Fibromyalgia: my minimum evidence standard

Step 01

Fibromyalgia is classified in ICD-11 as chronic primary pain, which makes the pain the condition

ICD-11 classification

In the World Health Organization's ICD-11, fibromyalgia sits under chronic widespread pain, within chronic primary pain. This matters for your file: it means the pain is a diagnosis in its own right, not what is left over once other causes have been ruled out.

A strong file names the classification and records the extra details ICD-11 asks for (its specifiers).

The next step is what's driving the pain.

Step 02

Fibromyalgia pain is nociplastic, and that shapes which treatment evidence attaches to it

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). Fibromyalgia is nociplastic.

When your file names the mechanism, each treatment can be matched to what it was aimed at. If it doesn't, every treatment you haven't tried becomes an open question, because nothing in the record says whether it was relevant.

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

Step 03

Fibromyalgia is diagnosed against the AAPT criteria

Diagnostic criteria

The ACTTION–APS Pain Taxonomy (AAPT) published diagnostic criteria for fibromyalgia in 2019. Relatively few conditions have an AAPT set. Where one exists, a diagnosis can be checked against a standard rather than taken on a clinician's word.

The criteria cover five areas. A strong file shows the first in full and touches on the rest.

The differential. The AAPT names conditions a fibromyalgia diagnosis is distinguished from: rheumatological (including rheumatoid arthritis, lupus and polymyalgia rheumatica), neurological (neuropathy, multiple sclerosis), infectious (including hepatitis) and endocrine (including thyroid disease). A file that records how these were considered is stronger than one that states the diagnosis alone.

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

Step 04

A fibromyalgia treatment history is easiest to read when it covers the nine elements of pain management

Treatment history · s 24(1)⁠(b)

Whether the NDIS accepts an impairment as permanent usually comes down to the treatment record. I check it against the nine elements of pain management (HEAPPPPSS). For each one, the table names a published review or guideline that covers it for fibromyalgia or chronic pain. 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 and what happened. If an element never appears, the file says nothing about it, and the NDIS decides what that silence means.

Permanence is one requirement. Function is the other one a fibromyalgia file most often has to show.

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

Function over time · s 24(1)⁠(c)

Fibromyalgia fluctuates, and the cost of activity often arrives a day or more later. A single appointment sees one task on one day, so it tends to make you look more capable than you are.

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.

Three published fibromyalgia decisions show how files like this have fared at the Tribunal.