ME/CFS: my minimum evidence standard

Step 01

ME/CFS is classified in ICD-11 as a disease of the nervous system, and its pain is coded separately

ICD-11 classification

In ICD-11, the World Health Organization's classification of diseases, ME/CFS sits with the diseases of the nervous system. It isn't in the mental health chapter, and it has a different code from fatigue as a symptom. ME/CFS isn't a pain diagnosis, and you don't need pain to be diagnosed with it. But widespread pain is common, and where it's a significant problem in its own right, it's coded separately as chronic widespread pain.

This matters for your file in two ways. First, the diagnosis has to be current and checked against criteria: a strong file says which criteria were used, by whom and when, and shows a current treating practitioner confirms them. Second, the NDIS decides permanence for the impairments, not the diagnosis. A strong file names them: post-exertional malaise, slowed thinking, short-term memory problems, difficulty planning and organising, sensitivity to light and noise. In one decision in my index, the Tribunal accepted impairments described in exactly those terms (JSMP [145]).

The next step is what's driving it.

Step 02

The cause of ME/CFS isn't established, and its pain, where present, is nociplastic

Pain mechanism

Pain is classified by mechanism: nociceptive (from tissue), neuropathic (from nerve injury or disease), or nociplastic (from altered pain processing in the nervous system). Where ME/CFS brings pain, it's nociplastic: the nervous system processes input differently, so pain arises without tissue damage to explain it.

The cause of ME/CFS itself isn't known. Research has found differences in immune function, in the autonomic nervous system (heart rate and blood pressure control, especially when upright), in energy metabolism, and in the brain and nervous system, and many people date the start of their illness to an infection. A recent analysis concluded that reduced effort and deconditioning are not valid explanations of ME/CFS (Davenport et al 2025). That matters when a report puts your limits down to being out of condition.

The next step is the criteria the diagnosis is checked against.

Step 03

ME/CFS is diagnosed against NICE guideline NG206

Diagnostic criteria

AAPT has not published criteria for ME/CFS, and there is no current Australian guideline: the Australian guidelines are more than 20 years old, and the NHMRC is developing new ones, with release indicated for August to December 2027. Until then, the standard I use is the UK's NICE guideline NG206 (2021). It asks for four features, persistent for at least three months, with a significantly reduced ability to do your usual activities, and not explained by another condition.

A strong file also records the date symptoms started, and which other causes of fatigue were investigated and ruled out. These usually include thyroid and other hormone problems, anaemia, sleep disorders such as sleep apnoea, autoimmune and inflammatory disease, depression, and other neurological conditions. The US Institute of Medicine's 2015 criteria are the other definition files commonly cite; both require post-exertional malaise, and a file that says which was used avoids an argument about definitions. Older definitions that don't require it are easier to question. Conditions such as postural orthostatic tachycardia syndrome (POTS) and fibromyalgia often occur alongside ME/CFS, and a file that says which symptoms belong to which condition is much easier to read. NICE also describes four severity levels, from mild to very severe; a file that records your treating practitioner's rating, and the activities it's based on, gives the NDIS a scale to work from.

Once the diagnosis is settled, the question most refusals come down to is what has been tried.

Step 04

An ME/CFS treatment history is easiest to read when it covers the nine elements of pain management

Treatment history · s 24(1)⁠(b)

ME/CFS isn't on the NDIS's List A or List B, so nothing about permanence is presumed. “There is no cure for ME/CFS but there are ways you can manage your symptoms” (Healthdirect), and management centres on pacing your energy and treating symptoms. NICE recommends against any programme “that uses fixed incremental increases in physical activity or exercise, for example, graded exercise therapy” (rec 1.11.14). So a list of therapies tried doesn't show much on its own. I check the record against the nine elements of pain management (HEAPPPPSS). For each one, the table names a published source. For a support request, the same record shows where treatment ends and disability support begins, which is how the NDIS decides whether the health system should fund it instead.

For each element in your file, the NDIS looks for what was done, by whom, for how long, and what happened, in symptoms and in function. For ME/CFS in particular, a strong file says whether a treatment or activity programme was followed by post-exertional malaise, and how long recovery took. Where something was stopped because it made things worse, the file says so and says why. If an element never appears, the file says nothing about it, and the NDIS decides what that silence means.

Who says it, and how, matters. In one decision in my index, the treating GP's opinion that all treatment options had been explored was given limited weight, because the reports set out “conclusions and recommendations rather than investigations and analysis” (JSMP [108]). A report that sets out what was tried, the reasoning and the current position carries more weight than a conclusion.

Permanence is one requirement. Function is the other one an ME/CFS file most often has to show.

ME/CFS function is shown best across a whole day and the week that follows, not in one appointment

Function over time · s 24(1)⁠(c)

Post-exertional malaise is a delayed cost: symptoms worsen hours to days after physical, mental or other exertion, and recovery can take days or weeks. So a single appointment is less able to show function in ME/CFS than in almost any other condition. The appointment is itself an exertion, and its cost usually arrives after you've gone home. A strong file records every task with what followed it, and records what you did in the days before an assessment and how you were afterwards. In one decision in my index, the assessment probably took place the day after a work shift, and the Tribunal found what the assessor saw hard to reconcile with the evidence that she needed at least a day to recover from work (WLXN [66]).

A strong file follows what happens after a run of ordinary activities. I follow up at 24 hours, 72 hours and 7 days.

For an access request, I then match what your file shows to the six activity domains in s 24(1)⁠(c), the areas of daily life the NDIS assesses. For a support request, the same record shows what the support keeps you doing and what slips without it. Either way, that's done for each person, not for each condition.

Five published ME/CFS decisions show how files like this have fared at the Tribunal.