News from Canada

This is honestly so close to children's books and their "and everyone lived happily ever after". It depicts a desirable outcome as if it's usually the case, in a context where it's basically never the case. As straight up delusional as weird bank or financial marketing going on about "you're richer than you think" and other meaningless tripe. Or maybe it's just that barely anyone in the systems gives a damn that this is mostly performative and a massive failure.

The fiction: talk to your doctor about this issue.
The reality: patients report mass gaslighting, and it's widely known there is no treatment and most physicians don't believe in it anyway and you are entirely on your own here

Truthiness, so hot in medicine right now, and before, and probably for a while if we're being realistic.

 

Does California have the cure to Canada's nursing crisis?

California — the first, and so far only state to legislate a similar ratio — hails its 1999 legislation as a qualified success and provides a tentative glimpse of the future of nursing in B.C.


https://www.thestar.com/news/canada...sons-learned-from-california.html?li_source=L

In the past year in Ontario, 2 nurses care for up to 50-60 ER patients.

 

Just a couple of comments on the latest update here in Canada. Dr mentioned in the news coverage provides DNRS program for $$. (DNRS is brain retraining)

and nurses in BC- they are currently voting on a very good contract offer from government, limiting nurse to patient ratio and wage increase over several years- it is nice to see that the government is investing in the health care system. This said though, it does not change anything for pwME.

 

Haven't really dug for details, but:

A $6M grant from Brain Canada will fund the creation of a new Open Science patient registry, to share data with researchers around the world and let patients see how their data is used to develop new treatments for neurological disorders.   ​

https://braincanada.ca/announcements/6m-grant-for-new-open-science-patient-registry/

https://twitter.com/user/status/1651996955571109889

 

Awesome!

 

Let's hope they've got their criteria in order.

 

UCalgary cardiovascular health researchers recognized nationally for advancing inquiry and knowledge of women-specific health health issues.

Autonomic research in women
Raj’s research program focuses on autonomic nervous system disorders that mainly impact females.

He is an internationally recognized expert on postural orthostatic tachycardia syndrome (POTS), a debilitating condition with more than 90 per cent of patients being females of childbearing age.

Raj also studies long COVID syndrome, which can cause problems such as a racing heart, fatigue and light-headedness, in both females and males. His research has revealed that both sexes with long COVID are susceptible to autonomic nervous system disturbances. Females often have more debilitating symptoms than their male counterparts.

“It turns out there is a big difference in how males and females are impacted by long COVID,” says Raj. “This not only has direct implications on how we treat long-COVID patients, but it also shows the importance of sex-based analysis.

“Females make up more than half the population, and it’s not a fair assumption that they respond the same as males. The main lesson is that if you don’t ask the question, you won’t know.”

https://news.ucalgary.ca/news/ucalg...ed-nationally-advancing-inquiry-and-knowledge
No mention of M.E/CFS

 

In Canada, healthcare is a provincial authority. The federal government sets some standards and can provide additional funds but the provinces decide how most of it gets used, this is defined in the constitution. A provincial health authority in Quebec published guidelines for ME that are pretty good, go further than the NICE guidelines in most of the right places.

Zero mention of COVID and how it's a major risk factor right now. I don't know how that's possible, but there's just always major glaring omissions even in the best case. Omissions that almost always tell that they don't actually understand the information.

I strongly doubt they change anything for patients, if this information is merely advisory no one will act on it, but it's something. And that's the state of things for us, basically: whenever there's something, anything, it doesn't actually change anything at all, even if it's actually mostly correct. Until the day it does, but we're far from it.

In French:

https://www.inesss.qc.ca/fileadmin/...ptimal/2023_EM_Fatigue_chronique_Outil_VF.pdf
https://www.inesss.qc.ca/fileadmin/...2023_EM_Fatigue_chronique_Aide_memoire_VF.pdf

In 2009, INESS published a good report on ME. By the usual standards, very good. Didn't change anything at all.

 

Ottawa's new plan could force hospitals to report ill effects of herbal remedies, supplements

OTTAWA -

A new plan to force hospitals to report adverse effects of "natural health products" such as herbal remedies and supplements has come as a surprise to manufacturers, who say they were blindsided by the proposed change.

The federal government included the plan in the 2023 budget bill, which is still making its way through the House of Commons.

https://www.ctvnews.ca/health/indus...-effects-of-natural-health-products-1.6412461

 

good.

 

Chronic fatigue syndrome, what is it?

https://euro.dayfr.com/covid-19/359803.html

 

The group in charge of the guidelines part (that's the Cochrane/McMasterU nexus of doom) of Canada's, uh, effort on Long Covid, has a survey asking stakeholders about, uh stuff. The questions are very generic and broad, suggesting the process is still not even on the starting line. Not encouraging, to be honest.

Basically all they ask is "do you agree those are priorities, rate & comment":

1. Prevention of post-COVID-19 condition
2. Testing, identification, and diagnosis related to post-COVID-19 condition
3. Pharmacological & non-pharmacological clinical interventions for post-COVID-19 condition
4. Neurological and psychiatric topics
5. Pediatric and adolescent topics
6. Health care services and systems, social support​

Somehow they're supposed to spend something like CAD $9M. Good grief.

https://www.research.net/r/canpcctopics

 

Almost $3M for clinical trials for psilocybin-assisted psychotherapy. With 1 in 5 Canadians experiencing mental health or or substance issues each year, we must explore new and innovative ways to help people.

/www.canada.ca/en/institutes-health-research/news/2023/06/government-of-canada-invests-nearly-3-million-to-study-the-potential-benefits-of-psilocybin-assisted-psychotherapy.html

 

That's interesting. I would consider trying it if it was an option. I do have emotional difficulties, but I'd say they're more similar to "end-of-life psychological distress in advanced-stage cancer patients" than depression. Not that I'm dying, but ME is a similar position of severe incurable illness.

 

@RedFox

I've known one person in real life who took psilocybin under supervised care and it was life changing for his PTSD and anxiety.

 

https://twitter.com/user/status/1679298997914071041

 

On July 7, 2023, Mr. Acuna was sentenced to a $12,000 fine and a two-year probation order prohibiting the possession of sodium chlorite and the advertisement, sale, and manufacturing for sale of any unauthorized health products, including drugs and natural health products.

MMS has been promoted under different names, such as "Miracle Mineral Supplement" and "Master Mineral Solution." These products have been promoted as treatments for a range of health ailments, including serious conditions such as cancer, HIV/AIDS, childhood autism and COVID-19.

Sodium chlorite is a chemical used mainly as a textile bleaching agent and disinfectant. Ingesting sodium chlorite can cause poisoning, kidney failure and harm to red blood cells that reduces the ability of the blood to carry oxygen, among other effects. It can also cause abdominal pain, nausea, vomiting, and diarrhea.

https://www.canada.ca/en/health-can...le-mineral-solution-an-unauthorized-drug.html

Copied to this thread:
Warnings against dangerous Miracle Mineral Solution (bleach)

 

En français:

Alain Moreau:

La signature biologique laissée dans l’organisme par la fibromyalgie (le 12 mai)

https://www.youtube.com/watch?v=ZPfE8vMZb8Y

#fibromyalgie #Fibromyalgia #Fibrositis #Fibro #FMS #FM

 

Something I missed happening in Quebec. I know there is at least one other user from here.

INESSS, as far as I know the equivalent of NICE for Quebec (health is a provincial authority so we have 10 such authorities) has published a guideline in April 2023. From memory, it's probably around the time they published a similar one for Long Covid, although it makes no references to LC. It's very light on the infectious nature/trigger, however.

There is a currently ongoing consultation by INESSS, the body in charge of medical guidelines and recommandations. It's about clinical management of ME/CFS and currently has 3 surveys. It asks questions about those few recent publications.

Il y a présentement une consultation menée par l'INESSS, l'authorité en charge des recommandations cliniques. Pour l'instant il y a 3 sondages, sur les documents publiés cette année.

Main page with document links and surveys / page principale du projet avec liens sur les documents en sondages:

THE MANAGEMENT OF MYALGIC ENCEPHALOMYELITIS / CHRONIC FATIGUE SYNDROME

PRISE EN CHARGE DE L’ENCÉPHALOMYÉLITE MYALGIQUE / SYNDROME DE FATIGUE CHRONIQUE


French only: Rapport en soutien à l’outil d’aide à la prise en charge et à l’aide-mémoire sur le soutien offrir aux personnes atteintes (Report supporting the management support tool and annexes on support offered to patients)


The main document for GPs:

Management support tool - Myalgic encephalomyelitis / chronic fatigue syndrome (ME / CFS)

Outil d'aide à la prise en charge - Encéphalomyélite myalgique/ Syndrome de fatigue (EM / SFC)


Some highlights from "Management support tool - Myalgic encephalomyelitis / chronic fatigue syndrome (ME / CFS)":

Æ Myalgic encephalomyelitis / chronic fatigue syndrome (ME / CFS):
· is a chronic and complex condition for which there is no diagnostic test and no
known cure.
· is a physical disease whose cause remains uncertain.
· can affect anyone regardless of age, gender, ethnicity or social status. Women are
more affected as well as adults between the ages of 30 and 60.

Æ The clinical presentation is variable and functional independence may be affected
to different degrees - e.g., the person could:
· be able to perform activities of daily living (ADLs - e.g., feeding, dressing, hygiene)
and instrumental activities of daily living (IADLs - e.g., cleaning, meal preparation,
shopping), but require accommodations to study or work;
· requiring assistance with ADLs and IADLs and being unable to study or work;
· depend on others for ADLs and unable to perform IADLs, study or work.

Æ Periods of remission may occur for varying lengths of time, but complete remissions
would rarely be observed.
ME / CFS may be suspected in a person presenting an atypical constellation of
multisystem clinical manifestations lasting ≥ 6 weeks.
Management of the individual should be initiated as soon as ME / CFS is
suspected, even if the diagnosis is not confirmed, to promote stabilization of the
condition and help prevent deterioration.
Children with suspected ME / CFS should be referred to a pediatrician.

Æ ME / CFS is the health status of a person who meets the following conditions:
1. Presence of the 4 following clinical manifestations:
- Asthenia1;
- Post-exertional malaise2;
- Cognitive difficulties;
- Non-restorative sleep or sleep disturbances.
2. Existence of clinical manifestations for ≥ 24 weeks on a continuous basis or not.
3. No other condition can explain the entire clinical picture.

1. Asthenia is an intense fatigue that results in a significant reduction in the ability to perform ADLs and IADLs.
2. Post-exertional malaise refers to the appearance or aggravation of a group of clinical manifestations that occur
following even minimal effort, whether physical, cognitive or emotional.

(ADL is activities of daily living)

...

The intensity of the manifestations may change during the day, from day to day and over the course of the illness.
· People with ME / CFS usually wait until they are well enough to seek primary care. Their symptoms may therefore
be more severe than they appear.
Æ The manifestations can be present continuously or episodically.
Æ The onset or worsening of manifestations is not always predictable. It may be due to a change in position (e.g., from
lying to sitting or standing, from sitting to standing), an episode of post-exertional malaise, a stress (physical, cognitive or emotional) or the perimenstrual period.


The person should not be encouraged to exceed personal limits or engage in activities to increase strength or endurance.

Activity programs, physical or cognitive exercise programs, or interventions with fixed or continuously increasing duration and intensity parameters should not be implemented.​

There is a 168 pages annex (in French only but lots of the evidence being in English it quotes them directly) with supporting evidence. It quotes the 2021 NICE guidelines quite extensively, 171 references in total. Overall this looks like a pretty good effort.

Annexes - Prise en charge de l’encéphalomyélite myalgique/syndrome de fatigue chronique