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

article in spanish on the study: quotes Esther Crawley
Dr. Esther Crawley, who serves as an unpaid medical advisor for the ME / CFS society of Sussex and Kent, explains that pediatric chronic fatigue syndrome is an important disease, since it is relatively common and also very disabling with a wide range of impacts on the child, family and health care systems.

“Children and adolescents with CFS have severe disabling fatigue that lasts at least 3 months. They have additional symptoms, including headaches, sleep problems, cognitive problems, sore throat, muscle aches and pains, nausea and dizziness. Post-effort discomfort is a central symptom and the most useful when making a diagnosis. Children experience an increase in fatigue, malaise and symptoms after an increase in effort. For many, this means that they attend 1 or 2 days of school, before feeling too bad to attend school, ”explains Crawley.
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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
 
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Andy said:
From the page 8 of the paper, https://sci-hub.se/10.1007/s10566-019-09543-3

The prevalence of ME/CFS was calculated using the formula cited in Jason et al. (2012). This formula takes into account the actual number of participants who had ME/CFS as well as those who had a chance of diagnosis based on screening positive in Stage 1 but may not have participated in Stage 2, yielding a more encompassing prevalence estimate. The total number of respondents screened in Stage 1 is represented by N. The proportion of screened positives over the total number of screens in Stage 1 is represented by PI, and the proportion of screened negatives over the total number of screens in Stage 1 is represented by 1−PI. The proportion of screened positives who were evaluated in Stage 2 and diagnosed with ME/CFS is represented by L1 and the proportion of screened negatives who were evaluated in Stage 2 and diagnosed with ME/CFS is represented by L2.

This information was then used in the following formula to obtain the Prevalence P: P=L1 *PI+L2*(1−PI). Chi square analyses were used to examine group diferences between screen positive participants and screen positive non-participants frst to determine whether there were any signifcant diferences in gender, age, and race/ethnicity and whether equal prevalence could be assumed. Second, descriptive statistics, Chi square analyses, and t tests were used to examine diferences in prevalence rates among groups and symptom endorsement between those diagnosed with ME/CFS and screen negative control participants.

Results Table 1 presents frequency data for screen positive and screen negative participants as well as fnal diagnoses for ME/CFS. There were no signifcant diferences between the screen positive subjects and screen negative controls in terms of gender, race/ethnicity, and age, as expected, as test negative control participants were invited to participate based on a demographic-matching process. Prevalence rates, using the formula delineated above, classifed ME/CFS if youth met the Fukuda et al. (1994), IOM (2015), and Pediatric (Jason et al. 2006) case defnitions.

Table 1
Data on participant selection and completion of the study
Number of participants

[Numbers are for] Screened positive [and] Screened negative
Completed phase one screen 865 / 9254
Selected for phase two of evaluation 298 / 243
Completed phase two of evaluation (physician review) 165 / 42
Final diagnosis of ME/CFS 42 / 0

P = (42∕165) ∗ (298∕10, 119) + (0∕42) ∗ (1 − 298∕10, 119)
P = (0.2545 ∗ 0.0294) + 0
P = 0.0075 = 750∕100, 000

Thus, the prevalence for ME/CFS in this community-based pediatric population was found to be 0.75% (95% confdence interval, 0.54–0.96%), or 750 per 100,000.
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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. :)
 
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Channa said:
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. :)
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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:

The first stage of the study involved calling households in the greater Chicago area. Phone numbers and addresses were obtained from InfoUSA. Postcards were sent to the home addresses provided, with information about the study and contact information if those who received the postcards were interested in participating.
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article:
DePaul researchers unmask misunderstood chronic illness

What most people don’t know about DePaul’s College of Liberal Arts and Social Sciences is the hidden gem that lies on the third floor of the 990 W. Fullerton academic building in the Lincoln Park campus.

The Center for Community Research, which was founded and directed by psychology professor Leonard Jason in 2001, is dedicated to “reducing stigma, empower citizens and better understand the systemic and environmental barriers to full participation in community life,” according to the Center’s website.

Jason works quietly in a warmly-lit study with his degrees and accolades lining the walls of his office. His most recent research study, which he worked on in that very office for seven years, screened 10,000 children and teenagers in the Chicago area for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS).
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full article here
https://depauliaonline.com/46034/ne...ask-misunderstood-chronic-illness/?print=true
 
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.
 
Michiel Tack said:
I find it perplexing because I would assume that when people have ME/CFS and can no longer function, that they search for doctors, books and online resources to try to figure out what's wrong. I would think that somewhere along that quest they would stumble upon ME/CFS as a likely diagnosis.

Don' get me wrong can see how it could go wrong for a lot of people (for example not having the financial resources to see a lot of doctors), in not getting the right diagnosis, but 95% that's hard for me to comprehend.

I would be interesting to see the cases of those patients who remained undiagnosed: how were they doing, they did have an alternative diagnosis or did they simply tried to ignore their symptoms etc.
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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)
 
Mij said:
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.
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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.
 
Dolphin said:
https://hqlo.biomedcentral.com/articles/10.1186/1477-7525-1-49
https://hqlo.biomedcentral.com/articles/10.1186/1477-7525-1-49/tables/5
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These are called "temporary" exclusions because these were people who had previously been diagnosed with CFS; they were then followed up for up to three years. If at one stage they had any of the above, they weren't
counted as CFS cases. However they were eligible to be invited back the following year.

Looking at now, I'm not sure that hypertension should be an exclusion either.
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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.
 
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