Canadian Federal Health Minister to make announcement regarding ME, August 22

@rvallee
“Pretty good article by one of the better newspapers in Quebec. Good quotes from Dr Moreau.

-- Copy from the translated article below --

...............

“Myalgic encephalomyelitis is characterized in adults by unexplained fatigue of more than six months, joint and muscular pains, headaches, pressure drops when getting up and poor quality sleep. It is a "debilitating disease" that affects about 60% of women and occurs in adults between the ages of 30 and 40, said Dr. Moreau”


Ravn said:
It's not the translation. The original French is muddled. Presumably the journalist got confused or forgot to proofread.
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Writing that 60% of women have ME is not only inaccurate but makes less of the disease. Is it possible for someone @rvallee )in Canada to ask the newspaper to issue a correction?

ETA: question mark added
 
Ravn said:
Didn't Moreau in one of his talks about miRNA profiles mention that ME patients looked very similar to overtrained athletes? Not sure of my memory though and can't find the talk right now to confirm (or otherwise). Does anyone have a better memory and can recall?
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I can't find where he mentions over trained athletes. In this video he discusses specific sub-types and where the 'fun happens'. He mentions sub type 1 who experience vertigo which I find interesting.

 
Milo said:
It is not MCAS specifically, it is environmental sensitivity, hence they have rebranded ME, FM and MCS as environmental illnesses which is not accurate and stigmatizes further.
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I think the jury is still out but I generally assume that MCS is mostly, if not wholly, MCAS (I think MCAD is also used?).

The report was specifically on MCS though, but yet another topic where way more research is needed as we are still stuck at the very basic problem of finding the right words that mean the same thing to everyone. Which is becoming a more problematic issue as time goes by, even the very notion of "pain" is being bastardized and repurposed to be squished into ideological framings.
 
Binkie4 said:
“The Ontario government commissioned a working group to evaluate the impact of ME, fibromyalgia and MCAS. It released a report last year stating bluntly that the scope and gravity of the situation was undeniable. No sure if it had any role, but it was the largest evaluation of its kind in Canada.“

@rvallee #67

Am interested that MCAS has been included alongside ME and fibromyalgia. Do we have a link to the Ontario government’s working group report from last year?
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It's not a great report but it at least gives numbers and scope to the extent of the issue and how everything is yet to be done about an estimated 1M Canadians suffering from serious life-altering health problems from a group of orphan diseases. The framing of environmental illnesses is unclear, the most likely link between the 3 conditions is obviously the immune system but whatever.

I had a better link from the working group itself but can't find it. As others have noted, the current government will definitely not do anything so the report was published at an especially bad time. Oh well, at least the numbers speak for themselves.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5999262/
 
Binkie4 said:
@rvallee
“Pretty good article by one of the better newspapers in Quebec. Good quotes from Dr Moreau.

-- Copy from the translated article below --

...............

“Myalgic encephalomyelitis is characterized in adults by unexplained fatigue of more than six months, joint and muscular pains, headaches, pressure drops when getting up and poor quality sleep. It is a "debilitating disease" that affects about 60% of women and occurs in adults between the ages of 30 and 40, said Dr. Moreau”




Writing that 60% of women have ME is not only inaccurate but makes less of the disease. Is it possible for someone @rvallee )in Canada to ask the newspaper to issue a correction?

ETA: question mark added
Click to expand...
Mostly lost in translation. The original French is OK. Could be worded better but the meaning is down to how "60% of women" can be used to mean "60% de femmes" vs "60% des femmes". The article uses "de femmes" so for francophones the proper meaning should be understood correctly.
 
rvallee said:
Mostly lost in translation. The original French is OK. Could be worded better but the meaning is down to how "60% of women" can be used to mean "60% de femmes" vs "60% des femmes". The article uses "de femmes" so for francophones the proper meaning should be understood correctly.
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Thanks @rvallee. My O level French is not good enough for such subtleties, or maybe it’s the intervening 50+ years!

So long as the correct message was conveyed by the newspaper. Thanks for all the information.
 
Mij said:
I can't find where he mentions over trained athletes. In this video he discusses specific sub-types and where the 'fun happens'. He mentions sub type 1 who experience vertigo which I find interesting.
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This is pretty interesting. By analyzing microRNA from ME patients, they found 4 distinct groups, which also had distinct responses to stress/exercise. Group 1 had the most severe reaction and was the only group in which vertigo/dizziness and "mental fogginess" was a major reaction.

Chart 20.jpg


When they looked at Group 1 compared to the other groups, the found higher levels of TSP-1 (Thrombospondin 1, aka THBS1), which can produce vasoconstriction effects. He speculates that that this may result in reduced blood flow to the brain causing "mental fogginess."

Commenting on this, Dr. Moreau says, "This is the beginning of something."

Chart 21.jpg

This is oddly in keeping with the diagnosis I got way back in 1983 when a renowned otologist, Dr. Frederick Linthicum, of the House Ear Institute told me that vasoconstriction in the inner ear could be causing my vertigo/dizziness.

It makes me wonder what the effect of widespread vasoconstriction in the smallest blood vessels of the brain would be? Would a subtle drop in perfusion at the cellular level in the brain be detectable? What kind of effects might it cause?


Just speculating...
 
Ravn said:
The original French is muddled.
Click to expand...
Binkie4 said:
Is it possible for someone @rvallee )in Canada to ask the newspaper to issue a correction?
Click to expand...
rvallee said:
"60% de femmes" vs "60% des femmes". The article uses "de femmes" so for francophones the proper meaning should be understood correctly.
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Oops, looks like I muddied the waters by using the word 'muddled'.

What I meant was not that the French was 'wrong' as such. As @rvallee points out there is a difference between 'de' and 'des' in French and a careful and informed reader would have little difficulty interpreting the sentence.

However, I always read with the eyes of a casual reader without prior knowledge about the topic in question, as I was taught to during my brief dabble in journalism studies many years ago. And in this case that casual, uninformed reader is just as likely to assume a simple typo - de instead of des - as he or she is to stop and reflect '60% de femmes = 60% of what?", no matter how logical the conclusion may appear to the more informed. Good journalistic practice would have been to make that clearer (something I failed to do myself with my 'muddled' - ouch!).

The rest of the French sentence isn't all that clear either: "Il s’agit d’une «maladie débilitante» qui frappe environ 60% de femmes et qui survient chez l’adulte entre les âges de 30 et 40 ans, a dit le docteur Moreau."[translation: occurs in adults between the ages of 30 and 40]

This could easily could mislead the casual reader to assume that ME in adults only or mainly occurs between the ages of 30 and 40.

But I don't think a 'correction' is necessary. It's really just nitpicking in the context of an otherwise pretty good article.
 
strategist said:
So maybe PEM has something to do with TSP-1 going up and acting as vasoconstrictor.

There's also some literature on how it activates TGF-beta (the one cytokine that stands out more than the others in ME/CFS).
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So in that case small amounts of alcohol should temporarily 'fix' the issue?

As an extensive research program, conducted in the 1980s and 1990s, suggests that this is not consistently the case, at least in my case.
 
Forbin said:
When they looked at Group 1 compared to the other groups, the found higher levels of TSP-1 (Thrombospondin 1, aka THBS1), which can produce vasoconstriction effects. He speculates that that this may result in reduced blood flow to the brain causing "mental fogginess."
Click to expand...

How, if at all, does that fit with ME patients' reduced red blood cell deformability?

Does it compound the 'brain fog' (and other symptoms where RBCs go)?
 
Transcript from OMF here :

"I put up the first pie chart is the group one, the last one is group 4. And you see looking about a factor called thrombospondin-1 which is an anti-angiogenic factor. So TSP-1 is more elevated after the stimulation in group one. And it could contribute to a kind of vasoconstriction in those patients which explained why they feel a mental fogginess because you have some effect on the brain blood flow. As opposed to the group 4 which have less symptoms, is going in the opposite direction.
What is very interesting is thrombospondin-1 is known to act through two receptors. Now we could actually start in vitro experiments to validate. If I block one receptor or the other one with an agonist or an antagonist I can either mimic or prevent these effects. Don't start to look at the literature and try to have those drug and experiment on yourself. We don't know yet to what extent, but this is the beginning of something".
 
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