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

https://twitter.com/user/status/1355872343000805381

https://twitter.com/user/status/1355872751274352640


@PhysiosforME having to undo the harm caused by the BPS Cabal.

Link to twitter thread

 

Just adding what they say in connection to ME:

There have been attempts in the media to link long COVID with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME)19 or post-viral fatigue; however, this linkage has the potential to leave persistent symptoms uninvestigated and may be potentially harmful to patients.17

Certainly long COVID is currently unexplained, but organic pathology must be excluded before a plan for rehabilitation is suggested to the person living with symptoms.20

So the questions remain for GPs: ‘how am I going to differentiate long COVID from other complex symptoms?’, and ‘what resources are available for me to refer patients with long COVID to?’

There is a need to translate the NICE guidance12 into services for people with persistent symptoms.

This will require investment in UK-wide community diagnostics, access to therapies, such as physiotherapy, psychology (including Improving Access to Psychological Therapies services21), occupational therapy, and specialist rehabilitation, and organised as an integrated offer for patients.

Investment and commitment, however, is also needed by practices to ensure that we can offer continuity of care, recognising the value of the patient–doctor relationship in the delivery of high-quality, safe, care.

 

Surely that's an open admission that such investigations are not, as they are supposed to, being carried out for pwME?

Even as a lowly diagnosis of exclusion it is implied that things should be looked for (excluded), and treated if found.

What the above amounts to is saying that 'things' must be excluded, and treated if found, before any comparisons between LC and ME are considered.

 

The West German public-service TV broadcaster ZDF have a six minute news segment on Covid-19 and ME with Michael Stingl, the neurologist who tweeted this.

https://twitter.com/user/status/1356600982411567104

 

The Forever Disease: How Covid-19 Became a Chronic Condition

https://newrepublic.com/article/161102/covid-19-long-haulers-chronic-disease-health-care

Has an ironic quote by Greenhalgh:

Yes, only those 3 conditions. And no other. Not even Lupus. She really started this with a major deficit of, well, everything. It's the only annoying part, the rest is good.

Medium-length so quite a read but very well researched. Compared to the usual anyway.

 

A truly dreadful piece.

Basically it says all sorts of self-contradictory things that take nobody anywhere but emphasises that general practice is terribly important - including claiming patent rights over Long Covid:
Management of people with long COVID is the responsibility of general practice.
I wonder what it means to find the right GP? Is that because most GPs are no good at this - and that is why they have write this editorial and show them up?

Basically it says 'Na-na na na-na, it's my ball and I say who can play'. God knows what happens to the actual patients.

 

From the article in the New Republic that @rvallee mentions above:

Thoughts on the possibility of type-1 interferons playing a role in ME/CFS?

 

Opinion piece by a politician in Dagens Medicin (website for healthcare professionals in Sweden), demanding better healthcare for people with long covid and ME.

Dagens Medicin: ”Vården av långtidssjuka i covid måste säkerställas”
En av två kliniker för ME/CFS lägger ned, trots att mycket tyder på att behovet kommer att öka markant efter pandemin, skriver Catarina Wahlgren (V).
https://www.dagensmedicin.se/opinion/debatt/varden-av-langtidssjuka-i-covid-maste-sakerstallas/

Google Translate, English

 

Anticipating the Wave of Long-Haulers After the Pandemic
A contested illness on the horizon: how to think about the coming surge.

https://www.psychologytoday.com/us/...ting-the-wave-long-haulers-after-the-pandemic

 

Code:

https://twitter.com/TomKindlon/status/1356649247131713538

https://battlefordsnow.com/2021/01/...haulers-aim-to-treat-patients-stuck-in-limbo/

 

On TV in Sweden this morning:

TV4 Nyhetsmorgon: Covid-19 kan utlösa sjukdomen POTS: "Finns jättestor kunskapslucka"
https://www.tv4.se/klipp/va/1331814...-sjukdomen-pots-finns-jattestor-kunskapslucka

 

Ah, yes, "anticipating" something now that it's so large it's impossible to ignore. I, too, anticipate snow when there is already more than an inch on the ground. I have a 100% hit rate with that strategy. I will even make a bold prediction here: the Covid pandemic could be a big deal. I know, I know, premature claims like this sound like pure galactic genius to mere mortals. But I will make that bold claim here and now.

It's especially notable that he writes "contested" as a passive thing while he is pretty much doing just that: setting the stage that he contests it. That's like warning about violence because you are about to dish it. Jerk.

But this:

Ugh. Dude. No, you are definitely a stranger to brain fog, then. Fuck off.

 

https://www.psychologytoday.com/us/...ting-the-wave-long-haulers-after-the-pandemic it really seems like this is some form of fifth rate rag run by idiots who are happy to publish anything written by people who have not learned even the basics when it comes to science or indeed common sense . i am always offended by the abject failure of higher education to weed out these deluded individuals who think their opinions\beliefs are more important than robust scientific processes.
" last thing we want to do is create disease where only fear exists. As with cancer screening in low-risk populations, the more the screen, the more we may find, but the less confident we are that it's real " this is the kind of statement the insurance companies love .

 

I am listening to this podcast episode now. Not sure I'll be able to make a summary, but the Canadian researcher is taking about challenges in how to perform research into rehabilitation of Long Covid patients when there are so many unknown factors. At about 20 minutes in (where I'm at now) he talks about the Chalder Fatigue Scale which led him to the PACE trial, and then about problematic aspects with this trial.
https://twitter.com/user/status/1357018803985674243

 

Had a look at the researcher on Twitter and yesterday he tweeted the following:
https://twitter.com/user/status/1356651791878881289


https://twitter.com/user/status/1356651793795661824

 

I can't quite make out what he is wanting to say. Is this a proposed project - or a funded project? What project is it? What are the four pillars, one of which is social?!

I am intrinsically sceptical about tweets about people being excited for someone else's research, or maybe plans for research...

 

I don't know. But I recommend listening to the podcast episode linked above. Once he'd learned of problematic aspects with fatigue measures, about the PACE trial, PEM and results from patient-led research into Long Covid, he stopped his own research project.

I'm sorry, but am too foggy headed to write a proper summary..

 

According to the CIHR website the four pillars are:

As the Government of Canada's health research investment agency, the Canadian Institutes of Health Research (CIHR) supports excellence across all four pillars of health research: biomedical; clinical; health systems services; and population health.

https://cihr-irsc.gc.ca/e/37788.html

 

The podcast is also available on YouTube. It was a great episode about listening to and cooperate with patients when researching, how important it is to make sure you're not harming trial participants, how much there is to build from the ME community, how it is crucial with more investment in research into ME. He also tells how he has adapted his planned trial on Long Covid and rehabilitation, based on everything he has learned from Long Covid patients and the ME community. He goes forward with among other #StopRestPace as principle and wants to continue raising awareness about ME.

https://www.youtube.com/watch?v=3uf-TT9bzNI

 

section of transcript (edited for easier reading)

Simon: