Long Covid: Summary of discussions

[Pyrrhus]

A case report of a patient with orthostatic intolerance (OI) and small fiber neuropathy (SFN) who contracted the novel coronavirus:
https://pubmed.ncbi.nlm.nih.gov/32984564/

Excerpt:

Post COVID-19 syndrome associated with orthostatic cerebral hypoperfusion syndrome, small fiber neuropathy and benefit of immunotherapy: a case report

Abstract: Coronavirus disease (COVID-19) is a novel highly contagious infectious disease caused by the coronavirus SARS-CoV2. The virus affects the human respiratory and other systems, and presents mostly as acute respiratory syndrome with fever, fatigue, dry cough, myalgia and dyspnea. The clinical manifestations vary from no symptoms to multiple organ failure. Majority of patients fully recover. Several postinfectious presumably autoimmune complications of COVID-19 affecting the brain or peripheral large nerve fibers have been reported. This report describes a post COVID-19 patient who developed chronic fatigue, orthostatic dizziness and brain fog consistent with orthostatic hypoperfusion syndrome (OCHOS), a form of orthostatic intolerance, and painful small fiber neuropathy (SFN). Initially, the patient was diagnosed with OCHOS (detected by the tilt test with transcranial Doppler monitoring) and SFN (confirmed by skin biopsy), and both OCHOS/SFN were attributed to Post Treatment Lyme Disease Syndrome of presumed autoimmune etiology. Patient recovered on symptomatic therapy. COVID-19 triggered exacerbation of OCHOS/SFN responded to immunotherapy with intravenous immunoglobulins. This case suggests that post COVID-19 syndrome may present as an autoimmune OCHOS/SFN and that early immunotherapy may be effective. Further studies are necessary to confirm the link between OCHOS/SFN and COVID-19 disease as well as to confirm the benefit of immunotherapy.

 

[RobeAnJa]

A case report of a patient with orthostatic intolerance (OI) and small fiber neuropathy (SFN) who contracted the novel coronavirus:
https://pubmed.ncbi.nlm.nih.gov/32984564/

Excerpt:

The patient recovered with IVIG? And they are suggesting early treatment would be successful. Great. My doctors say my orthostatic intolerance and all other post-covid symptoms are in my head and won’t do anything.

 

[dahsar]

The patient recovered with IVIG? And they are suggesting early treatment would be successful. Great. My doctors say my orthostatic intolerance and all other post-covid symptoms are in my head and won’t do anything.

That report https://pubmed.ncbi.nlm.nih.gov/32984564/ has been shared a lot in the past two weeks in the slack support group and people are upset that they cannot get IVIG as well.

 

[Pyrrhus]

Today in the UK, the government health authority NICE has promised to look in Long Covid and try to come up with some guidelines:
https://www.nice.org.uk/news/articl...id-covid-19-guideline-will-address-long-covid

Excerpt:

NICE & SIGN announce latest rapid Covid-19 guideline will address Long Covid

NICE and the Scottish Intercollegiate Guidelines Network (SIGN) have today (5 October 2020) announced they will work with the Royal College of General Practitioners (RCGP) to develop a guideline on persistent effects of Covid-19 (Long Covid) on patients.

 

[Gemini]

Survivor Corps Webinar Series:

 

[PatJ]

Oct 6, BBC Article - 'Long Covid': Why are some people not recovering?

Some quotes from the article:

There is no medical definition or list of symptoms shared by all patients - two people with long Covid can have very different experiences.

However, the most common feature is crippling fatigue.
...

Even people with relatively mild infections can be left with lasting and severe health problems.

"We've got no doubt long Covid exists," Prof David Strain, from the University of Exeter, who is already seeing long-Covid patients at his Chronic Fatigue Syndrome clinic, told the BBC.
...

One thought is the immune system does not return to normal after Covid and this causes ill-health.

The infection may also alter how people's organs function. This is most obvious with the lungs if they become scarred - long-term problems have been seen after infection with Sars or Mers, which are both types of coronavirus.

But Covid may also alter people's metabolism. There have been cases of people struggling to control their blood sugar levels after developing diabetes as a result of Covid, and Sars led to changes in the way the body processed fats for at least 12 years.

There are early signs of changes to brain structure, but these are still being investigated. And Covid-19 also does strange things to the blood, including abnormal clotting, and damaging the network of tubes that carry blood around the body.
...

However, there are concerns that even if people appear to recover now, they could face lifelong risks.

People who have had chronic fatigue syndrome are more likely to have it again and the concern is that future infections may cause more flare-ups.

 

[Gemini]

Recent New York Times "Long Hauler" articles: [may be behind a paywall]

"What To Do When COVID Doesn't Go Away" 8 August 2020
https://www.nytimes.com/2020/08/08/...reatment-medicine.html?searchResultPosition=2

"For Long-Haulers COVID-19 Takes a Toll on Mind & Body" 7 September 2020
https://www.nytimes.com/2020/09/07/...ealth-long-hauler.html?searchResultPosition=1

"It's Not in My Head: They Survived the Coronavirus But They Never Got Well" 28 September 2020
https://www.nytimes.com/2020/09/28/us/coronavirus-long-term-effects.html?searchResultPosition=5

 

[Rufous McKinney]

However I don't think it explains other symptoms like the viral ones, sore throats, swollen glands and even a bit of catarrh let alone orthostatic intolerance to name a few.

i don't think that explains loss of collagen in the body, either - my fingerprints gone, other body parts decrepit.

The gradual breakdown of collagen by these viruses is a key issue I believe, leading to exacerbation of lower brain stem collapse- the resulting compressions can then lead to any number of varied expressions in the body in my opinion- the different symptoms in different folks.

Then we know- from Prusty and probably others- that the viruses can- also cause mito fragmentation.

I'm circling around realizing my lifetime of issues (66 years worth)....likely have a much greater mechanical component than I ever remotely considered in the past.

What are viruses getting out of this deal, I wonder?

 

[bertiedog]

i don't think that explains loss of collagen in the body, either - my fingerprints gone, other body parts decrepit

I have this issue too, 20 years into full blown ME/CFS but the original 2 week virus that changed my life was in 1979. After that I did have relatively good energy but suffered with horrendous vertigo attacks and severe migraines. That all changed with the peri menopause plus some bacterial infections like Campylabactor poisoning.

I agree there is so much more to this illness but I do think it is encouraging for the Long Covid sufferers that at least attempts are being made to try and find out why they are still experiencing symptoms. Hopefully it will save at least some of them many years of ill health. which can be devastating for some. I think the last paragraph of the write up I did regarding the BBC programme sums up why this is -

"It’s young people who contribute to the economy and these are the ones affected – they don’t want this productive workforce disabled long term so they want to avoid that and get people back in action and avoid chronicity long term. The presenter (Adam Rutherford who was the presenter) stressed that it is most important they recognise that Long Covid actually exists, that the medical profession seek to understand its biology and we acknowledge that it is serious for those who have it and also for the NHS and for society."

Pam

 

[Gemini]

Survivor Corps Webinar Series:

Worth a watch--42-minute Q&A with Physicians on the front lines treating "Long Haulers."

Summary:

Specific diagnostic tests, treatments, & multidisciplinary teams currently used--
What is scientifically known and not known about Long COVID at this time--
Strong affirmation from both physicians--it's real, not in your head!

 

[RobeAnJa]

Worth a watch--42-minute Q&A with Physicians on the front lines treating "Long Haulers."

Summary:

Specific diagnostic tests, treatments, & multidisciplinary teams currently used--
What is scientifically known and not known about Long COVID at this time--
Strong affirmation from both physicians--it's real, not in your head!

I am convinced that MCAS, dysautonomia and development of ME/CFS account for a large part of the long haul problems that many people experience after Covid-19. I myself was healthy before Covid in April. With the help of Dr. Google, it was not so difficult to understand that dysautonomia and probably ME are my problems. In the Long covid support groups I’m in, most people seem to have similar problems. It is uncommon for doctors to find something wrong with lungs or heart, but severe setbacks after minimal exertion, shortness of breath, fatigue, brain fog and palpitations are very common. The doctors in this video seem very good and they are certainly at the forefront, but still they say, for example, that exercise is good and only mention dysautonomia very briefly. I understand that these are not their areas of expertise but it is really sad to see that no one really seems to see the big picture. When will the world realize what is really happening?

 

[dahsar]

I am convinced that MCAS, dysautonomia and development of ME/CFS account for a large part of the long haul problems that many people experience after Covid-19. I myself was healthy before Covid in April. With the help of Dr. Google, it was not so difficult to understand that dysautonomia and probably ME are my problems. In the Long covid support groups I’m in, most people seem to have similar problems. It is uncommon for doctors to find something wrong with lungs or heart, but severe setbacks after minimal exertion, shortness of breath, fatigue, brain fog and palpitations are very common. The doctors in this video seem very good and they are certainly at the forefront, but still they say, for example, that exercise is good and only mention dysautonomia very briefly. I understand that these are not their areas of expertise but it is really sad to see that no one really seems to see the big picture. When will the world realize what is really happening?

They will soon.

 

[RobeAnJa]

”Blood dysfunction as the cause of long covid”

https://medium.com/@nkalex/blood-dysfunction-as-the-cause-of-long-covid-926c0af4ea63

What do you think? Does it make sense?

I’m a long hauler with POTS but no brain fog. Maybe I’ll try the suggested treatment.

 

[Pyrrhus]

”Blood dysfunction as the cause of long covid”

https://medium.com/@nkalex/blood-dysfunction-as-the-cause-of-long-covid-926c0af4ea63

What do you think? Does it make sense?

I’m a long hauler with POTS but no brain fog. Maybe I’ll try the suggested treatment.

Well, that's a rather convoluted hypothesis. Only more research can confirm or refute aspects of the hypothesis.

Here is one plausible part of the hypothesis:

• "SARS-CoV-2 invades the brain/nervous system through the olfactory cranial nerves starting in the nose, leading to a loss of sense of smell and dysfunction of the olfactory bulbs. This attack on the nervous system often reactivates Epstein-Bar virus"

And here are some less plausible parts of the hypothesis:

• "SARS-CoV-2 causes issues with the lungs, leading to inflammation and an inability to remove serotonin from the blood. [...] 80% of more of serotonin clearance happens in healthy lung endothelium, [...] The body then copes with excess serotonin in the blood and serotonin antibodies are created to remove it." (Development of serotonin antibodies due to 'excess serotonin' is quite unlikely.)
• "Serotonin dysfunction throws off the gut-immune axis and can cause anaerobic bacteria to mobilize from the stomach into the blood stream." (How would 'serotonin dysfunction' increase intestinal permeability?)
• "This bacterial infection may also trigger a bradykinin cascade, leading to the observed breathing issues, including production of hyaluronic acid in the lungs leading to poor oxygen permeation." (Despite much speculation, there's no evidence yet that a bradykinin cascade is relevant to acute COVID, much less Long COVID.)

 

[Pyrrhus]

And here's a perspective on Long Covid from Avi Nath, the researcher leading the NIH's intramural "post-infectious ME" study, and the one to be heading the US government's new research on Long Covid:
https://n.neurology.org/content/95/13/559

(Also see Long Covid research announcement: https://clinicaltrials.gov/ct2/show/NCT04564287)

Excerpt:

Long-Haul COVID

Modern medicine has faced its biggest challenge from the smallest of organisms. It is becoming increasingly apparent that many patients who recovered from the acute phase of the SARS-CoV-2 infection have persistent symptoms. This includes clouding of mentation, sleep disturbances, exercise intolerance and autonomic symptoms (table 1).

[...]

Many of these symptoms overlap with those of patients with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).6,7 However one needs to be careful not jump to the conclusion that they have ME/CFS unless other possible causes of their symptoms have been investigated (table 2).

[...]

Long-Haul COVID thus represents an excellent opportunity to study the pathophysiology of ME/CFS and in doing so may have broader implications.

[...]

Long-Haul COVID is our calling and we should take the lead. In fact, several efforts are underway to prospectively follow these patients with persistent symptoms, including studies at the intramural program at the NIH in Bethesda. As we put these efforts in place, it is equally important for us to remember that we should study and treat not the disease that affects patient but rather the patient that is affected by the disease. Only then can we hope to find solace for these patients in a timely manner.

 

[ljimbo423]

And here's a perspective on Long Covid from Avi Nath, the researcher leading the NIH's intramural "post-infectious ME" study, and the one to be heading the US government's new research on Long Covid:

He sounds like a very insightful guy. I'm happy to see that he's doing this work!

 

[IThinkImTurningJapanese]

https://n.neurology.org/content/95/13/559

These patients, some of whom are physicians themselves are concerned that they could be stigmatized as being “functional.”

What goes around, comes around. I hope they are treated better than many of us have been.

To characterize the experience of Long-Haul Covid as a Functional Somatic Syndrome is so severely stupid it offends me, the stupidity that is.

 

[Gemini]

Front-page New York Times article "Beating Covid, Only To Be Left With Brain Fog," 12 October 2020:
https://www.nytimes.com/2020/10/11/health/covid-survivors.html?searchResultPosition=10

Summary:

1. Neurological symptoms --difficulty concentrating, memory problems, dizziness, and confusion-- are rendering previously healthy Long COVID patients debilitated and unable to work

2. Experts cite possible causes:

NIH's Avi Nath--chronic immune system activation after the initial infection
Yale University's Serena Spudich--inflammation in blood vessels or an autoimmune attack on nerve cells
Mt. Sinai Health's Allison Navis--lingering COVID lung or heart issues exacerbating neurological symptoms

3. Soon-to-be published Indiana University symptom study of 4000 Long Haulers found more than half reported difficulty concentrating making it 4th most common of 101 symptoms reported

 

[RobeAnJa]

”Covid-19 hyperinflammation and post-Covid-19 illness may be rooted in mast cell activation syndrome”

https://www.sciencedirect.com/science/article/pii/S1201971220307323

 

[lenora]

Hello Everyone....First off, I would like to thank @Pyrrhus for all the effort he has put into keeping track of these stories.

As I read them the first thing that comes to mind is this: The most important thing one can do, and the one you feel the least likely about getting when you're so ill, is an official diagnosis so that you have proof of your status.

I do believe that it take months for us to recover from some viruses and exhaustion is one of the hallmarks. I also wish, in retrospect, that we had been given the consideration and respect that those with long covid, or long haulers in the U.S. are getting today. We simply weren't believed at all, and it was extended even more by being laughed at b/c of our illness. So, as slow as it seems, some things have improved. The idea that a virus can cause long term effects is accepted by almost everyone, a complete reversal in beliefs.

@Pyrrhus, on your time off (just kidding on that one!), I was wondering if you'd been able to determine (just your thoughts) who has the most patients....the U.K. seems to have so many given its size, or the U.S.? Granted, our greater population is something that doesn't help with direct comparisons, but on a percentile basis...any formulations/thoughts as you deal with this. I do hope and I really mean this, b/c people who have been through, are going through it don't wish it upon anyone else, that you'll feel better at some point and that life will once again be a bit more normal. In my case, I do feel that if I get the virus I'll be so slow in recovering or will never recover, but bear in mind that I've been fighting this for 35 yrs. or more, and I'm now 73. What do I expect? In the meantime for those who have it, sleep while you can, try to give your bodies what they're screaming for...proper nutrition and do ask others for help. That was a failing on my part, but with good reason, I was made to feel like a pariah and you most certainly shouldn't.