• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

NCNED - Epidemiological characteristics of chronic fatigue- syndrome/myalgic encephalomyelitis in Au

hixxy

Senior Member
Messages
1,229
Location
Australia
Authors Johnston SC, Staines DR, Marshall-Gradisnik SM
Received 21 September 2015
Accepted for publication 31 March 2016
Published 17 May 2016 Volume 2016:8 Pages 97—107
DOI http://dx.doi.org/10.2147/CLEP.S96797
Checked for plagiarism Yes
Review by Single-blind
Peer reviewers approved by Dr Harminder Singh
Peer reviewer comments 3
Editor who approved publication Professor Henrik Toft Sörensen

Samantha C Johnston1,2 Donald R Staines1 Sonya M Marshall-Gradisnik1,2

1National Centre for Neuroimmunology and Emerging Diseases, Menzies Health Institute Queensland,2School of Medical Sciences, Griffith University, Parklands, QLD, Australia

Background: No epidemiological investigations have previously been conducted in Australia according to the current clinical definitions of chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME). The aim of this study was to describe sociodemographic and illness characteristics of Australian patients with CFS/ME.

Methods:
A cross-sectional survey on the medical history of patients enrolled in an Australian CFS/ME research database between April 2013 and April 2015. Participants were classified according to Fukuda criteria and International Consensus Criteria.

Results:
A total of 535 patients diagnosed with CFS/ME by a primary care physician were identified. The mean age of all patients was 46.4 years (standard deviation 12.0); the majority were female (78.61%), Caucasian, and highly educated. Of these, 30.28% met Fukuda criteria. A further 31.96% met both Fukuda criteria and International Consensus Criteria. There were 14.58% reporting chronic fatigue but did not meet criteria for CFS/ME and 23.18% were considered noncases due to exclusionary conditions. Within those meeting CFS/ME criteria, the most common events prior to illness included cold or flu, gastrointestinal illness, and periods of undue stress. Of the 60 symptoms surveyed, fatigue, cognitive, and short-term memory symptoms, headaches, muscle and joint pain, unrefreshed sleep, sensory disturbances, muscle weakness, and intolerance to extremes of temperature were the most commonly occurring symptoms (reported by more than two-thirds of patients). Significant differences in symptom occurrence between Fukuda- and International Consensus Criteria-defined cases were also identified.

Conclusion:
This is the first study to summarize sociodemographic and illness characteristics of a cohort of Australian CFS/ME patients. This is vital for identifying potential risk factors and predictors associated with CFS/ME and for guiding decisions regarding health care provision, diagnosis, and management.

Keywords: chronic fatigue syndrome, myalgic encephalomyelitis, chronic fatigue, diagnosis, epidemiology

88x31.png
This work is published and licensed by Dove Medical Press Limited. The full terms of this license are available at https://www.dovepress.com/terms.phpand incorporate the Creative Commons Attribution - Non Commercial (unported, v3.0) License. By accessing the work you hereby accept the Terms. Non-commercial uses of the work are permitted without any further permission from Dove Medical Press Limited, provided the work is properly attributed. For permission for commercial use of this work, please see paragraphs 4.2 and 5 of our Terms.

https://www.dovepress.com/epidemiol...bspsyndromemyalgic-peer-reviewed-article-CLEP
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
The fact that most were highly educated seems a red flag. I see no reason for this to be the case (biologically speaking).

study paper said:
Participants

Recruitment was based on self-identification in response to an advertisement in CFS/ME community support networks across Australia, as well as a general advertisement on local radio and social media.

Upon contacting the research center, those interested in enrolling in the research database received an information pack and informed consent was obtained by agreeing to terms and conditions disclosed online or signing a hard copy sent in the mail.

To be eligible for this study, participants were required to 1) report a diagnosis of CFS/ ME by their primary physician, 2) be between 18 and 65 years of age, and 3) a resident of Australia.

As recruitment relied on self-identification, it is unknown whether there was a difference between responders and nonresponders in this study.

Rather than aim for a comprehensive population-based screening at this stage, the methods of this study enabled us to summarize potential cases of CFS/ME present in the Australian community

So the characteristics of the patients could just represent the characteristics of people most likely to participate in research surveys. :(

In fairness:

study paper said:
Limitations and recommendations

The results of this study may not be representative of all CFS/ME patients in the general population given that the sample was not from a community-based survey.
 

hixxy

Senior Member
Messages
1,229
Location
Australia
That's kind of annoying. I thought they'd done this based on the surveys we fill out when participating in their other studies. I have to fill out a survey with each blood draw within X number of days.
 

Hutan

Senior Member
Messages
1,099
Location
New Zealand
I really want NCNED to be doing amazing work, solving the riddle of this disease. But every time they put out a paper like this or like the underpowered genetic studies, my heart sinks a little ... and makes me less excited about their claim to have found biomarkers.

What they have here is the demographics of sick people who have the time and wherewithal to participate in surveys. It certainly can't be claimed to be the demographics of ME/CFS. It adds to the authors' publication counts but tells us nothing new.

This is the first study to summarize sociodemographic and illness characteristics of a cohort of Australian CFS/ME patients. This is vital for identifying potential risk factors and predictors associated with CFS/ME and for guiding decisions regarding health care provision, diagnosis, and management.

What's the bet it will be used by some to make claims along the lines of 'MECFS is a set of symptoms displayed by middle-aged highly educated women who are dissatisfied with their lives'. And I know well how that line of thinking guides management of ME/CFS.

NCNED, how about going to some Aboriginal communities and finding out the incidence and previous diagnosis rate of ME/CFS there? Or in villages in the Solomon Islands? Or in a rural community in Tasmania? Now that would be interesting. And might result in much better information for 'guiding decisions regarding healthcare provision, diagnosis and management'.
 

JaimeS

Senior Member
Messages
3,408
Location
Silicon Valley, CA
The fact that most were highly educated seems a red flag. I see no reason for this to be the case (biologically speaking).

So the characteristics of the patients could just represent the characteristics of people most likely to participate in research surveys. :(

There may not be genetic reasons, but environmental ones: Hyde found that his patients were in education, foreign aid, and medicine, overwhelmingly... where they came into close contact with a wide variety of pathogens every day as part of their job. As a result, the 'average' patient was educated and generally well-informed. Hyde did say, however, that maybe those were simply the people who stuck it out long enough to be diagnosed in the first place: people who didn't really buy it when their physician suggested they get out more, change their hairstyle, or go to a psychotherapist, instead.

So it's possible that it's not that PWME tend to be clever, but the ones who eventually get diagnosed tend to be.

-J
 

JaimeS

Senior Member
Messages
3,408
Location
Silicon Valley, CA
Mean age of onset, 28-30 years old, average duration of illness: 14.5 years!

This is, to me, one of the weirdest and most interesting aspects of ME/CFS. Why isn't anybody studying WTH happens to (especially) women at age 30 that makes them suddenly many times more susceptible? I've watched women in my family drop at this age three times, now... I want a study on this!
 

Hutan

Senior Member
Messages
1,099
Location
New Zealand
This is, to me, one of the weirdest and most interesting aspects of ME/CFS. Why isn't anybody studying WTH happens to (especially) women at age 30 that makes them suddenly many times more susceptible? I've watched women in my family drop at this age three times, now... I want a study on this!

They are talking about mean age though. So it's possible that there were peaks in adolescence and in the 40's, rather than one peak in the 30's. I seem to remember a Scandanavian age of onset graph that found the two peaks.
 

JaimeS

Senior Member
Messages
3,408
Location
Silicon Valley, CA
They are talking about mean age though. So it's possible that there were peaks in adolescence and in the 40's, rather than one peak in the 30's. I seem to remember a Scandanavian age of onset graph that found the two peaks.

I did hear about that as well, @Hutan! However, I have heard anecdotally from many that onset was between the ages of 28 and 34. Maybe it's somewhat self-selecting; that's when onset was for me, so those values stick out in my mind.
 

alicec

Senior Member
Messages
1,572
Location
Australia
I really want NCNED to be doing amazing work, solving the riddle of this disease. But every time they put out a paper like this or like the underpowered genetic studies, my heart sinks a little ... and makes me less excited about their claim to have found biomarkers.

My feelings exactly.

It adds to the authors' publication counts but tells us nothing new.

All their recent publications seem to fit into that category.
 

CCC

Senior Member
Messages
457
This sounds like a thesis (hope it's not a PhD) - small goal, well-defined data source, readily analysed.

The first thing a PhD student learns is just how small their topic will be compared with their grand goals to save the world. Other students learn the same thing, but honours students are just happy to be there by and large.
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
The fact that most were highly educated seems a red flag.
Yes, I suspect this too. It looks like a selection bias.

However I also have to comment that people with money and a better education are more likely to wind up seeking better care and diagnosis. Other people may be less likely to even get a proper diagnosis.

More educated people are also more likely to wind up places like here at Phoenix Rising. That is changing however, I believe most young people will find places like this, or research studies, more often than previous generations. Its the internet age. So I expect some degree of selection bias will decrease over time. Its mostly a matter of awareness.