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

https://twitter.com/user/status/1312762609515413505

 

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.

 

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

 

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

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:

https://twitter.com/user/status/1312837854175866885

 

https://www.virology.ws/2020/10/04/trial-by-error-more-on-the-royal-society-of-medicine-webinar/

 

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?

 

Well, as long as the volte-face is complete, and includes ME and other patients with 'unexplained' fatigue, I for one won't complain. We need to find a way to move this whole thing forward now – we can argue about the history later.

 

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.

 

A rather long twitter thread, but a good one, I think. It continues for the next three posts in this thread.

https://twitter.com/user/status/1312894584821776384

https://twitter.com/user/status/1312894587212627968


https://twitter.com/user/status/1312894589775347712


https://twitter.com/user/status/1312894592186974209


https://twitter.com/user/status/1312894594535882752

 

https://twitter.com/user/status/1312894596930768897


https://twitter.com/user/status/1312894599548022784


https://twitter.com/user/status/1312894601959702529


https://twitter.com/user/status/1312894604128247814

https://twitter.com/user/status/1312894606330269697

 

https://twitter.com/user/status/1312894608490233857

https://twitter.com/user/status/1312894610679754752


https://twitter.com/user/status/1312894733337976832


https://twitter.com/user/status/1313014417232211968

 

The Times: Lingering coronavirus symptoms worse than death toll, says Professor Tim Spector

Article is paywalled.

 

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.

 

Absolutely.

 

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.

 

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.

 

I'm willing to bet Chew-Graham's publicly stated views on GET will change depending on the audience. Much like Wessely's.