News from Canada

T

Tom Kindlon

Senior Member (Voting Rights)
This thread is for news about ME/CFS and related topics from Canada


Post copied from this thread:
ME/CFS: Organic Disease or Psychosomatic Illness? A Re-Examination of the Royal Free Epidemic of 1955, Underhill & Baillod, 2020
which discusses the study noted below


Code: 
https://twitter.com/TomKindlon/status/1353436964926709760

The latest issue of the (Canadian) National ME/FM Action Network newsletter can be accessed for free here: https://mefmaction.com/index.php?option=com_content&view=article&id=564&Itemid=380…

It includes a plain English summary of the study #MyalgicEncephalomyelitis #MyalgicE #Fibromyalgia #Fibro #FMS #MEcfs #CFS
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Moved post

FWIW I'm just putting this here for information.
Health Canada no longer has any official guidance for ME/cfs.
There is a page on previous guidance but it has a large notice that the material has been archived and not up to standard.

Link
 
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Nothing special but a fair report on LC with a mention of the similarities to ME and an overview of the symptoms that is frankly better than average in not diminishing to just fatigue. Says a lot that this is the best one so far. In French. Canada has a national broadcaster but it is divided between English and French divisions.

 
Terrific tweet from Simon DeCary, Canadian Long Covid researcher dismissing suggestions that ME/CFS activists have put researchers off investigating the condition:
Dissuading researchers from working in ME/CFS??? Hahahahaha. I honestly never had as much motivation and dare I say pleasure in my professional life since engaging with this awesome and dynamic community. And yes, even after millions round of editing
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Link posted here:News from Scandinavia
 
From BC Womens Hospital and Health care website:
Review of Central Sensitivity Syndromes
One sheet Summary
http://www.bcwomens.ca/health-info/living-with-illness/living-with-complex-chronic-disease

What are Central Sensi.vity Syndromes?
Central sensi,vity syndromes (CSS) belong to a family of syndromes that share the common mechanism of “central sensi,za,on.” Central means the problem is at the level of the brain and spinal cord. The neurons (brain and spinal cord cells) are “hyper-excitable” or sensi,zed because of changes in the way the cells communicate chemically and through other mechanisms. The sensi,zed cells amplify, or make stronger, messages that we get from our senses (for example touch can feel like pain, normal ligh,ng or sound can be experienced as uncomfortable). But the cells are not just sensi,zed; they oIen send “wrong” informa,on as well, and they can also trigger abnormal responses to the environment. For instance the cells can send informa,on to make your heart race, make you feel dizzy, or not regulate your body temperature normally. New sensi,vi,es to food, chemicals, and medica,ons can also occur.
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common central sensitivity syndromes:
ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome); FM (Fibromyalgia); MCS (Multiple Chemical Sensitivities);
CLD (Chronic Lyme Disease); IBS (Irritable Bowel Syndrome); T-T (Tension Type); TMD (Temporomandibular Disorders);
POTS (Postural Orthostatic Tachycardia Syndrome); RLS (Restless Leg Syndrome); Others including: irritable larynxsyndrome, PTSD (Post Traumatic Stress Syndrome, non-cardiac chest pain (costochondritis), myofascial pain syndrome,
and other pain syndromes.

http://www.bcwomens.ca/Specialized-...sitivity Syndromes (CSS) one page summary.pdf
 
The show Pharmachien (it's a pun on how pharmacist is written in French) will have a show dedicated to ME this week. Very unsure whether this will be good, but it will feature Alain Moreau and the vice-president of the local ME association. It's basically a skeptic show about health. Professional skeptics almost universally fail the ME test but we'll see.

I'm most wary of a part about the "harassment" of researchers, but the teaser has a short interview bit where some research mentions that most of the research in this field is basically garbage so maybe it'll be good.

French only: https://pharmachien.exploratv.ca/episode-72-la-fatigue-chronique/.
 
Linking to keep track: the British-Columbia ME/FM society of BC has released a report on the dire situation of ME and FM in Canada. Interviewed patients and 100+ professionals. In Canada there is nothing for either ME of FM. Zero. Zilch. Same for dysautonomia and basically all chronic illnesses, they are not recognized, there is no research and nobody cares but us. It turns out that discriminating against a disease leads to bad outcomes. Who knew?

Thread here: https://www.s4me.info/threads/m-e-i...or-m-e-impacts-clinicians-and-patients.19878/
 
Interview on national television with a long hauler:



News coverage has been pretty slow and low on this issue here, with not a single public health official recognizing any part of it. Our health care system is very deficient on anything but routine care, largely up to the provinces, with no coordination between those systems or nationally.
 
Not super significant but a public health body in Quebec has produced a report on chronic symptoms following Lyme disease that may as well have been about either of ME or Long Covid. It once again confirms the facts as they are and once again makes the same recommendations, which are never followed.

The same organization published a report on ME in 2010, more in-depth but basically confirming the same evidence and making the same recommendations (which were never applied, as is tradition). The 2010 report on ME (and in English): https://www.inesss.qc.ca/fileadmin/doc/AETMIS/Rapports/Autres/2010_02_monograph_en.pdf.

This new report is in French but I'm not sure how to provide translation for a PDF https://www.inesss.qc.ca/fileadmin/...pp=ios&partageApp=appInfoiOS&accesVia=partage. The report is titled "Lyme illness and persistent symptoms: a review of current knowledge and recommendations to improve care".
 
Ironic, they say the exact same things as the BPS ideologues.

Same with Internet trolls. Whenever you see Internet trolls comment about LC or ME, they say the exact same things as the BPS ideologues. Not a bit or a lot, they only say the exact same things.

Must be a coincidence.
 
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