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

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Tom Kindlon said:

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Both in terms of symptoms and the tendency to be overlooked, Long Covid has much in common with other post-viral conditions, such as ME or Chronic Fatigue Syndrome (CFS). Patients in those communities spent decades being dismissed by medical professionals who regarded their illness as psychosomatic, before finally gaining recognition.
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Recognition: file not found

Where does that even come from? Nothing has changed. We're making some headways but current efforts are still less than 1% of what they should be. It annoys me so much when newspapers report that. Why? It's not even close to be true. Might as well say we've got this climate change thing under control and that it's now a worry of the distant past. Please stop lying about us, please and thank you.
 
Kitty said:
From today's Grauniad – apologies if it's already been posted, I couldn't spot it:

Long Covid: the evidence of lingering heart damage

https://www.theguardian.com/world/2020/oct/04/long-covid-the-evidence-of-lingering-heart-damage
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It wasn’t entirely unexpected that Covid-19 would lead to cardiovascular problems. Other viral infections such as Epstein-Barr virus and Coxsackievirus are known to be capable of causing heart damage ranging from mild to severe, while retrospective studies also found that both the Sars and Mers coronavirus outbreaks left some people with lasting heart complications. One 12-year follow-up of 25 Sars patients found that 11 (44%) still had long-term cardiovascular abnormalities when scans were taken.

Cardiologists say that Covid-19 has been different, both because of the much larger numbers of patients likely to be affected – there have been more than 32 million reported cases of Covid-19 as of 24 September, while Sars and Mers only affected 8,098 and 2,519 people respectively – and the greater extent of damage it leaves. It is thought that in some cases, the shortness of breath reported by Covid-19 patients may actually be due to damage to the heart rather than to the lungs.

“The original Sars virus did cause cardiac damage in a small proportion of patients. However, the extent of cardiac injury from Covid-19, as reflected by the release of biomarkers such as troponin in hospitalised patients, is surprising,” says Liu of the proteins that help regulate the contractions of the heart.
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Other viral infections such as Epstein-Barr virus and Coxsackievirus are known to be capable of causing heart damage ranging from mild to severe
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Is it really "known" if it's systematically dismissed in practice? Lots of things in medicine appear to be generically "known" but also silly to suggest in any particular case, or even "known" enough as to have been expected. Which it clearly wasn't, again. In fact even in confirmed cases of COVID most patients had to insist just to get basic check-ups, told it was silly to worry so much about these things. Had it not been for severe patients getting all the attention, this would likely have been missed entirely, dismissed as alarmist and clearly causing all that weird mass hysteria going on.
 
An older article but it contains a very important piece of wisdom, an inevitability I raised a few months ago but should really come into focus soon if we want to do better at dealing with the consequences of COVID-19.


Neurologic manifestations of nonhospitalized patients with COVID‐19 in Wuhan, China

https://onlinelibrary.wiley.com/doi/full/10.1002/mco2.13

Furthermore, the standard operation procedure (SOP) in most hospitals uses PCR tests with pharyngeal swabbing samples to diagnose COVID‐19, while patients who have no typical upper respiratory symptoms but suffer neurologic manifestations might be tested negative by following this SOP. These patients represent important hidden sources of contagion. Failure to identify and accurately manage patients who had no/light respiratory symptoms, but clear neurologic manifestations could lead to prolonged pandemic and even worse, pandemic resurge.
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The MUS/BPS/FND ideology is a clear and present danger to human civilization, making it unnecessarily harder to get the pandemic under control and leaving thousands, possibly millions, with disabling health problems all because of silly personal beliefs that make silly assumptions such as medical science being full and complete with only a few i's to dot and a few t's to cross. On top, of course, of the already massive harm that destroyed millions of lives, but those don't count yet, for the same reasons.

Well-spotted:

 
Professor Chew-Graham endorses pacing

Given all that, I was surprised by Professor Chew-Graham’s relatively muted expression of support for graded activity and her explicit endorsement of pacing as a viable option. This seems to represent something of an about-face. In the webinar, she discussed a qualitative study she conducted in July and August for which she interviewed 30 so-called “long-haulers”–patients who reported becoming sick in the early weeks of the pandemic and continued experiencing serious symptoms.

The distress of these patients over their inability to find sensitive and appropriate medical care seemed to have created a strong impression on Professor Chew-Graham. Some or many of them were experiencing symptoms for long enough that they might have met the 2007 definition of CFS/ME from the National Institute of Health and Care Excellence. Or perhaps they would fall into the MUS category that Professor Chew-Graham has so long championed.
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https://www.virology.ws/2020/10/04/trial-by-error-more-on-the-royal-society-of-medicine-webinar/
 
Given all that, I was surprised by Professor Chew-Graham’s relatively muted expression of support for graded activity and her explicit endorsement of pacing as a viable option.
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Wessely once said something about "treatment" for ME patients being about giving the patient the opportunity to reverse course without a loss of face (paraphrasing).

I wonder if the plight of the covid long haulers is providing that opportunity to the likes of Chew Graham?
 
It is interesting that in the webinar which dave refers to in that blog, at about 43, Miller discusses the need to discriminate between those with organ damage and perhaps the majority who have "post-viral chronic fatigue syndrome". It is not clear where this leaves Alwan and her friends.
 
How do all these people, who six months ago were wholly unaware of any of the issues involved, make such confident assertions about what "is", when they don't have definitions, criteria or any understanding of sub-groups. "Things" may be classified in a variety of different ways, depending onthe particular aspects one wishes to consider.

There is no such "thing" as long covid. At present there are just a large number of people suffering from a large number of symptoms. The ways in which they may be grouped are entirely arbitrary human constructs. For some purposes it helps to look at the common aetiology, for others it helps to look at the other conditions with shared symptoms. Why is this difficult to understand?

EDIT by way of illustration, I would suspect that there are people with symptoms of "long Covid", whose symptoms are closer to those of some people diagnosed with "ME" , under any of its multitude of names, than they are to the symptoms of other people with "long covid", but at the other end of its spectrum.
 
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chrisb said:
There is no such "thing" as long covid. At present there are just a large number of people suffering from a large number of symptoms.
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Yes, I think this is true & may well muddy the waters.

Possibly the majority of people with "long covid" contracted the virus but without (accurate) tests no one knows for sure.

It is entirely possible that some patients caught some other virus such as EBV, or something else and are experiencing prolonged symptoms after that.

The people who have "long covid" may already be quite a heterogenous group who just happened to get sick within the same time frame - the majority with covid.

As the diagnosis of ME (or CFS as will be written on many medical records) is already quite a heterogenous group I think it's fair to say there is likely to be overlap but also likely to be many who don't fit into both categories.
 
chrisb said:
There is no such "thing" as long covid. At present there are just a large number of people suffering from a large number of symptoms. The ways in which they may be grouped are entirely arbitrary human constructs.
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It's taken us years and years to get our own, nice, cosy, too-hard basket so I agree that they shouldn't expect to be let in ours. Work on it for a decade or two and then you might get your own, I say.
 
Andy said:
Professor Chew-Graham endorses pacing

Given all that, I was surprised by Professor Chew-Graham’s relatively muted expression of support for graded activity and her explicit endorsement of pacing as a viable option. This seems to represent something of an about-face. In the webinar, she discussed a qualitative study she conducted in July and August for which she interviewed 30 so-called “long-haulers”–patients who reported becoming sick in the early weeks of the pandemic and continued experiencing serious symptoms.

The distress of these patients over their inability to find sensitive and appropriate medical care seemed to have created a strong impression on Professor Chew-Graham. Some or many of them were experiencing symptoms for long enough that they might have met the 2007 definition of CFS/ME from the National Institute of Health and Care Excellence. Or perhaps they would fall into the MUS category that Professor Chew-Graham has so long championed.
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I'm willing to bet Chew-Graham's publicly stated views on GET will change depending on the audience. Much like Wessely's.
 
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