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

[rvallee]

Bateman Horne Center published a video yesterday about clinical concerns of Long Covid. Pretty good. The video is 1h but the latter half of it is answering questions so the presentation is a bit under 30 minutes.

It uses prior knowledge from ME and FM as well as presents some of the recent evidence. Not much to learn to regular readers here but good overview.

 

[rvallee]

Long-term COVID-19 symptoms in a large unselected population

https://www.medrxiv.org/content/10.1101/2020.10.07.20208702v1

Our results show that 43.4% of COVID-19+ cases have symptoms lasting longer than 30 days, and 24.1% still have at least one symptom after 90 days. These numbers are higher for COVID-19+ cases who were initially more ill, 59.4% at 30 days and 40.6% at 90 days, but even for very mild and initially asymptomatic cases, 14.3% have complications persist for 30 days or longer. In contrast, only 8.6% of participants from the general untested population develop new symptoms lasting longer than 30 days due to any illness during the same study period.

The long-term symptoms most enriched in those with COVID-19 are anosmia, ageusia, difficulty concentrating, dyspnea, memory loss, confusion, headache, heart palpitations, chest pain, pain with deep breaths, dizziness, and tachycardia. We additionally observe that individuals who had an initial symptom of dyspnea are significantly more likely to develop long-term symptoms. Importantly, our study finds that the overall level of illness is an important variable to account for when assessing the statistical significance of symptoms that are associated with COVID-19.

 

[shak8]

Bateman Horne Center published a video yesterday about clinical concerns of Long Covid. Pretty good. The video is 1h but the latter half of it is answering questions so the presentation is a bit under 30 minutes.

It uses prior knowledge from ME and FM as well as presents some of the recent evidence. Not much to learn to regular readers here but good overview.

A bit chilling what happened to the 70yr old woman post Covid after "gentle" exercise regimen by a PT.

 

[Esther12]

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.

That is interesting - though we can have people like Wessely talking about how badly ME/CFS patients can be treated, and wishing that his colleague would take CFS more seriously... though not so much recently, now that it's inescapable that they've shaped the way patients are treated. The Norwegian Competence Service for CFS/ME and the NIPH have been (and still are) pretty appalling, so if this is sign of some people from there moving towards an apology that's a positive thing.

 

[Kalliope]

That is interesting - though we can have people like Wessely talking about how badly ME/CFS patients can be treated, and wishing that his colleague would take this problem more seriously, though not so much recently now that it's inescapable that they've shaped the way patients are treated. The Norwegian Competence Service for CFS/ME and the NIPH have been (and still are) pretty appalling, so if this is sign of some people from there moving towards an apology that's a positive thing.

I'm afraid nobody currently at the Norwegian Competence Service for CFS/ME or NIPH seems to be changing any views. Dr. Tveito left her position at the National Competence Service for CFS/ME several years ago and it was afterwards things really went downhill. The first doctor at the Competence Service, Barbara Baumgarten Austrheim, was marvellous. Frightening how so much comes down to having right people in the right positions.

 

[Sean]

We additionally observe that individuals who had an initial symptom of dyspnea are significantly more likely to develop long-term symptoms.

Interesting. Some form of hypoxia?

 

[Snow Leopard]

We additionally observe that individuals who had an initial symptom of dyspnea are significantly more likely to develop long-term symptoms.

Interesting. Some form of hypoxia?

I doubt it. The dyspnea likely just reflects a more substantial and prolonged infection.

Bateman Horne Center published a video yesterday about clinical concerns of Long Covid. Pretty good. The video is 1h but the latter half of it is answering questions so the presentation is a bit under 30 minutes.

The question about how cheap pulse-ox meters can be misleading was quite on-point. The problem can often be poor circulation in the extremities, rather than a lung deficiency. Generally speaking, even if there is long term lung damage (fibrosis etc), that reduces lung capacity, this won't reduce oxygen at rest. It will only cause hypoxia when undergoing significant exertion that reaches the lungs limits. Generally speaking most people have lung capacity that exceeds their heart/vascular capacity, unless they are highly trained athletes.
The sensation of shortness of breath is an effort-based indicator - it is because the brain is not yet used to the reduced lung capacity and is increasing the ventilation rate to compensate, hence increased perceived breathing effort.

 

[Milo]

The dyspnea likely just reflects a more substantial and prolonged infection.

I was just commenting on a post on FB about a new patient with ME that is also experiencing shortness of breath (she did not mention whether she had COVID or another onset).
My onset was EBV. I started having shortness of breath perhaps 10 months after onset. It was not an out of shape thing. At that stage I was trying to keep myself occupied and occasionally get out of the house and go on very short walks, walking very slowly. (like no more than 200 m from my car)- I was short of breath then. it did not make sense. I also had chest pain- which were related and reproduced on a tilt table test when I was diagnosed with POTS. At that time, I had a hacking cough that was not explained by anything- and was diagnosed with mild asthma with a respiratory test which I forgot the name-
I still occasionally experience shortness of breath, out of the blue, especially if I try to talk and walk at the same time- and even if I walk very slowly within my energy bubble when usually I would not be short of breath.

That person mentioned in the beginning of the post is also short of breath. While she may have another diagnosis or something else is going on, and of course I am no doctor and cannot diagnose anyone, especially on the internet- in my experience shortness of breath is not out of the ordinary- and it should be investigated to rule out other things.

 

[duncan]

However by separating out into arbitrary syndrome definition (arbitrary in this case at least) you may miss vital information.

But they do realize medical economies like streamlined reasoning, stripped bare of some unessential, and essential, thought and effort.

 

[Invisible Woman]

But they do realize medical economies like streamlined reasoning, stripped bare of some unessential, and essential, thought and effort.

Sure, but first you have to understand what it is you're looking at before you go defining it. If you narrow your field too soon then you miss important information.

It may well be necessary to make assumptions to give you a starting point but you then have to keep in mind that those were assumptions and therefore might be wrong and constantly look for evidence that they might be wrong.

There's been a very poor track record of this. For example the assumption that exercise cannot harm & ignoring patients efforts to report the harms based on your assumption being more valid than patient testimony.

Not recording harms and outcomes in clinics because of an unshakeable belief that the therapy can't harm.

Assuming patients who disappear are recovered and counting them as recovered because you have no record of harms & therefore your building block assumption that exercise cannot harm is wrongly reinforced.

 

[duncan]

Sure, but first you have to understand what it is you're looking at before you go defining it. If you narrow your field too soon then you miss important information.

I was just being silly. I agree with you 100%. There are many things I struggle to convey these days, and sarcasm is one. My bad.

But to your point that I highlighted, only in a good world with no agenda other that pure scientific inquiry. This is not a good world, and pretty much everyone has an agenda based on greed or misinformation, or job security, or power grab, or fear, or even legacy. Worse, today, it can be overt, and there is little in the form of repercussions to those who indulge in sleight-of-hand-medical-inquiry.

 

[Leila]

LongC on GMB; just mentioning "fatigue".
Some chitchat with a doctor who's husband is suffering from LongC.
At least, it seems to get a lot more attention in main stream media now.

 

[Invisible Woman]

I was just being silly. I agree with you 100%. There are many things I struggle to convey these days, and sarcasm is one. My bad.

. Not at all.

That's the trouble - something that's so glaringly obvious to us and yet researchers and those involved in public health and policy making (and very well paid from the public purse) seem oblivious.

Even if they are genuinely that clueless over first principles those who should have oversight or those who control the funds should see it. But no. Never any financial repercussions and the gravy train rolls on.

I admit, I sometimes lose perspective. Can't tell if I'm the one divorced from reality or them. It's like taking gaslighting to a whole new level.

 

[rvallee]

I lost my voice to COVID-19

https://www.chicagoreader.com/chicago/covid-19-long-haulers-oped/Content?oid=83315362

In early January, I contracted COVID-19 on an international flight home to the United States. It started with the symptoms of a simple cold, then within a couple of weeks, chest pain, abdominal pain, and shortness of breath. That was followed by unrelenting fevers starting in early March and exhaustion even with the most basic tasks like talking or taking a shower, as I moved into the basement to isolate myself from my wife and nine-year-old child. Later, I developed vein inflammation and a voice-box ulcer. Most recently, at nearly nine months since onset, I was diagnosed with post-viral syndrome, otherwise known as myalgic encephalomyelitis.

Medical hope arises for individuals, and for the collective, when a problem is acknowledged with grace and honesty and when considerations for individual differences are provided, even when all the pieces are unknown.

And that is exactly how medicine completely screwed up Long Covid. It failed at acknowledging a massive problem for decades and now we have to face the absurdity of predictable problem being out of control with no one knowing what to do or even to begin with. Instead most seem to have this imaginary version of how it should end: "recovery". Even though no one can actually define it, for the same reason: the problem was never acknowledged and now the oldest problem in medicine continues to birth all new problems while continuing to grow the old failures that are somehow generally presented as a success.

Rejecting reality and substituting your own never works, never will. So why is it actual common practice in medicine?

 

[Snowdrop]

While this is a new disease and we are learning more about its impact..., services will need to be better equipped to support people with ongoing COVID, as emerging evidence is showing there are significant psychological and social impacts that will have long term consequences," the report said.

It's like they make invisible the actual physical debility that is the cause of the psychological and social stressors.

It's good to have psychological support but it is not a substitute for medicine working toward finding solutions that reduce or eliminate the physical disease process.

And they include social impact but I wonder what kind of support is available in that category for L-C people. No doubt to the BPS cabal psychological support is social support because the psyche and the social are one in some misguided non-dualist fantasy.

 

[Leila]

A Komaroff on Long Covid and parallels to ME

The tragedy of the post-COVID “long haulers”

"Long-haulers include two groups of people affected by the virus:

• Those who experience some permanent damage to their lungs, heart, kidneys, or brain that may affect their ability to function.
• Those who continue to experience debilitating symptoms despite no detectable damage to these organs.

Dr. Anthony Fauci, director of the National Institute of Allergy and Infectious Diseases at the National Institutes of Health, has speculated that many in the second group will develop a condition called myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). ME/CFS can be triggered by other infectious illnesses — such as mononucleosis, Lyme disease, and severe acute respiratory syndrome (SARS), another coronavirus disease. The National Academy of Medicine estimates there are one million to two million people in the US with ME/CFS.

Dr. Tedros Ghebreyesus, director of the World Health Organization, also has expressed growing concern about the chronic illnesses that may follow in the wake of COVID-19, including ME/CFS."

 

[Kalliope]

NIHR review:
Living with Covid19
Published on 15 October 2020
doi: 10.3310/themedreview_41169
A dynamic review of the evidence around ongoing Covid19 symptoms (often called Long Covid).
https://evidence.nihr.ac.uk/themedreview/living-with-covid19/

Brief news item here
https://www.bbc.co.uk/news/health-54540544

Medscape Long COVID 'May Be Four Syndromes'
"We believe that the term 'long COVID' is being used as a catch-all for more than one syndrome, possibly up to four," said Dr Elaine Maxwell, the review's author.

She told a briefing hosted by the Science Media Centre (SMC) that while some patients experience "classic post-critical illness symptoms", others reported "fatigue and brain fog in a way that's consistent with post viral fatigue syndrome".

 

[Dolphin]

Medscape Long COVID 'May Be Four Syndromes'
"We believe that the term 'long COVID' is being used as a catch-all for more than one syndrome, possibly up to four," said Dr Elaine Maxwell, the review's author.

She told a briefing hosted by the Science Media Centre (SMC) that while some patients experience "classic post-critical illness symptoms", others reported "fatigue and brain fog in a way that's consistent with post viral fatigue syndrome".

This is her full quote that I have seen in a number of places:

"Some people experience classic post critical illness symptoms, others experience fatigue and brain fog in a way that's consistent with post viral fatigue syndrome.

"Some people have clear evidence of permanent organ damage caused by the virus, particularly lung damage and heart damage.

"But a significant group have debilitating symptoms that do not fit any of those three categories. They describe the rollercoaster of symptoms that move around the body."

 

[Dolphin]

Long Covid could actually be FOUR different syndromes as top scientists admit they are still baffled by the lasting effects of the disease

• The National Institute for Health Research reviewed current evidence
• They suggested the long list of symptoms of Long Covid can be split into four
• But they are reluctant go give a definition in case it excluded others suffering
• The team said they do not know what the risk factors for Long Covid are
• It's not clear how many have it, either. But it will be a 'significant burden' for NHS

https://www.dailymail.co.uk/news/ar...ent-syndromes-scientists-admit-dont-know.html

I haven't followed a lot of the links that were posted today. But this contains more comments from the "experts" than I have seen in some pieces I have flicked through today.

 

[Tom Kindlon]

Dr Strain who has a CFS clinic in Exeter mentions “chronic fatigue” towards the end.