Long Covid: Summary of discussions

Pyrrhus

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Long Covid: A summary of discussions on Phoenix Rising

I thought I would start a thread to collect together all the discussions that might be relevant to "Long Covid", the condition(s) that many people end up with, months after an infection with the novel coronavirus. These people are often referred to as "Long haulers". Please feel free to add to this thread as necessary.


Discussions:

Atlantic article on Long Covid:

CNN articles on Long Covid:

STAT articles on Long Covid:

UK Independent article on Long Covid:

NIH Director's blog:

Webinar with Dr. Komaroff:

Long Covid research:

The novel coronavirus can infect the brain:

Blog post by @wherearemypillows :


Research studies to learn more:
 
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Pyrrhus

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Pyrrhus

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An excellent article from BBC News:
https://www.bbc.com/news/stories-54106272

Discussion thread here:
https://forums.phoenixrising.me/thr...as-like-nothing-ive-experienced-before.81377/

Excerpt:
BBC News said:
Thousands of coronavirus patients, including many who were not ill enough to be hospitalised, have been suffering for months from fatigue and a range of other symptoms. While professionals struggle to support them, what can they learn from those living with chronic illnesses?

If you've been following the stories of people who have contracted coronavirus and are experiencing debilitating symptoms that won't go away, Jade Gray-Christie's story may sound familiar. Because her symptoms were considered "mild", she was not hospitalised, but her life has been turned upside down since falling ill in March.

Before the pandemic, Jade had been living an extremely busy life. The 32-year-old from Stoke Newington in London was balancing a fulfilling job supporting young people from disadvantaged backgrounds, with an active social life, and going to the gym three times a week.

But in the early hours of the morning on 15 March, Jade came home from a long day at work, and knew something wasn't right...
 
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Pyrrhus

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Long Covid is finally being talked about more in greater circles!

The Los Angeles Times did an episode on LongCovid for their "Second Opinion" series:
https://www.latimes.com/about/bfvpf5rbj2e-123
Excerpt:
LA Times said:
Episode 4: The Long-Haulers

Our fourth episode examines the long-term health impact of COVID-19 on survivors of the disease. Los Angeles Times Executive Chairman Dr. Patrick Soon-Shiong, a surgeon and scientist, is joined by Dr. Carlos Cordon-Cardo, professor and chair of the Department of Pathology at the Icahn School of Medicine at Mount Sinai. Dr. Cordon-Cardo’s work offers a unique glimpse at the ways COVID-19 interacts with, and harms, the human body. We will also hear from a group of recovering coronavirus patients who continue to suffer from a variety of symptoms months after contracting COVID-19. The discussion is moderated by Eli Stokols of The Times’ Washington bureau.

Bloomberg news hosted an editorial called "Covid Everlasting" with an excellent graphic detailing the symptoms of Long Covid:
https://www.bloomberg.com/graphics/2020-opinion-covid-long-haulers-chronic-illness/
Excerpt:
Bloomberg news said:
Covid Everlasting

After six months’ experience with Covid-19, medical researchers have learned a lot about the disease. But among the still-open questions is this big one: How many people who’ve been infected will suffer lasting symptoms and health problems?

Like many other illnesses, Covid-19 can cause enduring problems. Some victims report serious symptoms weeks and months after infection, even many who were never ill enough to be hospitalized. Nearly 100 different long-term problems, detailed in the chart below, were reported to Indiana University Medical School researcher Natalie Lambert, in a survey of more than 1,500 patients. Some of these issues go well beyond typical Covid symptoms.

The New Zealand Herald published a piece that compared Long Covid to ME/CFS:
https://www.nzherald.co.nz/lifestyle/news/article.cfm?c_id=6&objectid=12353082
Excerpt:
New Zealand Herald said:
Covid 19 coronavirus: Kiwi expert on Covid survivors affected by ME

In a cruel twist, many Covid-19 survivors could be affected by a once-obscure chronic fatigue condition, initially termed the Tapanui flu, and whose existence was once ridiculed and denied.

Emeritus Prof Warren Tate, 73, of the University of Otago biochemistry department, officially retired recently but is continuing his molecular-level research into the condition at the university.

This condition is now called myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).

People with this disabling illness often cannot undertake their usual activities and "at times may be confined to bed and experience overwhelming fatigue that is not improved by rest", the US Centres for Disease Control and Prevention (CDC) says.

And 60 Minutes Australia did a piece entitled "Long haul COVID-19 victims experiencing bizarre symptoms after recovery", available on YouTube:
 

Pyrrhus

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"Long Covid" is what patients are calling it. But doctors and others are struggling to come up with a name for the "official" diagnosis.

One option is "Post-COVID Syndrome", which has been criticized because some say that it's not really "post-coronavirus symptoms ", it's "continuing coronavirus symptoms". Many Long Covid patients never had the acute "flu-like" symptoms, or had minor acute symptoms, but their initial symptoms simply continued on for months, sometimes in a fluctuating pattern.

So which term is going to win?

Some of you may be familiar with the International Classification of Diseases (ICD) that is used to record "official" diagnoses in health records. A similar classification is called SNOMED, which is heavily used in the UK.

A request has now been made to include the term "Post-COVID Syndrome" in SNOMED:
https://isd.hscic.gov.uk/rsp-snomed/user/guest/request/view.jsf?request_id=32731

Excerpt:
SNOMED request said:
Brief summary of the request
We would like to request concept(s) related to post COVID-19 syndrome or whatever the clinical community decide to call.

Description of the addition or change
My trust is the London COVID-19 centre and my respiratory consultants have expressed their view that currently there is a lack of post COVID-19 related concepts. These patients who either had COVID-19 (through confirmed PCR test) or a high suspicion of COVID-19. Nearly six months down the line, they started developing what they call “post COVID-19 syndrome”. Right now, we have been recording this using a list of the symptom concepts. You might want to work with the clinical bodies to author such concept request.

We need it urgently as these patients is not just a few. It is significant numbers going forward.

But some academic patients say in a recent letter "Why the Patient-Made Term 'Long Covid' is needed":
https://wellcomeopenresearch.org/articles/5-224
Excerpt:
Wellcome letter said:
Abstract: The patient-made term ‘Long Covid’ is, we argue, a helpful and capacious term that is needed to address key medical, epidemiological and socio-political challenges posed by diverse symptoms persisting beyond four weeks after symptom onset suggestive of coronavirus disease 2019 (COVID-19). An international movement of patients (which includes all six authors) brought the persistence and heterogeneity of long-term symptoms to widespread visibility. The same grassroots movement introduced the term ‘Long Covid’ (and the cognate term ‘long-haulers’) to intervene in relation to widespread assumptions about disease severity and duration. Persistent symptoms following severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) infection are now one of the most pressing clinical and public health phenomena to address: their cause(s) is/are unknown, their effects can be debilitating, and the percentage of patients affected is unclear, though likely significant. The term ‘Long Covid’ is now used in scientific literature, the media, and in interactions with the WHO. Uncertainty regarding its value and meaning, however, remains. In this Open Letter, we explain the advantages of the term ‘Long Covid’ and bring clarity to some pressing issues of use and definition. We also point to the importance of centring patient experience and expertise in relation to ‘Long Covid’ research, as well as the provision of care and rehabilitation.

UPDATE 25 September:
The day after the publication of the letter promoting "Long Covid", a new SNOMED request was made:
https://forums.phoenixrising.me/threads/long-covid-summary-of-discussions.81357/#post-2298528

And the WHO added the following update to ICD-10:
WHO said:
U09 Post COVID-19 condition
U09.9 Post COVID-19 condition, unspecified
Note: This optional code serves to allow the establishment of a link with COVID-19. This code is not to be used in cases that still are presenting COVID-19.
 
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Pyrrhus

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So what are US doctors being taught about Long Covid?

Medscape is a top provider of Continuing Medical Education (CME) for doctors in the US. They recently released their first training module related to Long Covid, called "COVID-19: How long do symptoms last?" So what are US doctors being taught about Long Covid?

Apparently, the module starts off with the caveat that information is limited and our current knowledge is subject to change. Then the module reviews the findings of 2 of the 5 research reports on the topic. (See the first post in this discussion for links to all 5 research reports.)

The module apparently does a good job of reviewing the findings from those 2 reports, and then asks for insight from selected doctors. This is where it gets awkward. (the following is deliberately paraphrased.)

One of the selected doctors highlighted that Long Covid was correlated with pre-existing psychiatric conditions, despite the fact that any pre-existing chronic medical condition appeared to correlate with the development of Long Covid.

Another selected doctor offered Long Covid patients "training" to address their deconditioning and fatigue. Perhaps this doctor erroneously believes that the fatigue is related to deconditioning? I can't see how you can provide physical therapy to address deconditioning without worsening the Long Covid exertion-exacerbated fatigue.

This is apparently what US doctors are being taught. But who will teach the teachers?
 
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Pyrrhus

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And the news reports just keep on coming...

The Journal of the American Medical Association just published a news article entitled "As Their Numbers Grow, COVID-19 “Long Haulers” Stump Experts":
https://jamanetwork.com/journals/ja...m=social&utm_term=092320#.X2vaQxEuT_U.twitter
Excerpt:
JAMA said:
As Their Numbers Grow, COVID-19 “Long Haulers” Stump Experts

For 32-year-old Hanna Lockman of Louisville, Kentucky, it all started March 12. She was at work when she suddenly felt a stabbing pain in her chest.

“It just got worse and worse and worse, to the point I was crying from the pain,” she recalled in a recent interview. At 3 am, the pain sent her to the emergency department. “I had developed a dry cough, maybe a mild fever. I don’t remember.”

Five months, 16 emergency department trips, and 3 short hospitalizations later, Lockman can’t remember a lot of things. She places the blame squarely on coronavirus disease 2019 (COVID-19)...

A medical consulting company called MedBridge published a blog entitled "Rehabilitating COVID-19 “Long-Haulers”: The ME/CFS Connection":
https://www.medbridgeeducation.com/...l&utm_term=&utm_content=&utm_campaign=sep20rn
Excerpt:
MedBridge said:
Rehabilitating COVID-19 “Long-Haulers”: The ME/CFS Connection

A growing number of people are reporting persistent illness after first getting infected with the SARS-CoV-2 virus. These “long-haulers,” a name coined for long-term COVID-19 patients, experience profound fatigue, headaches, shortness of breath, muscle pain, sleep disturbances, cognitive impairments, reactivation of fevers, and more.1 Many say that these and other symptoms often worsen after attempting daily activities and exercise, placing patients in a never-ending loop of illness and disability...

The Times (UK) just published a piece entitled "I'm one of the legion of long-Covid sufferers":
https://www.thetimes.co.uk/article/im-one-of-the-legion-of-long-covid-sufferers-s6m83c92p
Excerpt:
The Times said:
I’m one of the legion of long-Covid sufferers

Hundreds of thousands who survived the virus still have side-effects that range from loss of smell to chronic fatigue

It started with a mild sore throat. I was in Devon at the beginning of the lockdown, and because I hadn’t been on a cruise ship, gone skiing in Italy or partying with the crowds at Cheltenham races, I didn’t think it could be Covid-19. Then I developed sinusitis. My GP was practical: “This is not a symptom of the virus,” he emailed me. But my sense of smell had disappeared. At first this wasn’t a sign but six months later, I still can’t tell the difference between the smell of an overripe banana or lavender. I can distinguish petrol but not gas, dog mess but not roses, bacon but not freshly cut grass. Everything else smells of burnt condensed milk...

The Atlantic magazine published a piece entitled "Long-Haulers Are Redefining COVID-19":
https://www.theatlantic.com/health/...9-recognition-support-groups-symptoms/615382/
Excerpt:
The Atlantic said:
Long-Haulers Are Redefining COVID-19

Without understanding the lingering illness that some patients experience, we can’t understand the pandemic.

Lauren Nichols has been sick with COVID-19 since March 10, shortly before Tom Hanks announced his diagnosis and the NBA temporarily canceled its season. She has lived through one month of hand tremors, three of fever, and four of night sweats. When we spoke on day 150, she was on her fifth month of gastrointestinal problems and severe morning nausea. She still has extreme fatigue, bulging veins, excessive bruising, an erratic heartbeat, short-term memory loss, gynecological problems, sensitivity to light and sounds, and brain fog. Even writing an email can be hard, she told me, “because the words I think I’m writing are not the words coming out.” She wakes up gasping for air twice a month. It still hurts to inhale...

Nature journal published a news article entitled "The lasting misery of coronavirus long-haulers":
https://www.nature.com/articles/d41586-020-02598-6
Excerpt:
Nature said:
The lasting misery of coronavirus long-haulers

Months after infection with SARS-CoV-2, some people are still battling crushing fatigue, lung damage and other symptoms of ‘long COVID’.

The lung scans were the first sign of trouble. In the early weeks of the coronavirus pandemic, clinical radiologist Ali Gholamrezanezhad began to notice that some people who had cleared their COVID-19 infection still had distinct signs of damage. “Unfortunately, sometimes the scar never goes away,” he says.

Gholamrezanezhad, at the University of Southern California in Los Angeles, and his team started tracking patients in January using computed tomography (CT) scanning to study their lungs. They followed up on 33 of them more than a month later, and their as-yet-unpublished data suggest that more than one-third had tissue death that has led to visible scars. The team plans to follow the group for several years.

These patients are likely to represent the worst-case scenario. Because most infected people do not end up in hospital, Gholamrezanezhad says the overall rate of such intermediate-term lung damage is likely to be much lower — his best guess is that it is less than 10%. Nevertheless, given that 28.2 million people are known to have been infected so far, and that the lungs are just one of the places that clinicians have detected damage, even that low percentage implies that hundreds of thousands of people are experiencing lasting health consequences...

And a short 4-minute film has been released on YouTube entitled "Covid-19: The untold story":
Covid-19: The untold story

The untold story: Covid 19 is destroying the lives of tens of thousands of people and with a second wave now imminent these numbers are likely to soar. It’s a narrative that’s been largely ignored by the government. Over half a million people in the UK have struggled with on-going illness after Covid and in many cases it’s severe.

In this short film we hear from a handful of previously fit people badly affected by Covid-19 as they call for recognition, research and crucially, more support.
 
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Pyrrhus

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So many more people writing about Long Covid, I just can't keep up...

The Jakarta Post: "Changed Lives- Symptoms persist in COVID-19 long-haulers"
https://www.thejakartapost.com/news...rs.html?utm_source=dlvr.it&utm_medium=twitter

WXYZ Detroit: "Doctors study lingering symptoms in COVID-19 long-hauler patients"
https://www.wxyz.com/rebound/keepin...atients?utm_source=dlvr.it&utm_medium=twitter

Cincinnati Inquirer: "COVID-19: Patients' symptoms can linger for months without 'rhyme or reason'"
https://www.cincinnati.com/story/ne...045002/?utm_source=dlvr.it&utm_medium=twitter

Fast Company: "‘I feel devastated’: COVID-19 long-haulers fight for understanding from employers"
https://www.fastcompany.com/9055314...ployers?utm_source=dlvr.it&utm_medium=twitter

BBC News: "Coronavirus: Nurse's symptoms continue for five months"
https://www.bbc.com/news/av/uk-england-kent-54197288

Yahoo Lifestyle: "Dr. Fauci Says These COVID Symptoms Could Last For Months"
https://www.yahoo.com/lifestyle/dr-fauci-says-covid-symptoms-110222378.html

Wall Street Journal: "Three Months In, These Patients Are Still Ravaged by Covid’s Fallout"
https://www.wsj.com/articles/three-...covids-fallout-11593612004?st=99gtvpig2cc2juw
 

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Some of you may be familiar with the International Classification of Diseases (ICD) that is used to record "official" diagnoses in health records. A similar classification is called SNOMED, which is heavily used in the UK.

A request has now been made to include the term "Post-COVID Syndrome" in SNOMED:
https://isd.hscic.gov.uk/rsp-snomed/user/guest/request/view.jsf?request_id=32731
But some doctors explain in a recent letter "Why the Patient-Made Term 'Long Covid' is needed":
https://wellcomeopenresearch.org/articles/5-224
Well, that was fast!

A day after the letter promoting the term "Long Covid", a new SNOMED request was made, this time for "Long Covid" instead of "Post-COVID Syndrome":
https://isd.hscic.gov.uk/rsp-snomed/user/guest/request/view.jsf?request_id=33004
Excerpt:
SNOMED Request said:
Suggested name, term or description:
Long Covid

Priority:
Urgent

Brief summary of the request:
It would be helpful to have codes to recognise longer term effects of Covid-19. 'Suspected long Covid' and 'long Covid' would enable us to record.

Description of the addition or change:
We are recognising long term sequelae of Covid-19 infection. Some patients had swab proven Covid-19, others suspected but not lab proven Covid-19. It would help us to audit those people with ongoing symptoms.
 

Pyrrhus

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New Long Covid discussions here on Phoenix Rising:

Neuroinflammation in Long Covid?
https://forums.phoenixrising.me/threads/neuroinflammation-in-long-covid.81396/

Alyssa Milano's long haul COVID-19
https://forums.phoenixrising.me/threads/alyssa-milanos-long-haul-covid-19.81398/

Post COVID-19 syndrome associated with orthostatic cerebral hypoperfusion syndrome, small fiber neuropathy and benefit of immunotherapy: a case report
https://forums.phoenixrising.me/thr...ficulty-excessive-fatigue.81318/#post-2298494
 
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Wired UK, Sept 11 2020: "They never officially had Covid-19. Months later they’re living in hell"

I haven't read the full article due to brainfog but it's definitely about Long Covid.
Trapped in their beleaguered bodies, Covid-19 long-haulers are having to find the energy to fight just to be believed. In online support groups patients share stories about being ignored by doctors, pressured back into work by employers and disbelieved by friends because they don’t match what people think of as a Covid-19 patient.
This probably wouldn't have ever happened if it hadn't been so well practiced.
 

Pyrrhus

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...I forgot to mention the "manifesto" published by doctors who have fallen ill with Long Covid:
https://www.bmj.com/content/370/bmj.m3565.short

Excerpt:
BMJ Letter 15 September 2020 said:
From doctors as patients: a manifesto for tackling persisting symptoms of covid-19

We write as a group of doctors affected by persisting symptoms of suspected or confirmed covid-19. We aim to share our insights from both personal experience of the illness and our perspective as physicians.

Tackling this problem will involve collaboration between politicians, healthcare services, public health professionals, scientists, and society. We call for the following principles to be used so that the best possible outcomes can be achieved for all people affected by persisting symptoms of covid-19.

Research and surveillance—persisting symptoms of covid-19 should be dealt with using a scientific methodology and without bias. People experiencing them should be counted.

[...]

Clinical services—services need to be timely, tailored to individuals’ presentations, and involve investigating and treating pathology, as well as the functional recovery of individuals.

[...]

Patient involvement—patients must be involved in the commissioning of clinical services and the design of research studies.

[...]

Access to services—clinical services commissioned should not unfairly discriminate against those with negative tests and a clinical diagnosis should be adequate for accessing any appropriate services.
 

ljimbo423

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...I forgot to mention the "manifesto" published by doctors who have fallen ill with Long Covid:
From the manifesto -

Failure to understand the underlying biological mechanisms causing these persisting symptoms, risks missing opportunities to identify risk factors, prevent chronicity, and find treatment approaches for people affected now and in the future.
 
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bertiedog

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There was a programme this past Tuesday morning on BBC Radio 4 called Long Covid and it is available on BBC Sounds. One statement from a doctor who is either running a group for long haul patients or is trying to treat them, I cannot quite remember which it is, was that if you don't recover from a viral illness that gives you symptoms very noticeable, troublesome symptoms like pain and fatigue then usually you don't recover a pre-illness level because the symptoms get wired into the brain. (At least I think that is the gist of the reason he gave). That might also have been another symptom that was mentioned I am not sure.

I thought this was huge with regard to ME/CFS. This doctor said that all the evidence pointed to how important it is to try and recover within the 6 month period but he as well aware that at the moment there wasn't enough understanding of exactly what was happening. He also said, like Dr Fauci has said that they are almost 100% certain that the virus is no longer in the blood. Again I am not sure if he said they had tested tissues too but he seemed to think testing for Covid 19 in the long haulers just wasn't showing up anywhere after the initial insult.

I suppose its like a hit and run type scenario.

After hearing that statement about non recovery when there is pain and fatigue because of the brain being hard wired to these symptoms after 6 months I did wonder if that was the reason why in 20 years I have never been able to walk for longer than 30 minutes maximum without my energy running out and my legs ending up like a lead weight. Chronic pain is well known to me too in the form of severe almost daily migraine. 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.

Pam
 

bertiedog

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I will have to listen to it again to check what I have written is correct. Maybe its true of just the fatigue and pain thing but doesn't remotely apply to all the other various symptoms we experience.

Pam
 

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UPDATE:

A Message from Survivor Corps:

We regret to inform you at this late time, that due to current events and circumstances beyond our control, Dr. Fauci has had to cancel his participation today.

We are in the process of re-scheduling for next week.

You will all be informed and re-invited to pre-register for the next date and time.

Survivor Corps
HQ@survivorCorps.com
www.Survivorcorps.com