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

This was a good podcast from Pain Speak hosted by dr. Deepak Ravindran, NHS Consultant in Pain, Anaesthesia, MSK and Lifestyle Medicine. The episode is titled: Chat with Darren Brown Co-Founder of LongCovid Physio. Duration: 51 minutes

Darren Brown is such a great spokesperson and advocate for Long Covid! I got the impression he provided several light bulb moments for the host. He also mentioned ME a couple of times. Here's a quote:

- I don't think enough people are aware of these things.. yet. And I think that's because, unfortunately, the area of ME/CFS probably would have been an area that would have given us SO much information to manage this, has been a massively under-resourced and under-researched area, which is incredibly devastating not only for the people that are affected with that condition, but also now in the pandemic where there could have been so much translated knowledge.

https://www.buzzsprout.com/817123/8528919

 

And still what they say is complete BS. This is not the first time medicine has had the opportunity to study this. And obviously this is not the first time we know the responsible pathogen, this is a claim that is so often repeated and is an especially insulting slap to the face to, say, Lyme disease, who have clearly not been helped by this knowledge. In order to make progress people have to either stop making stuff up or get up to speed with reality or I don't know what else makes them say these obviously false things but they have to stop ASAP.

The subject is so taboo it's impossible to discuss it without at least one significant misleading framing or plainly wrong fact. What a mess. Medicine needs to do so much better it's not even funny how much work they have to do on themselves first.

 

Sobering talk from dr. Avindra Nath on neurological complications following SARS-CoV-2. The talk was hosted by Body Politic.

He mentions post viral syndrome briefly towards the beginning and his research into CFS towards the end of his talk. In the Q&A-session he seems to confuse the PACE trial and GET with pacing (58 minutes), saying pacing makes ME patients worse.

Also says that all the research into post Covid will be beneficial to several other diagnosis, including ME.

https://www.youtube.com/watch?v=YpfHoz22ePk

 

I've not listened to it yet but I note
"Dr Deepak Ravindran, a full time NHS Consultant specialising in Pain, Anaesthesia, MSK and Lifestyle Medicine. Dr Ravindran is also the author of the book, 'The Pain Free Mindset' and is the Lead for the Longcovid service and the Pain medicine Service at the Royal Berkshire NHS Foundation Trust."

 

I think that background made the podcast even more interesting, because he actually seemed to listen and widen his perspective. For instance towards the end he talked about how his clinic has used questionnaires that made them confuse fatigue with depression.

 

I was wondering what MSK (don't have time to watch video) was and looked it up: "Musculoskeletal (MSK) conditions".

 

Sympathetic article from Austria, includes an interview with neurologist Michael Stingl:

ORF.at: "Long Covid" und ME/CFS - Genesen und doch krankhaft erschöpft
google translate: "Long Covid" and ME/CFS - Recovered and yet morbidly exhausted

quote:
For the neurologist Stingl it was already clear last summer “what is in store for us. One should have responded to 'Long Covid' by autumn at the latest. I am afraid that this information is too late now, as many will no longer take it seriously after a year of pandemic ”.

 

Thanks for this! I can't speak German very well, so I don't follow German-language media, although I really should.

Michael Stingl is the closest ME/CFS specialist to Hungary, geographically speaking, and several months ago I included him as the only specialist in my list of doctors in the group (the other three, all Hungarian, are not specialists - they recognize and diagnose ME/CFS, maybe give some medicine but aren't fully immersed in it - at least yet). Anyway, I know that some of my group members contacted him and had an online consultation with him and I also know that he diagnosed at least one of the covid long haulers in my group with ME/CFS. So he is useful here too.

 

That's wonderful to hear. He seems to be one of the doctors who "gets it", and collaboration across borders is great. Well done for connecting people!

 

Since personal awareness is almost universally required for people to get it, it could be significant that the former administrator of Medicare/Medicaid services and person currently in charge of the US government's response to Covid has a child suffering from Long Covid.

https://twitter.com/user/status/1394660455327707138

 

BBC program on Long Covid. Might be of interest. Not able to listen with my IP address from abroad.

 

Hi, don't know if this helps, but you can listen to most BBC radio (live and ondemand) from anywhere in the world. Radio doesn't have the same geographical restrictions bbc tv does. Kx

 

Two days ago the Swedish radio programme Vetenskapsradion På Djupet aired a bad episode, on "the debate" about whether long covid is a real illness or a cultural illness. I posted about it in the BPS long covid thread.

Yesterday they aired a sympathetic episode about long covid. ME was not mentioned, but they talked a bit about PVFS after EBV, SARS etc.

Vetenskapsradion På Djupet: Patienter med postcovid börjar hitta hem
https://sverigesradio.se/avsnitt/1727035

 

Yesterday, 18 May, there was an interpellation debate about people with long covid, in the Riksdag (the Swedish parliament).

The video recording and written versions of all the addresses are available on their website:
https://www.riksdagen.se/sv/webb-tv/video/interpellationsdebatt/langtidssjuka-i-covid-19_H810443

The documents are available here too:
https://www.riksdagen.se/sv/dokument-lagar/dokument/interpellation/langtidssjuka-i-covid-19_H810443

I haven't watched/read it myself (yet), and I haven't yet seen many comments on social media either. Here's one:

https://twitter.com/user/status/1394661176303230978

What is an interpellation debate in the Riksdag?

 

Book review on a Danish news site about health of a book about Long Covid. It mentions ME towards the end.

quote:

It's completely real, and what people are experiencing is real. And I must say that it is completely different from anything else I have previously experienced as a doctor, ”states Lars Østergaard, who encourages the surroundings to recognize the diverse and complex symptoms that people with late effects experience.

"It applies to family and friends. But this also applies to general practitioners, the hospital sector, municipalities and not least employers. It is of great importance for the patients' health, mental and social situation that they are met with understanding and recognition from their surroundings. Part of the challenges in dealing with the new disease has been to develop a definition of when you have late effects after COVID-19, because it can be difficult to distinguish between when the symptoms are part of the course of the disease and when it is actual late effects ”, explains Lars Østergaard, who according to the book also acknowledges that right now there is very little that doctors can do for patients due to still lack of knowledge about the cause.

"You can't exercise or work your way out of this. It is more about noticing where one's own boundaries go both in relation to physical and cognitive manifestations - and then being true to them, "states Østergaard, who at present does not want to promise that everyone will recover.

Never recovering, not getting well, but being left on the platform when the rest of society gets back on track is a pervasive fear of a number of the interviewees. Not least in those who cannot document that they have been infected with coronavirus and therefore are without the diagnosis that provides access to treatment and help.

And one understands their concerns, because the risk of especially the undiagnosed blindly being placed in the health care litter boxes for ME and functional disorders does not seem unlikely, after reading Visby and Kabel's interviews with some of the book's participants, for their symptoms before corona would certainly have led to the diagnoses ME or functional disorder.

Sundhedspolitisk tidsskrift: Ny bog viser, hvordan covid-19 kan sætte livet på standby på uvis tid
Google translate: New book shows how covid-19 can put life on standby indefinitely

 

I listened to this - very interesting. I thought it unusual to hear medical professionals with Long Covid talking about the same problems that ME sufferers have had for decades, i.e. no medical help and extreme worry about finances.

 

Double Down News asked for questions for Prof John Ashton.

I posted this and it was removed by an unseen hand.

 

The co-existence within a few sentences of "this is brand new I have never seen this" and "this is just like this other thing which we see a lot" is truly bizarre, in the hands of professionals who should know better it's straight up absurd.

Of course the author misunderstands the issue and seems to consider ME and FND to be legit but LC different because it's not conversion disorder. For the very same reasons why ME and FND are not. Which, again, is super weird coming from experts, because they use the same arguments for the same reasons and yet they have this binary flip applied to us. It has nothing to do with reality or evidence, it's just an automatic flip function that is applied mindlessly.

We've seen already, from alleged ME experts no less, but the whole "this isn't ME or CFS these people have PEM and that doesn't happen with ME or CFS" is going to be so damn annoying and foolish.

For this alone the author really should have waited to write this book, waited to know enough on the topic to justify writing a book.