1st ME/CFS Canadian Collaborative Conference

https://www.fourwav.es/view/647/info/

 

Patients are only allowed on Day 2:

Choisissez votre type d'inscription / Choose your registration type: *

• Médecin / Doctor
• Chercheur ou Professionnel de la santé / Researcher or health professional
• Résident ou étudiant / Resident or student
• Patient (jour 2 seulement) / Patient (Day 2 only)

 

Patients are not their priority:

The aim of the conference is to:

• Provide physicians, clinicians, researchers, and other healthcare professionals with a platform to discuss advances and innovations in the study of Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome.
• Develop, with the help of an international coalition of ME experts, a sustainable ME/CFS research agenda.

 

I saw that, i wonder why...
That said anyone planning on going or happen to live in Montreal?

 

Derya Unutmaz has said on Twitter that he's going, which is a positive sign.

 

@Perrier I suspect Montreal is not unique within Canada with respect to ME not being covered in medical schools. Due to several medical issues in addition to ME that have developed during the past eight years, I have seen many specialists. Further, my excellent GP and rheumatologist frequently have medical students or recent graduates accompany them to patient appointments. I always seize the opportunity to ask if ME or CFS is/was included in the curriculum at their school. The answer, so far, has been a disappointing “no”.

A few weeks ago I searched Alberta’s illness codes document to see how ME is classified. I looked under every name and abbreviation I could think of, and when that wasn’t successful scanned every page for a possible link. I found nothing.

 

Well, it is still valuable to bring people up to speed, and it looks like they are aiming on having a crowd. So it’s encouraging. It takes numbers of people to learn and understand something before a paradigm is apt to change. And it’s a good time because the science is strong and research field is hopping. (What would “hopping” be in Québécois?)

 

From what I've heard the following can be expected:

Lucinda Bateman
Peter Rowe
Maureen Hanson
Alison Bested
Ron Davis
Patrick McGowan
Nancy Klimas
Byron Hyde
Derya Unutmaz
Roland Staub
Eleanor Stein
Betsy Keller
Luis Nacul
Chris Armstrong
Vicky Whittemore

 

Day 3

A roundtable discussion that will focus on developing a collaborative ME/CFS research agenda that includes clinicians and researchers at the national and international levels.

No research about ME, without ME patients.

Its this kind of exclusion that sustains the health care horror for ME patients.

 

Yes, I registered tonight. I will be attending.

 

I am considering it, but coming from out of town will be very exhausting, plus the cost, not terrible but enough to be an issue.
I wish they would have no cancellation fee for patients, especially since we would not cancel for no reason but because of the purpose of this conference

 

I did not realize meals are included, thats a bonus
Are you traveling to attend?

 

The cost includes breakfast, lunch and breaks, which is worth about 25$, so it’s like paying 25$ for the conference, which is reasonable. But of course if you have to cancel, it’s all lost. And of course accomodations.

If you decide to come, let me know so we meet and chat.

 

I'm not sure this accomplishes or prevents what the researchers might imagine it does. Moreover, to some it might smack of false peer-reviewed nonsense with a dollop of elitism thrown in for flavor.

Letting patients in to at least listen to hitherto closed sessions might actually aid in the research process. Those pesky patients can occasionaly bring unique insights to the conversation that mice or other research animals are more reticent about.

 

I'm sure there is nothing to worry about. The sponsors include proactive Canadian patient organisations, and the 3-day format looks as though it's modelled on the highly regarded and successful Invest in ME Research Conference week, which started in 2006 with a public day for everyone, patients, caregivers, scientists, doctors, etc. and has evolved year on year to include a 2-day closed workshop for the researchers to get their heads together, share data and ideas, plan collaborations and so on, as descibed by Trish, and 2018 includes an extra day for early career researchers. Also, looking at the list of researchers, most if not all, have been working together through the IiME Research events over the years and already work in partnership with patients....so it looks as though this Canadian initiative has gone straight for a model of proven success.

 

If this was one of the popular cancer or HIV or another highly funded disease conference, I wouldn't be so concerned about the lack of patient inclusion.

But given the decades of harm and neglect of people living with ME by our hellth care system, I have little reason / evidence to trust their process for determining a research agenda. In fact, the evidence is plentiful that this conference will lead no where, just as the Canadian conference from 30 years ago went no where.

Health Canada does not have any more funds set aside for ME research. Once this $70k is used up for this conference, that's it. So some would argue the $70k crumb they threw to the 580,000 Canadians with ME is to placate them and this is just a conference for show, not for future research.

I'll start trusting the government's process when the government proves it can be trusted, and to do that it must overcome 3 decades of denial and betrayal.

FWIW, they didn't ask to use the Millions Missing Canada logo as evidenced by using an old version. They have also failed, in spite of repeated requests, to include MMC in email updates. So based on behaviour, they want to appear to have patient endorsement, but in practice they don't involve patients.

I hate to be a Davey-downer, but the reality is Health Canada fails ME patients at every turn, in every way. I cannot think of a single instance of the government doing right by ME patients - not protecting us from iatrogenic harm, not by funding research, and not be increasing access to treatment.

Even the $70k crumb for this conference is insulting. Fair and equitable funding would be about $88 million.

I'm reminded of this Larry Kramer quote: "You treat us like crumbs. You hate us. And sadly, we let you."

Acquiescing to the status quo is sustaining the problem, not solving it. This is a crucial opportunity for Canadians with ME.

Will we settle for more of the same, or demand inclusion and change?

 

The Canadian Institute of Health Research (CIHR, the org that decides what diseases get what funding) promotes patient involvement in research - but talk is cheap: http://www.cihr-irsc.gc.ca/e/45851.html

What is patient engagement and why do it?

Patient engagement occurs when patients meaningfully and actively collaborate in the governance, priority setting, and conduct of research, as well as in summarizing, distributing, sharing, and applying its resulting knowledge (i.e., the process referred to as "knowledge translation"). It is of vital importance as "engaging patients in health care research makes [investments in] research more accountable and transparent, provides new insights that could lead to innovative discoveries, and ensures that research is relevant to patients' concerns. The international experience with engaging citizens and patients in research has shown that involving them early in the design of studies, ideally as early as at the planning stage, leads to better results."

 

If only....