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

[Dolphin]

I wonder whether any people who were positive for Covid-19 but were asymptomatic at the start will be followed up and found to have an ME/CFS-like state. This could explain people with ME/CFS who say their illness didn't follow an infection.

I have always wondered whether people who say things like operations triggered their illness actually had ME previously and the operation simply triggered a relapse that made the symptom profile more obvious.

 

[Dx Revision Watch]

Not sure whether this paper has been posted already - let me know if it has, and I'll delete the post.

A PDF is also downloadable:

https://www.sciencedirect.com/science/article/pii/S0277953620306456

Callard, F., Perego, D.E., How and Why Patients Made Long Covid, Social Science & Medicine,

https://doi.org/10.1016/j.socscimed.2020.113426

Revised Date:3 October 2020
Accepted Date:5 October 2020

This is a PDF file of an article that has undergone enhancements after acceptance, such as the addition of a cover page and metadata, and formatting for readability, but it is not yet the definitive version of record. This version will undergo additional copy editing, typesetting and review before it is published in its final form, but we are providing this version to give early visibility of the article. Please note that,during the production process, errors may be discovered which could affect the content, and all legal disclaimers that apply to the journal pertain.© 2020 Published by Elsevier Ltd.

Highlights

• Patients made visible the persistence and heterogeneity of COVID-19 symptoms

• Patients experiencing long-term symptoms (‘long-haulers’) made Long Covid

• Long Covid challenges early clinical and governmental assumptions about Covid

• Knowledge travelled from patients through media to formal health and policy channels

• Patient expertise and knowledge should be incorporated in the pandemic evidence base

Abstract
Patients collectively made Long Covid – and cognate term ‘long-haul Covid’ – in the first months of the pandemic. Patients, many with initially ‘mild’ illness, used various kinds of evidence and advocacy to demonstrate a longer, more complex course of illness than laid out in initial reports from Wuhan. Long Covid has a strong claim to be the first illness created through patients finding one another on social media: it moved from patients, through various media, to formal clinical and policy channels in just a few months. This initial mapping of Long Covid – by two patients with this illness – focuses on actors in the UK and USA and demonstrates how patients marshalled epistemic authority. Patient knowledge needs to be incorporated into how COVID-19 is conceptualised, researched, and treated.

Keywords
Chronic illness COVID-19 expertise long-hauler patient activism patient groups SARS-CoV-2 social media

--------------------------------------------

Nonetheless, Long Covid has been under pressure to conform to or be subsumed within other terms. Some already exist (e.g. post-viral fatigue syndrome, ME/CFS). Others are COVID-19 specific (e.g. ‘post-Covid syndrome’ (BBC, 2020)). Some in the ME/CFS community have suggested some Long Covid cases might morph into ME/CFS (Shepherd, 2020), and there are already lively exchanges both over the relationship between Long Covid and ME/CFS (AUTHORS), over forms of solidarity between two patient communities experiencing ‘chronic viral-induced illness’, and diagnostic terminology for persistent symptoms. It is important, we argue, that Long Covid patients are included in deliberations over terminologies used for long-term symptoms/illness: the history of medicine demonstrates much is at stake in terms of how diseases are modelled and understood (Dumit, 2006).

 

[Snow Leopard]

To me, splitting patients up on the basis of the infection that prompted their symptoms seems as legitimate as lumping them together. At the moment, we just don't know the best way of classifying patients.

The answer is to do both. When a Longcovid case has similar symptoms as ME/CFS, it fits under the same umbrella, but may have a few unique characteristics.

 

[Milo]

The answer is to do both. When a Longcovid case has similar symptoms as ME/CFS, it fits under the same umbrella, but may have a few unique characteristics.

i do not disagree with you, and i would say we are still in the early days, where very little is known but no more than 7 months has elapsed since getting infected. Those who still have lingering symptoms may still be on their way to recovery. Then, persistent and long-term symptoms may not have settled yet following initial ‘convalescence’ from viral attack (which would include lung health and immune health in my mind)

 

[Mij]

We have to wait and see if this illness is a relapsing/remitting type after 'recovering' from the initial virus. It can take months and even a few years to get the full picture.

I was fooled into thinking I recovered after 9 months. I returned to work and normal non stressful activities etc. I relapsed in less than a month.

 

[Leila]

Dr Campbell on LongCovid.

I haven't watched him in a while but he has talked to longhaulers in his previous videos, he says.

Here, he summarizes different studies on the matter and possible patheogeneses.

He also mentions post SARS and how even after a flu people can have sequelae up to 1yr and post intensive care syndrome.

No word on ME or "CFS" though.

 

[rvallee]

If Wessely valued consistency he should be claiming that in Long Covid the precipitating virus has cleared and what is now important is the perpetuating factors. We know what those are. The discussions from the CIBA conference will provide a goldmine of useful quotes. I must find the book. It can't be far away.

I'm wondering if he didn't dare say the stuff he's been selling for decades, and has been awarded for, or if the editor didn't think it was relevant. He is literally famous in part because of his arguing for post-viral illness clearly being somatization.

Either way this is kind of shocking in itself. This man has built his career, has been honored for it, on de-medicalizing ME, selling the idea that it is actually a mere psychological block. Here he had the perfect platform to dispense wisdom earned over decades of practice and research and yet... nothing. Just generic comments that may have been said by any random junior doctor who had never heard about ME or post-viral illness in his life.

It'd be like talking with Wakefield about upcoming COVID vaccines and never bring up any of the MMR controversy. Utterly bizarre in so many ways. These people know their stuff lacks credibility and will only admit to what they think to friendly audiences.

 

[NelliePledge]

Dr Campbell on LongCovid.

I haven't watched him in a while but he has talked to longhaulers in his previous videos, he says.

Here, he summarizes different studies on the matter and possible patheogeneses.

He's also mentions post SARS and how even after a flu people can have sequelae up to 1yr and post intensive care syndrome.

No word on ME or "CFS" though.

Who is he @Leila and do you know if he has any knowledge of ME? Maybe if you’re a regular follower of his and you can manage it you could message him links to the MEAssociation?

 

[rvallee]

(Could be paywalled for some, maybe opening in private/incognito mode should work)


Why Covid-19’s Impact on Health Is a Long-Term Worry

https://www.washingtonpost.com/busi...8333b2-0928-11eb-8719-0df159d14794_story.html

The new coronavirus SARS-CoV-2 is as fast-spreading as it is enigmatic -- with those afflicted experiencing everything from no symptoms to a scratchy throat to life-threatening pneumonia. While it seems that most infections lead to only mild cases of Covid-19, a significant portion of the tens of millions of people who have “recovered” suffer from lingering and sometimes debilitating heart, lung and nervous-system impairments. As researchers try to measure the durability and depth of what’s being called “long Covid,” patient anecdotes and a burgeoning number of post–Covid clinics indicate recovery can be slow and painful, likely meaning the pandemic will sap health resources long after it ends.

Early findings and the demand for specialized post-Covid clinics to help survivors deal with scarred lungs, chronic heart damage, post-viral fatigue and other debilitating conditions indicate a significant prevalence. The social and economic impact would be magnified if people end up enduring years or decades of coronavirus-related disability. Some researchers say the pandemic may spur chronic fatigue syndrome, also called myalgic encephalomyelitis or ME, and neurodegenerative diseases like Parkinson’s.

Post-viral syndromes occur after many viral infections, including the common cold, influenza, HIV, infectious mononucleosis, measles and hepatitis B. Diabetes and other long-term consequences were observed in survivors of severe acute respiratory syndrome, which is caused by a related coronavirus. A Canadian study found 21 health-care workers from Toronto had post-viral symptoms for as long as three years after catching SARS in 2003, and were unable to return to their usual work. Some people who were hospitalized with SARS in Hong Kong still had impaired lung function two years later, a study of 55 patients published in 2010 found. Still, it’s not known yet whether the lessons of SARS are applicable to Covid-19. What’s novel about SARS-CoV-2 is the broad spectrum of symptoms that are being reported and the duration of months not weeks.

I think it's just a re-print of a Bloomberg article that may not be paywalled.

 

[Sly Saint]

For many of us, becoming ill with a virus might put us on the couch for a week or two.

It’s frustrating, but after recovering we can generally get back to the things we’re used to.

But for some people, contracting a viral infection can be life-altering.

It can cause months, years or even a lifetime of debilitating symptoms that drastically reduce their quality of life.

These symptoms, sometimes called “post-viral fatigue syndrome”, have been reported by sufferers of many viral diseases including influenza, glandular fever, SARS, and now COVID-19.

What are the symptoms?

The World Health Organisation has classified post-viral fatigue syndrome under the section of “diseases of the nervous system”. It’s defined as:

…a complex medical condition, characterised by long-term fatigue and other symptoms. These symptoms are to such a degree that they limit a person’s ability to carry out ordinary daily activities.

Despite the word “fatigue”, the symptoms can be broader and more debilitating than simple tiredness.

They can include a sore throat, aches and pains across the body, blood pressure changes, gastric upsets such as irritable bowel syndrome, headaches, sleep disturbance, depression, and dizziness.

More severe neurological symptoms can also occur, including new sensitivities or allergic reactions, and burning or prickling sensations in the limbs. Many COVID-19 patients, for example, report a prolonged loss of smell and taste.

A key feature of the condition is that symptoms can suddenly worsen following only minimal physical or mental activity.

The symptoms are essentially the same as those of chronic fatigue syndrome, also called myalgic encephalomyelitis or ME, which is why the WHO places them under the same category of neurological disorders.

If you went to see a doctor, the clinical assessment for post-viral fatigue syndrome would be the same as for chronic fatigue syndrome.

However, not everybody who gets chronic fatigue syndrome has had a virus, which may explain why both terms persist. There are no current diagnostic tests for post-viral fatigue syndrome, and a diagnosis can only be made based on a series of symptoms.

full article here
https://knowridge.com/2020/10/what-...-condition-affecting-some-covid-19-survivors/

 

[rvallee]

Mayo Clinic appears to be doing a stupid. Again. With "experts" like that... It's called COVID Activity Rehabilitation Program.


Rehabilitation after COVID-19

https://newsnetwork.mayoclinic.org/discussion/rehabilitation-after-covid-19/

"I would say that the most defining feature that we see, for these patients, is fatigue. And not just any fatigue, but a profound fatigue. So, for example, folks will say: 'I take a four to five hour nap after doing something as simple as doing the laundry or taking a one block walk.' It’s just amazing how wiped out folks can feel with just a little bit of activity. I would say that the second symptom that we see quite a bit is shortness of breath, which would make sense. We know that COVID can cause long-term changes in the lungs, like lung diseases and so forth, and that can lead to long-term dyspnea. So that pops up quite frequently. We also see headaches, believe it or not. In about 30% of folks will complain of some sort of neurological long-term complaint, whether it be a headache or dizziness or weakness. But headaches seem to be definitely a part of this picture.

"It is important to note that CARP is not just for folks who are just trying to get back to work, but for everybody who is just trying to get back to their baseline life. And I highlight that because it’s going to be different for everybody, as some folks come into this as marathon runners, some folks come into this as commercial airlines pilots, some people just want to get back to being able to walk the dog around the block. And we work with all of those individuals to understand what their goals are."

Having millions of individualized treatment programs is economically absurd. The very idea should be laughed out of any room it is stated.

"This is also new, and we are essentially building the airplane while flying it at the same time. Our treatments are guided by our previous experiences, again, with the Middle Eastern Respiratory Virus as well as SARS. But I can tell you anecdotally, at this point, that patients are very much enjoying the program. They are seeing benefit. They are reporting better endurance with activities, decreased dyspnea and slowly getting back on their feet. We have had individuals get back to work through the programs. Fortunately, no one has become stuck in this situation, which I’m happy to point out. Most patients are recovering, I would say anywhere from about six to 12 weeks after the onset of their infection."

Appears to be a generic PACE-style rehabilitation approach.

 

[Leila]

Who is he @Leila and do you know if he has any knowledge of ME? Maybe if you’re a regular follower of his and you can manage it you could message him links to the MEAssociation?

He's a nurse teacher and has been covering the pandemic from early on, also been interviewed on main stream media.

Many comments mention ME/CFS and I'm sure he knows "of" it, but I don't know in what way.

Maybe it's better someone from the UK contacts him? I'm not very familiar with their advocacy groups.

 

[NelliePledge]

He's a nurse teacher and has been covering the pandemic from early on, also been interviewed on main stream media.

Many comments mention ME/CFS and I'm sure he knows "of" it, but I don't know in what way.

Maybe it's better someone from the UK contacts him? I'm not very familiar with their advocacy groups.

Ah ok i didn’t realise you’re not in the UK sorry

 

[rvallee]

'Brain fog': the people struggling to think clearly months after Covid

https://www.theguardian.com/world/2...truggling-to-think-clearly-months-after-covid

“Brain fog seems like such an inferior description of what is actually going on. It’s completely crippling. I am unable to think clearly enough to [do] anything,” says Nicholson-McKellar, adding that the experience would be better described as cognitive impairment.

One difficulty in tackling “brain fog” is that the term itself is hazy.

“It is not a medical term, this is what people are putting out there,” says Dr Ross Paterson of the Queen Square institute. “We haven’t defined what these symptoms are and whether they [are] anything measurable because, quite simply, nobody has done the study yet.”

Yes, the fact that there is still no medical term for a highly disabling symptom that has been reported by millions of people for decades is a DAMN SERIOUS PROBLEM. Without fail every time I mentioned this to a physician the reply would be reassurance that I was not incoherent. Ridiculous.

Zandi agrees that difficulties with thinking and concentration have previously been reported by patients with other conditions, including the auto-immune disease lupus.

Bit off-topic but one of the only credible representation of brain fog I have seen in popular media was a character with lupus on the show The Shield. I don't remember the episode but the character was having a flare and it was portrayed so well.

Dr Wilfred Van Gorp, former president of the American Academy of Clinical Neuropsychology, says many Covid survivors he has seen with brain fog also have problems ranging from headaches to difficulties tolerating loud noise and controlling emotions.

“The complaints are very much similar to [those of] post-concussion patients,” he says, adding that there are also similarities to chronic fatigue syndrome.

The similarities to concussion and TBIs have been noted so many times and yet it is not research because despite millions of reports over decades brain fog STILL HAS NO MEDICAL TERM. What an incredible waste of useful information.

And of course because people have to commit to the worst mistakes to the worst possible extent every single time, never learning from anything ever:

There could be psychological factors, too, particularly among Covid survivors who spent time in intensive care. “That is a very frightening thing to have gone through,” says Zandi.

Dr Nick Grey, a consultant clinical psychologist at Sussex Partnership NHS Foundation Trust said terms similar to “brain fog” have previously been used in connection with extreme tiredness, low mood and conditions such as post-traumatic stress disorder (PTSD) – the latter of which is thought to affect about a quarter of Covid survivors who were in intensive care.

And there is another possibility, says Paterson.

“Are people who have been ill, locked away, more anxious, maybe not sleeping well – are they just more prone to being in a migrainous state?”

Grey stresses that both psychological and biological mechanisms could potentially be at play.

“You are going to need quite careful studies to tease apart what is going on there,” he says.

Showing that evidence is completely unnecessary to the practice of evidence-based medicine, because people have attempted to build this causative relation for decades, have failed, and yet people will still readily suggest to go for it for another decades or two, putting everything on hold in the interval because that's apparently how EBM works.

 

[Invisible Woman]

It's a fantastic marketing ploy this whole PTSD business.

If you can label someone with any poorly understood health condition & without a clear prognosis has having PTSD then you can divert them into mental healthcare they don't need, gaslight them by denying their reality and trying to impose your own wishful thinking while denying access to the healthcare they need. Perfect ingredients for a case of PTSD, which is lucky because you happen to know a lot about that.

 

[chrisb]

Interesting to see that term "cognitive impairment". Round about 1990 the term "cognitive dysfunction" was used. This seems an accurate and descriptive term. Somehow we ended up with the term "dysfunctional cognitions", which is, to me at least, meaningless. I have not been able to find any source earlier than Wessely for this. There may be one.

 

[Hutan]

Mayo Clinic appears to be doing a stupid. Again. With "experts" like that... It's called COVID Activity Rehabilitation Program.

(CARP)

"This is also new, and we are essentially building the airplane while flying it at the same time.

Umm, how many times has building an aeroplane while flying it at the same time been a good idea?

The Dubbo post-infectious study showed that most people recover in the weeks after an infection, without any intervention, with good rates of recovery even after 6 months. It seems very likely that the people able to go the distance in a traditional 'exercise and be happy' rehabilitation programme were recovering anyway. But, a great idea for money-making I guess.

A bottom feeder is an aquatic animal that feeds on or near the bottom of a body of water. ... Examples of bottom feeding fish species groups are flatfish (halibut, flounder, plaice, sole), eels, cod, haddock, bass, grouper, carp, bream (snapper) and some species of catfish and shark.

(For non-English speakers - definition of a bottom-feeder:
1: a fish that feeds at the bottom
2: one that is of the lowest status or rank
3: an opportunist who seeks quick profit usually at the expense of others or from their misfortune)

apologies for the late additions to my post

 

[rvallee]

A uniquely American problem but a very large one.


COVID-19 ‘Long-Haulers’ Worry About Coverage, Costs

https://www.pewtrusts.org/en/resear...id-19-long-haulers-worry-about-coverage-costs

She’s seen an infectious disease specialist, a hematologist, a cardiologist, an ear, nose and throat specialist, a physiatrist and an integrative doctor. She has an appointment coming up with a neuropsychologist and another one with a neurologist. She’s had an endoscopy, a colonoscopy, a CT scan, a brain MRI and so many blood tests, she said, “I feel like a human pin-cushion.” She was planning a trip soon to an acupuncturist and has a referral for occupational therapy.

All parts of her body are in rebellion. She has severe, persistent diarrhea, constant nausea, dizziness, paralyzing fatigue, piercing headaches, numbness in her limbs, blurry vision, ringing in her ears and a loss of hearing — an insurmountable deficit for a musician. She gets rashes on her face, finds light and sun painful on her eyes (a condition known as photophobia) and suddenly finds herself feeling uncomfortably cold for no reason. On top of all that is an alarming brain fog.

When this will end — if it will end — none of those doctors and specialists can tell her. Nor can anyone else, not at the federal Centers for Disease Control and Prevention, the National Institutes of Health, the World Health Organization or any other major health organization. As a result, Ceresa has no idea what life holds for her.

Ah, well then, those organizations have a lot to answer for, now don't they? How's that "we hope it doesn't happen" working out for Dr Koroshetz now?

So-called long-haulers like Ceresa pose policy questions that have yet to command much public attention, but daily become more pressing for those with lingering problems. Unable to work, will they have access to health insurance, especially if the Trump administration succeeds in overturning the Affordable Care Act? Will Medicaid be available to them? Will the federal government invest in research and treatments? Will they be eligible for disability benefits?

Exactly how many people fall into the category of long-haulers is uncertain, which is part of the problem, Berrent said. There is very little research yet on the experiences of people who suffer from persistent COVID-19 symptoms.

Not like thousands of people have been begging for this for decades.

Berrent said many of those in her group complain of doctors not believing them. “People are being gaslit by doctors,” she said. “And it’s more women than men. I call it a modern-day version of what they used to call female hysteria.”

The names have changed but their meaning hasn't. Modern day hysteria existing to this day is a civilizational threat.

She said an ER doctor diagnosed her with COVID-19, although three medical doctors have attributed her symptoms to anxiety. But Wu said that both a psychiatrist and a psychologist who examined her told her that mental illness doesn’t explain her symptoms. It was through a COVID-19 support Facebook group that she found others with similar symptoms.

“Disability wasn’t meant for people when they’re 30 or 40, but that’s what we are going to be facing,” she said.

Beyond finding a way to pay for COVID-19 treatment, Berrent said, the federal government should invest heavily in understanding the medical experience of long-haulers with an eye toward developing effective treatments. She wants to see more post-COVID-19 centers established for research and treatment.

 

[Dolphin]

Psychosis, neurocognitive disorders, and other psychiatric disorders (personality change,
catatonia, mania, anxiety or depression, chronic fatigue syndrome, and post-traumatic
stress disorder) have also been reported, especially in younger patients [27]

Tavares C., Takahashi R.E.S., Jardim C.V.P. (2020) Complications of Corona Virus Disease. In: Prabhakar H., Kapoor I., Mahajan C. (eds) Clinical Synopsis of COVID-19. Springer, Singapore. https://doi.org/10.1007/978-981-15-8681-1_8

• First Online 06 October 2020
  
• DOI https://doi.org/10.1007/978-981-15-8681-1_8
  
• Publisher Name Springer, Singapore
  
• Print ISBN 978-981-15-8680-4
  
• Online ISBN 978-981-15-8681-1
  
• eBook Packages MedicineMedicine (R0)

https://link.springer.com/chapter/10.1007/978-981-15-8681-1_8

 

[Amw66]

I caught the tail end of a radio Scotland show today whilst dropping car off at garage. Clare Gerrada was advising that she was very fatigued for 4 months after contracting COVID19, but she got better.

Gist of soundbite being NHS staff affected will have been through significant stress , and we must have the requisite mental health support to help them.
This was the end of a piece and I may have picked it up wrongly, but it sounded very like the perpetuating symptoms trope.

Old wine in new bottles