The Canadian health minister confirms they have no plan to address ME

But Alvin, I see you posting here often. It means that you have the cognitive capacity to think and write even much reduced. That is valuable. Some of us are bedridden but able to do ‘some’ cognitive work. Sometimes if we focused our efforts on one task, one topic, then we could move forward on that one task. There are a few examples of that in te international community. @Tom Kindlon is one. @JenB is another one. @Webdog had success simply writing emails as of late. There are many others out there (sorry my brain is short sighted to name all of you)

If we picked something we felt was urgent to address, then if 4or 5 people worked together on what needs to be done, then perhaps we could get a bit further. If doesn’t need to require much time, it could be as simple as a few emails.

 

I know this is directed at Alvin but I'd like to respond.

That's not really fair from my point of view. My cognitive issues are such that I can post here frequently too but I only post my opinion of things I see and then only if the subject is familiar to me or has a corollary in my experience that I am well familiar with and can draw on.

Anything new, any information at all that I have no previous knowledge or awareness of requires years for me to become comfortable with. It took years for me to even have the limited understanding of PACE that I do and even now the details keep getting lost no matter how many times I've seen them because they relate to methods that I have no familiarity with. Any new thing is beyond me and I have lost the ability to do some techinical things on the computer and on my phone and other things because I did not use the knowledge on a daily basis.

I often feel that I don't contribute much to most conversations but post anyway because I want/need an outlet to express myself and be heard and because this is where I find community and the kind of information that suits me. And I know that regardless of my limitations I feel welcome.

But back to capacity to function -- making a few suggestions is possible but the ability to organise new ideas, deal with details and many other things that I don't seem to be able to conjure up the language to explain are completely elusive.

I think it's safe to say that for those of us who are motivated to be here and who believe that advocacy is necessary we would do whatever was necessary if we could. It is a point of great frustration for me personally to be reduced to having very little by way of personal agency to bring to the situation regarding my illness but also my life in general.

It's really hard for anyone (as we have often acknowledged) to understand our experience. I think this applies also to issues around cognitive functioning and even having words for how things just don't work.

I hope this goes a little way to explaining why we might not be able to manage any more than we are presently doing (although it may be that I should speak for myself only).

 

Fair enough. However in our patient community, there will be some who actually want to and can do something. They may not know how, but wanting to is a start. We have a spectrum of physical/mental capacity and presumably we have folks with all kinds of knowledge from past professional experience. I feel we could tap into that, instead of waiting for the decision makers to do this down the road. Nothing is happening fast. My 10th year sick-versary is in 6 weeks.

 

You would think. I can explain things i know and give analysis in areas i was involved with before i got this severe, though i have noticed when i talk about ideas here most ideas are shot down. Feel free to check out my started threads on this forum, and also many posts throughout the various threads. Also i end up not arguing things for long because i can't sustain the energy (or i get told not to) or i get confused or i google things and can't read or collate the results (there is one thread in particular that comes to mind that i just gave up on). Sometimes i argue too long and pay for it which i should not be doing. Yesterday i posted two possibly relevant articles as new threads, ones i could not read but thought might be relevant to members. I also have many threads unread here (the unwatched threads only shows 20 threads so i don't know how many there are), another oddity is that i can keep on something for a while before it becomes cognitively overwhelming, its oddly easier to read a new thread with a few replies then keep up with a thread with many replies even though i had read them for a while. Yet i can't read more then a small article (no books and i blank out on flyers). This is just fucked up. What bugs me is i can't even explain why any of these things are happening, they are just so contradictory and confusing on top of cognitive dysfunction i sometimes wonder whose fucking sick idea this disease is?
I have done some stuff behind the scenes (one is in progress) and i have ideas but my reliability is pathetic and i have to prioritize taking care of myself while i still can and i have so many things to do that i can't get to that i'm ready to drown.
And my cognitive dysfunction is very strange, rather similar to what @Snowdrop talks about. In fact i have more then a few symptoms resembling dementia. I wish i was joking, i have been tested for it by a neurologist and have had deficits found though i have issues with the test but thats another tangent.
Sometimes i don't know whats worse, physical or cognitive issues in this disease.
I do what i can where i can (i'm not doing nothing in ME/CFS) but i'm beyond tapped out. I don't intend to stop what i am able to contribute but asking me to do more is asking me to harm myself further. Another thing i am terrible at, not overdoing it.

I agree with you but the breadth of what needs doing requires people who have decent functioning ability, if i were in charge of things you can be sure they would fail (to my shame)
I can toss out ideas if others are receptive, i can even assist as energy allows but thats about it (and that is happening a bit already, things i am not getting into details about here). Oh and i have a few thousand bookmarks waiting to be read, things from ME/CFS research to things i am interested in to things i need to get done for myself. I expect i will never get to them but they are there just in case.
Oh and i currently have 2245 alerts, so if anyone was wondering they do go over 3 digits. I wonder if they go over 4 digits, i might end up finding out.

 

This is well written. What i found for years is that i had a lot of trouble explaining these symptoms, especially in ways that doctors would understand (for the decades before i was properly diagnosed). If i had a do over i would have done things very differently not just with doctors but with my own actions.
Ironically as you mention i have not actually fully read the Fluge/Mella pyruvate dehydrogenase paper, i have read part of it, referenced it many times but have not actually got through it
When i was first diagnosed with ME i didn't believe the doctor. I had read about it a bit and given the crappy information at the time and my severity and adaptations i didn't buy it and had had many wrong diagnoses by doctors who had no idea what they were doing even though they meant well. I said ok thanks for your time and did further research. Over time i came to realize this is what i unfortunately have. And interestingly from posts on this and the other forum i have found others with the same symptoms that i have, like your post which i can very much relate to.
Its amazing how much cognitive (dis)ability i was functioning on for years with problems and how much i have lost since, from inability to do math to repeating myself to being unable to solve problems to other symptoms i am so used to i can't even remember them anymore i sometimes don't know how to manage or what i am going to do in the future

 

I am sorry to burden you further @Alvin. It waas not my intention. I just want things to get moving. i want things to be happening in our country, and to each our provinces.

I don’t envision one leader. I envision teams that works on one problem, teams that share what they know or what action they have taken, then receive and give feedback about what the next step should be within the scope of their committee. That’s all.

 

On this we agree.

I understand and i would like to give ideas and participate where i can but our army is made of walking wounded and dying soldiers, we have to be very realistic about what we can and can't do. That said we should maximize what we can do which is something i support.

 

When the day ever comes that there is a diagnostic test agreed to, we better get emailing for them to "Move it!"

 

Same with all of this. Prior knowledge and things that are familiar with prior knowledge work OK when there is sufficient relevant information to relate to it. Learning is just plain herculean. With time and a lot of repetition, I can do some of it, but we're talking about a 10-100x reduction in "performance".

I know only little of psychology, but the explanation that makes the most sense to me is the systems 1-2 of attention: the conscious higher-order brain function and the automated circuits of learned behavior. As the brain learns, it creates paths for automatic recalls. This allows us to use this knowledge with little effort. That's why we can drive for a while and somehow snap to "oh damn I just went X minutes without paying attention".

Learning things. Paying attention. Making decisions. All of those can't be done automatically, they can't rely on those automatic pathways. I find those almost impossible. It's like dragging a whole mountain. The same as with a flu, jetlag, hangover, sleep deprivation, whatever. I think it's some sort of switch that forces the brain to conserve energy and stop doing things that use a lot of energy, which makes a lot of sense considering how energy-hungry the brain is.

And I can compare it with my past self. I used to have little trouble concentrating hard. I have a huge reserve of internal motivation and could just plow through hard tasks because I enjoy challenges. I used to be a programmer, where it's critical to be able to mentally construct models, entities, interactions, data flows, etc. That takes huge concentration, but it was easy for me and I enjoyed it.

I went through university without much difficulty. I doubt I could pass high school right now. Not because I'm less intelligent, it's still there, but because I can't use the higher brain functions required to understand and learn new things. I even used to enjoy doing my taxes. Not because it's fun but because it gave me clarity about my situation and it was easy. It has nothing to do with willpower or motivation.

Now my parents have to do everything of that nature: taxes, appointments, disability claims, etc. That's a huge change and it's frustrating that the severity of that change cannot be objectively demonstrated or measured because health care workers don't know me, they don't know if I'm not very bright or actually sick and they won't ask because they can't measure it anyway. Hell, my GP from birth could not even tell the difference because they don't actually know us, what we are capable of and what difference there is even when we are severely cognitively impaired.

I really hope we can get some research going because this is the #1 problem for me. I can deal with a broken body, I could work mostly fine if I still had my higher brain function. Before I became fully disabled, I was able to get by with 10-15 hours a week of work, software development pays well. I try every now and then and while the knowledge is still there, it's just locked away because it takes concentration to apply it to new problems.

 

A few points: the genetic research the Minister mentions in her letter is $45,000 for each of three years = $135,000.00; given that the Canadian government has documented 580,000 with ME, this funding amounts to 23 cents/pwME in Canada. Without the actual dollar figure, it sounds like the Canadian government is sincerely researching ME.

A rough estimate of what the Canadian government has spent on ME research in the past 20 years is about 25 cents/pwME/annum.
A previous letter from the former Health Minister also used the same tactic to present just over $1.5 million spent from 2000 to 2016 as a notable accomplishment.

One thing governments are good at is spin. On the face of it, this current letter looks like they're concerned, but they're not. Not at all. For a country that prides itself on human rights, and "being nice", Canada is way off. Pointing out human rights abuses in other countries, as Canadian politicians do is hypocritical

Regarding a new national group: we have a national group that has been slogging in the trenches since 1993, and has accomplished a great deal. Everyone needs volunteers; anyone able can join this group.

As well, I agree that groups across Canada should come together, but also do their own separate work, as we need work on many fronts, as Milo has listed.

When I was first diagnosed in the early 1990s, there were lots of support groups in many towns. There don't seem to be now. There seemed to be more hope then.
What will galvanize that hope again?

I agree, we need mass media attention. Our media is owned by a very few, who control most input in Canada. There are however, alternative media - Rabble.ca, The Walrus etc.
Perhaps if articles got into these media outlets, the mainstream bunch might pick it up.

David Tuller said he is going to come to Canada sometime. His writing gets attention and respect. Maybe the community could build on this.

We could pay for some research ourselves - we have 580,000 diagnosed in Canada, as per the 2016 Canadian Community Health Survey - I suggest a $1.00 from everyone/year.
For those too sick to contribute, and I get it, just to organize the contribution and mail it is freakin' exhausting; some of us could contribute $10.00 to cover those who can't.
Other ME communities contribute to research and conferences. We can too!

On a provincial level, groups, and individuals could contact medical colleges, universities etc. If the Health Minister won't educate health care providers about ME, we can. I know these groups may not listen to pwME, but maybe this contact gets a foot in the door. Health care providers pay attention to government writings about ME. There are enough of these articles to inform practitioners that ME is organic.

And, a point about testing - if the powers that be wanted biomarkers, we have some: https://cfstreatment.blogspot.com/2013/05/patient-survey-results-for-fda-drug.html

Dr Lily Chu presented the above list of 5 tests to the FDA in 2013, and the U.S. Institute of Medicine accepted at least a couple of them as sufficient evidence, (NK cells, and 2 day CPET) in its 2015 report. No energy right now to check if the other tests Dr. Chu advocates were accepted by the IOM.

When government websites, health care practitioners, and others say there are no tests that validate ME as organic, they are misinformed, or are misinforming.

 

Further to the Minister's letter, she refers to treatments that improve symptoms; I ask what treatments, and what improvements is the Health Minister referring to? And, if we at least have treatments that are improving symptoms, why don't we know about them? Why don't physicians know about them? Yes, there are treatments noted in physicians' manuals such as the IACFSME 2014, and the CCC, BUT most doctors don't know about these manuals, let alone any mitigating treatments. It would be helpful if the Minister advised physicians on these treatments - except of course the debunked GET and CBT nonsense!

 

I don’t think the health minister has any idea of how dire the situaton is (medical, socio-economic, emotional) for so many of us, and how patients are mistreated by our health care systems. And referring to the Montreal conference, the 3 major existing programs in Canada are all offering group therapy and symptom management. It remains that patients are still sick and chances are we will remain sick for decades. Their supposedly ‘holistic program’ is psycho-social with a good helping of cost saving self-management.

These clinicians are not focusing on research or advancing clinical research, whether it’s because they have no time or budget for that, or they are simply not interested or not trained in clinical research.

We need an infrastructure and federal strategy aiming at advancing research for all of us.

 

I agree, Milo. We need an infrastructure and federal strategy. We need leadership from the federal government - from Health Canada - from the Health Minister. This piecemeal approach is disorganized and harmful, when psycho-social bunkum is used.

We know the two main federal parties are big business parties; aligned with the super rich in Canada. And lobby groups with vested interests have the ear of these politicians.

I don't know what it is going to take to get these parties to see and understand the reality of our situation. It's often extremely difficult to get friends and family on board. More people in general seem to acknowledge the organic reality of ME. Canadian groups have tried very hard to engage with all levels of the federal government.

I know this is another piecemeal idea, but on a larger scale - working at provincial levels may be productive. Trying the same awareness building at the province level may get somewhere.

 

And, work at the local health authority level, although a much smaller group may help raise awareness. We have a list of links from government authorities acknowledging the organicity of ME: two from the Canadian Institute of Health Research, at least one from NIH - the Directors' blog last year, the Snomed classification of ME, the IOM report, and the CDC updated website. Plus, Unrest, is going to be used in CME training. All perhaps helpful points to tell local health authorities, university med schools, provincial health ministers etc.

I really understand this is lots of exhausting advocacy. Suggestions to take the list apart, and divide up the work is the only way to go,with anyone, even the healthy.

 

Dividing up the work is of course the way to get things done. The problem is there presently seem to be not enough warm bodies in the Canadian ME community to effectively manage more than a minimal amount of this work and those people are no doubt risking their own health.

Where are the 580,000 Cdns that get mentioned as the total?

I think there are a few problems. I believe it's possible some ppl with ME have been diagnosed with Fibromyalgia (this is the diagnosis I have from a rheumatologist and it is a good diagnosis for me) but I think some people stop there with the diagnosis (especially if they are still somewhat functional) and don't consider that there symptoms may also be indicative of ME. There is no benefit to an ME diagnosis in Canada. But ppl with fibro may claim benefits and there are a few treatments that drs may be more willing to consider.

I think getting the attention of politicians is the end game. That's not to say it can't be pursued in parallel with other strategies but I would place some priority on finding more bodies to share the effort. Making alliances with other groups who presently may be somewhat insular and doing their own thing.

I would suggest again, that developing relationships with health journalists and people at the appropriate university research institutions (educating them/making them aware of the reality) would be the groundwork for getting the political change we want.

It would be great if we could even get a few more qualifies people to understand PACE and become signatories to the letter that 100 other scientists have signed (there are a few from Cda/3 or 4maybe?)

I'll say it again, political change happens slowly and gov'ts change fairly quickly. We need to be in a place where we have a solid foundation so that it is easier to bring more pressure more quickly IMO.

We can even ask for help over time as other groups elsewhere become more established. We could coordinate things with ME action US or others down the road.

 

Working on a few fronts at once, is as you say, Snowdrop, (great name!), what needs doing. Boots on the ground are scarce. I agree, where is everybody? As I said earlier, twenty five years ago there seemed to be more local support groups. It seems they are few, and far between now. Which is something, to note about our nation's size, and relatively sparse population. Maybe, somehow, that hampers advocacy, and positive change.

Some medical personnel are open to government information/statements about ME. This likely includes medical education programs at universities. Government info has been researched for medics, they don't have to read study after study to get to the conclusion.

As regards journalists and researchers open to seeing ME, we can seek out some of these people in historical info about ME. Experts who presented at workshops etc
We may find journalists in alternative media. And CTV has been supportive. CBC coverage is virtually nil. Wonder if government has directed CBC journos to keep quiet about ME.

As for collaborating with MEAction, my understanding is Millions Missing Canada does do that. But, someone else can verify or provide the correct info on this.

I have written to politicians of all stripes, and government levels since 1991, when energy and brain power allowed, with virtually nothing to show for it, except the occasional tepid, non-commital response. Part of the change has to come from politicians, but the medical establishment might be more amenable.

 

Further to joining with other groups,people have mentioned the POTS community, whose members share a lot of symptoms with our community. Fibromyalgia groups are a definite connection, and some organizations are already both ME and FM based. Connecting with provincial pain groups, may garner some allies. There may be volunteer health coalitions that work to get the ear of governments. And, generalized disability organizations may add oomph.

Contacting colleges, and organizations for various medical, pharmaceutical, dental, physiotherapy organizations may be useful.

Designing a letter with links to government statements on the physical reality of ME may catch these groups' attention.

I understand, this is a lot of advocacy! Advocacy harms many of us, including me. But no one else seems to be swooping in to do this.

Thank you very much Snowdrop for your ideas, and feedback.

I hope others have suggestions, including how to develop a more cohesive action, while still maintaining individual advocacy.

 

Great convo, great ideas - where to start - the list of potential advocacy to-dos is endless as the list on my computer can attest.

If only we had the capacity...and funding to hire healthy people. But with limited capacity, we need to figure out how our efforts can get the most buck for the bang. Ideally a bang that is a catalyst for a paradigm shift.

We (Millions Missing Canada) have been burnt by media a couple of times - they cannot be counted on to report facts...I know, I know, that's what a reporter is supposed to do - but it was another sobering lesson for me about traditional media institutions learned the hard way. Alternative media hasn't answered our repeated outreaches. You'd think Vice would be all over the ME controversy, right?

We - the ME community - don't have the funds to buy media, we can't seem to get any accurate earned media, that leaves us with creating media. Unrest is the prime example. Fortunately, we are in the age of the internet.

Getting ME into medical school curriculum is a great idea - I chatted with the past President of The Royal College of Physicians and he basically said that a course would have to be developed and pitched to the various physician colleges - a big task further challenged by lack of Canadian (or any really) ME physicians / academics to develop the content.

Exerting both inside (collaborative with the govt) and outside (public squeaky wheel) pressure on the government is our approach. The stick and the carrot.

Personally, I understand and appreciate the incremental long game of changing the system, but I've got my eyes open for opportunities to leverage as a catalyst. Something provocative and compelling that will naturally garner public attention and action. Something that puts the Health Minister on the (shameful) spot in front of a lot of cameras and reporters for example.

A week ago the Health Minister gave about $70 million to BC for the opioid crisis. With the flick of her wrist she could do the same for the ME crisis. And that amount would still fall short of equitable research funding for ME.

 

An unfortunate reality

Pitched?

Indeed, and i wonder if @JenB is planning a sequel

Indeed, this makes me so angry, funding is so close yet so far. From their reactions you'd think we were asking them to fund the search for martian-unicorn hybrids...

 

Thanks ScottTriGuy for your comments.
Media is another hard nut to crack. Sometimes local media will accept an article. My local paper accepted an article about ME, and Unrest coming to PBS. Maybe this is a small route for some to take.

Best to take advantage of special events and combine these special events with info about ME, as we know. Next year is the 50th anniversary of the WHO designation of ME as a neurological disease. That lends itself well to some sort of PR program, event etc.

Medical education could possibly be done gradually via our own physicians, and maybe via contacts with medical colleges. For example, I sent Dr. David Systrom's info along with the IOM brief report, links to two CIHR statements on ME, and NIH and CDC info to my pulmonary specialist who teaches at a university. My specialist is a good guy, and has been interested in other info I've given him.

I wouldn't recommend doing this all the time, as some medics are not receptive at all. It is difficult to guess who will be receptive, and who won't, as I've learned.