Hypermobile Ehlers-Danlos syndrome: my minimum evidence standard
The NDIS looks for the same chain of evidence whether it's deciding on access or on a support. This page sets out the minimum I'd expect that evidence to contain for hypermobile Ehlers-Danlos syndrome (hEDS): how the condition and its pain are classified, what the diagnosis is checked against, what treatment has been tried, and how day-to-day function is recorded over time. It's the same method I use on every file.
It's about the file, not your treatment. Questions about your own care belong with your GP or treating specialist.
What the condition isSteps 1–3
Step 01
hEDS is classified in ICD-11 as a connective tissue disorder, and its pain as secondary to it
ICD-11 classification
In ICD-11, hEDS sits with the syndromes of connective tissue, not with chronic pain. The pain it causes is classified separately, as chronic secondary musculoskeletal pain: pain that is a consequence of something else rather than a condition in its own right.
This matters for your file. With secondary pain, the impairment is usually the structural one (joint instability, loss of strength, reduced endurance), and the pain is one of its effects. A strong file names both codes and says which impairment each finding relates to.
| Code | Level | Term |
|---|---|---|
| LD28 | Parent | Syndromes with connective tissue involvement as a major feature |
| LD28.1 | Subclass | Ehlers-Danlos syndrome |
| LD28.1Y | Category | Other specified types of Ehlers-Danlos syndrome, where ICD-11 places the hypermobile type |
| MG30.31 | The pain | Chronic secondary musculoskeletal pain associated with structural changes · severity, distress and interference (mild, moderate, severe) · pattern (intermittent, persistent, persistent with attacks) · psychosocial factors (present, not present) |
The next step is what's driving the pain.
Step 02
hEDS pain starts nociceptive and can become nociplastic, and a strong file shows where it is now
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). In hEDS, pain usually begins as nociceptive: repeated strain on lax joints, ligaments and fascia. Over time it can take on nociplastic features, as persistent pain changes how the nervous system processes it. Nerve entrapment and small fibre neuropathy can add neuropathic pain.
When your file records which mechanisms are present, and when that was assessed, each treatment can be matched to what it was aimed at. A treatment aimed at joint stability does something different from one aimed at pain processing. If the file says which was which, the NDIS doesn't have to guess.
The next step is the criteria the diagnosis is checked against.
Refused access or a support for hEDS?
Bring your decision letter to a free 15-minute call, and we'll work out which requirement your file has to answer.
Step 03
hEDS is diagnosed against the 2017 international criteria
Diagnostic criteria
AAPT has not published criteria for hEDS. The recognised standard is the 2017 international classification of the Ehlers-Danlos syndromes. All three of its criteria must be met, and the second has three parts.
| Criterion | What a strong file records | |
|---|---|---|
| 1 | Joint hypermobility | A Beighton score at or above the age-adjusted cut-off, or a history of hypermobility on the five-point questionnaire. A strong file records the score, the date, and who measured it. |
| 2 | Two or more of A, B and C | A: five or more of twelve systemic features, such as soft or stretchy skin, unexplained stretch marks, recurrent hernias, a high palate or dental crowding. B: a first-degree relative who independently meets the criteria. C: daily limb pain for three months or more, widespread pain for three months or more, or recurrent dislocations or instability without trauma. A strong file records which are met, and the evidence for each: examination findings, family history, dental or other records. |
| 3 | Exclusions | No unusual skin fragility; other inherited connective tissue disorders and autoimmune rheumatological conditions excluded. A strong file records how the exclusions were made, and by whom. |
The differential. The 2017 framework separates hEDS from hypermobility spectrum disorders (HSD), where hypermobility causes symptoms but the hEDS criteria are not met. Other conditions a strong file shows were considered include the other EDS types, Marfan and Loeys-Dietz syndromes, osteogenesis imperfecta, neuromuscular disorders and lupus.
Once the diagnosis is settled, the question most refusals come down to is what has been tried.
What has been done about itStep 4
Step 04
An hEDS 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 hEDS, hypermobility 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.
This table isn't a list of treatments you should have had. It shows what the published research covers. It isn't a recommendation for anyone's care, and it says nothing about what would suit you. Questions about your own treatment belong with your GP or treating specialist.
| Element | Published source | |
|---|---|---|
| H | General health | NICE NG193, Chronic pain (primary and secondary) in over 16s, 2021 |
| E | Pain education | Pain neuroscience education for musculoskeletal pain: systematic review, Physiother Theory Pract 2016 |
| A | Self agency | What the evidence shows about patient activation, Health Affairs 2013 |
| P | Physical therapies | Therapeutic exercise for joint hypermobility syndrome: systematic review, Physiotherapy 2014 |
| P | Psychological therapies | Psychological interventions in hypermobility spectrum disorders and Ehlers-Danlos syndrome: systematic review, Rheumatol Int 2024 |
| P | Pharmaceutical management | Pain management in the Ehlers-Danlos syndromes, Am J Med Genet C 2017 |
| P | Procedures | Outcomes of orthopaedic surgery in Ehlers-Danlos syndromes: scoping review, BMC Musculoskelet Disord 2024 |
| S | Social prescribing | Social prescribing: systematic review of the evidence, BMJ Open 2017 |
| S | Sleep | Sleep disturbance and sleep management interventions in hEDS, Arch Phys Med Rehabil 2022, conference abstract |
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 an hEDS file most often has to show.
What it costs to live withSteps 7 and 9
hEDS function is shown best across a whole day and the week that follows, not in one appointment
Function over time · s 24(1)(c)
In hEDS, capacity varies with joint stability, fatigue and, often, autonomic symptoms, and the cost of activity can arrive days 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.
| Contact | What your record usually shows |
|---|---|
| 24 h | Joint pain, subluxation or instability in the joints used; hand fatigue; dizziness on standing where POTS or dysautonomia is diagnosed |
| 72 h | A flare after physical or cognitive exertion; fatigue; reduced standing, sitting or walking tolerance; neck pain and headaches |
| 7 days | Whether joints and energy have returned to their usual state; the pacing, bracing, aids and help that ordinary tasks depended on |
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.
Download the Pain, Sleep and Fatigue DiaryTwo published hEDS decisions show how files like this have fared at the Tribunal.
What the decisions showFrom the index
In two published hEDS decisions, one access request stopped at the treatment record and one support request at who wrote the recommendations
hEDS is in issue in two of the 124 decisions in my index, as at 2 October 2026. The first is about access: the Tribunal accepted the impairments and still could not find them permanent. The second is about supports, after access had been granted.
Treatment record · not permanent
The specialist recommended physiotherapy and exercise but also said nothing would help, and regular exercise hadn't been shown.
Supports · refused
Her practitioners repeated her own list of supports, and no one separated the accepted impairments from her other conditions.
These are published Tribunal decisions, not my clients. They show what two records did and didn't establish. Nothing here predicts any other matter.
There are two ways to start now.
Two ways to start on an hEDS file: the diary, or a free 15-minute call
If the NDIS refused access or a support for hEDS:
Start the Pain, Sleep and Fatigue Diary. One line a day, for four weeks. It records how each day went and the cost that arrives later, and the last page adds it up. It is free, whether or not you ever contact me.
Book a free 15-minute call. Bring your decision letter and we'll work out which requirement your file has to answer, and whether an Evidence Audit would help.
This page sets out my minimum standard for evidence. It is general information, not advice about anyone's treatment and not legal advice. Questions about your own care belong with your GP or treating specialist.