Prevalence of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) in Australian primary care patients: only part of the story?, 2022, Orji et

[Wyva]

Abstract
Background
ME/CFS is a disorder characterized by recurrent fatigue and intolerance to exertion which manifests as profound post-exertional malaise. Prevalence studies internationally have reported highly variable results due to the 20 + diagnostic criteria. For Australia, the prevalence of ME/CFS based on current case definitions is unknown.

Objectives
To report prevalence of ME/CFS in patients aged ≥ 13 years attending Australian primary care settings for years 2015–2019, and provide context for patterns of primary care attendance by people living with ME/CFS.

Methodology
Conducted in partnership with the Patient Advisory Group, this study adopted a mixed methods approach. De-identified primary care data from the national MedicineInsight program were analyzed. The cohort were regularly attending patients, i.e. 3 visits in the preceding 2 years. Crude prevalence rates were calculated for years 2015–2019, by sex, 10-year age groups, remoteness and socioeconomic status. Rates are presented per 100,000population (95% confidence intervals (CI)). Qualitative data was collected through focus groups and in-depth 1:1 interview.

Results
Qualitative evidence identified barriers to reaching diagnosis, and limited interactions with primary care due to a lack of available treatments/interventions, stigma and disbelief in ME/CFS as a condition.

In each year of interest, crude prevalence in the primary care setting ranged between 94.9/100,000 (95% CI: 91.5–98.5) and 103.9/100,000 population (95%CI: 100.3–107.7), equating to between 20,140 and 22,050 people living with ME/CFS in Australia in 2020. Higher rates were observed for age groups 50-59 years and 40-49 years. Rates were substantially higher in females (130.0–141.4/100,000) compared to males (50.9–57.5/100,000). In the context of the qualitative evidence, our prevalence rates likely represent an underestimate of the true prevalence of ME/CFS in the Australian primary care setting.

Conclusion
ME/CFS affects a substantial number of Australians. Whilst this study provides prevalence estimates for the Australian primary care setting, the qualitative evidence highlights the limitations of these. Future research should focus on using robust case ascertainment criteria in a community setting. Quantification of the burden of disease can be used to inform health policy and planning, for this understudied condition.


Open access: https://bmcpublichealth.biomedcentral.com/articles/10.1186/s12889-022-13929-9

 

[Dolphin]

The peer review history is here:
https://bmcpublichealth.biomedcentral.com/articles/10.1186/s12889-022-13929-9/peer-review
Sometimes this can be interesting to read, sometimes not.

 

[ME/CFS Skeptic]

Good that they included a patient advisory board that notified them how difficult it was to get a diagnosis of ME/CFS and that this might have resulted in an underestimation of the prevalence.

Otherwise, the results are rather similar to what we knew. 0.1% prevalence estimation (likely an underestimation), 75% women etc. Unlike previous studies they didn't find more ME/CFS in the lower socio-economic groups, but the underestimation might simply have been larger in this group.

 

[cassava7]

This seems to be a thorough study that was well informed by patient participation & involvement.

Perhaps the most revealing part of this study with regards to factors contributing to underdiagnosis of ME/CFS is the lack of diagnosis in less economically privileged & rural populations:

The demographic characteristics for the overall study population are presented in Table 1. In each, the majority of cohort was female (55.3–55.4%) and almost two-thirds resided in a major city (62.1–64.2%). For IRSAD quintiles, the proportion of the cohort in quintile 1 (i.e. the most disadvantaged) was the consistently the lowest (15.8–16.8%) and highest for quintile 5 (most advantaged: 23.5–24.2%).

This is rather unsurprising, as it reflects one of the major themes that emerged from the qualitative data analysis: “2) the prohibitive expense of accessing specialist primary healthcare professionals to reach a diagnosis” (due to GPs’ lack of knowledge on ME/CFS). Accordingly, studies in community settings like Leonard Jason’s have found higher prevalence rates.

With this study and the previous similar one in the UK that is mentioned in the paper, it now seems safe to say that a prevalence of ME/CFS of 0.1% is a significant underestimation and that, before the pandemic, it was at least 0.4%.

 

[BrightCandle]

“2) the prohibitive expense of accessing specialist primary healthcare professionals to reach a diagnosis”.

I am now 151 appointments in and I don't have a diagnosis for anything. If you are paying for healthcare directly or any amount of copay you are not going to waste 151 appointments getting no answers especially if a doctor isn't right around the corner. I laugh when specialists talk about 9 months being too long or the NICE guidelines dropping the requirement to 3 months of symptoms instead of 6, because its been 8 years and I am no closer to a diagnosis than when I started. Now I am severely ill I can't attend a doctor and they wont attend me. I can't thus participate in DecodeME, I can't get even a referral to a specialist or any medication and I fall between the giant gap that is GP access and emergency medicine taken to hospital in an ambulance.

Fact is most ME patients can't afford the energy to be wasting all this time on doctors to get a diagnosis for something for which there isn't any treatment and that is assuming they are one of the 1 in a million that seems to find a doctor that doesn't gaslight them. I have met 99 terrible medical personal who have treated me awfully and 1 that might turn out OK but remains to be seen. When they are that rare its no wonder studies like this are even necessary but also why they will always been extremely unreliable. The systemic prejudice around this disease is stifling every aspect of its research.

 

[Trish]

The cohort were regularly attending patients, i.e. 3 visits in the preceding 2 years.

Surely that cuts out a huge proportion of pwME who are either too sick to get to a doctor, or have given up on doctors because they can't help.

 

[rvallee]

Surely that cuts out a huge proportion of pwME who are either too sick to get to a doctor, or have given up on doctors because they can't help.

Yup. I would have been excluded. What's the point? And my GP isn't so bad all things considered, just can't do anything to help because the profession has sit on its hands. So I don't bother anymore. Last time I went 2 years ago it felt like such a waste of effort.

 

[BrightCandle]

Surely that cuts out a huge proportion of pwME who are either too sick to get to a doctor, or have given up on doctors because they can't help.

At least the 25% who are severe. I suspect most moderates have given up as well if they are a few years in, which likely means the majority of pwME aren't attending doctors.

 

[Dolphin]

The regular attenders’ thing would have excluded me for many years. But when my GP retired and another GP practice got her patients, the new practice insisted on appointments every six months to enable me get my prescriptions. A big drag but at least for the last few years with Covid, telephone appointments have sufficed.

 

[Snow Leopard]

The major flaw of this study is that it relies on (limited) primary care data - it is not a true representation of the whole population.

I wish we'd do a true population based prevalence study in Australia along the lines of the methodology that Jason pioneered in the 90s.

 

[Hutan]

There are some quotes on the following three themes of the qualitative research that might be useful:

Selective coding of the central theme led to the subthemes of 1) the dearth of specialist primary healthcare professionals for ME/CFS particularly in rural and regional areas; 2) the prohibitive expense of accessing specialist primary healthcare professionals to reach a diagnosis; and 3) after diagnosis of ME/CFS patients may either not attend a primary healthcare physician due to lack of definitive treatment for ME/CFS or when they attend it maybe for other medical reasons other than for ME/CFS but avoiding GPs for their ME/CFS. To illustrate sub-themes 1 and 3, many participants discussed the lack of awareness of the condition in the Australian primary healthcare setting and the reluctance to recognise the condition. One participant mentioned the previous experience of a primary healthcare professional with people living with ME-CFS:

The only ones who treated me decently were those who had some personal exposure to people with CFS. The others were next to useless - there is little worse for a medical person than a problem that they cannot solve. They hate to be shown up as not being perfect. And they communicate that to you (Female with ME/CFS, Focus Group 1)

To illustrate subtheme 3 one focus group participant said that after being diagnosed there was “no point” due to the lack of understanding of the condition in the primary healthcare sector and that she was too tired to explain her condition to yet another doctor:
Initially I was seeing a succession of GP’s to find a diagnosis and possible treatment. I no longer see a GP for CFS because there appears to be nothing that can be done (Female with ME/CFS, FG1)
Lastly, I am too tired anymore to bother trying to explain my condition to a new Doctor, for the umpteenth time (Female with ME/CFS, FG1)

 

[Art Vandelay]

Surely that cuts out a huge proportion of pwME who are either too sick to get to a doctor, or have given up on doctors because they can't help.

It is worth noting that Telehealth has only been available in Australia's publicly-subsidised Medicare system since the beginning of the covid pandemic.

However patients are restricted from seeing a GP via Telehealth unless they have seen that GP (or another GP at the same clinic) in a face-to-face appointment within the previous 12 months.

The result is that housebound patients are simply not able to consult a doctor even via Telehealth.

[Edit] I should also add:

GPs do not do home visits, particularly for people with ME/CFS.

People in rural areas in Australia have extremely limited access to GPs. Anecdotally, rural GPs seem even more dismissive of ME/CFS than their urban counterparts. Most rural patients are either forced to travel large distances to see a doctor, or they give up.

I agree that this study is likely to significantly underestimate the number of people with ME/CFS.

 

[Samuel]

Rates are presented per 100,000population (95% confidence intervals (CI)).

just wondering what the deal is with 100,000. [i am aware that fractions have been shown to improve reasoning that is related to the base rate fallacy or some such thing, but what i encountered of that result does not apply here.]

i'd prefer a percentage, a proportion, or at least a 10,000-based fraction.

 

[Midnattsol]

I would also easily have been excluded from this data. I'm mild/moderate, and have been ill for years, there's very little the GP can do for me. The last years I have mostly gone to see one to get documentation of illness for university, which would be one visit a year. Not everyone has such a need (There really ought to be a "this is a chronic condition that will not disappear" in many applications for support. In Norway pwDowns have had to document that they still have Downs every year... ) And then there is the medical gaslighting that makes people avoid healthcare services... In servere patients in Norway that is a large proportion according to a survey from the Norwegian ME Association.