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

rvallee said:
Dr. Moreau said: "There is this lack of recovery. In fact, when we look at certain biomarkers, we see that [...] patients have the same markers as an athlete who has just run a marathon. It's as if their system is coming quickly to the ceiling, all the time, so the slightest effort becomes insurmountable."
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This is pretty much the same as I've said before to people regarding my wife. To the DWP, ambulance crew, and others. It's a description that helps give the uninformed a better insight into just how catastrophic the loss of energy is. And that whereas the marathon runner will recover pretty speedily, my wife will likely hit it several times a day, or simply be stuck in that state for ages. And if I'm feeling slightly bitter about it, I suggest they ponder how they might cope with that situation.

ETA: And of course for those with severe ME, they are more or less permanently in this state, and some worse.
 
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Dr. Moreau said: "There is this lack of recovery. In fact, when we look at certain biomarkers, we see that [...] patients have the same markers as an athlete who has just run a marathon. It's as if their system is coming quickly to the ceiling, all the time, so the slightest effort becomes insurmountable."

I wonder what he is referring to? Is he talking about lactate?
 
These were the powerful words from Karim Khan, Scientific Director of the CIHR Institute of Musculoskeletal Health & Arthritis (IMHA). I've skipped the introduction where he thanks people. He is called on the stage in minute 24 of this video.

"Please permit me 20 seconds to speak as an MD with 25 years of clinical experience, about myalgic encephalomyelitis. Myalgic encephalomyelitis is real. Myalgic encephalomyelitis is often devastating, far too often devastating. And so as clinicians, I respectfully suggest to my clinician colleagues that we make a pledge to take the insult out of this injury. Let’s remove the insult from this injury, myalgic encephalomyelitis, by validating the patients’ experiences and acknowledging, being honest, how little we know about the treatment for this condition. We don’t have to feel awkward about that. Validating is one thing, having lack of knowledge is another and it’s ok to say, I don’t know how to treat this very well, but I validate your feelings.

[Applause]

"And so you can see that gap between validating the reality of patients’ lives and having solutions, needs research and that’s why we are here today. And this network that partners with the NIH and other countries in the world, but specifically there’s the opportunity for Canada to be one receptor in a 4 centre American network with Stanford and Cornell, we are now part of the world leaders to try help our patients.

"With that, I’ll say merci to dokter Moreau [translated from French] for your passion and commitment to improve human health."​
 
quoting from a Canadian newspaper #71

https://translate.google.com/translate?hl=en&sl=auto&tl=en&u=https://www.lapresse.ca/actualites/sante/201908/22/01-5238257-un-reseau-national-pour-letude-de-lencephalomyelite-myalgique.php

Original: https://www.lapresse.ca/actualites/...our-letude-de-lencephalomyelite-myalgique.php

“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.“

Should it read 60% of patients are women, not 60% of women have the illness? Don’t think it’s the translation. @rvallee
 
Cinders66 said:
I congratulate the campaigners for making a breakthrough

Just to clarify is it $1.4 m per year or spread over 5 years?
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Spread over 5 years.

When we were getting ready for a group photo, Sabrina was organizing people and asked the Minister to move a step to the left, the Minister turned to me and said 'See, I can take orders sometimes."

I said "Well then, I order you put up $10M in funding for ME next year!"

But much hinges on the federal election in a few months. If the Liberals get back in, we can continue to build / working our relationships with the Minister and her policy advisors. If the Conservatives get in, they are fiscal and social conservatives and will not likely want to increase financial support of any initiatives originated by the Liberals, so our chances of building fruitful (ie more funding) relationships plummets.
 
@ScottTriGuy

Thank you very much again for all your work, and your colleagues' work on this wonderful announcement. Yes, the funds are not large, but the messages were extremely important. I really hope the funds catch up to the messages. I understand the forum policy re discussion of politics, however, it is tragic party politics appear to play a role in whether ME is recognized and funded. To echo your concern re the possible change in government, this would quite possibly be a step back for pwME from yesterday's messages and funding.
 
ScottTriGuy said:
Awesome updating, and bang on commentary Richard.

Just home after 2 flights in 1 day, and it's the descents that get me - or the turbulence, especially in those small planes - I have a history of passing out on descents so doing a 2-fer was a risk.

I managed to take some pics - pardon my tremor - some are posted on https://www.facebook.com/MillionsMissingCanada/ - and I've attached 3 pics of slides that may not have been visible on livestream.

We also did a quick 2 question interview with the Minister and have that on video - but have attached a pic - so it will get posted on Facebook too. I chatted informally with her for a while - she was on the road this morning at 5:30am in Ottawa and had already had 3 'appearances' in the 5 hour drive (I think if non-stop) to Montreal for our event - she then had 2 or 3 more appearances before flying home - she said she'd get home about 11:30pm...and then do it all over again. Election season is almost upon us. Even if / when I was healthy, I could not, would not, handle that workload. So props for that.

I told her about my Medical Error Interviews podcast and how just about every victim/survivor has said that they were more traumatized by how the hospital reacted than by the initial medical error itself. Not surprisingly (for me, because it seems every one has an experience) she recently had a family member experience a (non-injurious) medical error.

Any way, short story that got us to today is Health Canada brought some patients and researchers, lead by Dr Moreau, together in Montreal in December to prepare to submit for an anticipated funding opportunity to create an ME research network and ME research.

Health Canada wanted / needed a strong patient presence in the network. Patients are embedded in the organization structure: multiple patients in executive, steering, each working groups

The patients met weekly via Zoom until we submitted our proposal in the spring (I want to say May?). Thereafter we met every other week.

We worked well together, building our internal relationships, and especially our relationships with people in the govt. That is (the missing) key.

We decided to name the network: Interdisciplinary Canadian Collaborative ME Research Network, or ICanCME (clever, eh?).

While not directly related to our funding submission, we had 2 key meetings in July: one via zoom with the Minister's policy advisor, and then some of us flew to Moncton to meet with the Minister and others joined via zoom.

In early August we received word our submission was approved for funding. Mum was the word until today. We helped massage the messages, easier said than done.

Next steps are to formally invite (beyond those named in the proposal) researchers, clinicians, expert patients to join ICanCME, and some of those will soon populate working groups.

The real work is about to begin.

Off to get beauty sleep...and hopefully avoid a please-kill-me-now migraine.

ETA: I think the most meaningful part for me was the Minister naming those who couldn't be there: Barb Fifield (severely ill, mostly bed bound, does MMC's social media), Ryan Fisch (totally bed bound) and Justin Noble (deceased).
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I like this collaborative approach! Really the key to any progress.

Thank you for the insights into this process and for all your hard work, Scott.

And definitely, ICanCME is a kickass name.
 
I’ve shared the MillionsMissing Canada FB post about this on my Facebook page, and included a commentary. I would be hugely grateful to anyone who can check that I have the details right. I’ve tried to include some of the amazing things shared on this thread. Ideally, I’d write a blog, but I’m short of energy.

Full text of my post below for convenience
Big change from the Canadian government as it acknowledges that #MECFS is real, serious and needs tackling. It will invest $1.4 million (£850k) in a research network, led by Dr Alain Moreau, that will establish a national patient cohort and run biomedical projects.

And the language has totally changed. "Let's remove the insult from the injury", said Dr Karim Khan. He is the scientific director of the Canadian Institutes of Health Research institute that will house ME/CFS – he was urging his clinical colleagues to validate patients' experiences and to admit how little we know about treating the illness. "Chronic fatigue syndrome" has been completely dropped, and they now refer to the illness as ME or myalgic encephalomyelitis.

A big part of this change is a central role for patients who are now in partnership with researchers. The government insisted that there was a strong patient presence in the new research network. Patients played a critical role in the successful $1.4 million grant application, including being on the executive and steering working groups.

Congratulations (and thanks) to patients playing a critical role, including, I’m told, Scott Simpson, Sabrina Poirier and Jeff Smith.

Thanks to Science for ME thread contributors for some of this into (esp rvallee and ScottTriGuy) https://www.s4me.info/…/canadian-federal-health-mini…/page-2
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“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?
 
Binkie4 said:
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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I don't know anything about the report from the Ontario Gov't, however, last June the people of Ontario voted in Doug Ford as the new Premier, and since he has been in office, he has been cutting back Provincial funding for education, health, seniors, municipal funding, etc. so I can't see this present gov't being interested in funding anything ME, FM, or MCAS related. :(
 
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 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.
 
Jonathan Edwards said:
Dr. Moreau said: "There is this lack of recovery. In fact, when we look at certain biomarkers, we see that [...] patients have the same markers as an athlete who has just run a marathon. It's as if their system is coming quickly to the ceiling, all the time, so the slightest effort becomes insurmountable."

I wonder what he is referring to? Is he talking about lactate?
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Mij said:
@Jonathan Edwards I'm not certain what he's referring to, but he did a study that found a 'molecular signature' high in homocysteine in his severely affected patients.

I've read that endurance exercise induces an increase in homocysteine depending on intensity? Will have to look it up later.
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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?
 
Binkie4 said:
quoting from a Canadian newspaper #71

https://translate.google.com/translate?hl=en&sl=auto&tl=en&u=https://www.lapresse.ca/actualites/sante/201908/22/01-5238257-un-reseau-national-pour-letude-de-lencephalomyelite-myalgique.php

Original: https://www.lapresse.ca/actualites/...our-letude-de-lencephalomyelite-myalgique.php

“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.“

Should it read 60% of patients are women, not 60% of women have the illness? Don’t think it’s the translation. @rvallee
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It's not the translation. The original French is muddled. Presumably the journalist got confused or forgot to proofread.
 
mHealth researchers in Canada are launching a five-year project to gather information through wearables and smart clothing to help people living with chronic fatigue syndrome.

The Canadian Institutes of Health Research today unveiled the Interdisciplinary Canadian Collaborative Myalgic Encephalomyelitis - ICANCME - Research Network. The program will use mHealth platforms developed by Hexoskin, a Montreal-based developer of smart clothing and connected health software, to gather biometric data from participants.
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https://mhealthintelligence.com/new...art-clothing-help-in-chronic-fatigue-research
 
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