News from Canada

Rather good article in Quebec's most-read newspaper, surprisingly so given how generally poor coverage has been in Canada.

Encéphalomyélite myalgique: qu’arrivera-t-il aux patients post-COVID?
Myalgic encephalomyelitis: what will happen to post-COVID patients?

Only annoyance is how it stresses the issue of how they might fall through cracks in the health care system, without really saying that those cracks definitely need closing. It mentions how governments and public health authorities have not moved into action, neglecting the fact that they neglected to do so based on what is common belief in medicine: that it is not a problem worth even thinking about.

https://www.journaldemontreal.com/2...gique-quarrivera-t-il-aux-patients-post-covid

https://translate.google.com/transl...gique-quarrivera-t-il-aux-patients-post-covid
 
Mij said:
"post exercise discomfort" I'm assuming is the translation from malaise.

No brouillard cérébral? Thank goodness they're using the term cognitive impairment.

Not a bad article.
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It's malaise in the original. Which is funny considering the word means the same in both languages.

You see the thing with the French is that we don't have a word for entrepreneur. (It's a W Bush joke)
 
Unmet needs of ME
For the next 4 weeks, the ME/FM Society of BC will be leading a conversation on important themes within the ME community. These themes were raised from patient conversations held during the Convene project (and shared in our report just released).

We hope to continue conversations with you on these topics. These conversations will lead up to May 12th, the International Day of ME –a global day of awareness for the ME community. Please join in with comments and share with your networks as we start our campaign: Unmet needs of ME – A community conversation.
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https://www.mefm.bc.ca/post/unmet-needs-of-me
 
Some COVID-19 long-haulers are developing a 'devastating' syndrome

Very good and quite detailed article, featuring Alain Moreau and Lucinda Bateman and also quoting Anthony Fauci (what he said at that meeting of the American Academy of Neurology recently).

"Worryingly, Moreau said a lot of the patients he’s seen are young women between the ages of 24 and 35.

“That is really, really scaring us, in terms of you don't want to end up with chronic complex diseases that will prevent you to go back to work and to accomplish your life when you are only 24 or 25,” he said.

Bateman, too, said she’s already witnessing an “explosion” of new ME/CFS cases in her clinic and that more research on the disease is urgently needed. She said the COVID-19 pandemic can provide them with a rare opportunity to study the evolution of ME/CFS from the initial infection.

“We now have the opportunity to document the virus that caused it and kind of track what happens as the illness evolves until it meets the same criteria we use for ME/CFS,” she said. “That then should inform and help us understand more about the situation ME/CFS patients are experiencing.”​

Full article:

https://www.ctvnews.ca/health/coron...e-developing-a-devastating-syndrome-1.5415288
 
Really good interview last night on CBC, the national broadcaster, with a physiotherapist who described both Long Covid and ME so well. She says at her respiratory clinic, about 90% of patients are LC. Although I think this may be a natural consequence of other respiratory diseases having more or less vanished for the time being.

Really glad for the host to ask pertinent questions, especially to ask about "that acronym, what is it?". Ends with: "you can't exercise your way out of this". If only we could, but we all tried, it's such freaking common sense a dog would probably think of it.

 
rvallee said:
One thing I will credit CBC for: they find the right people to talk to. Here a pediatrician.
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Naturally, there was the obligatory "we've never seen anything like this before" comment.

This was followed up by "10 per cent of people who get covid end up with long term symptoms" on multiple occasions.

Of course, medicine knows of no other virus that leaves 10 per cent of patients permanently ill.
 
Art Vandelay said:
Naturally, there was the obligatory "we've never seen anything like this before" comment.

This was followed up by "10 per cent of people who get covid end up with long term symptoms" on multiple occasions.

Of course, medicine knows of no other virus that leaves 10 per cent of patients permanently ill.
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I'm constantly amazed at how often those two contradictory ideas can be spoken within seconds of one another with zero awareness of the contradiction.

Dr Orwell made doublethink a virtue of some kind.
 
It appears that the LC clinics in Canada are basically on the same model as the UK clinics. The model being: bad. It's not a good model but it sure is a model.

They don't seem to diagnose ME, just give them a pamphlet, framing it as anxiety/depression, and send them packing with something about a local "ME clinic" that probably doesn't exist. About typical, but after a full year this is shamefully bad, zero learning from experience, total failure.

 
Pretty good article in a Quebec newspaper, said to be 1 of 3. Very fair article that uses the backdrop of LC but is mostly about ME. Has quotes by a former GP pwME and Alain Moreau. It's a smaller distribution paper but high quality. I think neglected is more accurate than ignored but that's a small issue compared to most articles.

One good thing, it mentions a GP who understood the issue following a presentation by Simon Décary, a physical therapy researcher who started a research rehabilitation program on LC and quickly adjusted, published a paper discussed here: JOSPT: Humility and Acceptance: Working Within Our Limits With Long COVID and ME/CFS - Décary et al - 2021.

Reads are limited to 4 per month but I don't know if this works from anywhere in the world.


An ignored disease highlighted by long-lasting COVID

https://www.ledevoir.com/societe/sa...ree-mise-en-lumiere-par-la-covid-longue-duree

https://translate.google.com/translate?hl=en&sl=auto&tl=en&u=https://www.ledevoir.com/societe/sante/607035/sante-une-maladie-ignoree-mise-en-lumiere-par-la-covid-longue-duree
 
Part 2 is out. Also excellent, continuing well on the first, even recognizing that pwME were among the first to predict LC even as medicine is still unable to. Almost sad it will have such a limited reach.


A clear similarity to long-lasting COVID

https://www.ledevoir.com/societe/sante/607578/sante-une-similitude-evidente

https://translate.google.com/transl...te/sante/607578/sante-une-similitude-evidente

While many doctors were dubious, or at best puzzled by the symptoms of individuals with long-lasting COVID, people with ME / CFS recognized them as their own right away. They had understood long before anyone else that these individuals had developed a disease unknown to the medical community which, in nearly 80% of cases, appears as a result of an infection.

Whether after the Spanish influenza pandemic of 1918 or following the outbreaks of SARS-CoV in 2003, H1N1 influenza in 2009 or Ebola in 2014, each time, a certain number of people having contracted one of the these viruses kept persistent sequelae of their infection, which are similar to those experienced today by people with long-term COVID and ME / CFS : rapid fatigue not relieved by rest, unexplained tachycardia, muscle and joint pain, difficulty concentrating, remembering and feeling like you are swimming in a mental fog.​
 
Part 3, focusing on research and how it's systematically blocked and demeaned, with quotes by Alain Moreau.


A disease neglected by research

https://www.ledevoir.com/societe/sa...ronique-une-maladie-negligee-par-la-recherche

https://translate.google.com/transl...ronique-une-maladie-negligee-par-la-recherche

ME / CFS, a disease for which there is still no treatment or even a test to diagnose it, has so far been largely ignored in research. The proliferation of long-lasting COVID cases which, in all likelihood, have developed a form of ME / CFS, has sparked massive investment from governments which should thereby benefit this "medically orphan disease".​
 
Long term benefits of cognitive behavioural therapy for those with Irritable Bowel Syndrome (IBS).
In 2015, the largest clinical trial called Assessing Cognitive Behavioural Therapy in Irritable Bowel (the ACTIB trial for short), led by Professor Hazel Everitt at the University of Southampton in collaboration with researchers at King’s College in London began. The trial aimed to address the clinical-effectiveness and cost-effectiveness of cognitive behaviour therapy (CBT) for irritable bowel syndrome (IBS). 8

ACTIB was a randomised, controlled trial with 558 adults participants with IBS randomly allocated to three groups. Participants would either receive therapist-delivered telephone CBT (telephone-CBT group), web-based CBT with minimal therapist support (web-CBT group), or treatment as usual (TAU group) and were followed up for 12 months.7 The treatment as usual group would continue to take their current medications and usual doctor follow-up with no psychological therapy for IBS.

All the participants in this group received standard information known as the NICE guidelines on lifestyle and diet approaches to managing IBS. 7

The results of this trial showed that CBT tailored specifically for IBS and delivered over the telephone or through an interactive website was more effective in relieving the symptoms of IBS than current standard care one year after treatment! 7

To evaluate the long-term benefits of CBT, in 2019, 24 months after the trial, investigators followed up with ACTIB trial participants. This 24 month follow up research published in Lancet Gastroenterology and Hepatology showed that benefits continued two years after treatment despite patients having no further therapy after the initial CBT course. 6 Interesting!
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https://cdhf.ca/health-lifestyle/long-term-benefits-of-cognitive-behavioural-therapy-for-ibs/

@dave30th
 
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