Long Covid in the media and social media 2023

I'm working with a project team on a job , most of whom have had COVID . All are fine .... except those who ran regularly either don't at all or have hit a new lower limit, and generally they are all feeling more tired - but hey everyone is right , it's just a thing at this time of year.... It came up as smalltalk prior to a meeting.

 

I don't know if this study was posted. It mentions increased muscle injury after infection.

 

Metformin for long Covid

https://www.medpagetoday.com/infectiousdisease/longcovid/103628

Thread here

 

Sharing a recent legislative hearing (3/21/23) in Minnesota, USA on a State Department of Health bill that includes a Long COVID budget proposal.

Two ME/CFS advocates showed in-person to testify for support.

House Health Finance and Policy Committee 3/21/23 - Part 2

Some time-stamps from the hearing, if interested in viewing:

- At at 19:50 minute mark, Department of Health Commissioner shares the ‘Supporting Long COVID Survivors and Monitoring Impact’ budget proposal in the bill

- At 44:00 minute mark, the President of Minnesota ME/CFS Alliance testifies in support of the Long COVID proposal

- At 48:50, the Director of Advocacy & Outreach for Minnesota ME/CFS Alliance testifies in support of the Long COVID proposal.

- At 1 hour mark, Rep. Andy Smith, “Just something very quick. I think it’s very telling, that in an evening committee meeting, where we all want to go home, that a lot of our testifiers tonight talked about Long COVID and the need to remember those people. It’s easy to remember now that we’re past the hardest part of the pandemic, and think that we’re past that, but a lot of Minnesotans are suffering from that. This is a big bill, with a lot of great stuff, but I just wanted to comment on how powerful I found that. Again, on a Tuesday night, we had a lot of people here talking about Long COVID and the need for us to take care of those Minnesotans and not forget about them.”

 

Also coincides nicely with the 2023 cover feature story for Minnesota Physicians Magazine, "Long COVID | Facing a shadow pandemic"

"The impacts on health and well-being, communities, health care systems, the workforce and the economy cannot be ignored"

"The complexity, uncertainty and evolving knowledge around post-COVID conditions make communications and messaging around long COVID a challenge for both health care and public health personnel."

'People with severe long COVID may meet diagnosis criteria for conditions like dysautonomia, postural orthostatic tachycardia syndrome (POTS) or myalgic encephalomyelitis, also known as chronic fatigue syndrome or ME/CFS.'

"Stigma may also play a role. Patients with similar post-infection conditions like ME/CFS and chronic Lyme disease have been dismissed for decades, and long COVID may be written off as simply anxiety or a deficit in healthy living habits. While studies have indicated that many patients with long COVID experienced increased anxiety and depression, the impacts on mental health often stem from the loss of normalcy, stability and identity felt by those who are facing a new chronic illness or disability.

 

Oh, they can. For decades. Well-documented, even. In fact, it's literally happened again. The same way.

With the same arguments: it's so easy. They even say it out loud: it's so easy to just flush those patients down the drain because it drains out in darkness, on purpose. This is the "shadow" part: the darkness is caused by the capstone laid on the entire issue, to bury us alive like we never existed.

They say that it's easy to be negligent. And no one bats an eye as to why, or how, any of this is even happening. It's as much a "shadow pandemic" as modern slavery is a shadow slavery problem.

It's happening in broad daylight and the whole system, like modern slavery, is built to fully take advantage of it because most people are content, find it easy, to pay half price for something as long as they don't have to endure seeing with their own eyes what the real price paid by someone else was.

What does it say about a system that looks at things that clearly cannot be happening, and yet is the sole reason why it is still happening? None of this is accidental, or found in nature. It is the product of choices made by people, for other people who fully dissent with those choices, in a system that is supposed to uphold informed consent, yet does not even respect basic consent. Not fully. Because respecting consent is like murder, it's not 'when convenient'. It's always, or never. In full, or not.

 

Long article about treating long covid with LDN in Rolling Stone: Can an Addiction Drug Treat Long Covid?

Digging into the research, Korbutov learned that while naltrexone only has approval from the U.S. Food and Drug Administration (FDA) for treating people recovering from addiction to heroin, morphine, oxycodone, and alcohol, some doctors prescribe it off-label in much smaller doses for chronic conditions like fibromyalgia, multiple sclerosis, and Crohn’s disease.

“Once I looked into the science, I was kind of shocked that it wasn’t more mainstream medication,” Korbutov tells Rolling Stone. “It’s one of those things you have to discover yourself.”

This is, in part, because unlike new-to-the-market blockbuster drugs, pharmaceutical companies don’t stand to profit much from one that’s been around for decades, and, as a result, aren’t spending money promoting it. LDN also has yet to go fully mainstream because the medical establishment has long ignored and dismissed the chronic and invisible conditions it has been used to treat — myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) in particular.

(...)

For now, Luis Nacul, MD, PhD, an associate professor at the University of British Columbia’s Faculty of Medicine and the principal investigator of a clinical trial investigating the use of LDN as a potential treatment for post-Covid fatigue, discourages LDN’s off-label use.

“Until this research is completed, we do not recommend the use of LDN for people with Long Covid-19 because it is essential to create the evidence before recommending its use,” Nacul told Rolling Stone in an email.

Post copied to this thread: ​

Trial registration: Low-dose Naltrexone for Post-COVID Fatigue Syndrome, Luis Nacul, British Columbia Women's Hospital & Health Centre

 

https://twitter.com/user/status/1638845489599729666

 

"I stand by my words - I'd be lost without all the support from #pwME - you're genuinely wonderful and so generous. I stumbled on this webpage early on in my #LongCovid journey and #stoprestpace quickly became an essential part of every hour of every day!"

 

The frequency at which I see testimonies from LC patients saying they ended up severely ill, bedbound for months or worse in some cases, after following advise to exercise and push through is seriously shocking. It's pretty much one of the most common comments I see. If it were possible to report this the numbers would be staggering. But not recording anything makes accountability impossible.

They almost all say that it's specifically following their physician's advice that caused it. They trusted wrong advice and it caused them harm. And none of this is being recorded, it's not even acknowledged as harm, or an issue at all. Because the circular reasoning of the psychosomatic model is content with framing it as part of the disorder.

In the future this will be all studied as basically the equivalent of what engineering programs feature with the steel rings and the whole learning lessons from the disasters of the past.

Meanwhile in medicine it's basically as if those very disasters were still taught as standard practices, with some framing that it's normal for some large engineered structures to regularly fail without any explanation. What a weird fantasy bubble.

 

How do we get this acknowledged? What is the process? What has to happen?

 

Time and technological progress. Medicine did not easily let go of the Humors either, is basically still struggling with accepting the germ theory of disease. Progress at the pace of funerals.

Outside of technology, barely anything matters. Once the technology is ready, it forces people to change. Until it's ready, it barely matters what people do. If the AIDS crisis had happened decades earlier, before medicine knew about viruses at all, no amount of effort would have made up for it.

Main difference is that infrastructure collapses were universally acknowledged as 1) having happened and 2) being bad. We have neither yet. Can't even acknowledge they have a problem.

Right now the most likely scenario is that AI eventually allows us to bypass the healthcare system and just do most of it ourselves, then years after it's been used effectively, and likely clandestinely, medicine will adopt it like nothing happened. I don't think they can do this, too much conflict. Medicine will have to go through a huge liberalization phase before it can even acknowledge this.

 

More like to make money and lend undeserved prestige to their profession as well as avoiding treating patients with respect and consideration.

 

Suffering in Silence: Long Covid and Chronic Fatigue Syndrome

A guest post by Michael A. Osborne, Professor of Machine Learning at the Department of Engineering Science about neglect of the connection between the two conditions by the medical community

Michael Osborne Mar 21 4

Acting Associate Editor AM Arshee

As the medical community continues to overlook a debilitating condition with over 200 evidenced symptoms, the pressing question remains: what will it take for Long COVID to receive the due attention, research funding, and policy impact required for adequate patient care?

The following article was written by Mike Osborne - an accomplished Professor of Machine Learning at the Department of Engineering Science, who has secured over £10.6M of research funding and co-founded the emerging field of probabilistic numerics. His work on the societal impacts of machine learning and robotics has been widely recognised, with citations over 10,000 times, and has had a significant policy impact, including presenting evidence to the UK House of Commons Science and Technology Committee.

---

It ends:

"17-24 million globally suffer from ME/CFS, with lower quality-of-life scores than patients with heart failure, multiple sclerosis, and end-stage renal disease. Recovery is rare. Worse, ME/CFS research has been shamefully underfunded relative to disease burden, ME/CFS is the NIH's least-funded disease, treatment is usually more harmful than helpful, and fewer than a third of medical schools even include ME/CFS in their curriculum.

ME/CFS and Long Covid, the suffering of millions, cannot be ignored. Patient communities have been doing heroic, unpaid, work to understand these diseases, and to serve as sources of advice and care. To me, it seems that the least everyone else could do is to not look away. After all, no one knows why patients fall sick. You, or your loved ones, could be next. What these illnesses really need is adequate funding for biomedical research. What these illnesses really need are cures."

https://jimcoyneakacoyneoftherealm.substack.com/p/suffering-in-silence-long-covid-and

 

I'm glad Osborne found a platform to talk about Long Covid and ME/CFS.

But I think folks should know a bit about James Coyne's past behavior, some of which is mentioned in this thread from 2018:

https://www.s4me.info/threads/james-coyne-sued-me-for-cyberbullying.6357/

He never attacked me personally but he did attack other ME patients. There were incidents of name calling, "F*** you", and bullying. In short, punching down, not punching up.

 

https://erictopol.substack.com/p/preventing-long-covid

preventing LC by Eric Topol

 

Long COVID? What is that?
Jules Morgan

Some people do not believe long COVID (also known as post-COVID-19 condition) is real. In fact, patients have reported that there are even doctors who sit in this camp, who might dismiss their symptoms as psychosomatic, or do not know how to recognise or treat long COVID. It is complicated, even for researchers. People might not have had severe symptoms when infected with SARS-CoV-2 virus, they might be young, without a significant medical history or risk factors. Although studies suggest around 10–20% of individuals who did not have severe acute disease might develop long COVID symptoms, the number of people who are facing long-term effects is hard to quantify. There are common symptoms, such as fatigue, shortness of breath on exertion, and cognitive and executive dysfunction, but the list is extensive and changeable, and many experience problems with multiple organs. People with long COVID are asking “Why me?” and “When will it end?”

https://www.thelancet.com/journals/lanres/article/PIIS2213-2600(23)00126-1/fulltext

 

https://twitter.com/user/status/1638895284838371329