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

As a child I used to get tonsillitis frequently. My temperature would sometimes rise to 104F. I have always found fairly high fevers like that would cause what I now describe in my old age as brain fog. Since that time I've had brain fog caused by other situations and the symptoms aren't always identical. But I'd still say I was suffering from brain fog.

 

I think the poor, the working class, and many women aren't trusted and never have been, and in recent decades this has been getting worse and worse. There is this stereotype that they (the poor, the working class and women) are always "yanking the chain", malingering, lying, attention-seeking, not trusted to tell the truth about their own health, are trying to pull a fast one, trying to get something for nothing, and trying to get out of work and are lazy.

I think very few people would be able to get a month off (in the UK) for flu, for example, no matter how bad the flu actually was.

I think all the BPS and FND stuff has these beliefs at the root of it, as do all the roadblocks put in the way of people getting benefits.

 

BPS is usually defined as the intersection of psychology and medicine but frankly it would be more accurate to say it is the intersection of politics and the outer fringes of medicine, the place where there be dragons.

Without this kind of gutter politics, usually built on the just world fallacy, none of this ever takes hold, those political beliefs predate and make the foundation of this ideology, it lives in newspaper headlines maligning "Cadillac-driving welfare queens" (the US version of it), or any variation in other countries.

You can even see it in most research, that the main goal, the only goal, is to keep costs down and to obsess with health care utilization, without any interest in understanding why it is even happening, the only certainty being that it shouldn't be happening. No coincidence, pure politics (and not even the good kind, good politics can do actual good, unlike this dystopian nightmare).

 

The BPS stuff sometimes comes across as a system that is primarily concerned with acting as moral police when in reality medicine has nothing to do with policing people to be good diligent citizens.

The explanations they give for illness tend to involve moral failure, and the solutions they propose tend to involve patients overcoming their flaws and becoming a better person.

 

about 19 hours ago

https://www.irishtimes.com/life-and...-covid-the-suffering-was-monumental-1.4502178

More of the article discusses long Covid but I'm not sure it's that interesting from our point of view, e.g. other symptoms aren't discussed.

 

What are the odds that the physician who got a double lung transplant got it because he was a doctor?

 

Google translation of a Japanese article.

Symptoms of suspected corona sequelae "myalgic encephalomyelitis / chronic fatigue syndrome"

Original, https://hc.nikkan-gendai.com/articles/275994
Translation, https://translate.google.com/translate?sl=auto&tl=en&u=https://hc.nikkan-gendai.com/articles/275994

 

Long Covid: Warning over combining ME treatment

https://www.bbc.co.uk/news/uk-northern-ireland-56341431

 

Why segregate ME and long-COVID? I totally disagree with the ideas put forward in this article.

Long-COVID must be assessed and treated side by side with ME. It will bring new doctors to the field, the same ones who are seeing from their own eyes what happens when a person does not recover. New doctors materialized for Long-COVID programs, some of which who got COVID I presume.

And wait times? We currently have a 28 months wait time over here for ME. As for Long Covid, patients get seen at 3 months and 6 months, to start with. There will be research and clinical trials, much faster than ME.

It would be a grave mistake to keep both segregated.

 

Returning to the topic of brain fog and LC a little bit: I just saw an article on one of the major Hungarian news sites, reporting on long covid after asymptomatic infection, and it used the expression: Covid fog.

 

Seems to be a New Scientist article published in full via ScienceDirect.

Children with long covid

Almost half of children who contract covid-19 may have lasting symptoms, which should factor into decisions on reopening schools, reports Helen Thomson

A SERIOUS picture is emerging about the long-term health effects of covid-19 in some children, with UK politicians calling the lack of acknowledgment of the problem a “national scandal”.

Children seem to be fairly well-protected from the most severe symptoms of covid-19. According to the European Centre for Disease Prevention and Control, the majority of children don't develop symptoms when infected with the coronavirus, or their symptoms are very mild.

However, it is becoming increasingly apparent that a large number of children with symptomatic and asymptomatic covid-19 are experiencing long-term effects, many months after the initial infection.

https://www.sciencedirect.com/science/article/pii/S0262407921003031

 

Mon 15th Channel 4 8pm Dispatches 'The Truth about Long Covid'; will be interesting to see what the 'truth' is as so far C4 have avoided any mention of ME in their coverage.

 

The Norwegian Institute of Public Health has published a report:
COVID-19-Epidemic: Covid-19: Long-Term Effects of COVID-19 - a rapid review

It has a summary in Norwegian, the rest is in English. Not able to read it, but noticed that one of the authors was Brurberg, who also was co author on the Cochrane review on ME/CFS and Graded Exercise Therapy. I doubt this Covid-19 report mentions ME, but worry there will be a "biopsychosocial" approach also towards Long Covid from the Norwegian Institute of Public Health.

 

Is there any opinion on a maximum when something unexplainable can not be psychogenic?

Serious question, where does medicine draw the line?

I get how you can sweep a couple of people under the rug.

But depending on the definition of LC we're talking about 10-30% of all infected. Maybe more since even asymptomatic patients seem to develop LC.

Even as an enthusiastic PBSer, how likely is a psychogenic explanation at this point?

 

It's a very good question.

Unfortunately, as caffeine withdrawal, bereavement that lasts more than two weeks over the loss of a loved one and someone else deciding that you're focusing too much on any symptom of a recognised and diagnosed physical ailment can now all be classed as mental health complaints I'd say fairly likely.

They've gotten away with it so far. They've made huge amounts of money and had glittering careers off the back of gaslighting prey patients. No reason why they'll stop now with all that fresh meat.

If anything it will only encourage them.

 

Is the health problem, disease, injury invisible? Then draw the line there and throw them in the psychogenic garbage can.

 

I bet the quacks go with mass hysteria, with the emphasis on the 'mass'. Social media, patient support groups and all that will be blamed.

 

Long-haul Covid patients can experience 'waves of symptoms,' early research suggests

https://www.nbcnews.com/health/heal...rience-waves-symptoms-early-research-n1259281

Long-term symptoms may emerge in a distinct pattern over weeks and months.

...

Natalie Lambert, an associate research professor at Indiana University School of Medicine, surveyed thousands of "long-hauler" Covid-19 patients, finding that specific symptoms tend to emerge at regular intervals — usually a week or 10 days — resulting in what she calls "waves of symptoms."

...

"The first wave is clearly the more flu-like symptoms," such as fatigue, headache, fever and chills, she said. "Then it seems like diarrhea, nausea and vomiting are five days later, typically."

The new waves don't mean the previous symptoms disappear; those symptoms can linger, or they may fade and re-emerge later.

Ten days into illness, another wave crashes. This time, the new symptoms tend to be more neurologic, including confusion, dizziness and difficulty concentrating. Patients may also develop joint pain and low back pain. Some report pressure in the brain that is so intense that it feels like their heads might explode.

Fifteen days into illness, yet another wave of new symptoms: high or low blood pressure, heart palpitations, a tendency to faint.

A week later — about 21 days in — patients start experiencing issues like mouth sores, muscle twitching, eye infections and a skin condition that has been referred to as "Covid toes."​

Medicine starting to notice things that were obvious to many as early as last May. I'm not sure about this slow-learning approach thing, it's not very impressive.

 

Long Covid patients 'told to go away by GPs'

https://www.bbc.com/news/uk-wales-56346444.amp

Aka standard medical practice for chronic illness.

Some patients who suffered ongoing health problems after contracting Covid-19 "were told to go away and get on with things" by their family doctors, a Senedd committee has heard.

...

"There are some people who were told to go away and get on with things, and they may not have come back. And that does concern me. If we have got people who weren't listened to in the beginning, they need to be listened to now."​

Yikes, though:

Dr Elaine Maxwell, from the National Institute for Health Research Centre for Engagement and Dissemination, said it was important patients' concerns were not ignored in the way that those with ME had felt overlooked in the past.

She told the committee: "I think it is about believing people and taking medically unexplained symptoms seriously. That is the main problem for people with ME, they had something people didn't understand and were told it was all psychological.

"It is important we don't do that again, whilst recognising that we don't understand it. And we need to keep our minds open to a whole range of possible explanatory hypotheses, and not narrow it down too quickly. "​

Saying this past tense is both massively annoying and incompetent. Especially as this reinforces the very problem, by insisting on the nonsense of MUS. This is exactly why this keeps happening, because people keep pretending that what is an ongoing human rights disaster used to happen. WTH? The sheer laziness of these people is insufferable.