A Little History
Given our vaunted insularity, many in the U.S. may not know of the role Canada and Canadian figures have played in ME/CFS. The Canadian influence has been strong and it’s growing.
So far as I can tell and I’m no expert the Canadian influence began in a big way with Dr. Byron’s Hyde’s immense and lavishly illustrated The Clinical and Scientific Basis of Myalgic Encephalomyelitis–Chronic Fatigue Syndrome (1992) and his Nightingale Research Foundation website. That book was the bible for many researchers and patients for years (and Hyde has another one on the way).
Dr. Bruce Carruthers, a Vancouver specialist in metabolic disorders, and other Canadians (and some Americans) and others made a profound impact worldwide with the development of the Canadian Consensus Criteria which knocked the CDC’s Fukuda and Empirical Definitions out of consideration and re-inserted post-exertional malaise into ME/CFS diagnostic criteria for good.
Besides seeing ME/CFS patients for years, Alison Bested M.D. has penned several well-regarded ME/CFS treatment guides, co-authored the IACFS/ME primer for physicians, and created a diagnostic protocol for physicians. Dr. Peter Rowe, now at Johns Hopkins, who hails from Canada, has been a key figure in ME/CFS pediatric care and understanding the role orthostatic intolerance, Ehlers Danlos Syndrome and others play in ME/CFS. His hypothesis on connective tissue disorders in ME/CFS is fascinating. Eleanor Stein M.D. in Calgary (brr!) has produced treatment and diagnostic guidelines on ME/CFS including one on how to differentiate ME/CFS from psychiatric disorders.
Hailing from Alberta (brr!), Valerie Free’s “Lighting up a Hidden World: CFS and ME” is the best single resource on ME/CFS I’ve seen in years).
Some Canadian researchers who have come to the fore lately include Gordon Broderick (now at Rochester General Health), Travis Craddock (at Nova Southeastern), Patrick McGowan (University of Toronto) and David Patrick (British Columbia Centre for Disease Control). The latest Canadian researcher to join the ME/CFS research community is none other than Dr. Alain Moreau, who attended the OMF’s Stanford ME/CFS Workshop, conceived the Canadian Conference, and received a federal grant to produce it.
Canada is the only country I know of to get chronic fatigue syndrome (ME/CFS) inserted into a national health survey (Canadian Community Health Survey (CCHS)). The 2010 survey, which found near equal numbers of ME/CFS and FM patients, suggested that the number of ME/CFS patients in the U.S. might be much more numerous than suspected. The survey also indicated the disease was causing levels of disability similar to those found in Alzheimer’s and stroke.
Last year, an Ontario task force, in a 58 page report to the Minister of Health, presented numerous recommendations needed to provide much needed support for the 550,000 ME/CFS/FM and MCS patients in the province. This year Canada is sponsoring its first International Conference and is providing funding for a collaborative research center to work with the three NIH funded research centers in the U.S.
CIHR is participating as an international collaborator on this NIH initiative, and will provide funding to one Canadian multidisciplinary team to participate in the ME/CFS Collaborative Project with NIH’s CRCs and DMCC. The successful Canadian team is expected to coordinate with existing initiatives in the field, to forge links with the wider community (including practitioners, policy makers and service users) and include additional partners, such as commercial or industrial representatives where appropriate. Additionally, the successful team will encourage collaboration, communication and training that will extend beyond the lifetime of the five-year grant.
Canada’s major advocacy group, the National ME/FM Action Network, has been in action since 1993. Its website provides many resources, including a legal library. It recently provided bilingual translations for many seminal ME/CFS documents including the Consensus Criteria, IACFS/ME Primer, Pediatric Primer, etc.
The ME/CFS Canadian Collaborative Team Conference from May 3-5
Advancing an International Research Agenda to Address ME/CFS Research Priorities: From Basic Research to Clinical Practice
Canadian doctors, researchers, and advocates, then, have played quite a role in ME/CFS — but federal funding for research is sparse, ME/CFS expert doctors are rare and it’s never held a major conference before. (The IACFS/ME held its conference in beautiful Ottawa in 2011.)
For its first try at the conference thing, though, Canada is not starting out small. The March 3-5th conference in Montreal – paid for the Canadian Institutes of Health Research (CIHR) and with support from Canadian and U.S. ME/CFS organizations – is a major ME/CFS conference one hopes will be able to repeat itself, perhaps in the off-years between the IACFS/ME conferences.
The Conference’s goal is a smart and ambitious one – to lay the groundwork for a sustainable Canadian ME/CFS research program by developing an international research agenda that Canada can play a part in. About 250 basic scientists, clinical researchers, physicians and healthcare professionals – as well as patients and policy makers – will be attending.
Ron Davis, who will be speaking several times, welcomed the new international conference stating:
There is an urgent need to get to the bottom of this devastating disease. To do this, we need many
people looking at it from different perspectives and sharing as many ideas as possible so that we are better able to understand ME/CFS at the molecular level. This will impact ME/CFS directly by generating new knowledge as well as awareness about this dreadful disease.
Health professionals will have sessions from May 3rd-5th. The patient day on May 4th will be livestreamed and made available later.
While many Canadian doctors and researchers, including Dr. Alison Bested, Dr. Byron Hyde, Dr. Peter Rowe, Alain Moreau, David Patrick and Patrick McGowan, will present, it truly is an international conference. Ron Davis, Betsy Keller, Maureen Hanson, Derya Unutmaz, Roland Staud, Nancy Klimas and Lucinda Bateman from the U.S., Louis Nacul and Cara Tomas from the U.K., Carmen Scheibenbogen from Germany, Jonas Berquist from Sweden and Chris Armstrong from Australia, will all be presenting.
Patient Session
The Patient Session on Day 2 (May 4th) will include presentations on:
- A Short History of ME/CFS – Dr. Byron Hyde
- The Future of ME/CFS Research in the Omics Era – Ron Davis
- Modeling and Creating Clinical Trials in GWS and ME/CFS – Dr. Klimas
- Pathophysiological Mechanisms in ME/CFS – Dr. Alison Bested
- Objective Diagnoses – Dr. Lucinda Bateman
- ME/CFS: Could Neuroplasticity Play a Role? – Dr. Eleanor Stein
- The NIH and the Future of ME/CFS – Vicky Whittemore
- The Need for Open Collaboration – Linda Tannenbaum
- ME/CFS Research Landscape in Canada: How Can Science/Innovation Address Unmet Needs? – Margaret Parlor, President of the National ME/FM Action Network, Ottawa
- Is Heart Rate a Valid Exertional Index in ME/CFS? – Betsy Keller
- The Alberta Healthy Living Program: The Role of ME/CFS Education – Eleanor Stein, MD, FRCP(C), Calgary, Canada; Judy-Anne Wilson, representative of Edmonton ME Society; Alison Rae, Board Chair and CEO, Action CIND.
- Medication and ME – Kevin Mejo, BPharm
- Nutrition and ME – Valérie Marcil, Ph.D., DtP
- Genetics and ME – Alexis Goth, M.D., CCFP(C)
- The Biobank Experience in Australia – Chris Armstrong.
Plus, an Unrest screening will occur at the conference location on Thursday night @ 7pm with a follow-up panel discussion by Nancy Klimas, Vicky Whiittemore and Scott Simpson. I will be moderating.
The Conference will take place at the CHU Sainte-Justine Hospital (Amphithéâtres 125 et 250, bloc 11), 3175 Chemin de la Côte-Sainte-Catherine, Montréal, Québec, Canada, H3T 1C5.
- Check out the full conference agenda here and the press release here.
- You can register for the Patient Day ($50) or the Livestream ($30) here. Unfortunately today, April 26th is the last day to register!
- I will be tweeting the conference here.
Hi Cort,
I don’t see a contact form for you so am submitting a correction this way. The date for the screening of Unrest is Thursday, May 3rd, 2018, not Saturday night as you have noted here.
Here’s our announcement.
Thanks Cort.
Barbara
Millions Missing Canada
https://www.facebook.com/MillionsMissingCanada/posts/583209512040775
Fixed!
The $30 fee for patients is $23.30 in USD with today’s exchange rate. I hope this information is helpful in making a decision whether or not to view the livestream.
Nice! Just a short drive over the border for lots of people.
Will the lifestream recording be available to see later too? I can’t watch on the 4th but would do so later, for $30, if they want that to cover the cost.
Thanks for a good article and I am so glad you’ll be there and sharing!
Cort, thank you deeply for this post. As a patient and advocate I will be attending and hope we are able to shake things up as much as possible,
🙂
Great to have Canada making a splash! Kudo’s to Alain Moreau, the Canadian advocates who worked on this and the organizations which supported it.
I am so exciting that something of this magnitude is being held in Canada! Dr. Eleanor Stein has been my specialist for the past several years and she is absolutely wonderful! I’m glad to see that she will be presenting as well.
Thanks, Cort, for this great review of what is to come and the mention of so many great Canadian contributions to the ME/CFS field. I was excited to see that you also highlighted the book “Lighting Up a Hidden World: CFS and ME”. My friend Maureen MacQuarrie will be there and she is printing up some nice flyers for the book. Maybe you will run into her and check the flyers out. Have fun in Canada!
🙂
Cort,the CCHS did not survey about ME or even what the CCC called ME/CFS. The questions this poorly designed survey asked were about CFS which is often confused by the public and doctors with simple fatigue. The actual sample of the survey does not provide reliable results that would represent CFS in Canada and certainly not that of ME in Canada.
Second, Doctor Carruthers also was a leading figure in the creation of the ICC. He said that the ICC was essentially an update of the CCC based on a decade of new research and clinical experience. He also said it was meant to correct some of the errors made in the CCC, chief being using the term CFS as synonymous with ME or hyphenating the terms
There will always be questions about ME vs CFS. Suffice it to say that for me the key takeaway from the survey is that it established that a lot of people in Canada have “ME/CFS”, that it is severely disabling that they need a lot more help; it’s brought much needed visability to this disease.
At some point the other questions will be ironed out but for now, for me at least, the survey has achieved it’s purpose.
I was aware that the Carruthers was the force behind the ICC; I chose to focus on the CCC because it turned out to be the seminal document.
Dr Hyde doesn’t refer to Myalgic Encephalomyelitis as ME/CFS. He treats ME as per his criteria of 2016/2017 which is very similar to the ICC 2011. The American ME Community might like to lump everything together but all the Expert ME doctors know that there is a difference between ME & CFS.
The last thing Canadians want or need is a repeat of the last 30 yrs the American community has had to struggle through.
You can’t just attend a conference with charismatic advocates and believe everything they say then write a review for them. That isn’t helping anyone.
Dr. Hyde seemed very happy to speak several times at the ME/CFS (not the ME) conference. I actually don’t know of any well known doctor (Bateman, Klimas, Cheney, Peterson, etc.) who differentiates between ME and ME/CFS.
The CCC is only for CFS/ME but requires a 6 month wait for diagnosis. The ICC is only for ME and doesn’t require the 6 month waiting period. It offers a better option for those who are Moderate to very severe. The ICC supersedes the CCC. I have ME ICC and I’m Canadian. Don’t let those over inflated number of ME/CFS people muddy the waters. Canada does not have over 500K suffering with ME yet high profile advocates are using that figure on the advice of a few without investigating it for themselves. This is the reason why Canada does not fund research.
I would like to know when researchers will start paying attention to those of us on the more severe end of ME.
Note that ME was added to the American ICD in October 2015 but CFS was placed under SEID.
I understand the desire to have researchers focus on the more severe and possibly very different ME but if Canada is not funding research into 500K people with high rates of disability with a diagnosis that is recognized and which substantial research has been done outside of Canada it is surely not going to spend any money on a far fewer people with a diagnosis which the vast majority of researchers are unaware of and on which virtually no research has been done.
If you want to get research into ME done – support funding for ME/CFS and then as the research proceeds break ME out of it. Pragmatically this is the only way I see this happening. If ME is substantially different from ME/CFS so that the ME group will show up over time.
You can, of course, try convince the funders that ME is different and should be studied separately but this has been tried for decades and has failed. If you think ME/CFS is having trouble getting funded just wait until you try to get ME funded outside of ME/CFS. Far better IMO to concentrate your energy on getting ME/CFS funded and push for big enough studies so that the ME group will show up.
Thus far studies that contrast the two criteria do sometimes show some differences but in general the differences are not, to my recollection, substantial enough to suggest that these are two diseases that are different enough to be studied separately.
You can say that the ICC supersedes the CCC and it does but in a practical matter it hasn’t because its hardly ever been used in research studies while the CCC has been. Both, however, have superseded by the IOM criteria for ME/CFS which emphasizes PEM.
Cort
The founders know there is a difference but lying to the outside world that there are over 500,000 people with ME which by the way was taken from a telephone survey about CFS and FM with no proof of diagnosis.
The more lies about the numbers – the more researchers stray from studying something that could help. Conflated numbers adds to the stigmatization of those patients who actually have been diagnosed correctly.
The CCC was never written for research purposes and researchers are in the wrong by using it. Maybe that’s why research for ME hasn’t moved forward in 30 yrs. Same old studies using incorrect criteria.
Once again, the IOM redefinition does not include ME and therefore does not supersede the ICC which is specifically for ME.
Dear Cort
Many thanks for your summary. Yes, this is the first international conference in Canada on ME. Very very long time in coming.
And yet, there have been severely bed bound ill patients for decades not obtaining either the attention of the care they deserved, and often disparaged and told they were psychiatric. I know this well, and we have had to go to the usa to get any help. It isn’t even possible to get a doctor to give a saline IV here in Quebec. This subject of ME is a terra incognita for the majority of doctors in Quebec, and the name of CFS has not helped. The situation is actually dire for patients in this province.
I just wanted the situation to be clear, because it often sounds as though Canada is on par with other nations with regard to this illness but this is not the case. Dr Hyde does not see more than a hand full of patients, and he does not treat patients, though his book was indeed a great achievement.
In Quebec the doctor will not give IVIG, or any of the anti virals, or other meds that American CFS/ME doctors prescribe. The patient is literally left on his on, seeking help from the odd naturopath. There was one doctor who had a tiny CFS clinic two decades ago, and he basically prescribed klonopin. He told me that his own daughter, a physician, never studied this illness in med school and neither did her colleagues.
I just wanted to be sure folks saw a more balanced picture about the situation.
Thank you.
Yes, I know the situation regarding doctors is very bad in Canada and I did note that ME/CFS experts are very rare but thanks for making brutally clear just how bad the situation is.
Hi Cort,
Thanks for your response.
And I will only add that I am not very optimistic about getting help in Canada anytime soon.
Here is why: 1) we have socialised medicine–this means that only treatments on a protocol are available, and they must be on the cheaper side, expensive treatments are not available, and the Canadian middle class goes to the usa for help with advanced medical help
2) Canada is a ridiculously decentralised country, granting the province rights over education, immigration, and health care–this means provinces decide where the cash goes.
And things are not standard across the country, even in the huge cities.For instance, in Quebec there is no double-balloon scoping done to help GI investigations. Whereas, they have this equipment in Ontario. Many doctors in Quebec haven’t a clue that it is available in Ontario. Another example: in Quebec they seem to lack some other equipment used for scanning the brain, and an acquaintance lost her 25 yr old son because of this emergency he had.
One doctor told me that both sorts of equipment are just not cost-effective! So, what counts in socialised medicine is the lowest common denominator, not saving people. Also, I was informed that in Quebec large chunks of cash go to Cancer problems, as this is what most people get. So, socialised medicine helps with more frequent problems, but not with things that are not highly prevalent.
3) American doctors have get-go and they will try stuff to help a patient. I admire them immensely. This will never happen here because everything is followed according to a specified protocol outlined by the health officials. That is why no saline IVs, etc etc., or other experiments to help an ME patient.
So, one day if a treatment becomes available for ME, and is universally recognised and is not too expensive !! the government may make it available.
I pray that the American researchers come up with something soon.
Thanks for listening.
I was a random participant in the survey of one of the first CCH surveys before I understood what it was about. I was amazed at the questions they asked and the depth the questions went into. It was very specific and I had been diagnosed with CFS at that time for many years. It was when the National ME/FM Action Network published these numbers and the comparison analysis of the many unmet needs and numbers for different illness groups, that many of us became empowered to speak out. You can read the history in more detail in “Lighting Up a Hidden World: CFS and ME”. Had we not learned of the conjoining of the ME label from other countries, with the CFS label we had obtained back then, I doubt the conversation would have ever begun at all. Still to this day, despite my book and my knowledge, I usually have to use “CFS” in conversation with professionals (they don’t really get that very well either) but even fewer know what ME is or what it stands for. A long way to go for clarity on these points in the regular world.
What are you talking about Wendy “the Founders?”
and, thank you Cort
Thank you for a wonderful synopsis of the ME/CFS work done in Canada.
The conference looks wonderful, too. Hoping it will lead to breakthroughs in understanding and treating ME/CFS.
Wish they could bring in Dr. Afrin from border state New York to have him talk about MCAS (mast cell activation syndrome). Would be good to have ME/CFS docs hear more about it especially allergy immune experts like Klimas.
Mast cells are found mostly in the environment-body interfaces. Most are in the gut. The blood brain barrier also. Sensitivity reactions are fast or slow acting, and triggered by heat/cold, pressure, chemicals, emotional stress, foods, lots of others.
Treatment is simple at first and do-it-yourself. Find your individual triggers and avoid them. Then look at building a histamine blockade with over-the-counter antihistamines in allergy treatment, and over-the-counter antacid pills. Dr.Afrin details it in an interview.
More complicated than this, you’ll need prescription meds from a doc.
My doc thinks this is fantastic. Half of her patients suffer over-sensitivity reactions.
Of course, testing for MAST is just as hard as ME/CFS. Special tests exist though not always easy and you’ll probably have to go through the Mayo Clinic labs in Rochester.
Trialing is easy, though.
Oh yeh, many many meds have antihistamine action as a side-effect, so you may be benefiting from the antihistamine rather than the main effect. To name a few … Klonopin, Amitryptiline, benzodiazepams, many antidepressants.
Yes, indeed. Hopefully in future conference Dr. Afrin will get in there. I’m pretty sure that Dr. Klimas, in particular, would welcome that as she’s stated that she’s very interested in MCAS.
How about an alternative diagnoses section at the next IACFS/ME conference which includes experts on POTS, MCAS, EDS and others?
Yes, Zac that is an excellent suggestion. But Dr. Moreau is really new to the field of ME, and I think had he been contacted, he may have included someone like Dr Afrin. Who knows, perhaps it is not too late to write to Dr. Moreau, and make this suggestion.
Thanks so much Cort for this excellent summary of the Canadian landscape. Of course, seeing it all together makes the situation seem so much more advanced than it actually is for patients on the ground living with ME. But, the truth is that there are signs that the winds of change are blowing our way, as seen in this first Canadian ME/CFS conference and the new CIHR announcement for funding an ME/CFS Collaborative Project (https://www.researchnet-recherchenet.ca/rnr16/viewOpportunityDetails.do?browseArc=true&fodAgency=CIHR&org=CIHR&progCd=10866&view=browseArchive&language=E)
Hi Cort,
Thank you very much for your article on the Canadian/international conference. Regarding the numbers of those with ME (“chronic fatigue syndrome”)in Canada, the current Canadian federal government Public Health Agency website notes this disease “affects over half a million Canadians”:https://www.canada.ca/en/public-health/services/chronic-diseases/chronic-fatique-syndrome-myaligic-encephalomyelitis.html
Thanks again, Cort.
Thank you Cort for summarizing Canada’s contributions. It was a pleasure to finally meet you at the conference.
I hope in future articles you can also mention Canada’s other national charity Action CIND. We may be new to the scene but we’re determined to make a difference in Canada for ME, FM, MCS/ES and CFS patients. I was a speaker twice at the event and I’ve joined both of the panels that were formed at the conference to help solve ME. Perhaps you’d like to do an article on us one day.
Thanks Allison I look forward to learning more about CIND and I’m disappointed I didn’t mention you in the article.