is any indication of an evidence base around other treatments that can be more effective.

Poole: And this is the issue: There are currently no clinical trials to find which drug treatments work for children who are more severely affected, and until there are, there is very little hope. Gez Medinger has written a book speaking to experts from around the world. He says the UK needs to act now before it's too late.

Gez Medinger: The long Covid clinics can only work off the research base that exists at the moment. And so until we have those research projects commissioned, performed, and then published, the long Covid clinics are essentially operating with their hands to hide behind their back. Because they have to practice evidence-based medicine, but yet we don't have the evidence base! Which is why the government right now needs to be putting money into these research projects. And that's the level of attention that I think we desperately need, and I can't understand why it's not happening.

Mother: It feels really frustrating to have been campaigning and lobbying and working at raising awareness of long Covid and trying to improve the situation for almost the entire past three years. And really, things haven't changed that much.

Poole: So until there is investment to find drug treatments that work, these children face a very uncertain future. Stacy Poole, ITV News

Male anchor: Well, we need to say that we approached NHS England for an interview. Our request was declined. In a statement, a spokesperson said they've invested 90 million pounds over the past year in services for people with long covid and that includes specialist hubs for children. They say another 90 million pounds will be invested next year.

Female anchor: They also say they have set out a plan to increase capacity, prioritize treatment, and provide better information and support for patients.

Male anchor: Well on tomorrow night's program we're going to be focusing on what's causing long Covid.
 
The statement that "there's nothing we're holding back" when referring to available treatments feels so jarring. What's being held back is a serious, all-hands-on-deck effort to solve the basic biological questions - that will lead to treatments. We have so much data going back decades and so many additional promising leads over the last 3 years already. And the "model for treatment" framed as a "multi-disciplinary team" will be based on physiotherapy and psychological therapies, which "seems to work for a lot of young people" but "obviously not for everyone" — which should highlight that this model is worse than useless and simply taking credit for the proportion with natural recovery.

And no people don't "feel like their needs are not being met". Their needs are not being met.

I also find it bizarre to hear UK doctors referring to the pandemic in the past tense, when the most recent ONS data estimates that 1:40 people in the UK are currently infected.

Screenshot 2023-03-30 at 11.14.30 AM Medium.jpeg
 
Laurie P said:
Unfortunately, this article is behind a paywall.

Ex-McKinsey Worker With Long Covid Sues Unum for Disability Pay


https://news.bloomberglaw.com/emplo...-with-long-covid-sues-unum-for-disability-pay

Court Dockets: https://www.bloomberglaw.com/public...DocketNo123cv01200NDGaM/1?doc_id=X1Q6OJ0PV782
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According to the linked to document Stephen J. Kirsch, M.D was the doctor who Unum initially turned to to assess this claimant, and he want against the advice of her doctors in claiming she was able to return to work. Scott Norris, M.D was the Unum doctor who denied her appeal.

I think it can be handy to know the names of the people involved for if a pattern of behaviour emerges. The linked to document certainly argues that there is a pattern to Norri's denials.
 
Long COVID: Incidence, Impacts, And Implications

https://www.healthaffairs.org/content/forefront/long-covid-incidence-impacts-and-implications
(I added extra line breaks in these quotes)
healthaffairs.org said:
Long COVID remains a significant, long-term consequence of even mild SARS-CoV-2 infections — one with no effective treatments.

According to the Centers for Disease Control and Prevention (CDC), as many as one in five US adults who have survived a SARS-CoV-2 infection are still living with the symptoms of Long COVID, and while numbers may vary even conservative estimates place the risk at just below 10 percent.

The implications of these findings are that anywhere from 16 to 34 million Americans may be currently trying to navigate life with Long COVID, which will have vast and far-reaching effects on the country.

For example, a recent Brookings Institution report highlighted that up to four million working-age Americans are currently unable to work due to the severity of their Long COVID symptoms.

The reality of the current public health situation is that this now-endemic virus has the capability to indiscriminately and perhaps permanently disable up to 20 percent of the people it infects (Long COVID is now a recognized disability under the Americans with Disabilities Act, Section 504).

As such, it is incumbent upon us to view this as an emergency situation, regardless of whether the federal government continues to declare COVID-19 a public health emergency or not.

In this article, we will aim to fully inform the reader on the emerging literature and landscape around Long COVID, which will hopefully provide context for evidence-informed policy decisions that can limit the impact of this devastating post-viral condition.
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A couple of quote that mention ME/CFS:
healthaffairs.org said:
It is important to note that many aspects of what is emerging as syndromic Long COVID are not novel — post-acute infection syndromes (PAIS) such as myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and Post-Treatment Lyme Disease Syndrome have been described in the literature for decades; indeed, one such syndrome emerged after the 1918 influenza pandemic.

We also must not forget those living with vaccine injury, which presents similarly to Long COVID.
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healthaffairs.org said:
It should also be acknowledged that many patients (roughly half) with a Long COVID diagnosis will meet the diagnostic criteria for ME/CFS, and there is much that we can learn from this engaged community of patients.

Unfortunately, due to a history of poorly conducted science and medicine’s habit of psychologizing and metaphorizing poorly understood conditions, people diagnosed with ME/CFS prior to the COVID-19 pandemic have endured a legacy of abuse and medical gaslighting when interacting with the health care system.

To move forward productively in our ability to treat Long COVID and other PAIS, we must acknowledge the errors of the past and learn from them to re-establish trust with the majority of patients who have experienced harm from stigma associated with their diagnosis.
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As Minnesota (USA) continues the fight for LC + ME equity, another ME advocate testified today at the MN House Health Finance and Policy Committee in support of Long COVID funding.

Her testimony starts at 24:34.

 
Funding the search for answers about post COVID-19 condition: how Stichting Long COVID is stimulating research in the Netherlands

“What I don’t understand is why there isn’t more of a sense of urgency about funding research into long COVID, when it is costing society so much,” says Ellen Bark, co-founder of Stichting Long COVID, the Dutch long COVID foundation.

“So far, much of the focus has been on the epidemiology, logging of symptoms, sending out of questionnaires, and the organization of health care,” says her fellow co-founder, Annelies Bos, who has herself been living with long COVID for the past 3 years. “There have been very few studies looking at the biomedical part of this disease.”

The long COVID foundation seeks to fill this gap by dedicating itself exclusively to fundraising for biomedical research, or research that examines the biological and physical reasons for the condition, including reasons for autoimmunity (where the body’s immune system attacks its own tissues). Annelies describes how this complements the work of other long COVID organizations in the Netherlands that concentrate more on supporting patients with information, care and rehabilitation, organizing peer contacts or political lobbying, for instance.

“It works because we are all aiming for the same goals, and we are all sending the same message that we need to understand the causes of long COVID so that we can develop treatments. And to do that, we need money.”

https://www.who.int/europe/news/ite...id-is-stimulating-research-in-the-netherlands
 
Unum Asks Ninth Circuit to Weigh Long Covid as ERISA Disability

https://news.bloomberglaw.com/emplo...rcuit-to-weigh-long-covid-as-erisa-disability

  • ERISA ruling was one of first to consider Covid as disability
  • Ninth Circuit could be first appeals court to weigh in

Unum Life Insurance Co. asked the Ninth Circuit to review a decision requiring it to pay disability benefits and attorneys’ fees to a litigator suffering from post-Covid fevers, brain fog, and fatigue.

The appeal sets the stage for what could be the first federal circuit court ruling in a case seeking disability benefits under the Employee Retirement Income Security Act for ailments related to Covid-19.
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The cases in the paragraph below are against various insurance companies including Unum (McKinsey & Co. consultant).
Similar cases have been filed by a marathon runner in her early 30s, a software developer who contracted Covid while pregnant, a former Expedia Inc. product manager whose Covid spurred a case of pneumonia, a MFS Investment Management employee with significant post-Covid fatigue, and a McKinsey & Co. consultant who began sleeping more than 14 hours per day after her bout with the virus.
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Unum’s appeal, docketed March 24 in the US Court of Appeals for the Ninth Circuit, seeks review of decisions awarding William Abrams disability benefits and nearly $170,000 in attorneys’ fees.

Abrams—also a marathon runner who was scheduled to run multiple races in 2020—joined Schwabe, Williamson & Wyatt PC as a shareholder and litigator in 2019, working nearly 12-hour days and earning $525,000 per year before bonuses.
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The article says that Abrams was diagnosed with Long Covid by 3 doctors and Chronic Fatigue Syndrome by 4 doctors.
 
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