For those of us in Ontario: I found this on the MEAO website

[Kati]

@Snowdrop while indeed health care is of provincial responsibility, Canada gives money, 1 billion a year to the CIHR (Canadian Institutes for Health Research). Hundreds of millions goes to HIV, some goes to market an Ebola vaccine, and so on. Where is MECFS? Nowhere.

The Institute who is supposed to take ME under their wing is the Institute of Musculoskeletal health and Arthritis. 2 representants attended IACFSME last year. What came out of that? They decided a 150 000$ grant to research chronic pain and fatigue would take care of this inconvenient problem. (Not sure if the position has been filled)
As you probably know researching chronic pain and fatigue is casting a very wide net.

 

[Ember]

I really have no idea why the MEICC never picked up in popularity despite many, many of our experts being the co-authors.

My take is that patients can push and shove however they want, but until the doctors decide it is an important problem, nothing is going to move.

When did patients push and shove on behalf of the ME-ICC? How many patients take the ME Primer with them to their medical appointments in order to better inform their doctors?

 

[Snowdrop]

@Kati

Thank-you. I am ATM completely oblivious to the political situation or how things work/don't work with regard to funding treatment and research.

I take it from your lack of response that you are not referring to the proposed centre of excellence as useless but the sort of treatment so far available through the enviromental health network at WCH?

 

[Snowdrop]

How many patients take the ME Primer with them to their medical appointments in order to better inform their doctors?

I suspect that even if patients had done that it would not have been effective. It doesn't seem likely to me that Dr's would expend energy on reading a lot of material even if they thought it had merit. Most Dr's would rather wait to be told what to do and have that authority backing their actions.

 

[Ember]

I suspect that even if patients had done that it would not have been effective. It doesn't seem likely to me that Dr's would expend energy on reading a lot of material even if they thought it had merit. Most Dr's would rather wait to be told what to do and have that authority backing their actions.

From what you say, you haven't tried. In my experience, the results are effective.

 

[Snowdrop]

@Ember

I'm very glad to hear it.

 

[Kyla]

blerg. I am equally annoyed that they are doubling down on the "environmental" angle, for the following reasons:

1) Lumping ME/CFS in with a bunch of other illnesses that are sometimes co-morbid just adds to the impression that ME/CFS is not a distinct or diagnosable condition. Especially when the other illnesses are also not well understood it just makes one giant garbage bag for diagnosis, and contributes to doctors not taking any of them seriously.
I can understand supporting other poorly understood conditions, but you don't see any other disease being lumped in with its co-morbidities in this way.

2) By their own statistics (the Venn diagram), there is a significant co-morbidity, but MOST of the patients in each group only have one of the three. How is this serving the majority of patients in any category if we only focus on those that fit in that small overlap?

3) The ONLY services for ME/CFS that currently exist in Ontario is the one Environmental Health clinic. We absolutely need more services, but I would hope they would expand to include more approaches, rather than just duplicating the one and only option already available. One which may not be helpful to those that don't fit into this subgroup.

4) While environmental health aspects of ME/CFS may be a potentially fruitful avenue to explore, this is NOT the direction any of the current research has taken. Most of the recent promising results are in areas relating to the immune system. Why are we going off in a completely different direction? one that is as yet unproven

5) If people want "alternative" medicine treatments those are already readily available (though at a cost). Why is this document pushing the integration of that approach? There is no validated efficacy for this approach at this point, which is just going to once again contribute to us not being taken seriously. This document refers back to evidence in a number of places, but then randomly throws in casual references to the harms of WIFI, again, not a mainstream position, and probably not helping us out. not to mention if this alternative/integrative approach is actually approved it would be taking up what little resources are available for an approach that is already available.

sorry. rant over. I got excited that something might actually be getting pushed forward in Ontario and then pretty upset with the direction and content.

 

[Kati]

When did patients push and shove on behalf of the ME-ICC? How many patients take the ME Primer with them to their medical appointments in order to better inform their doctors?

Let's blame the patients for not properly educating their physicians about their own disease. Sheesh.

 

[Ember]

Let's blame the patients for not properly educating their physicians about their own disease. Sheesh.

Haven't you been calling for more effective advocacy?

 

[Kati]

@Kati

Thank-you. I am ATM completely oblivious to the political situation or how things work/don't work with regard to funding treatment and research.

I take it from your lack of response that you are not referring to the proposed centre of excellence as useless but the sort of treatment so far available through the enviromental health network at WCH?

Never heard of Centers of Excellence even been mentioned in Ontario. As for Vancouver we are far from being a center for excellence though there is a potentially very good research program happening. However on the clinical side there is a whole lot of alternative 'medicine', not mainstream medicine. A Center for Excellence would at the very least offer medical treatment, testing, and clinical trials.

 

[Snowdrop]

@Kyla

On the other hand, lumping us with other diseases can provide synergy. It's possible that breakthroughs in treatment and discovering aetiology can come from other even seemingly unrelated health research.

Autoimmune illnesses have such centres for research (as just one example). It's possible that MCS and fibromyalgia are also autoimmune so that it may not matter so much about the name of things.

My apologies. I am responding to the beginning of your post without finishing it which will have to wait for later as I have a skype date with my daughter momentarily.

 

[Ember]

As for Vancouver we are far from being a center for excellence though there is a potentially very good research program happening. However on the clinical side there is a whole lot of alternative 'medicine', not mainstream medicine. A Center for Excellence would at the very least offer medical treatment, testing, and clinical trials.

I've received medical treatment and testing, but I wasn't eligible for clinical trials.

 

[Kati]

@Kyla

On the other hand, lumping us with other diseases can provide synergy. It's possible that breakthroughs in treatment and discovering aetiology can come from other even seemingly unrelated health research.

Autoimmune illnesses have such centres for research (as just one example). It's possible that MCS and fibromyalgia are also autoimmune so that it may not matter so much about the name of things.

My apologies. I am responding to the beginning of your post without finishing it which will have to wait for later as I have a skype date with my daughter momentarily.

There is good lumping and bad lumping. Lumping diseases together to research its similarities and differences, good.

Lumping diseases together because they are vaugely defined and elude the regular doctor, usually bad. This kind of lumping is interesting to the psycholizers who want to prove these diseases are psychogenic. We all know where poorly defined cohorts lead (think PACE trial).

The big problem I have with environmental diseases in Ontario is it is not likely to encompass asbestos or any kind of chemical exposure causing disease. Nor would it deal with lead posonning in children, etc.

 

[Kati]

I've received medical treatment and testing, but I wasn't eligible for clinical trials.

There are no clinical trials at CCDP. Just studies.

 

[Kyla]

@Kyla

On the other hand, lumping us with other diseases can provide synergy. It's possible that breakthroughs in treatment and discovering aetiology can come from other even seemingly unrelated health research.

Autoimmune illnesses have such centres for research (as just one example). It's possible that MCS and fibromyalgia are also autoimmune so that it may not matter so much about the name of things.

My apologies. I am responding to the beginning of your post without finishing it which will have to wait for later as I have a skype date with my daughter momentarily.

Absolutely. Some of the current research such as the Rituximab trial is being informed by previous research into Cancer and Rheumatoid arthritis. But prematurely declaring all these diseases to be of the same aetiology without any evidence to back that up just confines us to one path.
It also confuses the issue in cases where optimal treatment is different, or even at odds. For example, physiotherapy is commonly prescribed for Fibromyalgia, while there may arguably be helpful physical interventions for ME/CFS (eg - Heart-rate based pacing), assuming this same treatment applied in the same way would be helpful for both diseases (without proof) is likely to be quite harmful.

 

[Ember]

A Center for Excellence would at the very least offer medical treatment, testing, and clinical trials.

There are no clinical trials at CCDP. Just studies.

Are you faulting CCDP for its research program? Does its research program disqualify CCDP as a Centre for Excellence in your view?

 

[Kati]

A center of excellence refers to a team, a shared facility or an entity that provides leadership, evangelization, best practices, research, support and/or training for a focus area. The focus area in this case might be a technology (e.g. Java), a business concept (e.g. BPM), a skill (e.g. negotiation) or a broad area of study (e.g. women's health). A center of excellence may also be aimed at revitalizing stalled initiatives.[1]

Within an organization, a center of excellence may refer to a group of people, a department or a shared facility. It may also be known as a competency center or a capability center. The term may also refer to a network of institutions collaborating with each other to pursue excellence in a particular area.[2] (e.g. the Rochester Area Colleges Center for Excellence in Math and Science).

In technology companies, the center of excellence concept is often associated with new software tools, technologies or associated business concepts such as Service-oriented architecture or business intelligence.[3][4] In academic institutions, a center of excellence often refers to a team with a clear focus on a particular area of research; such a center may bring together faculty members from different disciplines and provide shared facilities.[5]

In the healthcare sector, the term often refers to a center that provides sufficient and easily accessible medical services to patients

Are you faulting CCDP for its research program? Does its research program disqualify CCDP as a Centre for Excellence in your view?

did I actually say I faulted CCDP for its research program @Ember? No. i said above, 'there is a potentially very good research program at CCDP'. The clinical side is a disaster.

When we will have a Center for Excellence, @Ember, you will know. The quote up there is from Wiki. i particularily like the last sentence which disqualifies CCDP at the present time. 'Sufficient and easily accessible medical services to patients.' Could not be much farther than reality.

ETa I will not spend much time argueing in here, it's pointless.

 

[Ember]

The clinical side is a disaster.

I'm sorry to read here that you had a bad experience.

When we will have a Center for Excellence, @Ember, you will know....
ETa I will not spend much time argueing in here, it's pointless.

If you expect others to accept your views without question, you're not arguing in any case.

 

[Snowdrop]

But prematurely declaring all these diseases to be of the same aetiology without any evidence to back that up just confines us to one path.

I'm not sure how doing that sends us down one path. I say this because there are other avenues being investigated as well concurrent with this. Also, it's entirely possible that I misunderstand what you are getting at.

@Ember @Kati

I started this thread so I will participate but I'm feeling like I need a to make a big confession in doing so.

Whenever I leave this thread I have to go back and re-read what was said because I 'loose the thread' of what's going on so to speak.
And I am majorly clueless as to a lot of the historic and political issues as they pertain to Canadians and ME. I've been sick a long time and in the 2.5 years I've been here I haven't really brought myself up to speed.

Looks like this is my opportunity since you guys know more about this.
I'm not in any way trying to be disingenuous here. My ability to take this all in will be limited by severe cognitive deficits. New information has to be repeatedly taken in over and over. I also am very slow at creating a post. Most of my posts are very short. Long ones add a layer of difficulty for me.

That said, I googled CCDP and got Cisco certified design path and Christ church deer park. Maybe I should know what this is but I don't.

Also, I have not had great success with Dr education but that could simply be that I am quite limited now in my ability to function.
My cognitive decline actually predates my more severe physical decline. I don't have a lot of stamina for organising information and then providing clear coherent explanations to questions asked of me (problem of real time response). I may have been in error about the ME primer. I presumed it to be a long document and that most Dr's would not spend the time. @Ember, if you have had success with this I would be happy to hear how it was accomplished.

I have an appointment with a neurologist in the summer and I have a follow up appointment coming up with and internal medicine Dr. But just getting to these appointments wears me out I'm not in good form when I get there. And I'm considering cancelling the IM appointment as I don't really see any help there. The neuro is another story since I've been an epileptic and there are issues there around other types of seizures.

I hope that as a group of Canadians on PR we still might come to grips with what things we can do together to further treatment here in Canada.

 

[Ember]

I googled CCDP and got Cisco certified design path and Christ church deer park. Maybe I should know what this is but I don't.

I too struggle with my posts, but I usually try to be more careful with anacronyms. The Complex Chronic Diseases Program (CCDP) is at BC Women's Hospital in Vancouver.

I may have been in error about the ME primer.... @Ember, if you have had success with this I would be happy to hear how it was accomplished.

I always take my ME Primer with me to my medical appointments, not only for my own sake but also as an act of patient advocacy. My GP already knew of it before I first took it to him in 2012. My naturopath began using it immediately as a teaching tool with his students. I've since taken it to support groups to inform fellow patients, and I've arranged to have copies sent to administrators at BC Women's Hospital.

The Primer is freely available online, but I've been fortunate enough to have my own bound copy. As a gift for a fellow patient, I had one printed and spiral bound for just over $20.00 at a local copy shop.