The Province (Vancouver): Better treatment needed for 77,000 British Columbians with ME

[Milo]

Sue Khazaie: Better treatment needed for 77,000 British Columbians with ME

Link to article

Exerpt:

It is no surprise that Statistics Canada surveys have found that ME patients have the highest unmet health and social needs, lowest income and highest food insecurity of Canadian patients with chronic health conditions. Predictably, we score more poorly on quality of life surveys people with multiple sclerosis, renal failure, lung disease and some cancers. Suicide rates are above average.

Please click on the link and read, it is beautifully written. Give it traffic, share on social media.

 

[Ravn]

Can there really be 77,000?

I know nobody really knows how many of there are, what with all the different diagnostic criteria and all that, but 77,000 is surprising.

AFAIK British Columbia and New Zealand have a roughly similar population and in NZ it's estimated that there are 20,000 PwME. That's a huge discrepancy. What could explain such a massive difference? Or have I just got my figures wrong?

 

[Jonathan Edwards]

Can there really be 77,000?

I know nobody really knows how many of there are, what with all the different diagnostic criteria and all that, but 77,000 is surprising.

AFAIK British Columbia and New Zealand have a roughly similar population and in NZ it's estimated that there are 20,000 PwME. That's a huge discrepancy. What could explain such a massive difference? Or have I just got my figures wrong?

77,000 would be 1.75%. 10,000 is probably more realistic.

 

[DokaGirl]

Great article. It seems like the Canadian media treats ME as a no go zone - articles are hard to come by. It's super to see this coverage!

 

[Peter]

Official records and statistics says a population of 4,8 million (2017) so somewhere between 10’ and 15’ seems about right if diagnosed CC/ICC.

 

[ScottTriGuy]

fwiw, Canada also has the highest MS rates in the world.

Regardless of the accuracy of the ME data, the fact is that there is zero dollars in ME research funding and both the federal and provincial govts have failed Canadians with ME for decades.

I'm not sure if they still do it the last few years, but Health Canada used to give 'health reporters' about 30% of their income. That is a huge incentive not to report on where Health Canada fails the most: ME.

 

[Mij]

Exaggerating numbers based on telephone survey's is not helpful for us in that it sounds a bit hysterical? I am glad it's receiving attention though.

The ME 'specialist' I saw in 1992 only diagnosed 10% of his pts with ME.

 

[Milo]

The number of patients affected is derived from the Canadian Community Health survey of chronic diseases held by Stats Canada. Only one question is asked for chronic fatigue syndrome and it is: Have you been diagnosed by a medical doctor with ‘chronic fatigue syndrome’ and the choices are ‘yes’ or ‘no’.
While we do not know what criteria (if any) the diagnosing physicians used, we do know that this group of patients, according to the same survey, are predominantly women, are less likely to be employed, has the highest rate of unmet health care needs, and need help with tasks, just to name a few.

This number for Canada was 200,000 in 2001, and the last survey was 580,000, so almost tripled in about 18 years. If this was HIV, cancer, or Parkinson’s, massive amount of money would be injected to understand why. But ME, we get ‘meh’, nothing to see here.

 

[rvallee]

Exaggerating numbers based on telephone survey's is not helpful for us in that it sounds a bit hysterical? I am glad it's receiving attention though.

The ME 'specialist' I saw in 1992 only diagnosed 10% of his pts with ME.

The statistics come from StatsCan surveys, which is one of the most respected statistical office in the world. They have shown a steady increase over their last several surveys so this isn't an isolated anomaly.

It's entirely possible that it's inflated because the diagnostic is casually given as a means to get what physicians see as malingerers out of their office, but then it's just irresponsible to let those numbers remain unreliable because it speaks of a massive human rights disaster since the government acknowledges that the disability impact is comparable to MS.

As it is, those are the numbers we have. Governments can make them better but choose not to, hence those numbers have to be taken as is because the process that reveals them is trusted.

Canada has a constitutionally protected right to adequate and informed medical care. We do not have that. We have never had that. The government is knowingly choosing to ignore that a constitutionally protected right is systematically violated. They have the information and choose to do nothing, even if it leads to a more accurate, and significantly lower, rates they have an obligation to act that they refuse to follow.

Not every country enshrines this right. Canada will be a prime ground for massive class-action lawsuits in that regard.

 

[TigerLilea]

Great article. It seems like the Canadian media treats ME as a no go zone - articles are hard to come by. It's super to see this coverage!

While that is true, I'd rather see the occasional positive media coverage that we get here, rather than the obsessive 'blame the patient' media coverage that the UK is subjected to.

 

[Mij]

On the MillionsMissing Canada website they claim that "ME has increased 36.7% in one year", and calling ME an "epidemic", I'm sorry but this to me is hysterical language. I agree that GP's don't know what to do with patients that come in with "chronic fatigue". I'm pretty sure that many Canadians have undiagnosed POTS or some form of autonomic dysfunction that could be relieved with proper testing and medications.

 

[DokaGirl]

Thank you @Milo for posting this excellent article.


For references on the prevalence of ME (CFS) in Canada:


1) From the Public Health Agency of Canada (an arm of Health Canada) website:

https://www.canada.ca/en/public-hea...ique-syndrome-myaligic-encephalomyelitis.html


"Chronic Fatigue Syndrome (CFS), also known as Myalgic Encephalomyelitis (ME), is a debilitating and potentially disabling illnessFootnote1-7 that affects over half a million Canadians Footnote* .Footnote8 CFS/ME is not yet fully understood, but it is known to affect multiple systems of the body. Footnote1-7" (emphasis added)





Also from the Public Health Agency of Canada website:

2) https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4939456/

Chronic fatigue syndrome and fibromyalgia in Canada: prevalence and associations with six health status indicators
C. Rusu, MD,(1) M. E. Gee, MSc,(1) C. Lagacé, MSc,(1) and M. Parlor, LLB(2)
Author information Copyright and License information Disclaimer

This article has been cited by other articles in PMC.

Go to:
Abstract
Introduction:
Few studies have considered the factors independently associated with chronic fatigue syndrome (CFS) and/or fibromyalgia (FM) or considered the impact of these conditions on health status using population-based data.

Methods:
We used data from the nationally representative 2010 Canadian Community Health Survey (n = 59 101) to describe self-reported health professional-diagnosed CFS and/or FM, and their associations with 6 health status indicators.

Results:
In 2010, diagnosed CFS and FM are reported by 1.4% (95% confidence interval [CI]: 1.3%–1.6%) and 1.5% (1.4%–1.7%), respectively, of the Canadian household population aged 12 years and over, with comorbid CFS and FM affecting 0.3% (0.3%–0.4%) of that population. Prevalent CFS and/or FM were more common among women, adults aged 40 years and over, those with lowest income, and those with certain risk factors for chronic disease (i.e. obesity, physical inactivity and smoking). After controlling for differences between the groups, people with CFS and/or FM reported poorer health status than those with neither condition on 5 indicators of health status, but not on the measure of fair/poor mental health. Having both CFS and FM and having multiple comorbid conditions was associated with poorer health status. (emphasis added)




3) From Statistics Canada:

https://www150.statcan.gc.ca/n1/daily-quotidien/150617/t002b-eng.htm:


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

From this table: 2010 total for CFS was 411,562 or 1.4% prevalence

2014 total for CFS was 407,789 or 1.4% prevalence




4) CTV News item about 2015 Canadian Community Health Survey result: 560,000 responded they had a physician diagnosis of either CFS or ME, amounting to a 36.7% increase since 2014:

https://www.ctvnews.ca/mobile/healt...a-even-worse-than-we-thought-survey-1.3539595


There is some speculation the February 2015 IOM report influenced awareness, and hence diagnoses.

 

[DokaGirl]

On the MillionsMissing Canada website they claim that "ME has increased 36.7% in one year", and calling ME an "epidemic", I'm sorry but this to me is hysterical language. I agree that GP's don't know what to do with patients that come in with "chronic fatigue". I'm pretty sure that many Canadians have undiagnosed POTS or some form of autonomic dysfunction that could be relieved with proper testing and medications.

@Mij, @Ravn, @Jonathan Edwards and @Peter please see post above re Canadian government stats for ME. As well, please see next post re US numbers.

While that is true, I'd rather see the occasional positive media coverage that we get here, rather than the obsessive 'blame the patient' media coverage that the UK is subjected to.

@TigerLilea Good point - some of the coverage in the UK is very damaging. @ScottTriGuy said Health Canada (HC) was and maybe still is paying health writers - so anything that goes against HC is difficult to get coverage for.

 

[DokaGirl]

A study that includes estimating prevalence in the US using "claims from commercially insured patients": "857/100,000 =2.8 million in the US"


https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6331450/#!po=0.359712

Front Pediatr. 2018; 6: 412.
Published online 2019 Jan 8. doi: 10.3389/fped.2018.00412
PMCID: PMC6331450
PMID: 30671425
Estimating Prevalence, Demographics, and Costs of ME/CFS Using Large Scale Medical Claims Data and Machine Learning
Ashley R. Valdez,1 Elizabeth E. Hancock,1 Seyi Adebayo,1 David J. Kiernicki,1 Daniel Proskauer,2John R. Attewell,3 Lucinda Bateman,4 Alfred DeMaria, Jr.,5 Charles W. Lapp,6 Peter C. Rowe,7 andCharmian Proskauer8,*
Author information Article notes Copyright and License information Disclaimer
This article has been cited by other articles in PMC.

Associated Data
Supplementary Materials
Go to:

Abstract
Techniques of data mining and machine learning were applied to a large database of medical and facility claims from commercially insured patients to determine the prevalence, gender demographics, and costs for individuals with provider-assigned diagnosis codes for myalgic encephalomyelitis (ME) or chronic fatigue syndrome (CFS). The frequency of diagnosis was 519–1,038/100,000 with the relative risk of females being diagnosed with ME or CFS compared to males 1.238 and 1.178, respectively. While the percentage of women diagnosed with ME/CFS is higher than the percentage of men, ME/CFS is not a “women's disease.” Thirty-five to forty percent of diagnosed patients are men. Extrapolating from this frequency of diagnosis and based on the estimated 2017 population of the United States, a rough estimate for the number of patients who may be diagnosed with ME or CFS in the U.S. is 1.7 million to 3.38 million. Patients diagnosed with CFS appear to represent a more heterogeneous group than those diagnosed with ME. A machine learning model based on characteristics of individuals diagnosed with ME was developed and applied, resulting in a predicted prevalence of 857/100,000 (p > 0.01), or roughly 2.8 million in the U.S. Average annual costs for individuals with a diagnosis of ME or CFS were compared with those for lupus (all categories) and multiple sclerosis (MS), and found to be 50% higher for ME and CFS than for lupus or MS, and three to four times higher than for the general insured population. A separate aspect of the study attempted to determine if a diagnosis of ME or CFS could be predicted based on symptom codes in the insurance claims records. Due to the absence of specific codes for some core symptoms, we were unable to validate that the information in insurance claims records is sufficient to identify diagnosed patients or suggest that a diagnosis of ME or CFS should be considered based solely on looking for presence of those symptoms. These results show that a prevalence rate of 857/100,000 for ME/CFS is not unreasonable; therefore, it is not a rare disease, but in fact a relatively common one.
(emphasis added)

 

[Alvin]

Perhaps this is what we need to do, flood the airwaves with articles, stories, op eds and as much media as we can come up with.

 

[DokaGirl]

BC's latest population stat, October 1, 2018:

https://www150.statcan.gc.ca/n1/daily-quotidien/181220/dq181220c-eng.htm

The population grows everywhere except Newfoundland and Labrador, Yukon and the Northwest Territories
The population grew in nine provinces and one territory in the third quarter of 2018, and declined in Newfoundland and Labrador (-0.1%), Yukon (-0.4%) and the Northwest Territories (-0.2%). Prince Edward Island (+1.0%), Nunavut (+0.7%) and Ontario (+0.6%) had population growth rates above the national level (+0.5%).

The population of British Columbia passed the five-million mark in the third quarter, estimated at 5,016,322 on October 1, 2018.

International migratory increase was the main driver of population growth in every province that posted a population gain.

Nova Scotia, Ontario and Alberta saw gains in their interprovincial migration (movements from one province or territory to another involving a change in the usual place of residence). Ontario had the strongest interprovincial migratory gains (+7,637), followed by Alberta (+3,222) and Nova Scotia (+700). In contrast, British Columbia saw interprovincial migratory losses (-1,217) in the third quarter, following 21 consecutive quarters of gains.


If we use the prevalence formula from the Valdez/Frontiers in Pediatrics article noted in an earlier post, which is 857/100,000 with ME/CFS we get 42,990 pwME in BC.

The Valdez article only used data from commercially insured patients.

In 2017, 8.8 percent, or 28.5 million people in the US did not have health care: https://www.census.gov/library/publications/2018/demo/p60-264.html

There is the potential for pwME without health care to not have their ME counted at all.

Which could mean the prevalence rate of 857/100,000 is a conservative estimate.

I agree with those who have said ME or CFS is a garbage can diagnosis, and may be assigned to fill in the blanks per say.

As well, what case definitions are being used?

Nonetheless, it appears we have a very significant number of pwME - who are going untreated, and mistreated.

 

[Sly Saint]

Complex Chronic Diseases Program (CCDP)
We provide care for patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, Fibromyalgia and symptoms attributed to Chronic Lyme Disease.

The Complex Chronic Diseases Program is excited to announce that we are developing a new model of care to better support our clients. We are changing our current model to increase client accessibility through telehealth, build connections amongst clients, and reduce wait times between appointments. The new model of care will broaden our ability to support clients after they participate in our program and provide resources while they are on the waitlist.

Our new program will focus on offering group based education and self-management support, while continuing to offer 1:1 medical visits. This group education format is supported by client feedback and research. The new model of care will roll out in early 2019. As we develop this new model we will continue to see clients, and will communicate with our current clients about how this change may impact their journey with us. Please check back to the website for updates on our progress.

The Complex Chronic Diseases Program is for people who suffer from the following complex chronic diseases:

• Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
• Fibromyalgia Syndrome
• Symptoms Attributed to Chronic Lyme Disease

from FAQ pages:
Is the treatment model CBT?

We are committed to providing holistic and comprehensive treatment models that provide care and treatment for the impacts of these illnesses. This includes medical interventions, acupuncture, holistic treatments, counselling and behaviour modification interventions where appropriate. Cognitive Behavioural Therapy may be one of the treatments utilized, along with many others. Cognitive Behavioural Therapy has been proven as an effective tool in helping people cope with their chronic illness.

http://www.bcwomens.ca/our-services/specialized-services/complex-chronic-diseases-program

 

[Jonathan Edwards]

I assume that the new program coincides with Luis Nacul being appointed. My understanding is that Luis has a view of management broadly in line with most people on the forum but does consider CBT, of the standard, rather than ME kind, potentially helpful for coping. I guess that any statements put out may involve some compromise between old and new.

It would be interesting to know more about how things are going in BC.

 

[TigerLilea]

I assume that the new program coincides with Luis Nacul being appointed. My understanding is that Luis has a view of management broadly in line with most people on the forum but does consider CBT, of the standard, rather than ME kind, potentially helpful for coping. I guess that any statements put out may involve some compromise between old and new.

It would be interesting to know more about how things are going in BC.

This clinic was initially set up by Dr. Alison Bested who specializes in ME. Her vision was for this to become a research center, get involved with teaching the medical students attending the University of British Columbia, and to provide detailed medical appointments and testing for ME patients. She left after a year because it turned out this wasn't the BC government's vision for the center. They wanted quick 10 minute appointments per patient, not 90 minute appointments. They also wanted Dr. Bested seeing patients five days per week which meant that she could not do the research and teaching that she had envisioned.

My doctor went to one of the presentations for GPs and from what she told me about the programme, it was basically group therapy, change your diet, and take some vitamins. I didn't waste my time getting on the waiting list.

 

[Jonathan Edwards]

This clinic was initially set up by Dr. Alison Bested who specializes in ME.

Was that before Dr Nacul was appointed - or are these different units?