ME, FM and National ME/FM Action Network recognized in Canadian House of Commons

"House of Commons recognizes ME/FM and the Network
In the House of Commons Thursday Dec 13, Member of Parliament Anita Vandenbeld made a very powerful statement recognizing the difficulties facing the ME/FM community in Canada.
You can watch her statement here:

Youtube: https://youtu.be/kyhA5qyu54M

Facebook:https://www.facebook.com/AnitaVandenbeldMP/videos/1032484150295348/

Twitter: https://twitter.com/anitavandenbeld/status/1073358059991457795

Feel free to contact Ms Vandenbeld and let her know how good it feels to be recognized! anita.vandenbeld@parl.gc.ca."

Margaret

Margaret Parlor
President
National ME/FM Action Network

 

'Liked' Anita Vandenbeld's FB post.

 

Re the large number quoted for ME, and/or FM in Canada - 800,000.

Statistics Canada does a survey called the Canadian Community Health Survey (CCHS), which includes ME, and/or CFS, and FM.

These numbers are derived from the CCHS.

Perhaps someone else can answer the question as to whether this is self-identified as having ME, and/or CFS, or FM, or participants have been medically diagnosed.

 

the survey asks people to report diagnoses made by a health professional.

http://mefmaction.com/docs/CCHS_Stats_2014.pdf

 

Thank you @WillowJ, for covering this. Of course, the above link will explain this....ME memory!

 

Those numbers are in the same range estimate as a workgroup by the Ontario (Canada's largest province) health ministry. It estimates at about 1M the total cases of ME, FM and MC(A)S. http://www.cfp.ca/content/64/6/413.

We're kind of lumped in but I'm not unhappy about this, whatever implementation ends up happening, this is a group of disease that will largely be managed by a dedicated specialty. I still think it's an autoimmune disease but even those are kind of scattered around.

Unfortunately Ontario elected ersatz Trump so this report will not amount to anything for a while, but it did get reported in the Canadian physicians' association journal. Unfortunately a few articles promoting the psychosomatic view were published around the same time and I think the view will still hold up for a while.

When I did my disability interview (by phone, fortunately), the interviewer started with "so you have fatigue?". I still got accepted, fortunately, but they don't know anything about the diagnosis yet. I recently had an appointment with a GP closer to home and my electronic record does not have a proper diagnosis, despite the fact that I am legally disabled.

Lots more work to be done but this is progress. I was asked to participate in the roundtable held 2 days ago in Montreal but could not attend. I would have loved to but it was the right call, that day was not a good one and I would have been useless. Tiny bits of progress add up to something eventually.

 

Thank you @rvallee for corroborating the numbers. I have seen this large number questioned before. However, since ME is so neglected in all countries, it stands to reason that pwME would not be accurately counted. All part of the dismissal theme. It seems that Canada may have one of the most accurate number surveys for pwME, if not the most accurate. I believe this is in part due to the work of the National ME/FM Action Network.

Older articles noted about 20,000 effected by "cfs'. All the while, according to Osler's Web, thousands of people per month were calling the US CDC, desperate for information on this disease.

To get more accurate stats we need a number of things, including correct medical education and the acceptance of one of our proper case definitions (CCC, MEICC).

I'm sorry you could not attend the Montreal meeting. You make many very important points on this forum. I know what you mean though about symptom flares. Just sitting upright for a while can make me feel quite lightheaded, uncoordinated, and weak (POTS).

Frustrating the different layers in this disease, and doubtless all others: progress at the national, and international level, but not in one's doctor's office.

At least the progress is adding up, as you say. Momentum seems to be building.

 

I'm really skeptical those numbers are accurate at all. I suspect it includes many people that have been told by their doctor they have "chronic fatigue" or "fatigue" from something or unexplained, and people are thinking that's the same as CFS on the survey.

Lumping CFS and fibromyalgia together also plays into the idea they aren't specific disease states, but rather vague symptoms resulting from a variety of causes, and therefore ought to be taken less seriously.

 

Not true in my case. I was diagnosed with FM by a Rheumatologist and then diagnosed with ME at Women's College Hospital in Toronto. Two separate diagnoses.

I don't really have issues with how this is dealt with here. I know others do. But FM/ME and MCAS are all illnesses for which little is known and there may be some overlap or similarities not just in symptoms but in how the body systems are failing and why. Just as I think Parkinson's, Alzheimer's, MS and other research could be useful to some extent for providing information/clues to ME I think grouping these together in an effort to gain legitimacy and funding is not a bad thing IMO.

 

If ME and FM are lumped together for numbers, I think it depends how they are portrayed - as in the past, as now, some say these are vague fatiguing syndromes, which is derogatory, and dismissive. If they are presented as two separate recognized diseases that lack biomedical research funding, medical education etc. that is different.

I have seen bits of comments about other diseases having similarities, that until recently were thought to have entirely separate causes. However, with the advent of knowledge about things like neuroinflammation now seem more similar. There is now info out about the potential of neuroinflammation in Alzheimer's due to infections (Dr. Robert Moir at Harvard).

I agree, we need to be sure about the numbers, and as I said earlier, we need more accurate stats which depends partly on medical education, and having an excellent case definition. Both things we do not have now. Where the doctors are well acquainted with ME and FM, we can be more assured of a correct diagnosis.

I can think of 2 people, one with a FM diagnosis who actually had RA, and another who had liver failure, who was diagnosed with "cfs". Eventually the "cfs"diagnosis was corrected, but it was too late for a transplant.

 

Yup and like trump not elected by a majority...

In my case the diagnosis was helpful but not in a concrete way, it was a container that explained things so i had to prove the severity. Whereas without it they said well how can you function a little but but not more, that means you can function hence not disabled (divide and conquer).

I'm sorry to hear you could not attend, will they be doing more roundtables in the future?

 

Egads, this needs to be remedied with a testing protocol developed. How were they finally diagnosed?

 

Even if separated they could still be portrayed that way.

 

Totally agree, @Snowdrop.

And, @Alvin, I don't know how they were finally diagnosed properly. I think perseverence from the individuals themselves, and family members in one of the cases.

I certainly puzzled about both the original incorrect diagnoses, but who am I? "Just another nut-bar patient."

 

@DokaGirl - I think @mariovitali would be interested in this story.

 

Thanks @ScottTriGuy.

 

It looks like this is a stepping stone and there are future plans. We seem to have a good ally in Dr Khan, even if we have little support from Health Canada or the Health ministries.

 

You are so correct with all your points. I am getting to the point now where I am trying to avoid the term CFS, chronic fatigue syndrome. A normal healthy person just thinks ME folks are 'tired.' One doctor said to our family member: you should see how tired I am! This was when we needed to go to emergency. So now, I'm just saying: myalgic encephalomyelitis, then I add, it's not studied in Canada at the moment, unfortunately.

 

Yes, I just use the term ME now. Gets a much more positive/caring response than the ridicule from using the term "cfs". Even a puzzled response re "ME" is obviously much better than retorts like "I'm tired too".

 

Chronic Fatigue SyndromeStatements By Members

December 13th, 2018 / 2:05 p.m.

Liberal


Anita Vandenbeld Ottawa West—Nepean, ON

M. Speaker, I rise today to shed light on a medical condition that affects over 800,000 Canadians. Myalgic encephalomyelitis, commonly referred to as “chronic fatigue syndrome” and fibromyalgia, or ME/FM, is a debilitating physical condition that can severely limit a person's ability to carry out ordinary daily activities. Unlike other conditions, those suffering very real physical symptoms, including incapacitating pain, are frequently stigmatized, told that it is in their head and denied basic supports that others with disabilities are entitled to. Poverty and social isolation often follow.

Global research on the causes, diagnostics and possible treatment of this condition are nearing potential breakthroughs, and yet there is no funding for research here in Canada.

I want to thank my constituent, Margaret Parlor, and the National ME/FM Action Network for their tireless advocacy in raising awareness of this issue.