News about Long Covid including its relationship to ME/CFS 2020 to 2021

The preprint does not say anything about brain fog.

They found higher levels of CD70 which may be relate to neuroinflammation but I am not sur that has anything to do with brain fog.

The news item in the BMJ is by the journalist who has got things muddled before. She may have had a quiet word with Dr Chalder even.

 

https://www.wypr.org/show/midday/20...-covid-views-from-doctors-advocates-survivors

"Living with Long-Haul COVID: Views from doctors, advocates, survivors"

"Tom is then joined by Emily Taylor, the Director of Advocacy and Community Relations at Solve M.E., an organization dedicated to ending chronic fatigue syndrome. Solve M.E. co-founded the Long COVID Alliance."

Some notes:

20-min mark, Dr. Ann Parker: "First step is acknowledging that there's a lot we don't know. Sometimes that's what we start with. We carefully listen to them first. One of the most important things we can do is acknowledge that their symptoms are real. To acknowledge the complex, multi-factorial symptoms and to support our patients as we learn more as a scientific and medical community, and to assure them that we are going to continue to share and apply the knowledge that we're gaining on a population level to support them on their recovery."

22 min mark, Dr. Alba Azola "One of the greatest sources of information on how to manage these patients has come from those who have studied for decades other post-viral illnesses. We have been able to reach out within our own institution to those who have been working for decades on these illnesses, for example Dr. Peter Rowe, to pass on that knowledge and be able to utilize what they have gained through their experience in clinical and medical management of these patients."

Emily Taylor joins from the 27 min - 39 mark:
- Several listeners call in with questions, as well as host questions. Here are 2:

Q: “What is the relationship of LC & ME/CFS”
A: “The 2 diseases are very similar both in prevention and in symptomology and as the amazing doctors both on this show just shared, a lot of those experts are those with institutional knowledge, they have generations of data and experience treating post-viral patients and that data and knowledge is vital for treating LC - the major symptoms including potential treatments are being explored side by side so that both of these patient populations can be helped by the research being done”

Q: From a caller, “has the pandemic shaken doctors that they are naturally overcoming the institutional bias against post-viral illnesses?”
A: “I could not agree more, absolutely. I think the awareness and coverage like this, that brings attention to so many suffering from LC and other post-viral illnesses is critical. We are seeing some major shifts in policy, practice, and funding that are reflective of this increased awareness and acceptance. But the caller is right, it’s not enough and not happening fast enough, too many people are failing through the cracks of the medical care system. Not being believed is unfortunately very common. It’s a real lack of understanding that we’re fighting but it’s going to take time.”

Chimére Smith, LC patient advocate at the 48 minute mark - “A lot of us have lost our jobs, our homes, we are hungry. I can’t tell you how many times I get on social media throughout the day and I see another LC patient create a Go-Fund Me page. I know this because I did it too. We need to think long and hard about what’s happening when tons and tons of people can no longer work and function all at the same time. The workforce has begun to suffer, no longer able to play an active part. I did not intend to leave my career.”

 

The problem of how useless single-point in time assessments are for a chronic illness with fluctuating symptoms has been endlessly frustrating to me. I seem to have been mostly alone in being annoyed by this for the most part, this is the first time I have seen anyone else use the same terms, the same annoyance over being equivalent to a single screenshot from a movie and how reliable it is at telling the whole story (spoint alert: never is):

https://twitter.com/user/status/1471564870055346181


Which to me is like assessing the speed of a vehicle at a random point during travel and extrapolating from it, regardless of whether it was taken at a red light, back road with a low speed limit or a German highway. It's worse than pointless, it's completely misleading. Might as well estimate annual pumpkin sales futures from a single week in mid-October.

 

Lots of stats & figures and trying to predict the impact of Long Covid.

The Spinoff: For many New Zealanders, Covid-19 will be a lifelong disease

https://thespinoff.co.nz/science/21...ealanders-covid-19-will-be-a-lifelong-disease

Article above based on this report (haven't read): https://www.finity.com.au/publication/dfinitive-long-covid-the-new-zealand-experience

 

Still the misconception that there is more of a chance of long covid if you had severe infection.
Longhauler social media threads are full of people who were mildly affected and didn't need hospitalisation.

Seems to be a big disconnect - you can't be this badly affected if you were not really really ill.

 

Interview with professor Brendan Delaney from the Faculty of Medicine at Imperial College London:

IPS 'With Long Covid, there's a minimisation push'

quote:
From a policy perspective, it would be naïve to think that SARS-CoV-2 would be different from other various infections. Unfortunately, there is a history of people with complex medical illness after viral illness who've been completely side-lined. It's fair to say that there is a general disinterest in biomedical research, just because it's difficult to get funding in the area.

Moreover, the area has been taken over by psychiatrists and psychologists. Clearly, labelling an illness with clear-cut biological factors as psychological and treating it only psychologically is very wrong and causes a lot of harm to many patients. The UK National Institute for Health and Care Excellence’ guidance on myalgic encephalomyelitis /chronic fatigue syndrome has just changed after a lot of controversy and 15 years of work by patient groups. And there are a lot of similarities between the two conditions.

There may well be specific features of SARS-CoV-2 about the way it affects the body biologically, the receptors it uses, the fact that it's looking more and more likely it's driven by persisting inflammation of the vascular endothelium, the lining of blood vessels. That’s throughout the body and affects all the organ systems. There’s some recent evidence pointing us in the direction of tiny blood clots causing persisting vascular inflammation.

Hopefully, a more focus on biological research will help that wider group of patients with viral illnesses.

 

I agree. This is a huge mistake.

Some Long Haulers were even asymptomatic. They only found out they had covid because they were a close contact of a confirmed case and then were subsequently tested.

 

The possibility that I have long COVID is increasing with every advanced (i.e. not clinically available) test I've done. It's not quite 100% proven, but there are still some investigations to do that could clinch it.

In that eventuality, I will have been an "asymptomatic" case that demonstrated no nucleocapsid antibodies shortly prior to vaccination. Post-vacc I have higher than expected anti-spike Ab levels. I leave asymptomatic in quotes because last year, as a patient-facing hospital worker, at the tiniest suggestion of a sniffle or sore throat I swabbed to exclude COVID — but nothing meaningful that would have otherwise kept me home.

I think in many places there was more virus circulating in communities than has been realised.

 

American Heart Association funding research on cardiovascular aspects of LC, independent of the NIH initiative:

https://twitter.com/user/status/1472928411601489920

 

What is Long COVID? Experts Explain Symptoms and Answer Common Questions

"This November, KQED Forum’s Lesley McClurg spoke with experts and a patient on what is currently known and being researched about the long-term effects of the virus:

• Angela Meriquez Vázquez, long-haul COVID patient
• Juliet Morgan, neurologist and chief resident of psychiatry at UCSF
• Upinder Singh, infectious disease expert at Stanford University
• Zackary Berger, associate professor at Johns Hopkins Institute of Bioethics

(...)

Juliet Morgan:
Unfortunately, Angela's story is nothing rare. I wish that we heard stories that were different from hers, but we had many, many participants who have been suffering and felt invisible, unheard and really invalidated.

We bring people together with knowledgeable physicians to think about how we're going to tackle long COVID together. We looked at what interventions have worked in other chronic conditions where people have increased inflammation or an over-activated, sympathetic nervous system, and we decided we wanted to emphasize interventions like mindfulness, coping strategies, and cognitive behavioral therapy.

(...)

Zackary Berger: COVID has been a social phenomenon that has affected many groups in our society. So, COVID and long COVID acts on multiple levels at once, which makes it hard to define and to treat. This means that these symptoms of long COVID are exacerbated by social phenomena, which people tend to overlook as outside the realm of medicine, and that's completely false. This leads us to a concentration on biomedical solutions when there's a lot that needs to be done for patients suffering from long COVID that's not made in a lab or found in a lab test."

 

Words fail me

 

https://www.wsj.com/amp/articles/lo...body-is-moving-inside-its-jolting-11640098486

As I've said before, I've had these symptoms for over two decades. Telling doctors about them results in eye-rolling and scoffing so you learn not to mention them.

If the medical profession had not spent the last 40 years telling us that it's all in our heads, maybe Long Covid patients would know what is happening.

 

That is a sure sign of ignorance. Paraesthesiae were mentioned in the symptom list of the 1933 LA outbreak, and repeatedly since. How could it be that people who were previously unaware of the existence of such possible symptoms report the same, or similar, experience? What would be the chances od them all imagining the same sensations, when there is no possibility of collusion?

And why cannot it be detected? It must lie in either the peripheral or central nervous system. It may be difficult to differentiate from background noise, but has anyone ever tried?

 

No doubt it was some sort of cultural illness or mass hysteria spread by that new-fangled internet wireless radio.

 

There's a very clear trend in medicine that neurological symptoms don't count much by themselves. It's all about signs, neurology is all about signs. Zero interest in symptoms, too chaotic, too complex and for too long have been made the formula for psychosomatics. So medicine basically never pays attention to neurological symptoms unless there are signs along with it, and if it can lead to a specific diagnosis. Everything else may as well not exist, it's super weird to seen an entire discipline of science just straight up indifferent to most of the data it sees, in large part as a tradition.

I fully appreciate that following every symptom for every patient is a fool's errand but to apply this systematically is massively more foolish and has pretty much caused stagnation wherever neurological symptoms are important. Like, you know, in chronic illness.

 

More than a million of us are suffering with long Covid – yet still it’s not taken seriously
https://www.theguardian.com/commentisfree/2021/dec/22/long-covid-pandemic-support-funding

Long Covid isn’t going away soon. Post-viral syndromes are not new, but we have never seen anything on such a scale. I dread the thought of getting the Omicron variant. Who knows how my body would react this time? I first wrote about long Covid a year ago, and I could never have imagined that I would still be unable to work at this point. It seems so strange that, as a consultant in infectious diseases, I’ve had to sit out the entire pandemic from the sidelines, when I should have been playing a vital role.

When fit to work, Joanna Herman is a consultant in infectious diseases in London, and teaches at the London School of Hygiene & Tropical Medicine
​

I wonder what she thinks of her peer at Liverpool SHTM Paul Garner.

This article is interesting in another way. The author speaks of having organized a group dedicated to exercise, especially breathing exercise and singing, and how she appreciated them. Even though by her own admission it doesn't work. There must be something about the simple act of doing something that makes people more favorable to the trying, even if it fails.

They did this on their own, from a patient community. It wasn't even organized, no therapists were trying to design their own thing or push their questionnaire. And even though it's clearly ineffective, she speaks fondly of it, of trying to get some control in their lives. Which is probably what little "effect" goes into any of the trials, it's not even a typical placebo, it's more of a "there's nothing so at least trying something is better than nothing".

And sure enough the message from BPS ideologues is pretty much exactly this: it's better than nothing. Because nothing is stagnation. Something? Well that could be stagnation too, but it could be what finally works. But the only reason it's better than nothing is precisely the possibility that something will work, which is not possible with the BPS model, instead taking credit where the passage of time is favorable.

 

Doing something is an effective remedy for the feeling that something must be done. It's very hard to do nothing when there is a serious ongoing problem.

 

Still universally lacking from updates by public health, medical and government authorities, but some news media are at least slowly coming around to it. Although in this case it may have more to do with the author being a long hauler. This remains a problem, only those with lived experience understand it, but not everyone with lived experience will.


Vaccinated Isn’t Enough: Omicron Carries the Risk of Long Covid
https://www.rollingstone.com/culture/culture-commentary/covid-omicron-long-covid-risk-1274717/

But in reality, the president’s message didn’t give it to anyone straight, or even accurately. That’s because Long Covid — a dizzyingly lengthy list of new, returning, or ongoing health problems some people experience for months (and in some cases, close to two years) following their initial infection — wasn’t mentioned as one of the potential outcomes of Omicron infection. In fact, Biden didn’t mention Long Covid at any point during his speech. Here’s why that’s a problem.​