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

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The Guardian: How BBC's 'Dr Xand' learned surviving Covid isn't child's play

ME is not mentioned, but this:

His own experience of Covid has reminded him how vulnerable adults can be to new viruses. Children’s immune systems are designed to respond vigorously to viruses, but by the time we reach adulthood most of us have been exposed to the common ones so there’s less need for an all-out response; it’s why adults get chickenpox so much worse. “Some long-Covid symptoms will be specific to coronavirus but it is possible that some of what we’re talking about is the effect of new virus exposure in adults, something we’ve been aware of for a long time but which has been neglected by medicine,” he explains.
 
Kalliope said:
but it is possible that some of what we’re talking about is the effect of new virus exposure in adults, something we’ve been aware of for a long time but which has been neglected by medicine,” he explains
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If we have been aware of this phenomenon in adults for a long time, it makes one wonder what the phenomenon Crawley sees in children might be.
 
I’m a first-responder and now, it seems, a covid-19 ‘long-hauler’

https://www.washingtonpost.com/business/2020/10/22/first-responder-covid-long-hauler/

My symptoms have gotten worse and are typical of what is being reported for covid-19 “long-haulers” — recurring fever, debilitating fatigue, inability to concentrate, headache, dizziness, body aches and more. I’m being evaluated for chronic fatigue syndrome, but my doctor and other specialists I have seen are convinced that my condition is a direct result of the unidentified viral infection earlier in the year.
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That was the only true bit of success the grand BPS experiment had: delinking the illness from its trigger, so much so that some GPs will actually say it's probably not "CFS" because it's likely a direct result of a viral infection. I am very curious what that person thinks about mononucleosis.

Incredible level of dysfunction, maximum confusion.
 
Dx Revision Watch said:
And she has her new book to promote:

Beneath the White Coat: Doctors, Their Minds and Mental Health

Paperback, Routledge (30 Oct. 2020)
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This timely book offers a balanced and thoughtful review of the current mental health emergency and its impact upon and among medical professionals, supported by the best available evidence and illustrated through real-life cases. Recognising the increasing stressors in the role including the impact of the environment in which doctors work, the book examines some of the key emotional drivers for this unhappiness among doctors at work – shame, stigma, suffering and sacrifice – and offers practical steps to emotional and physical recovery.
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No idea what she means by "the current mental health emergency", I assume she means her struggles with burnout, this seems very much about her own experience. I feel safe in assuming this is more or less what she believes chronic fatigue is, the language is very telling about physical recovery when talking about... I don't know... I guess this means burnout but it's very muddled.
 
Is there, in fact, a mental health emergency?

If so, why?

I hear people who've been primed going on about it, and quite a lot of people will be feeling stressed, about jobs, money, homes etc. - but...and this is important - this is a perfectly natural response to a stressful situation, albeit a prolonged one, for those who are not used to such things.

It is not IMO an indication of poor mental health, let alone a mental health emergency, at least not in the way these terms have been used for the last several decades.

The whole 'mental health emergency' strikes me as a preemptive cover story, and marketing.
 
@Wonko

What really strikes me as a possible over reaction is not being able to see family during the holidays as a 'crisis'. Perhaps I've had ME for too long or being social introvert is the reason, but I've never felt that my mental health was in an emergency crisis when I got sick. My goodness, it's only been less than a year with this pandemic.
 
Kalliope said:
The Guardian: How BBC's 'Dr Xand' learned surviving Covid isn't child's play

ME is not mentioned, but this:

His own experience of Covid has reminded him how vulnerable adults can be to new viruses. Children’s immune systems are designed to respond vigorously to viruses, but by the time we reach adulthood most of us have been exposed to the common ones so there’s less need for an all-out response; it’s why adults get chickenpox so much worse. “Some long-Covid symptoms will be specific to coronavirus but it is possible that some of what we’re talking about is the effect of new virus exposure in adults, something we’ve been aware of for a long time but which has been neglected by medicine,” he explains.
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Don't think it's so simple, covid kills adults but long covid seems to be targeting healthy young folk. Certainly m.e. went for a lot of kids and those of student age. Maybe their immune systems are too healthy.
 
rvallee said:
No idea what she means by "the current mental health emergency", I assume she means her struggles with burnout, this seems very much about her own experience. I feel safe in assuming this is more or less what she believes chronic fatigue is, the language is very telling about physical recovery when talking about... I don't know... I guess this means burnout but it's very muddled.
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Per usual a government apologist that doesn't link suffering to realities of: long hours, poor pay, lowering of professional authority/esteem; and dealing with a chronically underfunded system that stresses the hell out of everyone. She has played her part in supporting policies that contributed to the poor mental health of pysicians now i imagine she's selling back a halfbit cure.
 
A really interesting article that could be posted in several threads but this one will do. Marvelous example of the cognitive dissonance between traditionally discriminated chronic illness and experiencing its reality as being nothing like medicine describes it. It's borderline "I was wrong all along", but the author seems unable to process Occam's razor, that this can't possibly be true, and so doesn't manage to get there, yet.


I have all the symptoms of a Covid-19 long-hauler — but I’m hesitant to identify myself as one

https://www.statnews.com/2020/10/26/hesitant-identify-myself-as-covid-long-hauler/

I had never heard of NOS, which seems to play the same role as MUS.
As a physician, I never thought that I would someday be lumped into the category of patients known as “not otherwise specified,” or NOS for short. This category is dominated by women suffering nonspecific symptoms that are inconsistently appreciated by clinicians who eventually conclude that the problem is entirely in the mind.
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When I got sick, the guidelines for returning to work were that all symptoms must have resolved. After a long month of isolation, asking every week to be cleared for work, I finally insisted that I was ready. I was no longer short of breath while walking around my apartment. The remaining symptoms — weakness, muscle aches, and low energy — were nonspecific, subjective, and, therefore, things I could surmount.
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When I asked them to look at the notes from my phone encounters with other clinicians, they used the same line I use on my patients: “It’s better for you to recount the story again, in your own words.” But I was tired of telling — and reliving — the story. I apologized for potentially wasting their time, as there might not be anything wrong with me, echoing the hesitancy of many women who are dismissed and fearful of being labeled as anxious or hypochondriacs.
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After working several shifts, I found myself unable to get out of bed one morning: the aches and fatigue were taking over. “Get up! Push through!” my mind scolded my body. My body and mind played this game for weeks. Every time I returned to work, hopeful to care for patients, my body protested, breathing hard and exhausted by the end of morning rounds.
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Without seeing me in person or even virtually, nurses and doctors I spoke with on the phone posited the same diagnoses: post-nasal drip or asthma. Forced to take the stand, my body had to prove, to my mind and to everyone else, that it had been sick and it was still not well.
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Four months into my “illness,” no closer to any answers, I settled on “deconditioning, NOS.” If I took the right precautions — sleeping nine hours a night and dragging a chair around on rounds — I could last through the workday.
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My vital signs earned me a diagnostic work-up. It was the first time a health care provider had listened to my heart and lungs and ordered the basic bloodwork and imaging that have become standard of care for confirmed coronavirus patients. But the results of these preliminary tests, completed five months after my first symptoms, were nonspecific.
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The long-haulers circulated medical resources, but also stories of psychological anguish. Despite their symptoms seeming “typical” for Covid-19, some described feeling ashamed as their peers or health care providers dismissed their symptoms as stress-related or new asthma in the absence of positive tests. How was it possible that all of these people had strikingly similar experiences? Is our understanding of the virus’ biology lacking? Or is there another unrelated NOS condition spreading around the world?
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We have not discussed how we will approach their prolonged debilitation; the financial and equity implications of their inability to work; and the psychological sequelae of feeling sick and cast aside. If we continue to reject that their symptoms warrant investigation and treatment simply because they are not understood, these people will inevitably be alienated from the medical establishment and forced, like other “NOS” patients, to seek compassion and care only from each other.
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As readily admitted by many in the health care community, from clinicians on the front lines to journal editors, long-haulers evoke the same reactions that we have to patients with other medically inexplicable conditions like chronic fatigue syndrome or fibromyalgia. Namely, we assume that their symptoms are psychologically driven, perhaps implicitly by stress and explicitly by secondary gain, the advantages and attention one receives from others when physically ill. It is difficult to accept long-haulers as a group that warrants our attention.
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I am still hesitant to identify myself with the long-haulers, unable to divorce my mind’s adherence to objective evidence from my body’s symptoms. But I share their struggles. Physicians are taught to weigh objective evidence over subjective experience. The patient’s history — her or his description of what is going on — is important, but the data (lab work and imaging) and the physical exam are more important. After all, patients are not always reliable historians.
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Not always, unfortunately, has been operationalized as never, hence the clusterfuck.
But this mindset allows clinicians to write off the symptoms of those in the NOS category and, in doing so, heighten their suffering. Instead, perhaps we ought to humbly admit uncertainty and maintain the openness and curiosity required to ask the right questions. Whether the biology of Covid-19 infection turns out to be as serious as irreversible cardiac damage or as simple as profound deconditioning or stress reactions, these are all conditions that can and should be treated.

While the diagnostics we currently have for NOS conditions are imperfect, we must still care for the humans before us.
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Better idea: let's actually do the work so we don't have a junk category of things where people go to die. Those "NOS conditions" are not imperfect, they are complete and total failure. "Heightens suffering" sure is a good euphemism for "doing harm" but when you are faced with reality you have to call it for what it is. This is, in fact, medicine doing harm. Sadly showing the Hippocratic oath ain't worth much in real life. A good feel-good slogan, but no more.
 
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I have empathy for the author's suffering but I'm also really, really astonished.

Is it - really - so hard to believe that there are people with physical ilnnesses that are just yet unknown or undiagnosed? The author only understands when going through herself? That's not even a lack of empathy but a lack of...imagination.

"Not knowing" is a totally valid category in any other science. Why not in medicine? Is there an inherent conflict between the role of a doctor, that might come with so many responsibilities and expectations that are unbearable when you allow any doubt in your abilities to solve a problem in?

The author sounds traumatized, not by LongC but because it's shattering her fundamental beliefs.

Edit for pronouns/author
 
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Leila said:
I have empathy for the man's suffering but I'm also really, really astonished.

Is it - really - so hard to believe that there are people with physical ilnnesses that are just yet unknown or undiagnosed? He only understands when going through himself? That's not even a lack of empathy but a lack of...imagination.

"Not knowing" is a totally valid category in any other science. Why not in medicine? Is there an inherent conflict between the role of a doctor, that might come with so many responsibilities and expectations that are unbearable when you allow any doubt in your abilities to solve a problem in?

The man sounds traumatized, not by LongC but because it's shattering his fundamental beliefs.
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Interesting points. By the way, I googled the name and lots of photos of a woman came up so presume the author is female.
 
Dolphin said:
Interesting points. By the way, I googled the name and lots of photos of a woman came up so presume the author is female.
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Oops, I knew an Iranian with the same name and then assumed the author was male even though I was surprised about the openness and self reflexion that I'd associate more with a female. So I was double biased myself ranting about biases :oops: Will edit.
 
rvallee said:
(...)

I have all the symptoms of a Covid-19 long-hauler — but I’m hesitant to identify myself as one

https://www.statnews.com/2020/10/26/hesitant-identify-myself-as-covid-long-hauler/


I had never heard of NOS, which seems to play the same role as MUS.
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The author is in the U.S. where ICD-10-CM is the mandatory version of ICD-10 and is used for morbidity coding, billing and records:

https://www.cdc.gov/nchs/data/icd/10cmguidelines-FY2021.pdf

ICD-10-CM Official Guidelines for Coding and Reporting FY 2021 (October 1, 2020 - September 30, 2021)


6. Abbreviations

a. Alphabetic Index abbreviations

NEC “Not elsewhere classifiable”

This abbreviation in the Alphabetic Index represents “other specified.” When a specific code is not available for a condition, the Alphabetic Index directs the coder to the “other specified” code in the Tabular List.


NOS “Not otherwise specified”

This abbreviation is the equivalent of unspecified.


b. Tabular List abbreviations

NEC “Not elsewhere classifiable”

This abbreviation in the Tabular List represents “other specified”. When a specific code is not available for a condition, the Tabular List includes an NEC entry under a code to identify the code as the “other specified” code.


NOS “Not otherwise specified”

This abbreviation is the equivalent of unspecified.

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In the U.S.'s ICD-10-CM, Chronic fatigue syndrome is listed in the Symptoms, signs chapter as:


R53.82 Chronic fatigue, unspecified

Chronic fatigue syndrome NOS

(where "NOS" = "Not otherwise specified")



Many coded terms in ICD-10-CM also have a "NOS" version.

See ICD-10-CM Tabular List FY 2021 for further examples:

https://dxrevisionwatch.files.wordpress.com/2020/07/icd10cm-tabular-p-2021.pdf
 
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Further explanation on use of "NOS" terms in ICD-10-CM:

https://www.findacode.com/articles/icd-10-cm-abbreviations-nec-nos-31650.html

ICD-10-CM Abbreviations: NEC, NOS
by Christine Woolstenhulme, QCC, QMCS, CPC, CMRS
May 6th, 2015

The difference between NEC and NOS is very specific and not to be confused as they are two very different abbreviations.

NEC - When a specific code is not available for a condition, the Index directs the coder to the “other specified” code in the Tabular List. NEC is used to indicate the diagnosis is specific; however, the coding system is not specific enough.


Example: Alphabetical Index

Cataract

Specified NEC H26.8 Tabular List

H26.8 - Other specified cataract


NOS “Not otherwise specified”

This abbreviation is the equivalent of unspecified, indicating the documentation does not provide enough information to assign a more specific code.


Example: Tabular List

I50.9 - Heart failure, unspecified
Biventricular (heart) failure NOS
Cardiac, heart or myocardial failure NOS
Congestive heart disease
Congestive heart failure NOS
Right ventricular failure
(secondary to left heart failure)
 
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So the term "NOS" (Not otherwise specified) is not a stand alone term in ICD-10, ICD-10-CM or ICD-10-CA, but a qualifier appearing at the end of a coded-for term, for which there are many examples in ICD-10 and in the national modifications of ICD-10.

So I question the author's understanding of the use of "NOS".
 
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