Australia: 2 in 5 chronic fatigue syndrome diagnoses wrong, worse for ME

Griffith University building by night

by Sasha Nimmo

Around 38% of Australians diagnosed with chronic fatigue syndrome (CFS) and Myalgic Encephalomyelitis (ME) do not meet the Fukuda chronic fatigue syndrome definition used by the US government. More than two-thirds don’t meet the International Consensus Criteria for Myalgic Encephalomyelitis (ICC ME). Australia has no national clinical guidelines but patient organisations endorse the ICC or earlier version (Canadian Consensus Criteria).

Australia’s National Centre for Neuroimmunology and Menzies Health Institute looked at characteristics of patients meeting Fukuda chronic fatigue syndrome criteria (CFS) and International Consensus Criteria (ICC) for Myalgic Encephalomyelitis (ME). The aim of this study was to describe sociodemographic and illness characteristics of Australian patients with CFS and ME.

Epidemiological characteristics of chronic fatigue syndrome/myalgic encephalomyelitis in Australian patients was published in Clinical Epidemiology in May 2016.

The study included 535 patients diagnosed with CFS or ME by a primary care physician.

  • 30.28% met only the Fukuda chronic fatigue syndrome criteria.
  • 31.96% met both the Fukuda CFS criteria and ME International Consensus Criteria.
  • 14.58% reporting chronic fatigue but did not meet criteria for CFS or ME.
  • 23.18% were considered noncases due to exclusionary conditions
  • Four participants who only met ICC, but were excluded from analysis “due to lack of statistical power”.

The study didn’t measure the percentage of patients who meet the 2002 Australian criteria but said the 2002 Australian CFS clinical practice guidelines used different criteria to Fukuda and therefore “may be representative of a significantly different clinical profile”.

“It is most often characterized by Fukuda et al criteria that include medically unexplained fatigue that may be accompanied by cognitive difficulties, sleep disturbances, and flu-like symptoms. Alternative criteria, such as the International Consensus Criteria (ICC), disclose a further range of symptoms pertaining to the neurological, immunological, gastrointestinal, and autonomic systems.”

Not many patients in this study are able to work. 34.2% of participants were on disability pension,  26.7% unemployed, while the lowest proportion maintained full-time roles (9.7%).

Difference between CFS and ME

The study said significant differences in symptoms between Fukuda-defined (CFS) and International Consensus Criteria-defined (ME) cases were identified and the ME patients had a lower level of functioning.

“Those meeting the ICC definition further appear to represent a distinct clinical group with distinguishing symptoms.

This supports previous findings that ICC-defined cases represent a subgroup within the broad spectrum of Fukuda-defined CFS/ME. Accordingly, it has been demonstrated that ICC-defined cases have reported decreased physical and social functioning in comparison to Fukuda-defined cases.”

The charts in the study, showing mean age, duration, onset and type of illness at onset, symptoms are interesting.

“Cognitive issues such as difficulty processing information, muscle pain and muscle weakness, sleep disturbances, and sensitivities to light, noise, vibration, odor, and/or touch in particular were the most common issues reported by more than two-thirds of both Fukuda- and ICC-defined cases.

Food intolerances, urinary disturbances, and intolerance of extreme temperature were also highly prevalent among ICC-defined cases (more than two-thirds) and could be considered distinguishing features in comparison to Fukuda-defined cases.”

Attitudes in the medical profession

Twenty years ago, one-third of Australian GPs reported that they did not believe that CFS is a distinct syndrome. Of these, 70% reported that the most likely cause of chronic fatigue was depression. (survey of 2090 GPs in 1995). Has much changed?

This study says “the significant variability found between case definitions for CFS/ME is an immediate cause of confusion for clinicians and researchers alike. Further reasons include limited knowledge, lack of recognition for the disorder, and limited contact with CFS/ME patients who do not access care due to the severity of their condition as well as their low expectations for receiving adequate care and support.”

The work was supported by several foundations and the Queensland government.

Follow @sashanimmo for updates via Twitter.

38 thoughts on “Australia: 2 in 5 chronic fatigue syndrome diagnoses wrong, worse for ME

  1. “23.18% were considered noncases due to exclusionary conditions”- those who had gone on to develop PTSD and/or depression from having the condition & the treatment by society? Or who happen to have other mental health diagnoses that did not cause their condition?

    Is it possible that this study excluded a huge number of people who have genuine CFS or ME but who also have a non-causatory [of CFS or ME] mental illness?

    1. The authors recognise that CFS or ME can result in depression, so I doubt they would have excluded on that basis.

      The paper says:
      “The functional impact of the illness is also evident in the significantly high proportion of individuals who are unemployed, on disability pension, or maintain part-time roles. This is of particular concern considering many are still in the most economically and socially productive years of their lives and, thus, represents significant economic losses at both the population and patient level. This reduced economic position adds further to the stress, anxiety, or depression that may develop with a chronic condition, particularly in those patients who are bedridden or housebound for protracted periods of time and receive limited support.”

      1. Ah k that’s good to hear. It just sounded/s like a huge number of patients to be excluding when they made such big claims about how many people have incorrect diagnosises.

      2. It is a huge number and did get me wondering. Perhaps Australian GPs are still using the 2002 Australian criteria, since the NHMRC haven’t replaced it with a new set of national clinical guidelines.

  2. Sasha, i have not read the paper. Does it mention PEM as a symptom which distinguishes ME from CFS or differentiates between the various criteria?

    1. Hi Susanna,

      They did measure in the patients (Table 4) but didn’t discuss it in the paper.

      You probably already know: PEM is not required to meet Fukuda criteria; to meet Fukuda criteria you have to meet 4 out of 8 criteria and PEM is one of the 8, so you can meet Fukuda without PEM.

      PEM is required to meet the ICC ME criteria.

      You might find this summary of a Norwegian study interesting, comparing the different criteria ‘What Exactly is ME?’: https://meaustralia.net/2016/03/03/norwegian-researchers-ask-what-exactly-is-m-e/

      I also wrote about the Australian situation here, about the reasons to move from the 2002 Australian criteria to the 2012 ICC ME criteria: https://meaustralia.net/2016/03/29/why-me-and-cfs-instead-of-mecfs/

      Thanks for reading my articles, I hope they make it easier to understand research.

  3. I know this is an Australian study, but here in the US we have a similar problem.
    Though our specialists in cfs may measure by the ICC or CCC our billing/insurance/diagnosis codes only offer “fatigue, chronic (idopathic)” or “chronic fatigue syndrome.” This is not likely to change because our codes were just updated, I’d expect if we get a change it will be in 10-20 years.

    We do not recognize ME here the way it should be. Since I am an american and have never been told I have ME, despite meeting ICC and fukuda, I always tell people I have CFS.

    I am interested in what counted as exclusion criteria- I have many comorbidities and wonder if I would fit in that grouping if I were included in this study. One possibility is people had cancer or uncontrolled diabetes, but that is a very very large percentage and a little scary if people are having immediately life threatening diseases but receiving a chronic diagnoses (not to downplay the severity of me or cfs, especially not terminal cases)… I think we could agree the treatments we get aren’t suitable for us and definately aren’t going to be saving live for other diagnoses.

    Also curious are those 4 who didn’t meet fukuda but met ICC. I am going to have to make a chart to even try and understand what that looks like.

    “””“Cognitive issues such as difficulty processing information, muscle pain and muscle weakness, sleep disturbances, and sensitivities to light, noise, vibration, odor, and/or touch in particular were the most common issues reported by more than two-thirds of both Fukuda- and ICC-defined cases.

    Food intolerances, urinary disturbances, and intolerance of extreme temperature were also highly prevalent among ICC-defined cases (more than two-thirds) and could be considered distinguishing features in comparison to Fukuda-defined cases.””””

    These symptoms even within a grouping of occurence aren’t very descriptive to me despite being important. I know people online with alot of them who have a fibromyalgia or dysautonomia diagnoses or some combo of the two, but lack some of the more important symptoms in CFS or ME like PEM.

    I am curious, what is Fibro like in Australia?

    1. Hello Shy,
      I was interested in those four too. If you make the chart I’d love to see it!
      I don’t know much about fibromyalgia in Australia, I do know it isn’t taken seriously in lots of cases.
      Thank you for reading.
      Sasha

  4. Reblogged this on andrewpaulkleinblog and commented:
    This study says “the significant variability found between case definitions for CFS/ME is an immediate cause of confusion for clinicians and researchers alike. Further reasons include limited knowledge, lack of recognition for the disorder, and limited contact with CFS/ME patients who do not access care due to the severity of their condition as well as their low expectations for receiving adequate care and support.”

  5. What I am also finding in patient support groups is that patients are experiencing symptoms above and beyond the standard definitions, but their docs and the patients themselves are saying that’s just my MECFS or if Fibromyalgia just my Fibro. This is cause for concern that the original diagnosis may have been wrong and other potential issues were not explored. A recent Senate inquiry into tick-borne infections showed around half had a diagnosis of either or both MECFS and Fibromyalgia. Now with better diagnoses, a lot of these people are receiving more targeted and appropriate treatment to address the real underlying cause and are seeing improvements where for years they saw none or a decline in health. Similar applies to mould and CIRS issues as well. I am not saying all mecfs and fibro have these underlying every patient as they don’t and it’s more complex than that But if we do not explore all avenues, patients get stuck in the mecfs diagnosis box and left there. Patients are adding all kinds of “weird” symptoms which do not fall into the diagnostic criteria., such as night sweats which can be a symptom of Rickettsia for one. So doctors are not listening to these symptom changes to reconsider the diagnosis. Patients also sadly need to be proactive and not take all their symptoms as just their MECFS. I know my doc missed for 6 months, a muscle tear in my hip and shoulder as just my Fibro mecfs pain. In other cases, doctor laziness presides and people with simpler issues of sleep apnoea and gut dysbiosis or the obvious such as Chrohns get thrown into the mecfs basket. We do need research but we need far better training of doctors to fully work up a patient and take a full and complete history and keep tabs on these weird symptom changes a patient describes ie listen to their patients.

    1. Dear Peter,
      You are right, some 40% of Australians given the diagnosis of ‘chronic fatigue syndrome’ don’t meet the Fukuda chronic fatigue syndrome criteria and many have other conditions which explain their symptoms. That adds to disbelief as those misdiagnosed often assume everyone is and can make well-intentioned but unhelpful suggestions.
      The Primer for Medical Practitioners on the International Consensus Criteria for Myalgic Encephalomyelitis is important for all patients and their treating medical professionals to read. http://emerge.org.au/wp-content/uploads/2014/06/Myalgic-Encephalomyelitis-International-Consensus-Primer-2012-11-26.pdf
      The Primer is clear that ME should be removed from the umbrella term ‘chronic fatigue syndrome’ which can often be a wastebasket diagnosis.

      Thanks for commenting.

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