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Prevalence of CFS in Canada.

*GG*

senior member
Messages
6,389
Location
Concord, NH
Although our community may consider that providing a high incidence figure gives our neglect some urgency, I think it is just as likely to create a credibility problem. I tend to believe the frequently-reported incidence of between 0.2 - 0.4 percent is more accurate, unless we include people with fatigue only, and not the immune, endocrine, neurological, orthostatic, and cardiac issues, for example, included in the stricter criteria.

So what number would this give you? Canada is about 35.5 Million people, right? Where are those percentages from? So it is 0.2 and not 0.02 percent? Same with the 0.4?

GG
 

Old Bones

Senior Member
Messages
808
So what number would this give you? Canada is about 35.5 Million people, right? Where are those percentages from? So it is 0.2 and not 0.02 percent? Same with the 0.4?
The first link, below, may be what I read that stuck in my mind regarding ME prevalence. Based on Canada's population, prevalence between 0.2 and 0.4 percent (rounded) would calculate to between 71,000 and 142,000 patients. Several articles I've stumbled upon have estimated Canadian ME patients at about 100,000, so this falls somewhere in the middle.

http://solvecfs.org/measuring-disease-burden-how-and-why/
"In the USA, there have been three large population based studies which estimated the prevalence of ME/CFS. The first of which was a study in Chicago, Illinois [1] which estimated a prevalence of 0.42%, the second was a study in Wichita, Kansas [2] which had an estimated prevalence of 0.24%, both studies utilised the 1994 Fukuda/CDC case definition for Chronic Fatigue Syndrome. A third study conducted in Georgia [3] had a much higher estimate of 2.54%, due to using the more inclusive CDC empirical criteria."

Here's another prevalence study:

http://www.ncbi.nlm.nih.gov/pubmed/23576883
"The pooled prevalence for self-reporting assessment was 3.28% (95% CI: 2.24-4.33) and 0.76% (95% CI: 0.23-1.29) for clinical assessment. High variability was observed among self-reported estimates, while clinically assessed estimates showed greater consistency."

The internet is full of ME/CFS prevalence studies, each one with different results. Until we have one or more proven bio-markers, there really isn't any way to know for sure.
 

Tom Kindlon

Senior Member
Messages
1,734

Kati

Patient in training
Messages
5,497
The thing about the statistics from Stats canada is that it provides a point of reference for us the patients to advocate for more funding and a federal strategy for research, clinical trial and treatment approval.

Are all these patients who said yes when asked if their dr diagnosed them with CFS have CCC-ME. Probably not. But as you all know the spectrum is wide from tired full time workers to tube fed bed ridden. All of these folks deserve to be figured out, you know?

It's a bit like asking patients whether they have arthritis. Some will say yes because their left knee have been killing them for 6 months. We all know that osteoarthritis is not rheumatoid arthritis. But the arthritis society advocates for all patients with 'arthritis' and uses the high numbers when lobbying the government for more research funding.
 

Justin30

Senior Member
Messages
1,065

The estimates first off result in people running around for multiple years trying to get diagnosed.

Second specialists are saying that many are not disgnosed.

3rd prevelance has been estimated between .002% to .01% of the overall population.

Dyautonomia or OI may account for one large subset.....based on symptom profile and virutually identical symptom overlapp.

Canada with half the people of Britain has much higher statisical prevalence. Could be misdiagnoses which I believe to be the case but also we have had the CCC Criteria available since 2011.

I am sorry but anything that has come out of Britain including the PACE trial and patient care has led to the world adopting dangerous treatment for ME/CFS patients. I personal feel they lied to the world.

Further. Dr Ramsays discussed ME in the 40 or 50's as a Neurological condition and yet despite the WHO classifying ME as a Neuro Condition. Ramsay from Britain identified named ME. Based on the severity of the diseases it was not studied thoroughly. Yet Simon Wessley and a large Cohort of Psychiatrists, Psychologists and others have had this illness treated as a psychsomatic illness. For many years prior to PACE from what I understand. This gives me more reason to distrust the statistical data from Britain make appear as a smaller problem than it really is. Please note I am not discounting the US for messing this up in the 80s either.

The Canadian Clinic in 1 Province has an 18 month wait list....if the amount of patients coming in per week from what I have been told is rediculous. This does not even include severely ill.

I am not saying Britain is horrible as I know people there are doing good things. Great things with the new biobank.

On the balance of scales I cannot agree with the figures coming out of Britain because of how ME had/has been treated there and the influence it has had on the globe...

I believe underepresenting by Britain highlights the the lack of urgenency and need for help...

I cannot forgive this....I cannot forgive what the US did and currently what Canada is doing which is virtually "nothing"....
 

PennyIA

Senior Member
Messages
728
Location
Iowa
It's impossible to use these figures with any sense of reality in my humble opinion.

1. The belief that it's vastly under-diagnosed either because so many doctors dismiss patient's concerns
2. patients themselves just giving up on seeking answers
3. It can take YEARS to get a diagnosis, meaning there;s a pool of people in that bucket
4. There are a so many terms/case definitions and who knows which one was used by any of the doctors (as they could pick from any that they've heard about that seemed realistic and not know about newer ones or choose to follow an older one because the newer one didn't fit as well
5. And some doctors who jump to this conclusion simply because they've given up looking for causes when it could be Lyme, Ebstein Barr, EDS, etc... a lot of which isn't easily diagnosed by just any doctor
 

Kati

Patient in training
Messages
5,497
It's impossible to use these figures with any sense of reality in my humble opinion.

1. The belief that it's vastly under-diagnosed either because so many doctors dismiss patient's concerns
2. patients themselves just giving up on seeking answers
3. It can take YEARS to get a diagnosis, meaning there;s a pool of people in that bucket
4. There are a so many terms/case definitions and who knows which one was used by any of the doctors (as they could pick from any that they've heard about that seemed realistic and not know about newer ones or choose to follow an older one because the newer one didn't fit as well
5. And some doctors who jump to this conclusion simply because they've given up looking for causes when it could be Lyme, Ebstein Barr, EDS, etc... a lot of which isn't easily diagnosed by just any doctor
Well, add to this the fact there is no biomarker, no medical specialty, no motivation to research and treat.

But still, the Community Health survey provide some value in providing numbers and also characterization pf patients reporting being diagnosed witht these diseases. Poverty. Low rate of employment. High prevalence of women. Unmet health care needs. Needing help with tasks. Patients with ME and FM often ranked worse than any other diseases as per National ME/FM Action Network.

On the downside, Canada did not react at all following these results. :(
 

Justin30

Senior Member
Messages
1,065
If I dont say this in this thread I am going to have to take it to the Grave....

ME in more cases than not is caused by a Viral, Bacteria or Parasitic.

Justin Trudeau has 411,000 Canadians in his own Country as per the stats that do not have "ONE APPROVED TREATMENT"

Further he is able to send $5 Mill for Zika when one over a Billion had been provided to it already by the US.....

Further he has sent $785 Mill for HIV, Malaria and TB....(though serious have effective treatments)

Canadian Healthcare is in worse shape than it has ever had been in larger cities....

- we lack beds
- nurses
- Drs
- Specialists
- Hospitals

Where is your plan Mr Trudeau....you cant help the people in your own country yet you are willing to give away Canadian Tax Payer Money away to other Countries.....

I am sorry if I offend anyone but his actions are not OK when we have millions of sick people recieving inadaquate care for diseases like ME and Autoimmune diseases that are beggining to plague society....
 

Justin30

Senior Member
Messages
1,065
Well, add to this the fact there is no biomarker, no medical specialty, no motivation to research and treat.

But still, the Community Health survey provide some value in providing numbers and also characterization pf patients reporting being diagnosed witht these diseases. Poverty. Low rate of employment. High prevalence of women. Unmet health care needs. Needing help with tasks. Patients with ME and FM often ranked worse than any other diseases as per National ME/FM Action Network.

On the downside, Canada did not react at all following these results. :(

Yeah its a joke really.....I am so angry right now....I wish I could take my vote back
 

Kati

Patient in training
Messages
5,497
If I dont say this in this thread I am going to have to take it to the Grave....

ME in more cases than not is caused by a Viral, Bacteria or Parasitic.

Justin Trudeau has 411,000 Canadians in his own Country as per the stats that do not have "ONE APPROVED TREATMENT"

Further he is able to send $5 Mill for Zika when one over a Billion had been provided to it already by the US.....

Further he has sent $785 Mill for HIV, Malaria and TB....(though serious have effective treatments)

Canadian Healthcare is in worse shape than it has ever had been in larger cities....

- we lack beds
- nurses
- Drs
- Specialists
- Hospitals

Where is your plan Mr Trudeau....you cant help the people in your own country yet you are willing to give away Canadian Tax Payer Money away to other Countries.....

I am sorry if I offend anyone but his actions are not OK when we have millions of sick people recieving inadaquate care for diseases like ME and Autoimmune diseases that are beggining to plague society....
What complicates things, @Justin30 is that health care is of provincial jursisdiction, not federal. So the provinces decide how they spend their health care money.

Federal jurisdiction is drug approval (health Canada), aboriginal health, vets, and public health matter (HIV, communicable diseases) Canadian government gives money to CIHR for research. It is unclear to me as how they decide who gets the money. The groups who have the power to lobby gets more money. We know HIV gets a whole lot, then cancer. A lot of the political decisions that are made so the government in power looks good. Giving money for HIV, Ebola and Zika makes them look good.

They have taken great interest in concussions in sport. Media coverage helping.
 
Last edited:

shannah

Senior Member
Messages
1,429
http://www.statcan.gc.ca/daily-quotidien/150617/t002b-eng.htm

Table 2
Canadians reporting a diagnosis of fibromyalgia, chronic fatigue syndrome, or multiple chemical sensitivities, by sex, household population aged 12 and older

View attachment 15681



http://www.statcan.gc.ca/daily-quotidien/150617/dq150617b-eng.htm

Looking back at the original chart that Tom posted and comparing the 2010 figures with the 2014 numbers, Fibro went up yet CFS and MCS went down over a four year period. Even if the figures are inaccurate, this makes no sense to me.

I wonder if the questions asked were worded differently.
 

Kati

Patient in training
Messages
5,497
Looking back at the original chart that Tom posted and comparing the 2010 figures with the 2014 numbers, Fibro went up yet CFS and MCS went down over a four year period. Even if the figures are inaccurate, this makes no sense to me.

I wonder if the questions asked were worded differently.
The case definition for fibro changed in 2010. They decided to drop the tender point examination.

Also the 2014 survey was more focused on mental health. It was a smaller survey than the 2010 which explored the chronic diseases.
 

Justin30

Senior Member
Messages
1,065
I also wanted to mention that in specific Canadian Cities.....there are major healthcare problems especially in major Cities and Municipalities due to population growth....

I have been there while Dr are openly stating the problems....

I Have expeirnced 1 year wait times for MRIs

3 to 12 month waits for specialists

Loss of 12 GPs in a city that has grown by 40 to 60k people and them not being replaced....

A lack of nurses, Drs and specialists that has been been publized

Many people because clinics are so full in major cities are going to the ER for routine things as they are unable to get a GP....

I have through telephone conversation had individuals that provide information and resources openly admit to the nursing shortage and in particular the shortage of Specialist all lost to the US.

So to get to my point...of course less people get DXed they have a fraction of the clinical care as the population grew....GPs disappeared as did specialists....

Of course less FM, MCS and probably ME/CFS has lowered.....

If you fo to hospital and general labs are fine...they will dismiss youas having a problem....

This is a failure of both provincial and federal healthcare in my eyes.....and is inexcusable
 

PennyIA

Senior Member
Messages
728
Location
Iowa
The case definition for fibro changed in 2010. They decided to drop the tender point examination.

Also the 2014 survey was more focused on mental health. It was a smaller survey than the 2010 which explored the chronic diseases.

Very interesting. I was pretty sure that seemed bogus from the get-go to me. FWIW - when I was having SEVERE tendonitis through my wrists, forarms, elbows... and not responding well to treatment and still working... but responded better after I stopped working (go figure)... I was in such pain all the time that I held my whole body very TENSELY... and tested positive for Fibro. But after I was off work for six weeks and not in agony? I tested negative for Fibro - based almost entirely on the tender points examination. I thought it seemed like it was a weak association to a condition at best.

ETA:
Can you link to what says they aren't using tender points any longer? The first five Fibro support sites (after filtering out the drug supported sites) I found still call it out?

ETA2:
Oh... wait I found it.... buried in the text at the bottom of two of the sites:

In 2010, the American College of Rheumatology published another set of guidelines for diagnosing fibromyalgia. These are preliminary guidelines and include a widespread pain index that assesses the number of painful body regions, and a scale that assesses the severity of symptoms such as fatigue, sleep problems, comprehension problems, and others.
Your doctor may use one or both of these assessment tools in diagnosing your condition.
Bolding is mine... so just like ME, there's a change and not a widespread communication of stop using the old rules...they are also falling into the nowhere land of inconsistent diagnosis. The only benefit they have over us is that they have a disease name that isn't detrimental, they have doctors who listen and treat and they have somewhat effective (if not perfect) treatment.
 
Last edited:

*GG*

senior member
Messages
6,389
Location
Concord, NH
Bolding is mine... so just like ME, there's a change and not a widespread communication of stop using the old rules...they are also falling into the nowhere land of inconsistent diagnosis. The only benefit they have over us is that they have a disease name that isn't detrimental, they have doctors who listen and treat and they have somewhat effective (if not perfect) treatment.

You are talking about Fibromyalgia, right? What effective treatment are you talking about?

GG
 

PennyIA

Senior Member
Messages
728
Location
Iowa
You are talking about Fibromyalgia, right? What effective treatment are you talking about?

GG
Yes Fibromyalgia, I believe some doctors at least believe that the prescriptions (lyrica, for example) and pain management process (which includes reducing effort, besides strong pain killers) is helpful.

I know in my own support group for chronic pain, all the fibro people are happy with their treatment even though it's not a cure, and it's not perfect. But their doctors don't just dismiss it if they come back indicating they need more pain management or they need to go on disability (unlike my own). Admittedly, it's a small population I'm exposed to... but they are on a treatment plan that the doctor works on ... it needs tweaking often, but over all, they are more active than they could be without the treatment plan (based on the opinions they've shared with me and my own witness of improvements after treatment started - though I wouldn't see any crashing results as they just won't come to support group during a crash). They've indicating that managing the pain has been crucial in helping reduce their brain fog. So, while they don't running in marathons they at least feel like they are getting the appropriate care.

I know they also pace (even if doctors are really happy to encourage more exercise for fibro).

But if you look at my list of treatments... well, the doctor supplied prescription is... ummm... Vitamin D and Potassium and a muscle relaxant. I'm not happy with how well my treatments manage my condition and would love to have something effective on the pain. I'd love to have a doctor that when I start talking about symptoms doesn't shrug and go, yeah... so?
 

perrier

Senior Member
Messages
1,254
The estimates first off result in people running around for multiple years trying to get diagnosed.

Second specialists are saying that many are not disgnosed.

3rd prevelance has been estimated between .002% to .01% of the overall population.

Dyautonomia or OI may account for one large subset.....based on symptom profile and virutually identical symptom overlapp.

Canada with half the people of Britain has much higher statisical prevalence. Could be misdiagnoses which I believe to be the case but also we have had the CCC Criteria available since 2011.

I am sorry but anything that has come out of Britain including the PACE trial and patient care has led to the world adopting dangerous treatment for ME/CFS patients. I personal feel they lied to the world.

Further. Dr Ramsays discussed ME in the 40 or 50's as a Neurological condition and yet despite the WHO classifying ME as a Neuro Condition. Ramsay from Britain identified named ME. Based on the severity of the diseases it was not studied thoroughly. Yet Simon Wessley and a large Cohort of Psychiatrists, Psychologists and others have had this illness treated as a psychsomatic illness. For many years prior to PACE from what I understand. This gives me more reason to distrust the statistical data from Britain make appear as a smaller problem than it really is. Please note I am not discounting the US for messing this up in the 80s either.

The Canadian Clinic in 1 Province has an 18 month wait list....if the amount of patients coming in per week from what I have been told is rediculous. This does not even include severely ill.

I am not saying Britain is horrible as I know people there are doing good things. Great things with the new biobank.

On the balance of scales I cannot agree with the figures coming out of Britain because of how ME had/has been treated there and the influence it has had on the globe...

I believe underepresenting by Britain highlights the the lack of urgenency and need for help...

I cannot forgive this....I cannot forgive what the US did and currently what Canada is doing which is virtually "nothing"....
Canada is the worst imaginable backwater. I'm Canadian.