The Canadian thread

[Kati]

I keep on wondering what action is taken at the Canadian level.

I think it would be great to dedicate a thread for Canadian patients who would like to do things in order to increase awareness, move advocacy to the next level, to increase research funding for ME, to encourage research within the scientific community.

From what I know the Canadian government is looking up to the CDC to see what their next move will be. We might wait a very long time if that is so.

What can patients do as individuals and together to move 'things' along, what should be our common goal, and would you be interested in joining such group?

Thanks, Kati

 

[sarah darwins]

After spending 12 years ill in Canada (until a year or so back) I would say it's much needed, Kati. Where I was, in Nova Scotia, it was as though ME/CFS simply didn't exist.

Whenever my (very well-meaning) GP did a bit of research on it, he always ended up trying to slip depression checklist questions into the next conversation, so I assume Health Canada resources for family doctors are/were all steering them towards psych stuff.

I was referred to two specialists (internal med. and endo.) who were worse than useless. They gave me some 'helpful' advice which I now realise was positively dangerous (can't sleep at 3am because of flu-like symptoms? Hey, get up and do some housework or go for a long walk — might as well use the time for something and it'll tire you out so you can get a good night's sleep" etc.). Neither had the slightest clue about the condition.

Based on my experience there, I would say that awareness raising for family doctors and getting out information packs/leaflets with solid advice on managing the condition would be a really good start. There are probably groups doing that kind of thing in Canada, but nothing was reaching my particular back end of the boonies.

A Google search on "me/cfs nova scotia" comes up with a link to the Canadian Federation of Students, which pretty much says it all.

 

[Kati]

After spending 12 years ill in Canada (until a year or so back) I would say it's much needed, Kati. Where I was, in Nova Scotia, it was as though ME/CFS simply didn't exist.

Whenever my (very well-meaning) GP did a bit of research on it, he always ended up trying to slip depression checklist questions into the next conversation, so I assume Health Canada resources for family doctors are/were all steering them towards psych stuff.

I was referred to two specialists (internal med. and endo.) who were worse than useless. They gave me some 'helpful' advice which I now realise was positively dangerous (can't sleep at 3am because of flu-like symptoms? Hey, get up and do some housework or go for a long walk — might as well use the time for something and it'll tire you out so you can get a good night's sleep" etc.). Neither had the slightest clue about the condition.

Based on my experience there, I would say that awareness raising for family doctors and getting out information packs/leaflets with solid advice on managing the condition would be a really good start. There are probably groups doing that kind of thing in Canada, but nothing was reaching my particular back end of the boonies.

A Google search on "me/cfs nova scotia" comes up with a link to the Canadian Federation of Students, which pretty much says it all.

Sending out CCC overviews to physicians have not been that much successful unfortunately.

 

[Snowdrop]

If, as you say, the Canadian government looks to the CDC for direction then that would suggest that lending an international (Canadian) voice to PWME trying to get the CDC to update and do the right thing might be a primary avenue of help.

As we all know health care is by province so the task is already a divided one from the start.
I don't know much about the ME change platform that Jen Brea has set up. To put it plainly I'm mostly just unable. I can't follow anything that is too long or very unfamiliar.

But could it be used to house petitions that could be signed?
From my own experience:
On the individual level (Dr by Dr) I just recently viewed a youtube video of Nancy Klimas in New Zealand on another thread here.
I mention it because it was excellent for systematically and thoroughly going through all the things Dr.s can do for their patients and why--as in explaining what ME is science wise and experience wise. I have my husband downloading the video to a thumb drive and he's making notes for the Dr so he has an outline of the video. I will also provide a CV of Nancy Klimas. My husband will give this to him on Monday (just luck he has an appointment then). I have a caring Dr who believes me that I'm sick but doesn't necessarily believe in ME. But only because he knows nothing about it and wouldn't know how to treat it. Unfortunately this has not helped me and I try not to visit as it causes me so much trouble. The education process is slow. It's helpful for new PWME who come looking for help to know that they might help guide their Dr but that any change will come slowly and although they feel desperate now they need to see the long view.

I add this because it may be how other PCP feel. They are in a system that works a certain way. They are penalised for not following the rules. If we can provide information that offers avenues to explore with legitimate science and treatments backing it up I think that might help some individual Dr.s regardless of province. Perhaps a package like that can be assembled for individual download. Or something even more thorough than the above.

As for political lobbying that's really out of my league. My husband does volunteer work for a political party and may have some idea if ME people have something they want to do in the regard. I am open to help but I am severely limited--for now.

I'm in Ontario so any suggestions of working with MEAO (ME Association Ontario) I would be happy to try and contact them. Other than that maybe joining National ME/FM action network and working with and through them. Increasing our numbers and aggregating them together seems to make sense to me.
SD

 

[Snookum96]

Hello Canadians,

I recently signed up for me action.net and the question was asked about Canadians wanting to get involved in advocacy. There are only two of us so far. We just started talking about it but here is the link to the thread.

http://www.meaction.net/idea/canadian-petition-for-funding-equality/

If anyone is interested you can sign up on the site and we can get started. I think we need more than a petition but it's a good place to start.

The Dutch used this site for a petition and ended up with 56,000 signatures.

Jodie

 

[Snowdrop]

I'm clueless about these things but if the petition is to MP's then shouldn't we wait for the fall election to pass?

And I know that health funding is by province but there must be money transfer involved from the Federal Gov't. so who best to direct the petition to? I can find out the answer. But I think I would hold off on the petition for now.

But it's a good idea going forward and I would be willing to participate and even try to find further support.

 

[Snookum96]

I agree about the election. I think it will take a long time to plan the target audience, what the actual request is etc. It should be specific so will take some time. Most of us can only do bits at a time when we are up to it so I think by the time we are ready the election will be over.

I think physician education is crucial too as you stated above.

 

[Snowdrop]

Well, count me in. I'll do what I can.
I guess that means signing up with MEAction.
Meanwhile, I will try and gain some insight into how this all works in terms of government spending.

 

[Snowdrop]

Also, one thing I would like to see is that the rules are changed for what Dr's may use to treat ME presently.
This is a provincial thing.

I think my Dr would try other treatments but he cannot because the system does not allow him.
This is important I think.

 

[Snookum96]

Good point.

Wait, you have a doctor that will treat you?

How did you find him?

 

[Snowdrop]

Yeah, I'm lucky my Dr is a nice guy who believes me when I say something.
I even saw him yesterday (big day for me--out doors seeing real people, on the streetcar watching the city go by lol).
He had watched the video my husband gave him a link to at his last appointment (the Nancy Klimas video on ME treatment)
he even listened to the Q&A which was more than I did. As a result I will have a Naltrexone Rx delivered to me on Monday.

I'm not sure that he'd be willing to pronounce me as having ME. He does have me diagnosed as Fibro and he knows I have many neurological issues. Which was actually the reason for my visit -- I'm booked to see a neuro and was getting nervous about having an EMG done -- the first EMG I went for was aborted due to me breaking down in tears from the pain -- pain I couldn't possibly be experiencing according to the technician.

So now I'm going to the premier epilepsy neuro centre at Western Hospital for testing. While we discussed this I wanted to renew my pain meds (tramadol) but Dr decided he would try me on LDN (you can't take tramadol at the same time).

Unfortunately my Dr doesn't take new patients. But the practice he's in was founded by a Dr who had a lot of AIDS patients back when many Dr's didn't want to treat them. And today that still holds that the Dr's in the practice have a lot of AIDS patients still.
I think this is what might make a difference in his mentality toward me.

Anyway, that's the short version of all of it.
Back to Advocacy in the next post.

 

[Snowdrop]

I asked my husband for some help understanding the setup with Canadian government funding.
I'm going to cheat and just copy and paste from the email he sent to me from across the room (there's no point in just telling me I'd just have to ask over and over as I tried to write it out).

So

Federal: you want additional funding for CIHR (Canadian Institutes for Health Research) to fund academic and clinical research into ME therapies. Lobby the Federal Minister of
Health, the Federal Minister of Industry, the Federal Minister of Finance and the Prime Minister, plus your own Members of Parliament (regardless of party). Nothing can be done until after the election and formation of the new government.

Federal transfers to the provinces are block grants without strings attached. Don't waste your time on these.

Provincial: the Provincial Minister of Health (some provinces divide this into health planning and health delivery, in which case you want health planning) controls what doctors can do. You want to lobby for specific therapies in response to a diagnosis of ME (e.g. "Prescribe X" as an option). This is how you get drugs onto the provincial formulary (if low dose naltrexone was on the formulary, pharmacists would stock low dose pills so a compounding pharmacy wasn't required).

In Ontario, visit http://www.ontario.ca and go to the relevant health site to find the minister's name, address, email, etc. It is different in each province so Google province + health. Also lobby your MPP (Ontario), MNA (Québec), MHA (Newfoundland & Labrador) or MLA (BC, Alberta, Saskatchewan, Manitoba, New Brunswick, Nova Scotia) and the provincial Premier and provincial Treasurer/Finance Minister.

Not sure how the territories work.

End cut and paste

As I said in another post; I'd like to see that ME gets recognised as a proper disease with possible treatments.
I think recognition of the disease might be Federal while treatment oversight is definitely provincial.
There may in fact be other Dr's who would be willing to treat patients if there was some standard of treatment available.
The fact is it is a least in part the system not the Dr that is the problem.

But funding for research is an excellent goal as well. that would be for after the election and to me anyway is secondary to the recognition and treatment goal.

 

[Snowdrop]

Kati mentioned in the first post that the Canadian government may look to the CDC for direction.
Perhaps we could convince Health Canada to look to the NIH and the IoM report for direction.

 

[Kati]

Hi sorry it might feel a bit disjointed but here are some thoughts.

1) We patients can do something before the elections.
When a political party phones and ask for support, you need to not hang up and talk about who you will vote for (a MP who will represent your needs at the House of Commons, then you tell them about the 411,000 of us in Canada and how the medical system has failed us. you tell them what you need them to do for you, fund biomedical research, not psychiatry into finding biomarkers and clinical trials. They need to help assigning a medical specialty to the disease. They need to be extremely clear that 411,466 patients in Canada have been left for dead and that something needs to be done.

2) In establishing a petition for after the elections, it needs to be clear that we are looking for biomedical research not psychiatry, not coping mechanism, not return to work strategy, not multi-disciplinary approach, not bio-psycho-social. We need biomedical funding aimed at biomarker discovery, drug clinical trial, pathophysiology of the disease.

3) Be very aware that the work of Dr Fitz Charles (sic) for fibromyalgia is aimed at reducing the medical care that patients receive and also biomedical research and also aim at reducing the capacity to get long term disability. Her approach is likely to come to our disease too. Her approach already made it all the way to Vancouver and at a spring presentation for Me and FM patients, the medical director of the clinic discussed childhood abuse and CBT needed for FM patients.

 

[Snowdrop]

I'm in sympathy with your point of view but I feel that talking to a political phone solicitation has problems.
The person on the other end is just some joe/jane who won't have a clue if you mention your request and won't remember what you said.
They'll just hear ME and maybe pass that along.
Second, I don't trust politicians. If someone tells me they absolutely will make it their mandate to do something if I vote for them I'd run in the other direction from them for the liar I think they are for saying that to get my vote.

As to your second point I think for all of us here that boimedical is a given but yeah that needs to be made clear to the people being petitioned for sure.

As to the Dr. I am sorry to even know about this. I have moments when I really can't deal with more of this crap.

 

[Kati]

We are finding out from Dr Lipkin (yesterday and before that) that US patients need to speak with their congress representant in order to get more NIH funding. NIH will not take money out of the HIV stash to increase ME funding. Congress has to approve more money.

The same applies here. We have to speak to our political representant. There are a few sympathetic ears out there. Carolyn Bennett is one (St Paul's, Toronto) (Liberal). There are others. we need to lobby the health minister who actually went to an event in May for a rare cancer affecting barely 1000 people in Canada.

As for speaking to the people who phone asking for support, when it happened to me a couple of weeks ago, the person who heard me said he would get the leader to phone me. And if they don't offer, you tell them you'd like them to phone or even visit. Personally I will vote for someone willing work for me.

 

[Snookum96]

I don't have the energy to get into this all right now but will try to look at everything over the next few days.

 

[Snookum96]

One note: when Dr. Hyde is back in Canada I'll ask him if anything has been done in the past and/or if he has any recommendations. He's been working with ME since 1984 so might have some suggestions.

 

[Snowdrop]

Did the party leader get back to you because that would be an interesting conversation.
Before an election pretty much everybody will make promises. With limited energy resources I'd rather focus on a goal that I believe will most likely net a result.

The problem is in identifying someone who really will stick it out and work for you.
I see C Bennett is a long time incumbent and therefore she doesn't need to make empty promises and may be someone to work with.

And a final opinion, it's been my understanding that breast cancer charities are awash in cash more than they know what to do with.
They have soooo many celebrity sponsors/spokespeople behind them. That's where I'd take the money from.
Not that I have anything against breast cancer being treated. It's just so high profile and flush with cash.

 

[FortStreetCowboy]

Finally got registered here and have been approved to post! LOL. Snookum, Snowdrop, et al., Let's decide where we want to continue this initial discussion. Here (Phoenix Rising), Health Rising, #MEAction, or our own web page. There are many options for free web pages but I've started to build one at
http://criticalfairshare.weebly.com (Fair Funding for Chronic Fatigue Syndrome and Fibromyalgia).

Once we decide on that we can start to build an agenda and define Goals and Objectives and the tasks necessary to achieve.

Post your preferences here for now and then "Tally Ho!"