Discussion in 'General ME/CFS News' started by DokaGirl, Aug 21, 2019.
Was that odd noise in the background people eating hats?
Do you think that this development, the financial investment not the eating of hats, will help to get things moving faster in the UK at all?
I am not sure that there will be much connection. Each country does things its own way. But it may be another factor that finally frees up the impasse.
@rvallee and @ScottTriGuy - thanks for the live tweeting and/or attending the event. Excellent to hear.
Did they indicate whether there was an intent for this research center to formally collaborate with the ones set up in the US? If I remember correctly, NIH has indicated that they were open to collaboration with research centers in other countries.
I forget who said it (maybe Alain Moreau) but there was specific mention of Stanford and Cornell and one other (can't remember) centre based in another country that this group would collaborate with. IIRC.
Thanks, @Snowdrop - that's interesting and good to hear. While Cornell is one of the three research centers (the other being Columbia and Jackson Labs) under the NIH collaborative research center grant, Stanford is not one of the three centers originally included in NIH's center grant
It can be summed as: nothing. It does not officially exist presently.
Only sheer luck will make it possible to have a GP who does not dismiss everything. I met plenty. Just nothing. A shrug and "good luck". My GP from birth dismissed me, refused a 2nd appointment when I first saw him when I first got ill. My current GP seems to have a family member who has it, but is otherwise unable to help much. At least she filed the disability papers, though it took me 8 years since onset.
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.
Karim Khan, scientific director at IMHA (musculoskeletal medical research), part of the Canadian equivalent of the NIH, has been a relentless advocate for us. That probably played a role.
Statistics Canada evaluates ME rates at about the highest in the world. Statscan is a very respected institution, one of the best of its kind.
So it's probably a confluence of many things. The rest was mostly up to patient advocates like Scott Simpson, Sabrina Poirier, Jeff Smith and others. Of course Dr Moreau making the case that this is a problem worth solving.
Just a combination of factors and good arguments, I think. And timing. The facts pretty much speak for themselves.
It was very blunt. The right way.
Hopefully more will follow. This debate is happening in many countries and eventually the tipping point will happen. This seriously brings us closer.
Moreau already collaborates a lot with OMF and the imperative to openly share resources seems pretty clear and understood in this disease. We are seriously witnessing something special, a whole new paradigm of how medical research works. I hope to see great things out of the explicit focus on patient collaboration here.
But I assume you mean the NIH collaborative centers. This is a good question, whether it is official. I think it will happen regardless, but there were talks of officially/unofficially being a 4th NIH center of some sorts. This wasn't really answered.
Here is the official announcement on the GoC website:
Hopefully the translation works for you because in my browser it's messed up: https://translate.google.com/transl...our-letude-de-lencephalomyelite-myalgique.php.
Pretty good article by one of the better newspapers in Quebec. Good quotes from Dr Moreau.
-- Copy from the translated article below --
A national network for the study of myalgic encephalomyelitis
The announcement will be made Thursday afternoon at the CHU Sainte-Justine by the Federal Minister of Health, Ginette Petitpas Taylor, and by Dr. Alain Moreau, to whom is entrusted the direction of this network.
It is estimated that more than 500,000 Canadians suffer from myalgic encephalomyelitis, including some 70,000 in Quebec.
"I would tell you, and several colleagues would agree, that myalgic encephalomyelitis is probably the medical enigma of the 21st century," said Dr. Moreau. One of the reasons for our lack of progress, even though it is not a rare disease, is the fact that too few researchers are interested in it and the lack of funding. "
On the other hand, he continues, many Quebec and Canadian researchers "have exceptional capacities and expertise, and precisely the funding that has just been awarded by the Canadian Institutes of Health Research, to create this interdisciplinary network. collaborative, will start attracting other researchers. "
"Not only will it put the disease on the map , at least the Canadian map , but it will allow people to realize that they may have the knowledge and expertise they need to start working together and try to demystify and decode this disease, "he said.
Canada has only three clinics specializing in the management of patients with myalgic encephalomyelitis or related diseases such as fibromyalgia or environmental sensitivities in Vancouver, Toronto and Halifax.
"Because this disease is a scientific and medical challenge, we are not only in Canada, but elsewhere in the world, to organize themselves into a network of collaborative research to be able to address these complex issues there. we can not address alone, notwithstanding the expertise and skills of people. It's not bad the only way to reach solutions quickly, because the people who suffer from it can not wait any longer, "said Dr. Moreau.
As tired as a marathon runner
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.
The disease also occurs in children, especially adolescents, but "it's a little harder to diagnose because there are all kinds of diseases that occur in the pediatric population."
"In many cases patients are condemned to stay at home and even in some cases, in the most extreme forms, to not be able to leave their bed," said Dr. Moreau. 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. "
A default diagnosis of myalgic encephalomyelitis can take years to arrive, in the absence of clinical tests and biomarkers that are truly able to characterize the disease.
Researchers have recently found that myalgic encephalomyelitis is probably not a single disease. We would rather talk about a spectrum; Five subgroups of patients with different symptoms have been identified and the disease may have different causes or mechanisms.
"Hence, the importance of research to be able to better identify patients and to be able to have more targeted approaches, more personalized for at least, at first, to relieve the main symptoms and eventually, we hope in a horizon that may be a little more distant than expected, to heal this disease, "said Dr. Moreau.
The disease appears in many patients after a viral infection, a bacterial infection, an environmental exposure to toxins or situations of excessive stress, mental or physical.
Certain genes associated with a genetic predisposition have also been identified. The effect of the environment itself, so-called epigenetics, is being studied more and more. Medicine also understands that there is a defect in energy metabolism and a dysfunction of the immune system.
"Many diseases have their specialty, but there is no specialty that has been attributed to this disease because it has often been associated with people who may have more psychiatric disorders," concluded Dr. Moreau . There is no longer any doubt that it is a real disease. "
This is from the Gov't of Canada's website:
To read the entire news release go to:
And lastly if you missed the live webcast you can view it here (video at bottom of page)
OK this means a lot. The Minister retweeted my thanks.
Not just a valid answer, but an honourable one too.
Those three simple but profound words are the start of all knowledge and wisdom.
The USA, Australia, Denmark, and Canada now all explicitly and officially accept that ME/CFS is not primarily psychological in nature.
The BPS cult is running out of governments to hide behind.
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).
I congratulate the campaigners for making a breakthrough
Just to clarify is it $1.4 m per year or spread over 5 years?
Is it worth making Carol Monaghan aware of this if she is not already.
Separate names with a comma.