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

[rvallee]

From ‘brain fog’ to heart damage, COVID-19’s lingering problems alarm scientists

https://www.sciencemag.org/news/202...ovid-19-s-lingering-problems-alarm-scientists

Despite the novelty of SARS-CoV-2, its long-term effects have precedents: Infections with other pathogens are associated with lasting impacts ranging from heart problems to chronic fatigue. “Medicine has been used to dealing with this problem” of acute viral illness followed by ongoing symptoms, says Michael Zandi, a neurologist at UCL.

Yeeeeeaaaah, I'm gonna go ahead and strongly disagree with that. Maybe "used to" telling people to get lost. At the very least it has been very selective in "dealing with".

Separately, doctors are starting to see a class of patients who, like Akrami, struggle to think clearly—another outcome physicians have come upon in the past. After some severe viral infections, there are “those people who still don’t feel quite right afterward, but have normal brain scans,” Brown says. Some neurologists and patients describe the phenomenon as “brain fog.” It’s largely a mystery, though one theory suggests it’s similar to a “postviral fatigue related to inflammation in the body,” Brown says.

Could that be happening here? “Who knows, really?” Brown asks. “These patients need to be followed.”

"Medicine has been used to". Also "nobody knows". Anybody see a problem here? I mean, now there is a problem because it can't be brushed aside but surely the fact of having done nothing and have nothing more than ¯\_(ツ)_/¯ to offer is a problem in itself? One that needs systemic fixes?

The most bedeviling and common lingering symptom seems to be fatigue, but researchers caution against calling it chronic fatigue syndrome. That’s “a specific diagnosis,” Marks says. “You might have fibrosis in the lungs, and that will make you feel fatigued; you might have impaired heart function, and that will make you feel fatigued.” Trying to trace symptoms to their source is critical to understanding and ultimately managing them, he says.

Not very promising on the whole "learning from the past" thing. If that thinking right here had been applied decades ago we wouldn't be in this mess.

Since that small but very remarkable blip of a post-viral cohort is "alarming", what does that make of a patient population many times larger, made up of tens of millions, with the same problems? What was is again that we saw recently in how they perceive us? "Laughable"? "Made-up"? "Conspiracy"? Yeah, definitely "used to deal with this problem".

Anyway, it's a good article and signals progress. But it's frustrating to see people describe a bunch of trees, saying they know all about bunches of trees, but can't see the forest or know anything about what a forest is.

 

[cassava7]

Anyway, it's a good article and signals progress. But it's frustrating to see people describe a bunch of trees, saying they know all about bunches of trees, but can't see the forest or know anything about what a forest is.

The article is excellent and it's amazing to see so much research into the sequelae of COVID19. My hope is that the pathophysiology of these long-term symptoms, although caused by COVID19, does not differ much from that of long-term symptoms in other viral infections (e.g. EBV) -- and thus the ongoing research could very well teach us a lot about ME. After all, fatigue, brain fog, reduced tolerance to exertion (hint for PEM?), even dysautonomia are all being widely reported.

 

[Art Vandelay]

Post-covid patients in Australia have this nonsense to look forward to:

Post-infectious IBS, at least the kind caused by viruses that have been around longer than the new coronavirus, is tricky but not impossible to treat, Dr Ho says.

"We know that modification of brain chemistry, of neurochemistry can be helpful," he says, adding that mindfulness, cognitive therapy and hypnotherapy have all been shown to help, in addition to dietary measures.

https://www.abc.net.au/news/health/...zBxQm0-oVUWy3hPjq5T5ri1ltUv0H3hCqctWEteCbE6rs

I collected an IBS diagnosis last year. I knew getting the diagnosis wouldn't make my life any better or help me access better treatments.

 

[Snow Leopard]

https://www.sciencemag.org/news/202...ovid-19-s-lingering-problems-alarm-scientists

At the same time, the sheer breadth of complications linked to COVID-19 is mind-boggling. In late April, Akrami collaborated with Body Politic, a group of COVID-19 survivors, to survey more than 600 who still had symptoms after 2 weeks. She logged 62 different symptoms and is now readying the findings for publication and developing a second survey to capture longer term ailments. “Even though it’s one virus, it can cause all different kinds of diseases in people,” says Akiko Iwasaki, an immunologist at Yale University who is studying lingering effects on the immune system.

Who was it who said the more symptoms a patient reports, the more likely psychological factors are involved in perpetuation of the illness?

 

[Sly Saint]

One of our most surprising findings was that of the 62 symptoms, only two were statistically significant (within this group) between the positively-tested respondents and the negatively-tested respondents: loss of smell and loss of taste. All other symptoms, including severe ones such as shortness of breath, tightness of chest, elevated temperature and fever, GI symptoms, lung burn, elevated heart rate and tachycardia, and dizziness, were not different between these groups. This could indicate that current tests are not picking up on a subset of COVID-19 patients, and further investigation into whether tests are accurately capturing the presence of the virus is encouraged.

The symptoms section had a write-in question to add any symptoms other than the above list that respondents thought were related to COVID-19. Over 200 other symptoms were reported.


The most common written in symptoms mentioned multiple times included (starting from most common): chest pain, tinnitus, heart palpitations, back pain (both upper and lower), stiff neck/neck pain, coldness in extremities and other body parts, eye burning, joint pain, diarrhea, kidney pain, muscle spasms, fizzing/gurgling in lungs, spleen pain/upper left abdominal pain under the rib, metallic taste, sinus congestion, dry nose/mouth/throat, leg pain, lump in throat, body vibration/tingling, and flare-ups of pre-existing conditions (including endometriosis, tendonitis, stomach ulcers, breast tissue that had undergone radiation, herpes, and shingles).


Other notable but less commonly written-in symptoms include petechiae, changes to the ear/ear canal (including pressure, blockage, burning, and swelling), being woken up by shortness of breath, migraines, yeast infections/thrush, mouth ulcers, low temperature, exercise intolerance, rib pain, spine pain, changes in menstruation, high blood pressure, changes to the eye (including eye discharge and redness on the outside of the eye), costochondritis, constipation (one case lasting four weeks), bowel obstruction, gassiness/bloating, and seizures/fainting.


Other sensory symptoms mentioned included sensitivity to light, blurry vision, double vision, sensitivity to noise, phantom smells, enhanced sense of smell, and loss of hearing (in one case, for three weeks).

Symptoms Reported Week Over Week

The symptoms reported by all respondents at any time are listed in order of percentage affected. For visual simplicity we have not included confidence intervals on the mean values. The top 10 symptoms reported over the entire 8 weeks by respondents are: Shortness of Breath (Mild), Tightness of Chest (Mild), Fatigue (Moderate), Fatigue (Mild), Chills or Sweats, Body Aches (Mild), Dry Cough, Elevated Temperature (98.8-100), Headache (Mild), and Brain Fog/Concentration Challenges.

 

[Trish]

We have a thread on the post Covid survey referred to here:
What Does COVID-19 Recovery Actually Look Like? An Analysis of the Prolonged COVID-19 Symptoms Survey by Patient-Led Research Team

 

[Dolphin]

https://www.sciencemag.org/news/202...ovid-19-s-lingering-problems-alarm-scientists

“We expected to see a lot of long-term damage from COVID-19: scarring, decreased lung function, decreased exercise capacity,” says Ali Gholamrezanezhad, a radiologist at the Keck School of Medicine at the University of Southern California who in mid-January began to review lung scans from COVID-19 patients in Asia. Hundreds of scans later, he has concluded that COVID-19 ravages the lungs less consistently and aggressively than SARS did, when about 20% of patients sustained lasting lung damage. “COVID-19 is in general a milder disease,” he says.

Good news in general but also probably also for us as it may mean more of the long-term problems are more ME/CFS-like.

Based on experience with other viruses, doctors can “extrapolate and anticipate” potential long-term effects of COVID-19, says Jeffrey Goldberger, chief of cardiology at the University of Miami. Like SARS-CoV-2, some other viruses, such as Epstein-Barr, can damage heart tissue, for example. In those infections, the organ sometimes heals completely. Sometimes, scarring is mild. “Or,” Goldberger says, “it could be severe and lead to heart failure.”

I’ve never heard this mentioned in relation to ME/CFS which followed EBV. I wonder could this happen in some ME/CFS patients.

 

[Robert 1973]

https://www.theguardian.com/comment...rs-russian-meddling-is-at-the-heart-of-brexit

 

[MeSci]

https://www.theguardian.com/comment...rs-russian-meddling-is-at-the-heart-of-brexit

I thought David Oddie's name rang a bell - he was involved with the East Cornwall Green Party - as was I - in 1989!

 

[hinterland]

https://www.sciencemag.org/news/202...ovid-19-s-lingering-problems-alarm-scientists



Who was it who said the more symptoms a patient reports, the more likely psychological factors are involved in perpetuation of the illness?

IIRC Simon Wessely said the greater number of symptoms in the Canadian Consensus Criteria were more likely to capture mental health disorders than the CDC definition, and, contrary to what advocates for the CCC believed, would not identify CFS cases more accurately.

But in general it’s a well used rule of thumb by the time-pressed medic, that the greater the number of ‘non-red flag’ (or non specific) symptoms a patient reports, the higher the index of suspicion for somatisation.

 

[Sly Saint]

Article in FT
Fatigue plagues thousands suffering post-coronavirus symptoms

Referred to as long-haul Covid, longcovid, or tentatively by the medical community as ‘post-Covid syndrome’, this poorly understood condition is being closely associated with chronic fatigue syndrome, or ME. But it has already become mired in some of the controversies that have dogged that illness for decades.

As a growing number of sufferers from around the world have turned to online support groups on Facebook, Twitter and Slack, researchers are now trying to determine the cause and how it might be treated. Recent analysis by the Covid Symptom Study suggested that as many as one-in-10 people with Covid-19 have been sick for more than three weeks after symptoms first emerge. Some of the most pernicious problems faced by the group of long-haulers are chronic fatigue, high temperature, insomnia, headaches, brain fog, tingling sensations and dizziness.

full article here
https://www.ft.com/content/8a8c9630-7cce-417a-8732-f0589009be14

 

[Robert 1973]

FT article:
Fatigue plagues thousands suffering post-coronavirus symptoms

‘Long-haul Covid’ has already become mired in controversy over causes and treatment
https://www.ft.com/content/8a8c9630-7cce-417a-8732-f0589009be14

I managed to access this article for free by using an incognito browser and clicking on the link from the FT Facebook page:


Selected quotes from article:

Referred to as long-haul Covid, longcovid, or tentatively by the medical community as ‘post-Covid syndrome’, this poorly understood condition is being closely associated with chronic fatigue syndrome, or ME. But it has already become mired in some of the controversies that have dogged that illness for decades.

Recent analysis by the Covid Symptom Study suggested that as many as one-in-10 people with Covid-19 have been sick for more than three weeks after symptoms first emerge. Some of the most pernicious problems faced by the group of long-haulers are chronic fatigue, high temperature, insomnia, headaches, brain fog, tingling sensations and dizziness

The causes of the reported symptoms are unproven and contentious. While some point to post-viral syndrome — tiredness and weakness that lingers after a person fights off a viral infection — as a likely explanation, others are adamant that longcovid has unique characteristics. “There’s pathology here that’s not being investigated,” said Clare Rayner, a consultant in occupational medicine in the UK, pointing out that it seems to affect people’s brain, heart and lungs for months.

John Geddes, professor of epidemiology at the University of Oxford, believes that protracted illness is likely to be caused by the virus getting into the nerve cells of the brain. Others believe that an elevated immune response to the virus may be damaging the cells in key parts of the body.

Post-viral syndromes are already mired in controversy. For decades, people suffering from chronic fatigue have felt their illness has been dismissed by medical professionals as psychological rather than physical ailments. Death threats have been sent by members of the ME community to academics espousing therapeutic treatments for the illness, according to one expert in the field.

The Royal College of GPs has called on the UK government to provide additional funding to help tackle the problem. Members of longcovid support groups have also written to the government demanding more research and improved medical support for sufferers. “The government has to wake up and realise we might be dealing with a really big problem here, affecting hundreds of thousands,” said Ondine Sherwood, who contracted Covid-19 and has been suffering from fatigue and fever since the end of March.

Disappointing to see the “death threats” allegation raised again by an anonymous “expert in the field”. If such threats have been made by individuals they do not represent the ME community, and I’m sure we would all condemn them, just as we condemn the flawed science and the unethical smearing of the ME community by those who are paid to do us no harm. Unfortunately there is no mention of the bad science and unethical behaviour of these so-called experts which have resulted in very real harms to patients.

[edit: crossed with @Sly Saint’s post above]

 

[Mithriel]

https://www.sciencemag.org/news/202...ovid-19-s-lingering-problems-alarm-scientists
Good news in general but also probably also for us as it may mean more of the long-term problems are more ME/CFS-like.

I’ve never heard this mentioned in relation to ME/CFS which followed EBV. I wonder could this happen in some ME/CFS patients.

We also know that enterovirus has a predilection for nerve cells and the heart. Enteroviral endocarditis has been well researched in Japan for instance. We should have had decent research into cardiac problems with ME for years. Heart problems in people with ME are too easily dismissed as a result of our sedentary lifestyle.

 

[chrisb]

Well, if an expert in the field said it, it must be true. If the charge is to be made, let us have some specifics.

Do journalists no longer believe in Who, What, Where, When, Why?

 

[Robert 1973]

I missed this gem the first time I read the FT article:

“People are stuck in bed and they’re not able to go to work or look after their kids,” said Timothy Nicholson, a neuropsychiatrist at King’s College London who is studying the phenomenon after suffering from post-coronavirus symptoms himself.”

“We’re trying to ensure we don’t get a schism between mental and physical health this time but we’re still struggling with that legacy of dualism,” said Dr Nicholson. “Lots of people feel that their symptoms aren’t believed.”

I wonder if Dr Nicholson is aware that his KCL colleague and “expert in the field” once claimed: “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)

 

[Mithriel]

IIRC Simon Wessely said the greater number of symptoms in the Canadian Consensus Criteria were more likely to capture mental health disorders than the CDC definition, and, contrary to what advocates for the CCC believed, would not identify CFS cases more accurately.

But in general it’s a well used rule of thumb by the time-pressed medic, that the greater the number of ‘non-red flag’ (or non specific) symptoms a patient reports, the higher the index of suspicion for somatisation.

This really annoys me. If you ask people with MS about the symptoms they experience it makes a long list, the difference is that doctors stop asking at the main points.

Diabetes is diagnosed by high blood sugars but if you look online there is a long catalogue of other things from facial discolouration to high ferratin levels. The there are the comorbidities like candida and bladder infections up to heart disease and nerve pain.

If you are diagnosed you do not list symptoms, you only have to do that with a doctor who does not understand ME. If we could go in and say "I have PEM" and that was enough for the GP to understand our lives we would not need to give a long list either.

 

[Esther12]

I missed this gem the first time I read the FT article:

...

I wonder if Dr Nicholson is aware that his KCL colleague and “expert in the field” once claimed: “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)

I expect that the BPS group are going to work to use C-19 as a way of entrenching their own positions, and encouraging the view that the problems around ME/CFS are a results of patients' misunderstandings of their sophisticated work.

 

[MeSci]

Also the tedious use of the term "people suffering from chronic fatigue..." (no 'syndrome', although CFS is of course not the term favoured by most sufferers).

 

[rvallee]

FT article:
Fatigue plagues thousands suffering post-coronavirus symptoms

‘Long-haul Covid’ has already become mired in controversy over causes and treatment
https://www.ft.com/content/8a8c9630-7cce-417a-8732-f0589009be14

I managed to access this article for free by using an incognito browser and clicking on the link from the FT Facebook page:


Selected quotes from article:










Disappointing to see the “death threats” allegation raised again by an anonymous “expert in the field”. If such threats have been made by individuals they do not represent the ME community, and I’m sure we would all condemn them, just as we condemn the flawed science and the unethical smearing of the ME community by those who are paid to do us no harm. Unfortunately there is no mention of the bad science and unethical behaviour of these so-called experts which have resulted in very real harms to patients.

[edit: crossed with @Sly Saint’s post above]

This article is so weird. It brings up the "controversy" without stating any of its nature or components, the simple fact that it is simply the presence of deniers who have dominated the field for decades and whose recommendations have been used in practice to disastrous outcomes, but bizarrely suggests not to discount the purveyors of the controversy. Or something. The whole dualism is not any more relevant than the precise nature of HIV deniers' beliefs is relevant to the fact that there is no real controversy over this, just weird people pushing a denial belief system. It has no place whatsoever in that article.

Total cheap shot of poor journalism to cite vague threats, debunked by a tribunal decision. Anonymous, of course, Professor Equipoise. What cheap cowards these people are.

 

[rvallee]

From the memory hole. History doesn't repeat itself but it says the same things.


Swine flu fallout: many suffer nagging symptoms long after H1N1 subsides

https://www.thestar.com/life/health...agging_symptoms_long_after_h1n1_subsides.html


As is tradition, medicine only see these things when they happen in front of their eyes, otherwise they may as well not exist. The only noted cases of ME outbreaks happened in health care settings, not because they happened more often but because it's the only place they can get noticed. I really would like for medicine to master object permanence, it would help so many people.

The Public Health Agency of Canada didn’t keep records on the number of Canadians who contracted mild cases of H1N1, mainly because most of them simply stayed home while recovering.

Had the post-COVID-19 community not connected this much over the Internet medicine would not have been aware of this problem until years, if ever.

The infection rate peaked in early November, but there’s plenty of anecdotal evidence to suggest H1N1 kept tormenting the country well into 2010.

“Sometimes it takes weeks to a couple of months for people to get ... back on their feet,” said Gardam.

“We had an otherwise young and healthy population really getting hit quite hard with this,” said Gardam. “Unfortunately, this is the age group that thinks they are pretty much immune to everything. ... That’s the main reason why governments were pushing the vaccine.”

There are no comparable statistics for those who suffered from mild symptoms.

What do we call people who are surprised every time they see the same thing? Apparently the same as whoever graduated last in medical school. I know this is the fault of a small group of people but come on, there are higher expectations here. If bridges kept falling all the time civil engineers would react and fix the underlying causes, not just continue to build bridges that keep falling and killing people.