News from Canada

Postdoctoral Fellow in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
Job Summary

BC Women’s Hospital & Health Centre and Women’s Health Research Institute are seeking a Postdoctoral Fellow (PDF) in the Complex Chronic Diseases Program (CCP) led by Dr. Luis Nacul for a 1-year term with a possibility of extension subject to funding. The position will be physically located at BC Women’s Hospital Campus as part of Department of Family Practice, Faculty of Medicine at the University of British Columbia.

Background:

Complex chronic diseases (CCDs), such as Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) are long in duration and there are no blood or other tests that can confirm diagnosis. In spite of research advances, factors involved in causing these conditions are still not fully understood. However, most cases are triggered by infectious diseases, such as mononucleosis and COVID-19. Each person with a CCD will experience their disease in a unique way, with symptoms that may or may not exactly match the most common descriptions.

The Complex Chronic Diseases Program (CCDP) at BC Women’s Hospital & Health Centre is a provincial referral centre that aims to provide comprehensive and evidence-based care to adults with complex chronic diseases, including Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), Fibromyalgia and Chronic Lyme Syndrome. The Program engages in clinical care, education/knowledge transfer, quality improvement and research. The goal is to provide compassionate, innovative and integrated, care that promotes healing and improves the quality of life for patients using an interdisciplinary approach. This includes an emphasis on patient preferences in assessment and treatment decisions. Through partnerships with health care organizations, providers and community groups, the CCDP aims to raise the community standard of assessment and care for people living with these diseases.

Project Summary:

Myalgic Encephalomyelitis /Chronic Fatigue Syndrome (ME/CFS) is believed to affect over 38,000 British Columbians and 400,000 Canadians. Currently, there is no accurate data on the health status of patients with ME/CFS from across Canada. Addressing questions on the accuracy of data on the health status of people with ME/CFS on a provincial and national basis can be accomplished by accessing currently available data on well characterized individuals obtained retrospectively and prospectively; such as those by the unique, existing population cohort established through the Canadian Partnership for Tomorrow’s Health (CanPath) (n>300,000), and more specifically the BC Generations Project (BCGP).

The BC EP-ME Study: Establishing a Population-based Cohort of People with Myalgic Encephalomyelitis in British Columbia: Feasibility Study, led by Dr. Luis Nacul, aims to establish a population-based cohort to help propagate much-needed research developments pertaining to ME/CFS in BC. Using data from consenting participants with and without ME from the BCGP, this project will help inform the future creation of the first Canadian data registry of ME/CFS. Factors such as personal health history, physical measurements, and history of viral exposures will be compared between participants with and without ME/CFS to better understand disease risk factors.

This project is part of a Pillar 2 initiative within the three pillar Interdisciplinary Canadian Collaborative Myalgic Encephalomyelitis (ICanCME) Research Network, a multi-year Canadian Institutes of Health Research funded Catalyst Grant. Pillar 2 activities include the establishment of a centralized national ME database – the Canadian ME National Cohort (CMENC) and data management through harmonization of existing databases.

Pillar 2 activities will be accomplished through:

  • Informatics and support for data capture and harmonization of regional cohorts.
  • Selection and validation of ME/CFS common data elements.
  • Standardization of ME/CFS case entry criteria.
  • Establishing Population-based cohorts and Clinical cohorts.
  • Digital markers and other mappable ME-related clinical measures, including deep phenotyping and provocation studies.
Work Performed:

The fellow will take a leadership role in supporting the BC EP-ME study and related Pillar 2 activities within ICanCME. This role will include opportunities for collaboration on research projects and interdisciplinary professional development activities across the network and research group strategic initiatives and their respective core projects. This will include collaboration on the already established Complex Chronic Diseases Program Data Registry (CCDPR) and the Pillar 1 virology study, “The contribution of virus infection to ME: A comprehensive virology study using the BC Generations Project (BCGP) and the Canadian Partnership for Tomorrow Project (CPTP) cohort”.

Specifically, the fellow will:

  • Oversee BC EP-ME project timelines, initiatives, and deliverables.
  • Support related ICanCME Pillar 1 and 2 activities.
  • Foster research collaborations across a national network of ME/CFS researchers, clinicians, patient partners, and health care decision makers.
  • Conduct data management and data analysis using statistical software.
  • Deliver clear and concise written and oral presentations of the data at internal and external meetings.
  • Prepare, write and contribute to preparation of manuscripts for publication.
  • Identify funding opportunities and if required write or assist with grant proposals.
  • Mentor and supervise junior trainees and students.
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https://www.postdocs.ubc.ca/ad/55856
 
The AQEM (Quebec Association for Myalgic Encephalomyelitis) announces on its website :

" Please note that the Quebec Ombudsman has decided to open a collective main file concerning the lack of adequate health and social services for people with myalgic encephalomyelitis. We will try to participate as actively as possible in this
investigation in order to properly expose the impact of this lack of services on PWME across Quebec." * link

This is interesting news for the defense of the rights of pwme in the Province because :

" Le Protecteur du citoyen has been Quebec's ombudsman since 1969. Independent and impartial, it does not report to the Quebec government. It reports to the National Assembly." (Equivalent to House of Commons)

Its mission is to :
  1. See to it that citizens’ rights are upheld when citizens interact with Québec public services.
  2. See to the integrity of public services and be part of the action to improve them.
https://protecteurducitoyen.qc.ca/fr/a-propos/roles-et-mandats


* Underlined and in bold by me, translated from French
 
I am annoyed by this framing of "disaster is looming". It whitewashes the last 2 years (and the many decades before) and minimizes the current level, only making it a real problem if it becomes so large that everyone knows someone disabled permanently, or experiences it themselves.

What horrible messaging we are seeing all over the place, completely minimizes quality of life and basic ability to function, which indirectly affects survival because of systemic denial and neglect, making everything about either life or death or a problem that can only be acknowledged if and once it becomes so large it massively affects our entire civilization.

This is not what's expected of experts. The failure here is staggering.
 
A team of researchers based at five centres across Ontario have zeroed in on a microscopic abnormality in the way oxygen moves from the lungs and into the blood vessels of long COVID patients in their trial.

This abnormality could explain why these patients feel breathless and are unable to perform strenuous activities, says lead researcher Grace Parraga, Tier 1 Canada research chair in lung imaging at Western University’s Schulich School of Medicine & Dentistry.

“Those feelings of breathlessness are completely consistent with our finding that we’re not moving the oxygen as efficiently as we should,” she said.

Red blood cells are responsible for transporting oxygen from the lungs to the rest of the body. Any disruption in the flow of this oxygen to red blood cells will trigger the brain to say, ‘breathe more’ — resulting in a feeling of breathlessness, Parraga explained.

All 34 of the patients who participated in the study were experiencing problems in the level of oxygen being absorbed by their red blood cells.

https://globalnews.ca/news/8950820/long-covid-canadian-researchers-causes-study/
 
Mij said:
A team of researchers based at five centres across Ontario have zeroed in on a microscopic abnormality in the way oxygen moves from the lungs and into the blood vessels of long COVID patients in their trial.
Click to expand...
Thanks for posting @Mij
This article has a bit more detail on the study methods.

"Using a functional MRI where patients inhale xenon gas, researchers can see in real-time what it is happening inside the lungs. Preliminary results show symptoms are related to microscopic abnormalities that affect how oxygen is exchanged from the lungs to red blood cells.

Having participants inhale the gas while being scanned by the MRI allowed researchers to see how the 500 million air sacs in the lungs deliver oxygen to the blood. In the case of long-COVID patients, the transition of the oxygen was depressed compared to healthy volunteers."

https://www.cbc.ca/news/canada/lond...ging-research-at-western-university-1.6504318


Mod note: The research thread on four papers relating to this work is here
Persistent 129Xe MRI Pulmonary and CT Vascular abnormalities in ... [PACS] , 2022, Parraga, Matheson (and related papers by Grist, Wild)
 
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Here is the help sheet (produced by INESSS*) for the management of
post-covid-19 conditions on fatigue and PEM, for health professionals in Quebec (Province of Canada). The information even mentions ME :
https://www.inesss.qc.ca/fileadmin/doc/INESSS/COVID-19/Fiche_Covid_Fatigue_2022VF.pdf

“ Post-exertional malaise is a cardinal manifestation of myalgic encephalomyelitis. This condition shares similarities with some clinical aspects of post-COVID-19 conditions; however, uncertainties regarding the pathophysiology of each of these
conditions make their bond uncertain."

Post-exertional malaises :
correspond to an onset or aggravation of signs and symptoms that occur as a result of physical, cognitive or emotional effort, even minimal. They usually occur within a few hours to 72 hours after activity and can last for days, weeks or months.
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This fact sheet is quite detailed, explains PEM, talks about an exertion threshold (accumulation) that triggers it, lists its possible and many signs and symptoms that arise or worsen, and mentions orthostatic intolerance. As far as the intervention is concerned, these are energy management strategies that are recommended (pacing) :

• Balance periods of activity and rest
- Find the efforts thresholds of physical, cognitive and
emotional that trigger post-exertional malaises.
- Adjust the intensity of activities and plan an alternation of
periods of activity and rest so as not to exceed the effort thresholds found.
- Wait for the state of health to stabilize for a few weeks before trying to increase activities slightly, even if the person feels well.

An increase too rapid in activities could lead to a relapse. Efforts/activities cycles – post-exertional malaise (crash) should be avoided as much as possible.

• Prioritize
- Establish an order of priority of activities.
- Conserve energy for meaningful activities.
- Recognize and limit energy-intensive activities.

• Adapt
- Modify the activities to make them easier to perform.
- Split big tasks into smaller ones.

• Plan
- Spread out activities over days or weeks.
- Do energy-intensive activities during periods of the day
or the week with the highest energy.
- Set aside time for energizing activities – in respecting the energy envelope
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Concrete examples are given to illustrate each item (having groceries delivered, favoring a seated or half-lying position when possible, limiting stimuli, using a wheelchair, a disabled parking permit, obtaining household help, etc.) I can not publish more because there are tables and these are in French. (All excerpts are a translation).

* Institut national d'excellence en santé et en services sociaux

Note: PEM is really quoted in the plural - " les malaises post-effort "
 
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I posted it a few times before but INESSS published a report about a decade ago detailing the horrible state of neglect for pwME in Quebec. It was quite good, allowed the patients' own testimonies to speak for themselves in many places. It had the usual conclusions about how bad this is and basic recommendations, which are basically the same as what's being done for LC.

Nothing happened from it however. And even though it's massively relevant here, it's down the memory hole. It's sad to see how true this is, but just as in anything else, medicine is not special about this, the truth is irrelevant if it's not acknowledged. If people want comforting lies, even medical authorities, they will reject the truth and punish those who speak it. If people aren't willing to accept facts, they just don't. It's just as true in healthcare as anywhere else.

Even worse is that this truth is, of course, not accepted, and therefore only "true", not True. Truthiness rules, everywhere, until it doesn't. Very little matters in-between, even millions of lives, as we can plainly see. This is why we don't have nice things. Hell is other people.
 
A friend of mine called an ambulance last week, severe kidney pain, almost fainted, no ambulance showed up after an hour and a half- 'code zero', in other words you're on your own. Wife drove him to the emergency and he waited 7 hrs to see a doctor. Diagnosed with a kidney stone.

Shortage of family doctors in Canada so patients are going to the Emergency for care.
 
Mij said:
Shortage of family doctors in Canada so patients are going to the Emergency for care.
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My GP is retiring in the next four to 10 months. She has tried every avenue she can think of to find a doctor to buy her practice but so far she hasn't found anyone. There are approximately 900,000 people in BC alone without a family doctor and it looks like I'm going to be one of those people very soon. My aunt lives in small town NS and her town's only GP retired in April and now they have no one to go to.
 
We would need to double the number of physicians and nurses to provide even basic adequate care. About 20% of our population doesn't have a GP and our entire system runs through GPs. And I technically have a GP, but that's another issue with discriminated diseases. My parents didn't have a GP for years because their GP, who was my GP and fired me when I got ill, retired and they don't bother with their patient list, they're on their own. My father is 75. Didn't have a GP for I think 3 years. Canadian healthcare has gotten incredibly dysfunctional.

But that would mean lower salaries so it's not happening. So instead it will basically be ongoing degradation of services until medical AIs completely transform the profession. Ironic, that a human problem will be solved by technology, not even because that problem is too hard, it's just dumb old human nature. But there is no human solution here, the system is paralyzed.

And all that was just as true before the pandemic. It's only gotten worse since, but it was already crumbling under its own weight.
 
My GP of 36 years retired last October and I'm very grateful she found a replacement. Having a GP in Canada is golden now.

I heard about a group of nurses from Québec who left their jobs and went to work in S. California.
 
Mij said:
My GP of 36 years retired last October and I'm very grateful she found a replacement. Having a GP in Canada is golden now.
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The biggest problem with getting new doctors to work in BC as a GP in a family practice is that they only get paid $31 per average visit with a patient. So if a patient's visit runs longer and takes, say, 30 minutes of the doctor's time, the doctor still only gets paid $31.00 for the half hour. If the gov't wants to fix the problem, they need to start paying GPs a salary and do away with paying per patient per visit.
 
[There's probably not a lot of point in making a new thread for this.]

McMaster Uni is recruiting on Reddit for a 'CFS study':

Screenshot 2.png

Further information on the study:

CFS/ME is not a clear cut syndrome, specifically, health care professionals don't have clinical guidelines for patients. Our interest and aim is to talk to people who have had any degree of symptom improvement or reduction to see if there are any commonalities that we CAN study clinically, eventually. Patient perspectives and lived experience is a focus of our research team. It's important to us to include patients in our research and not depend only on medical information or clinical studies. Talking to patients yields more nuanced and contextual information, and there are not many qualitative studies on CFS.
Click to expand...

Our team is made up of Dr. Meredith Vanstone who is a Scientist who studies complex, ambiguous, and marginalized topics in medicine, health, and psychology. Drs. Busse and Zeraatkar are physicisns who treat CFS/ME patients. We have two patient partners on our team who have CFS/ME and have experienced some degree of improvement. I am a Research Coordinator with expertise in psychology and mental health, as well as qualitative research. None of us are students. This is not a student project. This study is funded by an anonymous donor. This donor has a family member with CFS and has an interest in understanding how to treat CFS/ME from a patient perspective.
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As pointed out by a commenter on Reddit:
Their PI is Meredith Vanstone. She seems not to have published on me/cfs but has published on patient experiences with chronic illness and chronic-illness-related depression.

Jason Busse. Dr Busse is a chiropracter who currently believes in Graded Exercise Therapy (GET) as a treatment for me/cfs. Here is Busse on Twitter and here is Busse's letter to the BMJ about the NICE guidance in Feb 2021 (takes some scrolling).OP described him as a physician who treats people with cfs.
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