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

SBS News 'Wise to be thinking now': Calls for Australia to consider the burden of long COVID

quote:
"We need to recognise that COVID-19 is not like the flu. There are long-term implications, the recovery journey can be a long one and it can impact your quality of life even if you are not hospitalised," he said.

'Long COVID' has also cast a spotlight on the experience of those with myalgic encephalitis, often referred to as chronic fatigue syndrome (ME/CFS), with some researchers and patients noting a similarity of some symptoms.

Professor Martin Hensher, from Deakin University's Institute for Health Transformation, said the most direct link is common symptoms of fatigue and debilitation, and associated mental health impacts.

He said patients with 'long COVID', like those with ME/CFS, are reporting concerns health professionals are not taking their conditions seriously.

"Certainly, people who suffer with ME/CFS often report they're shuffled off with the implication it's all in their minds," he told SBS News.

'What we are seeing - not necessarily in Australia because our numbers of COVID-19 patients are so low, but certainly in the UK and Europe - is that many people with 'long COVID" are reporting they are having quite similar experiences.

"They believe they are quite debilitated and disabled by this, but their GPs and sometimes specialists are not taking them seriously, and are often limited in what they can do for them."

Professor Hensher said learning how to support 'long COVID' patients will be a "difficult yet important challenge" that can draw from the experiences of the ME/CFS community.

 

Good article. Although I dispute the premise as too little too late. It would have been wise to be thinking about this 16 months ago when it became obvious, to us anyway. Today it's just barely catching up having having missed all the warning signs and failed to follow the evidence.

Wisdom is not acting far after even laypeople have been screaming that this is an issue. It's being able to exercise foresight and plan accordingly. I distinctly remember Koroshetz saying, I think it was in April of 2020, that they should plan for this. They didn't. That would have been wise. Instead medicine went with utterly foolish, playing catch far too late is about as unwise as it gets, especially as it will obviously only happen being dragged kicking and screaming into doing the obvious.

Pet peeve but wisdom means something and this ain't it. Doing the bare minimum very late into it is a clear sign of systemic failure.

 

New film from Gez Medinger titled: The Psychologisation if Illness - Why Long Covid (and ME/CFS) Are Not 'Just Anxiety'

Panel consists of:
Professor Brian Hughes, Psychology - National University of Ireland
Dr Nina Muirhead - Specialist Surgeon, Dermatology, ME sufferer
Sarah Graham - Author, founder of Hysterical Women blog
Dr Shaun Qureshi - Specialist Registrar, Palliative Medicine & Long Hauler
Dr Ian Frayling - Consultant in Genetic Pathology, Long Hauler

https://www.youtube.com/watch?v=AKVWQljUJBQ

ETA: Just watched it now and highly recommend it!! Prof. Hughes and Dr. Muirhead were as always excellent, but the whole panel was really good. Hope this reaches many people.

Copied to Psychologising thread

 

From the American Society of Pediatrics, by Peter Rowe. Helps to have someone who knows what they're talking about. I've seen more concern lately over the impact on children. Saw a video being shared a lot last night, a pediatrician calling delta the worst-case scenario. Not enough to make a difference yet, some countries are still dedicated to herd stupidity.

I've seen some reports also of what difference high adult vaccination rates, that there could be as many as 10-12x as many childhood cases in some states with high adult vaccination rates compared to those with low. Vaccinated adults protect unvaccinated children. This is especially important if the policy remains, probably right, to restrict vaccines to 12+.


Long-Haul COVID-19 in Children and Teens
https://www.healthychildren.org/Eng...Long-Haul-COVID-19-in-Children-and-Teens.aspx


Mentions ME and POTS. Most of the details are otherwise familiar.

Myalgic encephalomyelitis/chronic fatigue syndrome

Your child might be one of the people who weren't hospitalized that have reported the same symptoms as those found in a condition called myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). (This used to be referred to as simply chronic fatigue syndrome.)

They may have severe fatigue, lightheadedness, not feel rested after sleeping, and experience something known as post-exertional malaise (PEM). Symptoms of PEM happen after you do more physical or mental activity than normal, or stand for a long time. Afterward, this can result in days of increased symptoms such as worse fatigue, headaches, and light and sound sensitivity. This is similar to what you'd experience after a concussion.

Brain fog is another extremely common symptom of both ME/CFS and long-haul COVID. In children and adolescents, this can look like they suddenly developed attention-deficit/hyperactivity disorder (ADHD) without the hyperactivity.​

 

Posting here because they are also interested in hearing from people already living with chronic illness. I often see this show referenced as being pretty good and serious. It's on NPR, national radio in the US.

https://twitter.com/user/status/1422647766560485380

 

Part 2 is out. From the description:

This is part 2 of our feature on the psychologisation of chronic illness, specifically Long Covid and ME/CFS. In this film we’ll be covering the tricky topic of sticking up for yourself in the face of healthcare providers trying to tell you it’s all in your head - or at least 'just' anxiety or stress.

This is the panel, interviewed by Dr Asad Khan and myself:

Professor Brian Hughes, Psychology - National University of Ireland
Dr Nina Muirhead - Specialist Surgeon, Dermatology, ME sufferer
Sarah Graham - Author, founder of Hysterical Women blog
Dr Shaun Qureshi - Specialist Registrar, Palliative Medicine & Long Hauler
Dr Ian Frayling - Consultant in Genetic Pathology, Long Hauler

CHAPTERS:
0:00 Introduction
2:20 How Did We Get Here?
5:32 Why Medicine jumps to GET/CBT
8:12 History Repeating Itself
9:45 Positive Future - Paradigm Shift?
14:33 What Can Patients Do?
21:32 Conclusion

https://www.youtube.com/watch?v=GzGr81wnwms

 

Interesting that this is hosted by the American Academy of Pediatrics which historically has not had much to do with ME in kids.

 

Rowe says this is actually a summary of an interview with him done by the American Academy of Pediatrics (AAP).

Comparing and contrasting this summary with the AAP guidance
https://services.aap.org/en/news-ro...caring-for-children-after-covid-19-infection/
on LongCOVID in kids is "interesting", shall we say.... (among other things there is no suggestion of the possibility of OI or PEM and how PEM might impact other treatment....)

 

Fauci has his share of blame but he could choose to say nothing so at least there's that.

https://twitter.com/user/status/1422942192948027404

 

https://twitter.com/user/status/1422558465696882692

 

This thread is about a poll about breakthrough cases and if they lead to long covid. It's just a poll.

Diana Zicklin Berrent on Twitter: "Since the @CDCgov won’t track breakthrough cases and if they lead to #LongCovid @Survivor_Corps decided to step in… We ran a poll of 1735 fully vaccinated adults A thread with our results…" / Twitter

 

Worth reading for the replies. 16 months in and still zero progress made despite the sheer size.

https://twitter.com/user/status/1423017721822949376

 

Neurological Manifestations of COVID

https://sciencebasedmedicine.org/neurological-manifestations-of-covid/


Odd framing on this:

Yet another study found that 55% of hospitalized COVID patient had a co-infection with the Epstein-Barr virus (EBV), the virus that causes chronic fatigue syndrome in some patients. This may be due to an opportunistic reactivation of the dormant virus. It may also be partially responsible for the chronic fatigue many patients with long COVID experience. But further it reflects how much about COVID we still don’t understand – this is a complex and serious infection, and the more rocks we turn over, the more we are finding about its effects.​

Emphasis on the virus. Otherwise a pretty good article, just not very informed of the context.

 

The Link Between COVID-19 and the Mysterious Illness, ME/CFS - Roxana Moslehi

https://www.youtube.com/watch?v=UbxFYhSj3RQ

 

That seems an ill-informed comment on various sounds. The whole piece seems scattershot to me. A lot of numbers and not much nuance.

 

I didn't see or hear any reference to post-COVID patients having lung problems, whereas most people referring to them mention this as an important symptom.

 

Ableds have such overly romanticized ideas about medicine. "Surely they can't ignore this many sick people", they say. I mean it's not as if it's already the case or anything like that. That would be scandalous, right? Except it's not considered a scandal, therefore it's not happening. And so couldn't possibly happen. Certainly not again. Certainly not for the very same reasons with the same motivations and even involving the same people. Nope, unthinkable. QED.


Long Covid cannot be ignored – it’s vital we determine its true scale in society
https://www.independent.co.uk/news/science/long-covid-uk-cases-latest-b1897453.html

Although it kind of answers itself here:

For the NHS in particular, the burden of long Covid – if larger than feared – could prove to be devastating. The ONS estimates that some 380,000 people have been living with the syndrome for a year, with a further 600,000 or so suffering from the condition for less time. It’s unclear how the NHS intends to assess, treat and support these individuals moving forward, with its dedicated long-Covid clinics already in high demand.​

If it's unclear how they intend to assess, not do something, anything, just assess, sometime maybe in the future, that's because they have no intention of doing anything.

It's been 16 months. The time to assess was 12+ months ago. We are even passed the time to react too late since to do anything useful would first require to undo the counterproductive things that have been done with the intent to be counterproductive (flipping reality in one's mind tends to do that). At least where the NHS is concerned.

There is simply no reaction at all, just the same old indifference and failed patterns. This is like people discovering that police exist to enforce the law, not to help people and serve the community, that's just PR. No one has to do anything, certainly not here. People have to choose to do something, and so far they keep choosing no.

 

So, the NYT published an article arguing that people becoming chronically ill from Covid is a risk they tolerate. Who's "we"? Well, those to whom it doesn't happen, obviously. As long as it happens to others, get fracked, basically. Can't miss a champagne brunch for that.

Really missing an understanding that those to whom this happens are dropped dead like they never even existed. Or maybe they do understand it.

https://twitter.com/user/status/1423486748085170190


There are risks we tolerate. People get injured and die in car accidents every single day. And although some will never get the medical care and support they need, most will. It's completely different to tolerate a risk when those victim to that risk are left to fend for themselves on purpose.