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

[rvallee]

Follow-up of adults with non-critical COVID-19 two months after symptoms' onset

https://www.clinicalmicrobiologyandinfection.com/article/S1198-743X(20)30606-6/fulltext

Descriptive clinical follow-up (days 7, 30 [D30] and 60 [D60]) of 150 patients with non-critical COVID-19 confirmed by RT-PCR at Tours University Hospital from March 17 to June 3, 2020, including demographic, clinical and laboratory data collected from the electronic medical records and by phone call. Persisting symptoms were defined by the presence at D30 or D60 of at least one of the following: weight loss ≥ 5%, severe dyspnea or asthenia, chest pain, palpitations, anosmia/ageusia, headache, cutaneous signs, arthralgia, myalgia, digestive disorders, fever or sick leave.

At D30, 68% (n=103/150) of patients presented at least one symptom and 66% (n=86/130) at D60, mainly anosmia/ageusia: (59% (n=89/150) at symptom onset, 28% (n=40/150) at D30 and 23% (n=29/130) at D60). Dyspnea concerned 36.7% (n=55/150) patients at D30 and 30% (n=39/130) at D60. Half of the patients (n=74/150) at D30 and 40% (n=52/130) at D60 reported asthenia. Persistent symptoms at D60 were significantly associated with age 40 to 60 years old, hospital admission and abnormal auscultation at symptom onset. At D30, severe COVID-19 and/or dyspnea at symptom onset were additional factors associated with persistent symptoms.

Up to 2 months after symptom onset, two thirds of adults with non-critical COVID-19 had complaints, mainly anosmia/ageusia, dyspnea or asthenia. A prolonged medical follow-up of patients with COVID-19 seems essential, whatever the initial clinical presentation.

Seems like an outlier at such high %.

We controlled this potential reporting bias using standardized questionnaires administrated by trained investigators (supplementary data S1 and S2). However, subjective complaints are worth the attention and focus of the medical community and need to be taken into account in the medical care. Moreover, several infectious diseases such as primary cytomegalovirus or Epstein-Barr virus infection are known to be associated with persistent symptoms, without necessarily any obvious anomaly on physical examination (20, 21, 22).

 

[alktipping]

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/



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

Appears to be a generic PACE-style rehabilitation approach.

"we are building an airplane whilst flying it " tells everyone just how clueless/lazy this group are .

 

[Andy]

 

[Trish]

Hmm well I suppose you can't say much in a short letter, and he gets the point across that CBT/GET are the wrong approach. But I hate ME being described in terms of fatigue. And my objection to GET/CBT is they dont work and cause harm.

 

[Sarah]

It's good to see a letter in The Times on this. However, I think the last sentence could have been phrased better. Neil Riley wrote:

'It is sad that it has taken a pandemic to persuade the medical profession to take long-term viral infection seriously.'

The medical profession does generally take long-term viral infection seriously where it is established, but I think it's fair to say that it isn't established or thought likely to be in future in ME/CFS, and so far as I understand it, people with post/long covid are not testing positive for SARS-CoV-2.

It's not clear whether he actually intended to write something to the effect, 'take long-term effects after viral infection seriously' instead.'

 

[Tom Kindlon]

 

[Dolphin]

 

[Kalliope]

Dr. Daniel Griffin has provided a weekly clinical update in the podcast This Week In Virology during the pandemic which has been truly interesting and educational. He is now more often including information about the post acute phase and in the last episode he spoke more detailed of what they can offer these patients.

These segments from dr. Griffin have become very popular for clinicians all over the world, so it worries me when he at 27.23 says:

…gradually increasing the exercise for this post exertional malaise that they get. Sometimes working with physiotherapists to help with that as well.

I hope there will be a discussion soon about post Covid-19 and an explanation of what PEM entails, as well as graded exercise vs pacing.

Link to episode:
https://www.microbe.tv/twiv/twiv-671/

 

[Andy]

 

[Andy]

 

[Kalliope]

 

[Robert 1973]

For some reason Professor Greenhalgh, who appears to be taking a lead on long-covid, has deleted her tweet congratulating Dr Gerada on being made a dame so I’ve attached a screenshot.

As far as I’m aware she still hasn’t made any comment on the similarities between long-covid and ME/CFS, or made any comment on the the appropriateness of applying the CBT/GET models to long-covid.

Given her negative portrayal of ME patients‘ involvement in research (see BMJ article) and her praise for Dr Gerada and her husband, this makes me a little concerned about what services for people with long COVID may look like. My guess would be the same old therapies rebranded to get rid of the words people don’t like – a bit like the “graded activity or pacing” that Prof Chew-Grahm talked about in the RSM webinar that @dave30th wrote about (https://www.virology.ws/2020/10/01/tria-by-error-royal-society-of-medicine-webinar-on-long-covid/).

Having said that, lots of long COVID patients seem to have a lot of confidence in Prof Greenhalgh, so I hope I’m completely wrong and she does a great job. Maybe she will come out and say that CBT and GET are neither effective nor safe treatments for ME/CFS and they should not be applied to patients with long-Covid.

 

[chrisb]

From where has Alwan got the idea that when people say Long covid is a post -viral syndrome that they imply that post-viral syndromes are to be dismissed with the added adverb "only"? There seems to be something seriously askew with her thinking on the subject.

She might end up having to play the Ferrier Defence.

 

[Sean]

My guess would be the same old therapies rebranded to get rid of the words people don’t like – a bit like the “graded activity or pacing” that Prof Chew-Grahm talked about

Yep. The marketing spin is being churned up as we speak. Not that I expected any better from them.

If Trish Greenhalgh, et al, are genuinely serious about doing the best they can for their patients, then they must stop being so chummy with the establishment hacks who got us into this mess, and start properly holding them to account.

If the UK medical establishment wishes to retain what is left of its credibility on this stuff then these appalling BPS clowns must be sidelined, and pronto. They are simply a complete disaster.

 

[Snowdrop]

then they must stop being so chummy with the establishment hacks who got us into this mess, and start properly holding them to account.

That's the thing isn't it. They're all chums. At the bottom of it all there's that. How will they ever be held to account. Even those not so close to the core dare not cause too much of a stir.
Politeness above all. Important people with archaic titles.

And as a tangent: social justice must have an altogether different meaning to the privileged. I suppose it's something to be imposed on those needing it whether it suits or not. Because they care. Delusions. Aren't they a symptom of some kind?

 

[rvallee]

Today in: isn't it kinda bad that medicine still doesn't have a name for that?!

I still remember the day that made me decide to go back to the hospital (where I was chucked off to depression which was a waste but whatever) is the intense cognitive problems I was experiencing, so bad I lost the ability to read for weeks, and on that day I was trying to make myself a simple breakfast and could barely manage to think through the 5-6 easy steps necessary, it was just too complicated. I'm a programmer, I'm used to things that take 50-60 steps, all interrelated. So incredibly frustrating.


‘I Feel Like I Have Dementia’: Brain Fog Plagues Covid Survivors

https://www.nytimes.com/2020/10/11/health/covid-survivors.html

Lisa Mizelle, a veteran nurse practitioner at an urgent care clinic who contracted the virus in July, finds herself forgetting routine treatments and lab tests, and has to ask colleagues about terminology she used to know automatically.

“I leave the room and I can’t remember what the patient just said,” she said, adding that if she hadn’t exhausted her medical leave she’d take more time off.

It’s becoming known as Covid brain fog: troubling cognitive symptoms that can include memory loss, confusion, difficulty focusing, dizziness and grasping for everyday words. Increasingly, Covid survivors say brain fog is impairing their ability to work and function normally.

“There are thousands of people who have that,” said Dr. Igor Koralnik, chief of neuro-infectious disease at Northwestern Medicine in Chicago, who has already seen hundreds of survivors at a post-Covid clinic he leads. “The impact on the work force that’s affected is going to be significant.

Scientists aren’t sure what causes brain fog, which varies widely and affects even people who became only mildly physically ill from Covid-19 and had no previous medical conditions. Leading theories are that it arises when the body’s immune response to the virus doesn’t shut down or from inflammation in blood vessels leading to the brain.

In a soon-to-be-published survey of 3,930 members of Survivor Corps, a group of people who have connected to discuss life after Covid, over half reported difficulty concentrating or focusing, said Natalie Lambert, an associate research professor at Indiana University School of Medicine, who helped lead the study. It was the fourth most common symptom out of the 101 long-term and short-term physical, neurological and psychological conditions that survivors reported. Memory problems, dizziness or confusion were reported by a third or more respondents.

Mr. Reagan, 50, who spent five days in and out of hospitals, initially resumed work as a vascular specialist for a company that makes stents and catheters.

But finger tremors and seizures, neurological symptoms that sometimes accompany brain fog, meant “there is no way I’m going to go into surgery and teach a doctor how to suture an artery,” he said.

“The simplest answer is people still have persistent immune activation after the initial infection subsided,” said Dr. Avindra Nath, chief of infections of the nervous system at the National Institute of Neurological Disorders and Stroke.

Inflammation in blood vessels, or cells lining the vessels, may be involved, said Dr. Serena Spudich, chief of neurological infections and global neurology at Yale School of Medicine. Inflammatory molecules, released in effective immune responses, “can also be sort of toxins, particularly to the brain,” she said.

This summer, Mr. Reagan, the vascular medicine specialist, turned the stove on to cook eggs and then absent-mindedly left to walk the dog, Wolff-Parkinson-White, named after a cardiac arrhythmia. Returning to discover a dangerously hot empty pan, he panicked and hasn’t cooked since.

I eventually stopped driving because I didn't trust myself on the road.

How does medicine invent new concepts? We need a freaking name and operative definition, criteria and such. The parallels to dementia are quite accurate, it's incredibly disabling, but this here is largely happening to working age adults, the economic impact will be devastating.


Edit: nitpicky but I see a lot of people sharing this with "NOT THE FLU!" and it just feels so silly that this was a major consequence of the Spanish flu; everything old is new again, seems like a state of permanent amnesia, or pervasive refusal to learn from experience

 

[rvallee]

There is a lot of ongoing discussion over the meaning of post-. I'm wondering if it's worth doing a thread on the topic, if people here have the energy for it. It's silly that people are trying to separate things while saying the exact same things for the same reasons about things nobody knows about. The term was coined recklessly without being validated and is simply assumed but now that is causing nothing but confusion.

It's so silly that this is happening. Is the specific polio pathogen (I believe there are several?) gone in post-polio syndrome? Is it gone in mononucleosis? In Q fever? In sleeping sickness? In the first SARS? Nobody knows, it was simply assumed by challenging critics to show where the virus/bacteria are, hence it must be gone. Nothing but donkey science. The term was mostly abused precisely to dismiss the virus, or even "virus" if we take events like Royal Free whose pathogenic cause was dismissed, and pin it all on mass hysteria. All at a time when we had neither the technology nor the scientific understanding to actually validate those assumptions.

Obviously what this needs is extensive academic research to clarify but leaving this hanging is not an option. Old names used without care are continuing to cause confusion and harm. What a mess.

 

[rvallee]

Things aren't any better in Canada.


'We're not being listened to': COVID-19 long-haulers describe fighting for medical care

https://www.ctvnews.ca/health/coron...-describe-fighting-for-medical-care-1.5141253

COVID-19 long-haulers say it’s been a fight to receive medical care, specifically in regard to receiving a proper diagnosis and treatment.

Ruth Castellanos says she was sick with COVID-19 in mid-May, but still wasn’t feeling well weeks after her cough and fever had subsided.

She says she called her doctor to explain her ongoing symptoms, which included shortness of breath, fatigue and neurological issues.

“I was told to get back to exercising and to get back to my life and I couldn’t even get out of bed,” Castellanos told CTV News Channel on Saturday. “I talked to someone else until finally another doctor diagnosed me with post-viral syndrome from COVID.”

Patients who are experiencing persistent COVID-19 symptoms months after being infected with the virus have come to be known as “long-haulers.” Scientists have found that some of the long-term effects include heart damage as well as neurological issues like brain fog and difficulty thinking.

At least I'm noticing a growing respect for brain fog.

Jackie Lorre, a registered nurse at St. Mary’s Hospital in Kitchener says she shares Castellanos frustrations.

“At times I think we feel like we’re not being listened to,” Lorre said. “I think the belief system at the beginning of the pandemic was you are infected for two to three weeks then the symptoms disappear and you are ok.”

She added, “I think it’s been quite a shock to the health care experts that there are many of us experiencing long term consequences from this virus.”

Ah, well, denial has consequences. It's not a shock to us and it's definitely not normal for a patient community to know more than the entirety of freaking medicine, even if it's just a tiny bit more. Extremely not normal.

 

[Dx Revision Watch]

 

[Dx Revision Watch]