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

Status
Not open for further replies.
rvallee said:
This page has recent updates and has been promoted in some patient communities, yesterday by Body Politic. Haven't seen any mention of budgets, how much, out of what budget.


An Observational Study of Neurologic Function After COVID-19 Infection

https://clinicaltrials.gov/ct2/show/NCT04564287
Click to expand...


"A condition prior to the diagnosis of Covid-19 infection that would significantly confound interpretation of the research tests (e.g. prior diagnosis of Postural Orthostatic Hypotension Syndrome), as determined by the study investigators."
It would be nice to confirm that they in fact mean that "Postural Orthostatic Hypotension Syndrome" is not postural orthostatic tachycardia syndrome.
I am guessing that given exclusions for this study many with ME wouldn't qualify to participate.
 
rvallee said:
Up to 3 months? It's been more than 6 months already so we know it's at least up to 6 months. Bit slow on the uptake over there. Still not even aware of exertion intolerance. Gonna have to speed this thing up several dozen notches if they ever want to catch up to last month.
Click to expand...


I believe CDC currently only acknowledges lung problems as a long-term COVID-19 sequelae.
[ETA :] Correction - https://www.cdc.gov/coronavirus/2019-ncov/long-term-effects.html - they acknowledge heart problems also. But only heart and lung.
 
Last edited:
Denise said:
I am guessing that given exclusions for this study many with ME wouldn't qualify to participate.
Click to expand...
It makes sense to restrict for people who only recently had Long Covid but were previously healthy, otherwise it would inject other data into it. Although it would make sense to do a special cohort for this as well, how it affects those who were already chronically ill, but as usual that would be down to funding. Always funding. Never there, that damn funding.
 
When Symptoms of Covid-19 Don’t Go Away

https://www.nytimes.com/2020/10/12/well/live/coronavirus-symptoms-covid-19-persistent.html

By May she felt well enough to stroll around the neighborhood, gradually increasing the distance she walked. She expected a full recovery. But now, more than six months after she fell ill, walking up even a short hill can exhaust her, and she wonders if she will ever again feel like the athletic, energetic, healthy woman she was before the novel coronavirus turned her life into a roller coaster of recurring illness despite no evidence of an active infection.

“I will feel better for about five days and able to walk a mile or more and do yoga, then I’m flattened again for another five days,” Ms. Londa told me. “On-and-off like a switch, the same symptoms keep repeating — a feeling like cement is pushing on my chest, chills, cough, sore throat, dry mouth, tingling in my arm, an irregular heartbeat. I’m about to fall asleep, then suddenly start gasping for air like I’m drowning, and I have to get up and walk. It’s really, really depressing.”
Click to expand...
Weird, she did everything right according to our BPS overlords.
They wondered, too, “which symptoms might be explained by the anxiety caused by a new disease and by the isolation, and which symptoms are secondary to a complicated form of Covid-19.” At present, the unknowns about long-term consequences of this potentially devastating viral infection far outnumber the knowns.
Click to expand...
I have no idea where the weird obsession with a symptom, anxiety, causing other symptoms comes from but that's not how things work. Anxiety is itself a vague, subjective and very interpreted thing with no test or specific definition, largely thanks to the need to change the definition to fit the suggestion that a symptom could, somehow, cause symptoms, thus having sub-symptoms, somehow. Especially since most of the "anxiety" from Covid is likely to be dysautonomia, which explains the entire thing.
The range of reported symptoms is vast. They include unusual fatigue from physical or mental activity, brain fog, temperature irregularities, rashes, memory problems and insomnia. It’s as if the body’s immune response to the coronavirus has thrown the nervous system out of whack, according to Dr. Dayna McCarthy, rehabilitation specialist at the Mount Sinai Center for Post-Covid Care.
Click to expand...
The lasting effects among those who survived another serious coronavirus disease, SARS, are not very encouraging. As the Mayo Clinic reported, “Many people who have recovered from SARS have gone on to develop chronic fatigue syndrome, a complex disorder characterized by extreme fatigue that worsens with physical or mental activity, but doesn’t improve with rest. The same may be true for people who have had Covid-19.”
Click to expand...
Brain-related effects of an active Covid-19 infection can include strokes, seizures and a temporary paralysis called Guillain-Barré syndrome. Many Covid patients lose their sense of smell and taste during the acute illness, but for some this neurological effect persisted for months after they had otherwise recovered. And questions remain whether the viral infection also will raise the risk of later developing neurological problems like Parkinson’s disease or Alzheimer’s disease.
Click to expand...
A study of 179 recovered Covid patients in Italy revealed a “worsened quality of life” months later in 44.1 percent, with a high proportion reporting ongoing fatigue, shortness of breath, joint pain and chest pain. In Dr. McCarthy’s experience, however, post-Covid patients do get better, although symptoms tend to wax and wane and improvement “is glacially slow.” She suggests that patients do things in smaller doses and not push themselves to live as they did before Covid, which can make their problems worse.
Click to expand...
You don't say. You mean the angry "scientist harassers" were right all along?!
 
Taking pandemic sequelae seriously: from the Russian influenza to COVID-19 long-haulers

https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(20)32134-6/fulltext

A bit meandering but still kinda relevant, especially how so many people keep using the "it's not the flu" in response to all the evidence of long-term health problems, despite the fact that "the flu" is more than one virus, several of which are known to cause similar problems.

It frankly overlooks many historical factors here, largely the dismissive and obstructionist role of psychiatry in making sure medicine did not learn a damn thing out of over a century of failures, that it's not events that left us ignorant but people making conscious, deliberate choices that ignored all the relevant factors and evidence. Didn't even look at swine flu, which caused similar problems as well. Very selective.
 
https://www.bmj.com/content/371/bmj.m3871

Editorials
Neuropsychiatric complications of covid-19

BMJ 2020; 371 doi: https://doi.org/10.1136/bmj.m3871 (Published 13 October 2020)

  1. Matthew Butler, NIHR academic clinical fellow neuropsychiatry1,
  2. Thomas A Pollak, NIHR clinical lecturer in neuropsychiatry1,
  3. Alasdair G Rooney, clinical lecturer in neuropsychiatry2,
  4. Benedict D Michael, senior clinician scientist fellow in neurology3,
  5. Timothy R Nicholson, clinical senior lecturer in neuropsychiatry1

Author affiliation

From acute delirium to long term fatigue, covid-19 has serious neuropsychiatric effects


Moderation note: Discussion about this paper continues here:
Neuropsychiatric complications of Covid-19, 2020, Butler et al
 
Last edited by a moderator:
Kalliope said:
World Neurology - The Official Newsletter Of The World Federation Of Neurology - has an article by Avindra Nath and B. Jeanne Billioux titled: Long-Haul COVID.

Many of these symptoms overlap with those of patients with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). The cause of ME/CFS remains unknown despite decades of research of the syndrome. Many of these patients similarly report a viral infection as a trigger, but since they come to our attention months and years after symptom onset, it is impossible to know what may have triggered the symptoms.

Long-Haul COVID thus represents as excellent opportunity to study the pathophysiology of ME/CFS that may have broader implications.

Article begins at page 1 and continues at page 3:
https://wfneurology.org/private/downloads/dmOeL3cfAVtVLhXhvm1Rnw/wn_jun_jul_20.pdf
Click to expand...
Jon Stone responded to this article. It's a bunch of BS, as usual.

https://n.neurology.org/content/reader-response-long-haul-covid

Avindra Nath’s article1 makes a welcome “call to arms” for neurologists to be interested in “long-haul COVID,” noting that many sufferers are “concerned that they could be stigmatized” as having a functional disorder. Research over the last 20 years has shown that functional disorders have their own neurobiology, they are commonly precipitated by physical experiences such as injury and (any kind of) infection, and they can affect anyone regardless of education or prior medical history.2 Functional disorders are genuine conditions, not synonyms for “nothing wrong” or “nothing biological.” The investigation of long-haul COVID should not be polarized at the outset by a false dichotomy between “biology” and “functional disorders.” We now have positive diagnostic features for functional neurological disorders involving motor and seizure symptoms, and increasingly for cognitive symptoms.3 Including these in phenotypic studies—especially as comorbidities—may help improve our understanding of long-haul covid and other post-viral syndromes.
Click to expand...
He is unfortunately defending a wholly imaginary version of what FND actually is, this "progress" is not real, the field has produced nothing of value and it would be devastating if these people played any role in Long Covid, as it would only serve as sabotage. The entire ideology will either be fully irrelevant or effectively sabotage all the things, there is very little in-between.

FND is, in fact, a synonym for "nothing wrong" and "nothing biological". It's the lies that really get me. The freaking bald-faced lies. They know they have to lie because their nonsense is indefensible and can't be said for what it is, so much that Stone completely misrepresents, well, everything.
 
In JS's universe the mind is the driving force causing biological (positive diagnostic features--his words). If there is actual evidence of biological changes this has generally been viewed as a biological illness requiring biomedical treatment. JS would have us believe that changing our thinking / behaviours is the answer to 'functional disorders' which is simply a phrase that is used to support this idea. There is absolutely NO scientific evidence that the mind is creating the symptoms and their biological features. None at all. It is simply assumed that this model is correct by those who believe in it. This is because it puts the treatment in their realm (mental health).

The sad reality is that for people who's illness is in the realm of mental health they are failing the many people who do not benefit from life counselling of limited and specific issues because their 'issues' are driven by biology not the mind (they present as symptoms in the mind).

For the BPS adherents it's all the same. All further investigating has stopped. There is nothing to be learned. Any technological innovations that show abnormal results will immediately be interpreted, without evidence, as what they believe. As an indication that the mind is changing the biochemistry of the person because they're mind is 'misinterpreting' 'over-focusing' on their symptoms. That is not evidence. That is interpretation based on belief.
 
Snowdrop said:
In JS's universe the mind is the driving force causing biological (positive diagnostic features--his words). If there is actual evidence of biological changes this has generally been viewed as a biological illness requiring biomedical treatment. JS would have us believe that changing our thinking / behaviours is the answer to 'functional disorders' which is simply a phrase that is used to support this idea. There is absolutely NO scientific evidence that the mind is creating the symptoms and their biological features. None at all. It is simply assumed that this model is correct by those who believe in it. This is because it puts the treatment in their realm (mental health).
Click to expand...

Exactly. The "biological" factors that JS thinks are involved are "functional" pathways in the brain. He thinks there is cross-wiring in the brain, giving false impressions of symptoms.

Notably, all of the brain imaging studies have been equivocal and have not found consistent abnormalities for any specific FND.
 
Kalliope said:
World Neurology - The Official Newsletter Of The World Federation Of Neurology - has an article by Avindra Nath and B. Jeanne Billioux titled: Long-Haul COVID.

Many of these symptoms overlap with those of patients with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). The cause of ME/CFS remains unknown despite decades of research of the syndrome. Many of these patients similarly report a viral infection as a trigger, but since they come to our attention months and years after symptom onset, it is impossible to know what may have triggered the symptoms.

Long-Haul COVID thus represents as excellent opportunity to study the pathophysiology of ME/CFS that may have broader implications.

Article begins at page 1 and continues at page 3:
https://wfneurology.org/private/downloads/dmOeL3cfAVtVLhXhvm1Rnw/wn_jun_jul_20.pdf
Click to expand...


URL returning a 404:

Try: https://worldneurologyonline.com/wp-content/uploads/2020/07/WFN_JJ.pdf

(page 1 and continued on page 3)
 
Snowdrop said:
In JS's universe the mind is the driving force causing biological (positive diagnostic features--his words). If there is actual evidence of biological changes this has generally been viewed as a biological illness requiring biomedical treatment. JS would have us believe that changing our thinking / behaviours is the answer to 'functional disorders' which is simply a phrase that is used to support this idea. There is absolutely NO scientific evidence that the mind is creating the symptoms and their biological features. None at all. It is simply assumed that this model is correct by those who believe in it. This is because it puts the treatment in their realm (mental health).

The sad reality is that for people who's illness is in the realm of mental health they are failing the many people who do not benefit from life counselling of limited and specific issues because their 'issues' are driven by biology not the mind (they present as symptoms in the mind).

For the BPS adherents it's all the same. All further investigating has stopped. There is nothing to be learned. Any technological innovations that show abnormal results will immediately be interpreted, without evidence, as what they believe. As an indication that the mind is changing the biochemistry of the person because they're mind is 'misinterpreting' 'over-focusing' on their symptoms. That is not evidence. That is interpretation based on belief.
Click to expand...

This described it beautifully. Everything sounds plausible when they say it but when the basic building block is wrong everything falls down.

They say that some signs found in a standard neurological examination shows the patient has FND and say this means FND is a robust diagnosis and not a diagnosis of exclusion. Yet every other sign found is taken to show a lesion in the brain. This is an extraordinary claim so there should be extraordinary evidence to prove it yet neurologists are complicit in accepting it without any evidence at all.
 
A comment from one of the editors, MD Kari Tveito, in the Journal of the Norwegian Medical Association on Long Covid.

From 2011 to 2013 she worked as senior doctor at the CFS/ME ward at Oslo University Hospital and was member of the National Competence Service for CFS/ME. She's also researched ME at the Norwegian Institute of Public Health, so it's interesting when she says:
The way in which patients who are ill, but with no objective findings, have been treated through the years does the medical profession little credit.

The text is in both Norwegian and English.

The textbook on long-lasting COVID-19 is written by the patients herself

Last, but not least, patient activists have used social media platforms to place long COVID on the agenda, while the health services quite naturally have been mostly busy handling the sickest patients during the first phase of the pandemic. To quote Tedros Adhanom Ghebreyesus, general secretary of the World Health Organization (5): ‘It appears that patients are writing the first textbook on long COVID.’ If this is so, we are witnessing more than a pandemic the like of which the world has not seen for a century; we are also witnessing a quiet revolution regarding what and who will shape the health services of the future.
 
Kalliope said:
The textbook on long-lasting COVID-19 is written by the patients herself

...To quote Tedros Adhanom Ghebreyesus, general secretary [sic] of the World Health Organization (5): ‘It appears that patients are writing the first textbook on long COVID.’ If this is so, we are witnessing more than a pandemic the like of which the world has not seen for a century; we are also witnessing a quiet revolution regarding what and who will shape the health services of the future.
Click to expand...


I wouldn't hold your breath when it comes to NHS England.

£10M for kickstarting "Long Covid" specialist services across England would not stretch very far - especially if the wish list includes:

Multi-Disciplinary rehabilitation services
Patients requiring a formal rehabilitation package should be assessed by a multidisciplinary team including (e.g.) rehabilitation, respiratory and cardiac consultant, physiotherapist, occupational therapist, psychologist and (if needed) neurologist.
Click to expand...
 
Kalliope said:
A comment from one of the editors, MD Kari Tveito, in the Journal of the Norwegian Medical Association on Long Covid.

From 2011 to 2013 she worked as senior doctor at the CFS/ME ward at Oslo University Hospital and was member of the National Competence Service for CFS/ME. She's also researched ME at the Norwegian Institute of Public Health, so it's interesting when she says:
The way in which patients who are ill, but with no objective findings, have been treated through the years does the medical profession little credit.

The text is in both Norwegian and English.

The textbook on long-lasting COVID-19 is written by the patients herself

Last, but not least, patient activists have used social media platforms to place long COVID on the agenda, while the health services quite naturally have been mostly busy handling the sickest patients during the first phase of the pandemic. To quote Tedros Adhanom Ghebreyesus, general secretary of the World Health Organization (5): ‘It appears that patients are writing the first textbook on long COVID.’ If this is so, we are witnessing more than a pandemic the like of which the world has not seen for a century; we are also witnessing a quiet revolution regarding what and who will shape the health services of the future.
Click to expand...
Doesn't seem particularly introspective of the role of that rotten National "Competence" Service, and thus her own, in not only doing that disservice but continuing it as we speak and for as long as they get away with it.

Feels a bit like Horton calling out half of all research bad but calling anyone who raises the possibility he had made one of those mistakes as dangerous revanchist activists, or whatever. Some research, not his, no, definitely not. Some people in medicine have done a disservice to some chronically ill patient, not the very misguided MUS/FND ideology that has dominated this Norwegian service and its inexplicable shilling for blatant quackery like LP.
 
Status
Not open for further replies.
Back
Top Bottom