Canada: Meeting with Policy Advisor, Ministry of Health

TiredSam

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Splendid work :thumbsup:.

Great that you included information on good research and the harms of inappropriate treatment. They need to be spoon-fed this stuff.

The German ME association (Fatigatio) got an MP to visit a self-help group a few years ago, explained all the issues to him, and were hopeful that it would lead to something. He ended up asking the Robert Koch Institute to produce a report, which was diabolical - they just "reviewed" the current international literature, the end result of which was an uncritical translation of the recommendations of the PACE report. This was in 2016, and reported on at PR. A huge disappointment after our hopes had been raised by contact with an MP who took us seriously and promised to "do what he could". I say "our" because it was my self-help group (but before my time) and I know some of the people involved. You have to watch these buggers all the way - just sayin'.

I wish they would stop calling us ‘ME patients’, it implies we receive medical care
Please tell me you pinched that from one of my posts - I'll be so proud to have been quoted :smug:
 

BurnA

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As a next step, Dr. Rancir asked us to provide an outline of what is expected of the Ministry of Health to make progress on biomedical ME research.
Its great that you get to follow this up.

BTW a great idea to give the medal. Cant have been easy to part with something that meant so much to you but it will leave a big impression on Dr Kancir I am sure. Its little things like this that can make a big difference.
 

BurnA

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He ended up asking the Robert Koch Institute to produce a report, which was diabolical - they just "reviewed" the current international literature, the end result of which was an uncritical translation of the recommendations of the PACE report.
OT: Should we be sending The Robert Koch institute a copy of David Tullers work?
 

TiredSam

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OT: Should we be sending The Robert Koch institute a copy of David Tullers work?
That's an idea - but it assumes that there might be someone at the Robert Koch Institute who actually gives a toss. To be honest I'm not sure if the best approach would be to just ignore them. The report was so appalling - it looks like they just got an intern to google "CFS" and translate what they came up with. Although it was discussed at my last meeting, the report hasn't been referred to on the Fatigatio website. May be best not to engage with them or give their "report" any publicity.

But it's an idea. I'll consider it.
 

Kati

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Yes, I definitely will speak about these important things -- it's what I did with my previous MP for the 2013 breakfast...



... however, as @ScottTriGuy mentioned above, what, specifically, can an MP can do about the jurisdictional issues (e.g. are we talking a bill presented to parliament)?

I'm wondering what specific action an MP, representing constituents who have ME like us, can take, at least re: CIHR? A PR member recently (so sorry, can't recall who) discussed how the US works differently from other countries (i.e., if I understood correctly, they were saying in the US, speaking to a congress member can result in action by NIH).

So, the question is: do our Canadian MP's have the same power with CIHR? (Canadian Institute for Health Research) If not power per se, what can an MP specifically do on our behalf?

(add: if the MP's attend the breakfast, I assume the National ME/FM Action Network will tell them what they are being asked to do! :)I'm just wondering if we can emphasize the message when we contact our MP's to invite them.)
Great questions. I am not sure I have the answers, but here is my 2 cents of wisdom.

We need to ask for a national research strategy. Early next month, Lyme groups are meeting in Ottawa, following the law that passed last year legislating a stakeholder working group. Patients have been invited and there has been even travel financial assistance offered. This would be equivalent to the NIH State of knowledge from a few years ago. This would be greatly beneficial to our patient community.

i am not sure what a law would look like. But take a look at what Health Canada is supporting: HIV research. Concussion research. Aboriginal health. The 5 millions a few years back on CCSVI for MS. Take a look at mental health.

Another aspect to look at is the gender issue as it relates to our illness, and discrimintion in health care that we face. Mentioning you have ME often time results in getting delays or no care at all because of the stigma. How about the stigma in science?

Canada is not contributing to international research. There were 2 CIHR representants attending the IACFSME 2 years ago and what happened? Nothing happened.

Leaving it to the provinces to decide how they will spend the health care money is the equivalent of 10 chances to stigmatize us and leave us behind. Since we are low utilizators of hospitals, of surgeries wait list, since we are not a reportable diseases and since our disease is not on death certificate, since he disease does not belong to any medical specialty, we do not make the statistics at all, the kind of statistics that count in order to get us health care. Doctors do not advocate for us to get better health care the same way that HIV doctors would speak up. There is no leadership. There is very little research and who knows where that will lead us?

This results in abysmal funding and patients being left behind. It results in no access to care and physicians that have no clue and most of them do not have time for such complex problems. No access to specialized testing because the government does not approve those. There are barreers to care on so many different levels.

We need a national strategy and we need patient involvementat al levels of decision making. We need a structure for patients to have a voice.

Anyways, my 2 cents.

Kati
 
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Kati

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Supplemental information about Lyme Disease bill C-442 and the conference in a month time:



Elizabeth May, O.C., M.P.
Information about the Federal Framework on Lyme Disease Conference
April 14, 2016
Dear friends,

I want to provide some information about the upcoming Federal Framework on Lyme Disease Conference. This national conference, mandated by my private member's bill C-442, will bring together ministers, members of the medical community, and patients’ groups to develop a new federal framework for the prevention, diagnosis and treatment of Lyme Disease in Canada.

The Federal Framework on Lyme Disease Conference will take place from May 15-17, 2016 in Ottawa. On May 15, a public forum will be held, during which Canadians can share their personal experiences with Lyme disease.

The details are as follows:

Event: Federal Framework on Lyme Disease Conference

Where: Government Conference Centre, 111 Sussex Drive, Ottawa

When: May 15-17 -- public forum will be held May 15 from 7:00-9:30 PM

Register: Complete this form and email it to LymeDiseaseConference-ConferenceMaladieLyme@phac-aspc.gc.ca

Website: canada.ca/lymedisease

Contact: LymeDiseaseConference-ConferenceMaladieLyme@phac-aspc.gc.ca

Advance registration is recommended as seating is limited. However, on-site registration will be available.

For more information about the conference, you can visit canada.ca/lymedisease. To register to participate in the conference and public forum, you can fill out this form and email the completed form to the Conference Secretariat.

If you have any questions about the Lyme Disease Conference, you can also contact the organizers by e-mail.

Thank so much for your continued support.

Sincerely,

Elizabeth May, O.C., M.P.
Member of Parliament for Saanich-Gulf Islands
Leader of the Green Party

You have received this correspondence due to your email to Elizabeth May, MP. We hope our outreach resonates with you. However, if preferred, you can opt out of all mailings.

Mailing Address
518 Confederation Building
House of Commons
Ottawa, ON K1A0A6
Canada
 
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Hi Scott,
Hope you are recovering O.K. My two daughters wrote to The Minister with the family perspective. We sometimes forget our loved ones see not only our illness, but also feel the pain of health care neglect, delayed diagnosis of other treatable co-illnesses due to disbelief and minimizing. Long wait times of a year or more for some specialists, only to be greeted by an 'ME unfriendly" "somatoform" believing doctor. Time and time again hopes get crushed.
Will you be setting up a spot somewhere where pwME can send their ideas for unmet healthcare needs for your report to the Minister.

Here are a couple unmet healthcare needs:

1. Accessibility
I would like to get accessibility to Primary Care and Specialists sorted out across Canada, whereby if the physical exam is not required then proceed with appointment via home phone or Telehealth for pwME. Moderate/severe pwME experience flareups and relapses from travel vibrations, pain, sensory overload, orthostatic intollerance, lighting at the clinic, temperature, noise, fatigue and stress from the appointment. At home we can recline, and control our environment. We do not spend a week or more getting over an out of the house appt. Some needs of pwME are unique. For the doctors that refuse to accomodate, shall supply a written explanation why.

2. Extra Pay for doctors treating pwME/CFS
Also, Doctors handling complex cases should be paid more for the extra time. I don't think the GP for Me Program pays enough in BC.

Thanks to Scott the dialogue window has opened lets make the most of it.
 

Kati

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Hi Scott,
Hope you are recovering O.K. My two daughters wrote to The Minister with the family perspective. We sometimes forget our loved ones see not only our illness, but also feel the pain of health care neglect, delayed diagnosis of other treatable co-illnesses due to disbelief and minimizing. Long wait times of a year or more for some specialists, only to be greeted by an 'ME unfriendly" "somatoform" believing doctor. Time and time again hopes get crushed.
Will you be setting up a spot somewhere where pwME can send their ideas for unmet healthcare needs for your report to the Minister.

Here are a couple unmet healthcare needs:

1. Accessibility
I would like to get accessibility to Primary Care and Specialists sorted out across Canada, whereby if the physical exam is not required then proceed with appointment via home phone or Telehealth for pwME. Moderate/severe pwME experience flareups and relapses from travel vibrations, pain, sensory overload, orthostatic intollerance, lighting at the clinic, temperature, noise, fatigue and stress from the appointment. At home we can recline, and control our environment. We do not spend a week or more getting over an out of the house appt. Some needs of pwME are unique. For the doctors that refuse to accomodate, shall supply a written explanation why.

2. Extra Pay for doctors treating pwME/CFS
Also, Doctors handling complex cases should be paid more for the extra time. I don't think the GP for Me Program pays enough in BC.

Thanks to Scott the dialogue window has opened lets make the most of it.
Welcome to the forum, @Sharon Van Isle. I appreciate your comments as I am in BC as well. I think it is fair to say that the health care needs for our patient population are vastly unmet, even with a 2 million provincial program in BC which seemingly gets 5 stars reviews from the website but many thumbs down from the patients. We deserve so much more than group therapy and abysmal testing for lifelong devastating diseases.

Please feel free to contact me privately to talk about this further.

Sending best wishes
 

ScottTriGuy

Stop the harm. Start the research and treatment.
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Hi Scott,
Hope you are recovering O.K. My two daughters wrote to The Minister with the family perspective. We sometimes forget our loved ones see not only our illness, but also feel the pain of health care neglect, delayed diagnosis of other treatable co-illnesses due to disbelief and minimizing. Long wait times of a year or more for some specialists, only to be greeted by an 'ME unfriendly" "somatoform" believing doctor. Time and time again hopes get crushed.
Will you be setting up a spot somewhere where pwME can send their ideas for unmet healthcare needs for your report to the Minister.

Here are a couple unmet healthcare needs:

1. Accessibility
I would like to get accessibility to Primary Care and Specialists sorted out across Canada, whereby if the physical exam is not required then proceed with appointment via home phone or Telehealth for pwME. Moderate/severe pwME experience flareups and relapses from travel vibrations, pain, sensory overload, orthostatic intollerance, lighting at the clinic, temperature, noise, fatigue and stress from the appointment. At home we can recline, and control our environment. We do not spend a week or more getting over an out of the house appt. Some needs of pwME are unique. For the doctors that refuse to accomodate, shall supply a written explanation why.

2. Extra Pay for doctors treating pwME/CFS
Also, Doctors handling complex cases should be paid more for the extra time. I don't think the GP for Me Program pays enough in BC.

Thanks to Scott the dialogue window has opened lets make the most of it.

Thanks Sharon, those are very relevant issues you've pointed out, and excellent potential remedies.

As Kati contends, we need Federal leadership to implement a National ME Strategy that encompasses research and treatment.

Sick and dying Canadian ME patients and their families should not also be burdened with the responsibility of changing the research institutions or physician group institutions. Patients have been trying for decades, and the institutions have failed to collaborate with patients and failed to self-correct in spite of the evidence.
 

ScottTriGuy

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Really good to hear this meeting took place. This is my first comment here. I'm from BC and have been watching the forum for a while but to ill this last year to comment or participate much. Big thanks to @ScottTriGuy, @Kati, @Old Bones and any others contributing. Well done!
Glad you added your voice.

Its important for others to remember that the severely ill are too often too ill to participate as much as they'd like. This disease can be so isolating physically, socially and emotionally - and perhaps unique to ME, medically isolating.

As Kati referred to earlier, it took a new Law to be enacted to force the Canadian govt to address Lyme and develop a Federal Framework for Lyme research and treatment.

Perhaps we with ME should explore that route.
 

Kati

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Glad you added your voice.

Its important for others to remember that the severely ill are too often too ill to participate as much as they'd like. This disease can be so isolating physically, socially and emotionally - and perhaps unique to ME, medically isolating.

As Kati referred to earlier, it took a new Law to be enacted to force the Canadian govt to address Lyme and develop a Federal Framework for Lyme research and treatment.

Perhaps we with ME should explore that route.
@ScottTriGuy it might be the only way to go. We will see how it serves the Lyme community, but it sounds like the incoming meeting in May will allow patients to speak up and give testimony, like at CFSAC in the US for ME. On the scientific side I am not too sure how things will go, since the division between infectious disease drs and patients/Lyme group is so wide.

(This does not mean that we should take a wait and see approach, we have been waiting for too long)