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https://www.newscientist.com/articl...ing-coronavirus-symptoms-can-last-for-months/

Not a great piece, bit disappointing from New Scientist. Quotes from Paul Garner's earliest BMJ article:



Might send them an email pointing out that most CFS cases have 'a cause', often EBV or similar.
Rejecting a cause and there not being a cause are very different things. But if Garner meant the clinical criteria then that's correct, and thus why AHRQ and NIH rejected the horrible Oxford criteria. It's not a valid definition, a point advocates have always made clearly.

The cause has been rejected for decades. That's not our fault, we objected to that. Blame the jerks who fabricated CFS with that misleading definition. ME has always been defined correctly in that regard, more or less. It's not a complete picture but an infectious trigger has always been a primary suspected cause, it was always a matter of "well, why can't we find the virus then?". Because they're freaking hard to find, is why.
 
More reports of people who thought they were recovered, had a few good weeks and relapsed.

Of course that's not universal but this is smack in the middle of the entire issue of what recovery means, how to assess it, how someone may think they have recovered, that gets marked as a success, only to relapse soon after but this relapse never gets recorded anywhere.

Reports of this are rather sparse but there are enough to be confident it represents a sizable % of cases. And why the entire paradigm of CBT-GET is flawed beyond repair, ignoring symptoms is the worst possible advice to give.

 
https://www.newscientist.com/articl...ing-coronavirus-symptoms-can-last-for-months/

Not a great piece, bit disappointing from New Scientist. Quotes from Paul Garner's earliest BMJ article:



Might send them an email pointing out that most CFS cases have 'a cause', often EBV or similar.

The penultimate paragraph was interesting and hopeful. The last one was thoroughly relatable"

"Until now, much of the response to covid-19 has been about preventing deaths, but hospitals are beginning to establish clinics to follow-up the survivors - including those who are still ill. "I'm certainly hoping that if folks like us can work out some of the biological mechanisms of this disease, there will be therapeutic ways of getting around it," says Altmann.

For Wall, this won't come a moment too soon. "My life has changed so dramatically. I don't know how to adjust to this. I don't know that I want to. I just want my life back.""
 
https://www.newscientist.com/articl...ing-coronavirus-symptoms-can-last-for-months/

Not a great piece, bit disappointing from New Scientist. Quotes from Paul Garner's earliest BMJ article:

Might send them an email pointing out that most CFS cases have 'a cause', often EBV or similar.
Yes, Prof Garner seems to have been on a journey of understanding in the last few weeks. It’s a shame the NS didn’t quote his latest BMJ in which he said, “Health services are largely institutionally prejudiced against people with chronic fatigue and ME and in some cases these attitudes are framing the service response to Covid-19”.

There is also a leading article in this week’s edition of the New Scientist:

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For those who can’t access it online here are some more quotes from the feature article:
Then there is the extreme fatigue. Paul Garner, who had to stop working after coming down with covid-19 in mid-March, likens the feeling to being hit over the head with a cricket bat. “Calling it post-viral fatigue isn’t helpful because the fatigue has been there from day one, and runs alongside some quite nasty, life-threatening conditions,” he says. “It also implies we know what’s happening and that the virus has gone – but we don’t know any of this stuff really.” Now, three months later, he can only work for 20 minutes at a time before needing to lie down, and will soon return to work for an hour a day. Garner says his symptoms are the same as chronic fatigue syndrome, with one difference – CFS is defined as not having a cause. “This clearly has a cause,” he says.

The same applies to longer-term health issues. Around 28 per cent of people who had SARS were still experiencing impaired lung function 18 months after SARS symptoms started, affecting their ability to exercise and their overall quality of life. And a recent meta-analysis suggested that depression, anxiety, insomnia and fatigue were all found in about 10 to 20 per cent of patients in the months following recovery from SARS. “If covid-19 plays out anything like SARS and MERS, there will be quite a bit of this longer-term mental illnesses and fatigue,” says Ed Bullmore, a neuroscientist at the University of Cambridge and author of The Inflamed Mind.

This isn’t just about the psychological trauma of being seriously ill. According to Bullmore, it is a product of our immune system’s response to infection. When our immune cells encounter an invader, they release signalling molecules called cytokines to rally further immune help. Some of these cross into the brain and trigger further cytokine secretion and inflammation. “People who get infected with this new coronavirus often have this hyper-intense inflammatory reaction and being in such an inflamed state will have a negative impact on brain health,” says Bullmore. Specifically, it can damage nerve cells in areas of the brain responsible for emotion regulation.

Inflammation may persist long after SARS-CoV-2 has been cleared from the body. “The healthy response to this virus is to have massive immune cell activation,” says Altmann. “It would not at all surprise me if that could slightly reset the set point of your immune response in a slightly pathological and chronic way.”


I was interested in this bit about gut dysbiosis:
Another source of prolonged inflammation could be the gut. Cells lining the gastrointestinal tract have a receptor called ACE2 on their surface – the same receptor that SARS-CoV-2 uses to gain access to lung cells – which suggests they could become infected and inflamed. Researchers in Hong Kong have also identified an altered gut bacteria profile in people infected with the virus, characterised by large numbers of harmful bacteria and the depletion of beneficial ones. These changes persisted even after the virus had been cleared from the body.


Further studies on the aftermath of covid-19 are urgently needed. “We are desperate to get our lab studies in place to understand some of these longer-term symptoms and the consequences of this infection,” says Altmann. “I’ve had lots of contact with people who are really destroyed by this. They never expected it to be a long-term chronic problem.”

Until now, much of the response to covid-19 has been about preventing deaths, but hospitals are beginning to establish clinics to follow-up the survivors – including those who are still ill. “I’m certainly hoping that if folks like us can work out some of the biological mechanisms of this disease, there will be therapeutic ways of getting around it,” says Altmann.

For Wall, this won’t come a moment too soon. “My life has changed so dramatically. I don’t know how to adjust to this. I don’t know that I want to. I just want my life back.”
 
From a quote in @Robert 1973 'post above

And a recent meta-analysis suggested that depression, anxiety, insomnia and fatigue were all found in about 10 to 20 per cent of patients in the months following recovery from SARS. “If covid-19 plays out anything like SARS and MERS, there will be quite a bit of this longer-term mental illnesses and fatigue,” says Ed Bullmore, a neuroscientist at the University of Cambridge and author of The Inflamed Mind.

This isn’t just about the psychological trauma of being seriously ill. According to Bullmore, it is a product of our immune system’s response to infection.

Let's not forget the upheaval when a sudden illness that everyone assumes is temporary turns into a prolonged struggle that completely buggers up your life affecting your career, finances, relationships etc.

That's a massive stress right there just when you are least able to deal with it. It comes with a whopping side order of judgemental criticism from colleagues, friends and the medical profession just when you need support the most.

All because they assume a short term illness when we already knew 50+ years ago that some viral illnesses have very prolonged recovery where the patient should be allowed to rest.
 
Risk of never fully recovering after coronavirus ‘very real,’ scientists say

https://globalnews.ca/news/7111094/coronavirus-scientists-health-problems/

Scientists are only starting to grasp the vast array of health problems caused by the novel coronavirus, some of which may have lingering effects on patients and health systems for years to come, according to doctors and infectious disease experts.
In addition to respiratory distress, patients with COVID-19 can experience blood clotting disorders that can lead to strokes, and extreme inflammation that attacks multiple organ systems. The virus can also cause neurological complications that range from headache, dizziness and loss of taste or smell to seizures and confusion.
While much of the focus has been on the minority of patients who experience severe disease, doctors increasingly are looking to the needs of patients who were not sick enough to require hospitalization, but are still suffering months after first becoming infected.
Studies are just getting underway to understand the long-term effects of infection, Jay Butler, deputy director of infectious diseases at the U.S. Centers for Disease Control and Prevention, told reporters in a telephone briefing on Thursday.

“We hear anecdotal reports of people who have persistent fatigue, shortness of breath,” Butler said. “How long that will last is hard to say.”
Dr. Igor Koralnik, chief of neuro-infectious diseases at Northwestern Medicine, reviewed current scientific literature and found about half of patients hospitalized with COVID-19 had neurological complications, such as dizziness, decreased alertness, difficulty concentrating, disorders of smell and taste, seizures, strokes, weakness and muscle pain.
Koralnik, whose findings were published in the Annals of Neurology, has started an outpatient clinic for COVID-19 patients to study whether these neurological problems are temporary or permanent.

Kahn sees parallels with HIV, the virus that causes AIDS. Much of the early focus was on deaths.

“In recent years, we’ve been very focused on the cardiovascular complications of HIV survivorship,” Kahn said. (Reporting by Julie Steenhuysen; additional reporting by Caroline Humer and Nancy Lapid in New York; Editing by Bill Berkrot)
 
The Conversation June 24th - What doctors know about lingering symptoms of coronavirus by prof William Petri

The article discusses several serious symptoms. Interesting that it's only in connection with post-infection fatigue prof Petri believes mental health intervention to COVID-19 survivors will likely be important..

While again it may be too early to tell, in the case of the original SARS outbreak almost half of survivors interviewed more than three years after recovery complained of fatigue.

The Centers for Disease Control and Prevention criteria for diagnosis of the chronic fatigue syndrome were met in a quarter of COVID-19 patients. It will likely be important to target mental health interventions to COVID-19 survivors to help them deal with a prolonged convalescence characterized by fatigue.


The article was reposted today by ScienceAlert
 
The Guardian:
https://www.theguardian.com/comment...virus-long-haulers-infectious-disease-testing

The coronavirus 'long-haulers' show how little we still know

Debbie Bogaert
My Covid-19 symptoms lasted for months. As an infectious disease specialist, I know the importance of widespread testing.
To a physician scientist working on understanding the burden of respiratory infections, coronavirus is the ultimate professional challenge that might come by perhaps once in your career. However, I was not prepared for it becoming one of my biggest personal challenges too.

During the early stages of the outbreak, I came down with mild Covid-19-like symptoms. Though I was slightly worried this would hinder my ability to contribute to the immediate professional battle against this virus, I also anticipated I would be back in business within a week or two. How wrong I was – I became what we now call a Covid-19 “long-hauler” – a patient with initially mild symptoms of likely Covid-19, who would go on to experience a range of sometimes severe symptoms for a prolonged period of time.

The Covid Symptom Study, undertaken by King’s College London, has revealed that 10% of all Covid-19 patients report symptoms for at least three weeks. Surprisingly, people in this so-called Covid tail are on average younger,. Most report having been previously healthy, and show relatively mild symptoms in the initial phase of illness. But they continue to experience symptoms such as fatigue, headache, cough, shortness of breath, chest pain, increased heart rates and gastrointestinal and neurological symptoms for weeks or even months following the initial symptoms; often these symptoms might come and go repeatedly.
[...]
 
I've added the following comment (pending approval) below Paul Garner's BMJ blog:

'Professor Garner writes: "Health services are largely institutionally prejudiced against people with chronic fatigue and ME, and in some cases these attitudes are framing the service response to covid-19".

In an article published in the BMJ in 1988 Anthony David, Simon Wessely and Anthony Pelosi wrote: "we believe that understanding of the postviral fatigue syndrome has been hindered by doctors who suffer from the condition also researching it. Though medical training affords insight into the subjective effects of illness, it is axiomatic that objectivity is not similarly enhanced." (https://www.bmj.com/content/296/6623/696)

In a subsequent letter to the BMJ the same authors wrote: "Research done by sufferers from postviral fatigue syndrome is a delicate issue about which we thought deeply before expressing an opinion. Reviews by Parish' and others are valuable, but clinical research should be carried out by those without the inevitable, albeit unconscious, biases caused by suffering from this condition. Dr Hughson's comparison with Percival Pott is misleading. Pott did not have to consider the complexities of mind-body interaction when contemplating his fractured tibia." (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2545791/pdf/bmj00284-0059d.pdf)

Dr Wessely went on to write numerous papers on post-viral fatigue and ME/CFS. NHS services for people with ME/CFS largely reflect his view that illness is perpetuated by unhelpful illness beliefs and de-conditioning which can be reversed by CBT and GET. This view was rejected by the US Centres for Disease Control and Prevention in 2017 (see: https://www.virology.ws/2017/07/10/trial-by-error-the-cdc-drops-cbtget/).'


 
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