Long Covid in the media and social media 2023

[Kalliope]

Medscape Children and Long COVID: How Many Are Affected?


Children are at lower risk for contracting COVID and often experience milder symptoms. But the virus is now widespread, and a recent study found that around 16% of pediatric patients with COVID go on to develop symptoms that last more than 3 months — the working definition of long COVID.

...

He said his team targets symptom groups. Initial management consists of a diet without sugar or refined carbohydrates. Skipping pasta and sweets can be hard for young people, but Miller said sometimes the diet alone helps.


Many have vitamin D and iron deficiencies. Others need help getting a good night's sleep. He's treated 50 with off-label low-dose naltrexone.


Some people with long COVID ― both young and old ― complain about being misdiagnosed as having depression. Miller says he see a lot of anxiety ― some situational and some biochemical ― in pediatric patients. But he cautions doctors not to treat their illness solely as a mental health problem.

 

[Midnattsol]

He said his team targets symptom groups. Initial management consists of a diet without sugar or refined carbohydrates. Skipping pasta and sweets can be hard for young people, but Miller said sometimes the diet alone helps.

Many have vitamin D and iron deficiencies.

A lot of people have diets high in starches together with vitamin D and iron deficiencies. That's not saying a lot.

 

[Amw66]

A lot of people have diets high in starches together with vitamin D and iron deficiencies. That's not saying a lot.

Practically the general definition of a teenager' s diet
Given the physical and emotional changes it doesn't seem surprising that there are deficiencies there's a huge requirement for chemical substrates

 

[rvallee]

Miller says he see a lot of anxiety ― some situational and some biochemical

Anxiety is generally defined as related to thoughts, as worrying. If they're going to use this "biochemically", they need to separate them completely because they have nothing to do with the psychosocial definition that is the commonly used one.

There is nothing in common between anxiety and being injected with epinephrine. Medicine really needs to end this wishy-washy stuff or they'll just remain stuck in the same old circles.

 

[Sly Saint]

Raising awareness of Long Covid blue legs symptom

An unusual case of a Long Covid patient’s legs turning blue after 10 minutes of standing highlights the need for greater awareness of this symptom among people with the condition, new research shows.

The Lancet paper, authored by Dr Manoj Sivan at the University of Leeds, focuses on the case of one 33-year man who developed with acrocyanosis – venous pooling of blood in the legs.

A minute after standing, the patient’s legs began to redden and became increasingly blue over time, with veins becoming more prominent. After 10 minutes the colour was much more pronounced, with the patient describing a heavy, itchy sensation in his legs. His original colour returned two minutes after he returned to a non-standing position.

The patient said he had started to experience the discolouration since his COVID-19 infection. He was diagnosed with postural orthostatic tachycardia syndrome (POTS), a condition that causes an abnormal increase in heart rate on standing.

Previous research by Dr Sivan’s team has shown that both dysautonomia and POTS frequently develop in people with Long Covid.

Dysautonomia is also seen in a number of other long-term conditions such as Fibromyalgia and Myalgic Encephalomyelitis, also known as Chronic Fatigue Syndrome or ME.

Raising awareness of Long Covid blue legs symptom | Corporate | University of Leeds

 

[rvallee]

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

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

Also posted with a different title on their website:

The Most Important Question About Long COVID
https://hms.harvard.edu/news/most-important-question-about-long-covid

Snyder-Cappione was particularly intrigued by long COVID's overlap with the symptoms reported in a condition called myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), which is marked by profound fatigue, exhaustion, neurologic problems, sleep disturbances, headache, joint pain, shortness of breath, and palpitations. Like long COVID, ME/CFS tends to develop following certain viral and bacterial infections.

Studying those syndromes in parallel may bring insights about shared or similar mechanisms underlying these disorders. Even though many talented scientists have dedicated efforts to understanding postinfectious syndromes over the years, these efforts have been sporadic, Levy said, mainly because conditions like EBV, CMV, or Lyme disease, for example, have lacked the numbers and urgency of long COVID. This has led to less sustained funding to define their basic biology.

"Because of this new momentum, I am hopeful that research with long COVID patients presenting with these symptoms will result in novel treatments to help those afflicted with chronic conditions caused by other pathogens and insults," Snyder-Cappione said.

This is why MassCPR is expanding the mandate of its long COVID research group, co-led by Snyder-Cappione and Levy, to incorporate the study of other postinfectious disease syndromes. To reflect the new direction, the group will be renamed Post-Infectious Clinical Syndromes.​

Unfortunately, this makes it yet another umbrella name, which Long Covid already. PICS. And yeah it felt familiar, there is already "Post-intensive Care Syndrome" with the same acronym.

Although I strongly dispute that we lacked the numbers. Tens of millions is more than enough to act, but that number, and its reality, was strongly suppressed, denied and maligned by malicious interests and misguided fools.

 

[Art Vandelay]

This a good article from a patient with Long Covid who experienced some appalling gaslighting:

I Begged My Doctors To Figure Out What Was Wrong With Me. Instead, I Was Medically Gaslit.
...
I’ve had long COVID since March 2020. My illness has given me a firsthand look at the dismissal faced by patients, especially women, who have chronic illnesses. Doctors repeatedly doubted the reality of my symptoms, leaving me without medical care for more than a year. Sadly, I’m not alone in this experience.
...
Discrimination appears to drive these dynamics. The widespread dismissal of long COVID is a familiar story for many people with illnesses such as chronic pain and myalgic encephalomyelitis/chronic fatigue syndrome, or ME/CFS. Patients often struggle for years to receive diagnoses and treatments. ME/CFS, a disease that’s similar to long COVID and can result from infections such as mononucleosis, has a particularly ugly history.

 

[Sean]

From that article:

Many experts think that skepticism around chronic illness is rooted in sexism, which has historically pervaded medicine. In an article for The New England Journal of Medicine, Dr. Steven Phillips and Michelle Williams wrote, “If the past is any guide, they [patients with long COVID] will be disbelieved, marginalized, and shunned by many members of the medical community.” The authors said that long COVID disproportionately affects women, which may exacerbate the disregard. “Our medical system has a long history of minimizing women’s symptoms and dismissing or misdiagnosing their conditions as psychological,” they wrote.

Existing thread for the linked NEJM piece.

https://www.s4me.info/threads/the-n...-long-haul-covid-philips-williams-2021.21277/

 

[JemPD]

i thought it was a good article, but...

They often characterized these interactions as “gaslighting,” the maddening feeling of stating an obvious truth and then being disbelieved.

i do wish people would stop calling disbelief 'gaslighting'.

Gaslighting is not the 'maddening feeling of being disbelieved', it is a form of psychological abuse designed to make the victim doubt their own experience, make them believe they are going crazy, and cannot trust their own reality or experience. Make them believe they are experiencing psychosis or true medical paranoia.

It is not... being disbelieved/dismissed/patronised/belittled, (on their own). Nor is it simply being disagreed with or someone remembering something differently.

As someone who has experienced actual gaslighting in a domestic abuse situation, the ubiquitous misuse of this term is really starting to rankle.

Dont get me wrong, i dont doubt that many medical encounters for PwME/LC qualify as unintentional gaslighting, or even occasionally intentional. The unintentional form has happened to me a few times. CBT for ME as practised a la PACE, is most definitely gaslighting because its specifically designed to make patients believe their interpretation of their own bodily experience is wrong and they need to give up their own reality in favour of that of their therapist.

But its getting so watered down and misused that its losing its meaning and that leaves abuse victims with no word for the actual abuse that takes place.

Rant over: if mods want to move this to its own thread thats fine, i know its somewhat off topic, but i've been wanting to mention this for a while now but i never seem to have the energy or emotional bandwidth to start a thread about it, but when i read it in print in that huff post article being inaccurately described, it prompted me to say something.

Edited to add: after discussing with someone privately i want to make it clear that when i say being disbelieved is not being gaslit, i meant disbelief on its own. Lots of unintentional gaslighting stems from disbelief, but simply not believing someone isnt gaslighting them.
IMHO & according to the original use of the term.

 

[rvallee]

i thought it was a good article, but... i do wish people would stop calling disbelief 'gaslighting'.

Gaslighting is not the 'maddening feeling of being disbelieved', it is a form of psychological abuse designed to make the victim doubt their own experience, make them believe they are going crazy, and cannot trust their own reality or experience. Make them believe they are experiencing psychosis or true medical paranoia.

It is not... being disbelieved, being dismissed, being patronised/belittled, being disagreed with or someone remembering something differently.

As someone who has experienced actual gaslighting in a domestic abuse situation, the ubiquitous misuse of this term is really starting to rankle.

Dont get me wrong, i dont doubt that many medical encounters for PwME/LC qualify as unintentional gaslighting, or even occasionally intentional. The unintentional form has happened to me a few times. CBT for ME as practised a la PACE, is most definitely gaslighting because its specifically designed to make patients believe their interpretation of their own bodily experience is wrong and they need to give up their own reality in favour of that of their therapist.

But its getting so watered down and misused that its losing its meaning and that leaves abuse victims with no word for the actual abuse that takes place.

Rant over: if mods want to move this to its own thread thats fine, i know its somewhat off topic, but i've been wanting to mention this for a while now but i never seem to have the energy or emotional bandwidth to start a thread about it, but when i read it in print in that huff post article being inaccurately described, it prompted me to say something.

100% right. Doctors get it completely wrong all the time. The recent misuse in another thread from the GP magazine in the UK is just one example. No wonder they don't get it when we use the term, but also they simply disbelieve us when we explain its consequences.

Gaslighting is so much more malicious, and the very premise of the biopsychosocial model is to explicitly do that. It reattributes entirely not only the cause, but the whole thing, our entire illness and how we experience it. It's more Art of war than something belonging to a medical textbook. It's so bad that MDs can't acknowledge how bad it is, it's too shocking.

Although being disbelieved about health issues is already a serious offense, in my opinion. It should never happen. It routinely happens. But with us, with issues medicine doesn't know how to deal with, it takes a very perverse twist in making everything about us being on the premise of denying our very experience, and making stuff up instead with harmful consequences.

 

[JemPD]

t takes a very perverse twist in making everything about us being on the premise of denying our very experience, and making stuff up instead with harmful consequences.

yes but gaslighting isnt 'denying a persons experience', its messing with their heads in a way that is explicitly designed to get them to deny their own.

(not suggesting you dont know that @rvallee , just pointing it out because that's iften how the term gets incorrectly used.)

 

[Trish]

Some posts have been moved to In memory of Brandon Gilles

 

[ahimsa]

Does substack count as social media?

Anyway, I saw this link to Eric Topol's latest substack post on social media (mastodon):

Long-Term Long Covid
New reports at two years and the known unknowns that lie ahead

https://erictopol.substack.com/p/long-term-long-covid​

Today there are 2 new papers published on the 2-year follow up of over 100,000 people with Covid and millions of uninfected controls. In this edition of Ground Truths, I’ll review the salient findings of the 2 studies, and highlight the uncertainties of our knowledge base for Long Covid, which has already compromised the lives of tens of millions of people. Unfortunately, what was seen at 6 months largely continues out to 2 years.

 

[rvallee]

Noticed this from some "HR Grapevine", which from the sound of it would be a publication for the human resources industry in the UK.

“Some people diagnosed with Long Covid for >12 months are having their diagnosis changed to ME/CFS.”

Although big yikes on the "likely meet the definition of disability under the Equality Act 2010". Which, although correct, means very little in real life terms.

From this thread, with a few other bits:

Although the account posting this sees it as a bad thing, Long Covid is an umbrella term, it includes outcomes like heart disease, type 1 diabetes and likely some cancers. It's meant to account for all possible outcomes of a COVID infection, and the expectation was exactly that medicine would stratify them properly.

Properly, being the important keyword here. Now of course we still have no idea how many pwME live in the UK, since no one's counting and officially it's still the decades-old 250K count, at a single point in time. So it is a good way of hiding many. And I doubt that dysautonomia is counted at all.

 

[Midnattsol]

Not exactly long covid perhaps, but one of the prominent "ME is psychological" Norwegian Institute of Public Health employees are in the media telling everyone not to think about (long) covid. Nothing to worry about.

 

[Kalliope]

Not exactly long covid perhaps, but one of the prominent "ME is psychological" Norwegian Institute of Public Health employees are in the media telling everyone not to think about (long) covid. Nothing to worry about.

Ah, yes. And in another interview today (he's been busy) he says won't be bothered to test himself if he has symptoms. That's our top epidemiologist in our country, that is.

 

[Midnattsol]

Ah, yes. And in another interview today (he's been busy) he says won't be bothered to test himself if he has symptoms. That's our top epidemiologist in our country, that is.

Anecdotally there are lots of people coughing at work. So even though NIPH actually advises to "stay at home if (symptomatic) sick" the attitude is that it's no problem. We even share a building with frail, mostly elderly patients.

 

[Kalliope]

Anecdotally there are lots of people coughing at work. So even though NIPH actually advises to "stay at home if (symptomatic) sick" the attitude is that it's no problem. We even share a building with frail, mostly elderly patients.

I am so sorry to hear that. WHO is even more clear, (use mask, keep distance, stay at home when ill and so on) so I don't understand how we are able to ignore it all completely here :-(
https://www.who.int/emergencies/diseases/novel-coronavirus-2019/advice-for-public

 

[Sean]

I am so sorry to hear that. WHO is even more clear, (use mask, keep distance, stay at home when ill and so on) so I don't understand how we are able to ignore it all completely here :-(
https://www.who.int/emergencies/diseases/novel-coronavirus-2019/advice-for-public

Which means that no medical authority anywhere has the excuse that nobody tried to warn them.

 

[Esther12]

Not exactly long covid perhaps, but one of the prominent "ME is psychological" Norwegian Institute of Public Health employees are in the media telling everyone not to think about (long) covid. Nothing to worry about.

I understand people not wanting to promote things like that, but linking to an archive site can be useful for the future. Sympathies to those in Norway...