Healthcare use before, during and after a diagnosis of CFS/ME

"Adults and children with CFS/ME [chronic fatigue syndrome / myalgic encephalomyelitis] have greater health care needs than the rest of the population for at least ten years before their diagnosis, and these higher levels of health care resource use continue for at least ten years after diagnosis."

So concluded the study published by Simon Collin and colleagues [1] (open-access available here) who once again (see here) relied on data derived from the "Clinical Practice Research Datalink (CPRD) GP practices in the UK" to further explore aspects of the debilitating condition(s) headed under the banner of CFS/ME.

Using a case-control design, researchers set out to "investigate long-term patterns in health care resource use before and after a diagnosis of CFS/ME." They had a hypothesis in mind before any study results were produced in that "health care resource use would increase from around the time of patient-reported onset of illness... until diagnosis" but "did not have a prior hypothesis about post-diagnosis health care resource use, although this might be expected to fall if diagnosis led to referral and effective treatment."

Their results based on "916 child (age <18 years) and 6710 adult patients" suggested a few things: (i) "a steep drop in resource use immediately after diagnosis was followed by sustained higher levels of health care resource use for at least ten years after diagnosis", (ii) adults and children with CFS/ME tended to have greater healthcare resource use "for at least ten years before the diagnosis", and (iii) allied to that last point: "there were steep increases in use of health care resources 2–4 years before diagnosis in adults and 1–2 years before diagnosis in children." Healthcare resource use, by the way, was defined as including several things including: "GP [general practitioner] consultations, tests, prescriptions, and referrals" (with certain caveats).

Although carrying an important message that elevated healthcare resource use is associated with a diagnosis of CFS/ME (bearing in mind the limitations of the CPRD when it comes to CFS/ME), one has to be quite careful with how facets of the Collin data are handled. I say this specifically on the basis that healthcare use 'at least ten years before diagnosis' was found to be elevated for those with CFS/ME and how authors talk about this conflicting with "patients reporting that they were fit and well prior to the onset of their illness." You can perhaps see how this data *could* be used by some to 'challenge' patients with reference to their reliability in reporting their illness onset for example and/or the idea that "behaviour traits such as disease conviction and somatic concern could not be discounted as aetiological factors." This in the context that the biopsychosocial model of CFS/ME is still prevalent in some quarters (see here) particularly those linked to healthcare interactions.

Thankfully the authors offer a couple of other potentially important reasons to account for their results based on (a) "people may simply have had CFS/ME for a very long time" and/or (b) "it is possible that people who develop CFS/ME have pre-existing risk factors which lead to higher rates of health care resource use." Indeed, on that second point, one might even argue that specific pre-existing medical complaints could/would/might predispose someone to developing CFS/ME (see here) particularly with all the talk about immune function potentially being a facet of some CFS/ME for example (see here). In this context, we perhaps need to know a little more about the genetics potentially important to CFS/ME, bearing in mind the emerging theme that condition-specific genes are not just genes specific to any one condition (see here for example).

Accepting also that authors were "unable to determine from our data whether the type of health care resource use by patients changes following diagnosis" the finding that healthcare use continues to be fairly high after diagnosis is a worrying sign. It suggests that modern medicine might not be particularly good at treating/managing those with CFS/ME (and their associated conditions) in the longer term based on current best practice. I could be a little bit cynical on this point in relation to how current 'best practice' for managing/treating CFS/ME involves some rather controversial techniques which could be construed as 'failing' in the context of these results. Indeed, I will refer you to a quote by Jonathan Edwards [2] talking about the on-going controversy in CFS/ME circles in relation to how current best practice might not be as successful as many might think: "If they are still ill, presumably these approaches have failed and the priority is to find something more effective." Indeed.

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[1] Collin SM. et al. Health care resource use by patients before and after a diagnosis of chronic fatigue syndrome (CFS/ME): a clinical practice research datalink study. BMC Fam Pract. 2017 May 5;18(1):60.

[2] Edwards J. PACE team response shows a disregard for the principles of science. 2017. J Health Psychology. March 28.

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Collin, S., Bakken, I., Nazareth, I., Crawley, E., & White, P. (2017). Health care resource use by patients before and after a diagnosis of chronic fatigue syndrome (CFS/ME): a clinical practice research datalink study BMC Family Practice, 18 (1) DOI: 10.1186/s12875-017-0635-z