The Prevalence of Pediatric Myalgic Encephalomyelitis/Chronic Fatigue Syndrome in a Community-Based Sample (2020) Jason et al.

Healio - Primary Care: Most kids, teens with chronic fatigue syndrome are undiagnosed

 

article in spanish on the study: quotes Esther Crawley

https://cambiodigital.com.mx/mosno.php?nota=433197
https://translate.google.com/translate?hl=en&sl=es&u=https://cambiodigital.com.mx/mosno.php?nota=433197&prev=search

 

Thank you Andy! I am not sure I that I will be able to understand it - but it is good that there is an explanation.

 

A simpler version (not in the paper):
295/10,000 = 3% of youths screened were possible cases of ME/CFS
42/165* = 25% of possible cases were diagnosed as actual cases
3% possible cases X 25% are true cases = 0.75% prevalence

*Not all of the possible cases went to the clinical assessment

 

Honest question -
In this day and age is phone sampling the best way to begin epi studies?
(Given the portability of cell phone #s in the US people may have gotten a phone # when they lived in the Chicago area. But if they are no longer in that area or have access to that area many wouldn't be able to take part and would be even less likely to return a call. Others may blow off any call or voicemail from unknown numbers no matter how well intentioned the caller or message.)

 

I'm not sure that it has been mentioned in this thread that they did also write to people:

 

article:
DePaul researchers unmask misunderstood chronic illness

full article here
https://depauliaonline.com/46034/ne...ask-misunderstood-chronic-illness/?print=true

 

I think that's entirely possible.

There are an estimated 580,000 Canadians with ME, according to Health Canada:

https://www.canada.ca/en/institutes...le-living-with-myalgic-encephalomyelitis.html

 

How many physicians (cardiologists)/clinics in Canada can properly diagnose the several different variants of dysautonomia? POTS has been around for centuries and has only been well-defined in the last 25 years. This can markedly impair quality of life, especially because it is not widely understood in the medical world.

 

It took 6 years for my diagnosis. I first got sick in the 1980's, pre-computer at least for us. There wasn't much out there to access on ME at that time. Once diagnosed, I knew where to look, but until then I consulted practitioners who didn't know either.(Well, they still don't know now!)

Gradual onset, as @NelliePledge says slows down the realization that what's going on is a global health problem for the individual. It's not just repeated episodes of the flu, other infections, or problems with sleep etc. It's a real, and all encompassing disease.

As @rvallee said the "cfs" name is misleading and stupid. I spent years trying to find out what was really causing my "cfs", as it had to be something like allergies, heavy metals, chemical exposures, etc. Back then I didn't view "cfs" as a distinct biomedical disease, and neither did many others. (Of course many still don't)

 

Basically none, about the same situation as with ME, those may as well not exist or the chances of being referred to the right person is almost nil. You can find them, but they are not working with standard guidelines, same as with ME. If you find one that will even listen it's likely because they've had personal experience with it from family or friends.

 

@rvallee there is one excellent doctor in Calgary. I follow him on twitter I believe he is also familiar with ME.

 

Interesting the CDC would exclude people from an ME diagnosis if they have a positive Romberg test. The Canadian Consensus Criteria (CCC) Overview, page 18: " Tests for Abnormalities in ME/CFS" ... under the subheading"CNS, ANS" includes Romberg test:https://www.mefmaction.com/images/stories/Overviews/ME-Overview.pdf

From the ME Association:https://www.meassociation.org.uk/20...cfs-symptom-management-part-one-06-july-2017/

"Dizziness and problems with balance
Balance problems, which are often described as feelings of unsteadiness (‘walking on rubber’) or being dizzy, rather than actual spinning round or vertigo, are a very common symptom in ME/CFS. They can sometimes be confirmed on a physical examination with tests that are designed to assess balance (a Romberg test) and the Fukuda test for vestibular function (the vestibular apparatus within the ear helps to control balance)." (my bolding of "a Romberg test")


The CCC and the CDC exclude thyroid disease. However, I wonder how many people with ME also have thyroid disease; as well, how many have just ME, and no other systemic health issues.

 

Chicago Tribune: Study finds many youth living with undiagnosed chronic fatigue syndrome - and black and Latino children are twice as likely to suffer

"There's a lot of problems with finding diagnoses in treatment settings, so this is something that parents are going to struggle with," said study co-author Leonard Jason. "I don't know of any illness that is as scarce in terms of resources for families who have sick children as this - that's a national disgrace".