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

I recently wrote the health minister of Canada (August 8), copying my provincial and federal MPs, as well as the provincial health minister of Quebec about our situation. I wrote and received a reply in French and don't have the energy to translate it in full along with my letter, but I attached the reply letter to this thread.

I framed the situation in trying to make them understand that they are effectively maintaining a policy of systemic discrimination by refusing to address the fact that we have no access to adequate health care appropriate to our condition, which is a protected right under the Canadian constitution.

The reply was the usual form non-response of "we're thinking about maybe doing something and waiting for something to happen".

Here is the key passage of the response, roughly translated:

"The Canadian government invests in ME/CFS research by way of the IHRC. Some studies funded by the IHRC focused on the link between genetic variation and severity of symptoms in patients diagnosed with ME/CFS, as well as on characterizing the best approach for readaptation. IHRC have also supported research aimed at finding new treatments targeting the causes of ME/CFS, as opposed to current treatments that only aim to reduce symptoms in patients.

By way of the Institute of Musculoskeletal Health and Arthritis (IMHA), the IHRC are determined to call on patients and their defenders in order to build relations between researchers and patient organisations. To this end, the leadership of the IMHA met with representatives of two important patient organizations in May 2018 in order to discuss the possibility of supporting ME/CFS researchers. Notably, the IHRC actively collaborate with the ME/FM action network as well as other partners to fill gaps in this domain of research.

The IHRC intend to intensify collaboration with the ME/CFS community in order to work more closely to identify research priorities. The IHRC will plan in the coming months a workshop bringing together patients and researchers as means of consultation. The workshop will help determine the future possibility of funding to be made available to admissible researchers in Canada. The IHRC recognize the importance of patient participation to the process of research and continue to make it a priority."
​

The only notable mention is the future possibility of a possible workshop that could think about making consultations some time in the future. Talk about commitment as firm as camembert. They speak of some unknown support of some research without actually being able to name it.

Can't say I'm disappointed or surprised, I expected nothing. No plan. No commitment. Systemic discrimination and indifference will continue to be the official policy of the Canadian government for the foreseeable future. And the $1.8M in funding at the IHRC for which the only proposal (I think by Alain Moreau) was rejected does not seem to be on track to be spent any time soon.

I specifically mentioned that this is a violation of the constitutional rights of half a million Canadians. The reply ignored this part entirely, the premise that we are discriminated in any way is rejected.

 

No surprise. We mean nothing to them.

 

She's a failure.

She could have acknowledged the zero research funding and committed to any amount - she could have acknowledged the institutional bias and harm and pledged to stop it - she could have acknowledged that Canada has the highest ME rates and announced a plan to address the crisis.

Instead she proudly defends the indefensible.

Ethical failure.

 

Here was the reply from one of the MPs I copied when I also emailed the Federal Health Minister in early August:


Dear Scott,

Thank you for taking the time to write to me about Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS).

The Government of Canada, through the Canadian Institutes of Health Research (CIHR), contributes to the research agenda for conditions with few, if any, evidence-informed treatments, such as ME /CFS and fibromyalgia (FM).

The CIHR's Institute of Musculoskeletal Health and Arthritis (CIHR-IMHA) has committed to supporting the creation of a national network for translational research in ME/CFS this fiscal year. This network will assist in capacity building and provide a forum to discuss ideas and share best practices. It will also provide the infrastructure needed to undertake therapeutic and diagnostic clinical studies in Canada. In addition, this network will set the stage for future international collaborations.

Since its earliest days, the CIHR-IMHA has engaged, and continues to engage, patients and patient advocates by way of a Knowledge Exchange Task Force (now known as the CIHR IMHA Research Ambassadors), which envisioned the development of a new and innovative approach to link researchers and key stakeholders, many of whom suffer from chronic disease.

Currently, CIHR-IMHA is also conducting a James Lind Alliance Adult Fibromyalgia Priority Setting Partnership. The goal of this partnership is to identify the unanswered questions about the management of adult fibromyalgia from patient, caregiver and clinical perspectives and then prioritize those questions that the participants agree to be the most important. Given the overlap in FM and ME/CFS symptomatology, this partnership may help us to better understand and manage ME/CFS.

More information about this initiative is available on the CIHR website: http://www.cihr-irsc.gc.ca/e/49106.html.<http://www.cihr-irsc.gc.ca/e/49106.html>?

It is our government's hope that health research will help to improve the lives of individuals living with ME/CFS and FM and those of their families.

Thank you again for writing to ask a question. I am proud to work for you, representing your concerns in Ottawa.

Yours sincerely,
John Aldag, MP


And this was my response to him:


Dear MP Aldag,

With all due respect, your form letter response to the ME crisis is at the least disappointing, but more accurately described as dismissive.

It is apparent you put no effort into understanding the ME situation, but are merely parroting Health Canada as your laughable reference to FM attests.

To be frank Mr Aldag, your reply is embarassingly ignorant given the gravity of the ME situation in Canada.

It is also insulting to the 580,000 Canadians living with ME. Over 100,000 too sick and disabled to leave their home or beds.

I look forward to a thoughtful response befitting someone of your position.

Better yet, call me at 416-xxx-xxxx.

Sincerely,
Scott


ETA: He has not yet called nor replied.

 

Thank you @rvallee and @ScottTriGuy both for taking the time to write these letters on our behalf.

It is discouraging but I think it is also to be expected.

As has been said on another thread (by Barry IIRC) it is a long distance run (paraphrasing) in that the relationship requires further continuing contact and pressure.

I really wish I could help with this but I just can't. But I would very much like to have my name signed along with yours in any further correspondence should that be OK. And perhaps we can take the time now to solicit names of people who would also be willing to sign come the time.

If had had the ability to do so I would consider researching what kind of research is presently ongoing at some of the major universities here and how some of that research might fit with findings so far in ME. (Not sure I'm being clear here) But other types of health research may be doing similar things (identifying genes, metabolomics, etc) maybe also working with specific universities to convince them that they can teach new recruits to do interesting, necessary and ground breaking research that could have multiple applications (while a very big endeavour) is something worth pursuing at the same time.

Apologies if this is a tangent.

And just as an aside, there doesn't seem to me to be as many Canadians online as would be expected and not that many that are still able enough to pursue this kind of thing. I would be willing to do whatever I could to inform, help, educate others so that the burden is shared more. I just don't know where to start.

 

@rvallee

We are preparing a response to the Health Minister.

May I use your quote, anonymously, with the preamble "As one Canadian with ME commented, Health Canada is "

"

 

Thanks @Snowdrop

I've tried to connect Moreau - twice - to a metabolism researcher at McMaster U that I had a chat with. He was quite interested in exploring but Moreau never followed up. You can lead a horse to water....

We will be posting a draft email response to Minister Petitpas Taylor on our Facebook page at Millions Missing Canada in the next day or two so folks can easily copy and paste and cc their MP:

https://www.facebook.com/MillionsMissingCanada/

 

I checked the link for the James Lind alliance thing and its protocol is dated in 2015 with no updates.

So death by committee, in addition to being only closely related in that we don't know if there is any link between the two conditions anyway.

In 2015 I wrote the health minister of Quebec and the reply mentioned only one actual accomplishment: a pamphlet produced in 2009.

Anyway, here's the reply I sent (roughly auto-translated because I'm tired):

"Hello,

Thank you for that reply. It is exciting to know that the Government of Canada is committed to perhaps, in an uncertain future, discuss possible intentions to think about establishing a working group with the mandate to decide on a hypothetical guideline regarding this crisis. Terry Fox would be in awe in the face of so much courage and determination.

This commitment, however, does not address the reality that nearly half a million Canadians are systematically denied the constitutional right to health care appropriate to their condition, in full knowledge of the federal government. To reiterate this point in my letter: the Canadian government is informed that our constitutional rights are thus violated and nevertheless chooses not to take any concrete action.

I note with disappointment that the Canadian government is determined to continue this policy of discrimination. At least your confirmation that this is the official position of the Canadian government will be significant in the class action lawsuits that will inevitably have to be taken to ensure that our constitutional rights, including yours, are indeed rights, not privileges reserved for those who have the good presence of mind to contract a respectable disease, freed from baseless prejudices.

The average cost of raising a Canadian taxpayer is in the range of $100-200K in public spending. The average age of incidence of ME is in the mid-twenties and 75% are unable to work, representing nearly 400K citizens for whom public funds have spent significant amounts and whose contribution to the tax base will be negative for their lifetime. If you are indifferent to our suffering, consider at least the billions you burn each year, an absurd tax policy.

Tell the Minister, if you will, that the moral cowardice of this position, despite mounting evidence of the magnitude and severity of this crisis, will long be a black mark for the government of the country presenting the highest rate of this terrible disease. The lack of leadership on this issue ensures the continued suffering of the victims of this disease and will indirectly contribute to many premature deaths.

If you will, look at Unrest, a documentary on ME that is available on Netflix. This disease is not well represented at all by its popular image."
​

For the curious, Terry Fox is a Canadian hero. He lost a leg to cancer at 18 and trekked across Canada (which is massive) to raise awareness for cancer. I was hesitant with being facetious but whatever.

 

Absolutely. You may use my name if it's better.

 

They don't care about rights until the court rules against them.
In another thread we had talked about a charter lawsuit for equitable research funding, which i don't think would win because its a fuzzy logic argument from a court point of view. But a creative interpretation may be in order, but how? And how would we pay for it?

Also they don't care so much about lost tax income but they would care about expenses. If billions were being spent in healthcare costs and disability payments that might mean slightly more then lost income. I still doubt this would be convincing because its not a direct pay money to save money, its pay for research that may lead nowhere or take unknown billions to get to somewhere.

Perhaps the question we need to figure out is why do they fund HIV or cancer or heart disease research and how can we get the same regard for ME.

 

Ah, I have been resisting facebook but have periodically been aware that I am missing things by doing so.
Will reevaluate if resisting FB is futile.

 

Not to de-rail the thread, but while we're piling on the betrayal of Health Canada...from what I understand, FM researcher Mary-Ann Fitzcharles did not adhere to the JLA protocol, especially the part about engaging patients, and throws FM patients under the adjudication bus:

"While FM is accepted as a valid condition, its diagnosis is vulnerable to misuse due to the subjectivity of symptoms....the prevalent societal concept of disablement due to FM must be tempered with the knowledge that working contributes to psychosocial wellbeing. Evidence provided in the present report may assist the courts in reaching decisions concerning FM."

I wonder how many FM patients have been denied disability coverage based on Fitzcharles publications?

However, Manfred Harth challenged Fitzcharles and says of her commentary:

"The authors of the commentary contend that: previously and currently used criteria for the diagnosis of FM are irrelevant to clinical practice; the opinions of family physicians should supersede those of experts; there is little evidence that trauma can cause FM; no formal instruments are necessary to assess disability; and many FM patients on or applying for disability are exaggerating or malingering, and tests of symptoms validity should be used to identify malingerers."

And Harth concludes: "Caution is advised in adopting simple solutions for disability adjudication in FM because they are generally incompatible with the inherently complex nature of the problem."

Perhaps the FM community has the basis for a class action.

 

Politicians respect power, not ethics. Wrong currency.

Today, when they attempt to be ethical they make things even worse, because they are shallow little people, who do not understand human nature, history, or even themselves.

 

i have a few comments to make, in random order.

1. I may be repeating myself or others who made the comment, but let’s turn to history. Other diseases like ours faced enormous stigma and neglect from the medical community for various reasons which includes sexism, discrimination against gay men, etc, and deeply ingrained thoughts that if there is no measurable (or visible) pathology, then it must be in your head. Multiple sclerosis, HIV and stomach ulcers come to mind. We must remind decision makers of these historical events, and we must show that hundreds of thousands of us in Canada keeps on getting sick and half diagnosed with a cul-de-sac disease.

2. I am sorry to say, but I will anyways. From the June Montreal meeting, we have witnessed the poverty in clinical care across our country. There are very few physicians ‘treating’ (generously worded)- but there is a humongous lack of leadership, and perhaps I have a sense that these so-called exeprts (they are not) may even be harmful in getting ME recognized in the mainstream medicine. For one each of the 3 existing programs are litterally underground, focused on CBT (even when they say it’s not) and gentle GET (to avoid deconditioning, they would say). At least 2 of these programs prohibit extensive testing which would be helpful in understanding the disease further and generate research questions. No test means doom. Group therapy means self-management, and sharing of concepts such as speep hygiene or central sensitization, which would lead to teaching about meditation and stuff that patients can easily learn from peers in a forum such as this one. But in the funder’s eye, having a program suh as the ones in NS, On and BC means they have done their job, they have provided ‘health care’.

3. Our health minister was given a ‘charge’ when nominated by Justin Trudeau, who actually directed Ms Petitpas-Taylor to focus her time and energy on mental health and home care, amongst others. ME is not part of her charge. There is no federal strategy, nor there is a sense of urgency. In fact they’d rather not focus on the problem, cheaper that way. And then, theother argument they will make is that health care is of provincial jurisdiction.

4. Not belonging to a medical home is a huge impediment in having our issues addressed and in getting research mobilized. And of course, no biomarkers is not helpful either, and not knowing which medical home it should be under. But still, even if down the road we needed a change of medical home, we would still be better off, having benefited of expertise and curiosity of a group of specialists who are keen to look at a particular problem.

5. It still remains that the most severely ill cannot access care. Hospital care is at best sketchy and bound to make us worse just by stepping into the hospital.

6. We are still not formally counted, we are not reported anywhere, no one is collecting blood or tissue sample, no one is following the course of the individual illness over time, and it doesn’t seem to bother anyone including the folks at Stats Canada. And of course the Canadian Community Health Surveys are simply estimate number from population samples, reported by patients. The lack of numbers is yet another impediment in getting disease recognition, funding, and competent care.

7. i cannot help but think that most of us are women and women’s issues are not taken seriously. This disease is normally not fatal. We simply disappear from society, and even from our doctors’ offices. Instead, patients turn to alternative medicine or resign to live like this forever, and we know that the alternative doctors do not do epidemiology or do not typically conduct research or publish in scientific journals. It is also safe to say we are too sick to fight back and most of us may not have full support in advocacy from family members or friends.

8. So how do we move forward?

 

Excellent points @Milo

Even better question.

 

Well, one thing most gov'ts don't like is bad press. If we could get some of those points into a national news article it would be a start toward the gov't thinking that maybe they should pay attention.

It would of course take a little more than one article but I'm pointing out were their weakness would be.

Also, if I had the energy and the brain power I would consider a multi pronged strategy where one part bypasses the gov't and tries to develop contacts within the research community getting people interested in the problem of aetiology and treatment. This would be getting new PhD's to go to conferences like IiME, working with researchers outside the country to have yearly conferences here in Canada. The conference with Alain Moreau seems problematic in that he seems to have zero interest in communicating with the ME community and appears to be off on his own doing his own thing. Developing relationships with health reporters too.

We need allies. We need good press. I agree about working to ensure the gov't knows their responsibility toward us but gov'ts change so frequently and even within that time frame as we've seen ministers can change portfolios. I think doing those other things creates a good foundation for dialogue with whatever gov't there is.

 

@Snowdrop

Completely concur.

The challenge is volunteer capacity to tackle the multiple prongs.

 

Yes, sadly this is a difficulty that doesn't have any clear way of approaching a solution.

I am wondering if the facebook group continues to grow in number or is this pretty stagnant? And is being on facebook as opposed to an independent website possibly a drawback. Apart from myself I have heard of only a few people who said they would not participate on a facebook site but there could be more.

Also, I'm aware of people who I've met in person who are doing their own thing with regard to advocacy without connecting to a larger group. Here in Ontario MEAO come to mind. I believe they were working toward getting a Centre of Excellence here but without any real communication from the larger ME community. And they had a small amount of funding through Trillium (I don't know if even that has dried up)

ME/FM Action network I find a fairly similar story. Stagnant. They look like they are trying to do the right thing but I don't really see much in the way of results. I also suspect that these groups might have been operating in a bit of a knowledge vacuum (until recently possibly)

Perhaps combining forces might add some needed energy into these orgs. Or alternatively, setting up as a new National Advocacy Organisation (this may already be effectively done as MM Canada) and expending energy for a membership drive, encouraging all people with ME to come forward and be counted. It would be great if we could fundraise through multiple Canadian ME organisations to fund an appropriate science candidate to go to the next IiME conference for example.

 

I would suggest we gather volunteers and form committees. So we could have
-health ministry
-human right committee
-CMA (Canadian Medical Association)
-women’s status./ equality
-disability insurance and CPP
-CIHR
-patient engagement/ patient-oriented research
-conference attendence and/or street visibility (banners?) campaigns and protest
-fundraising
-scientific ‘recruitment’
-stigma and discrimination

And so on. The sky is the limit. We each have so much we can give, we all know. But it each focus on one area of interest, we would already be better off. The idea of a committee is that many people share ideas and ressources/knowledge and we have better chances of making progress.

 

Who has the energy and cognitive ability to do these things. I would love to help in advocacy but i can't even properly take care of myself, my ability to donate my brain power or physical energy is negligible