Dear National Disability Insurance Agency,

I request a copy of all documents relating to how the NDIA proposes to measure functional capacity in people with ME/CFS .

Yours faithfully,

Background and References

This information is requested because as is substantiated by research standard functional capacity testing is unsuitable for people with ME/CFS .

Functional capacity assessments normally involve a detailed interview and physical examination regarding a persons capability to carry out a range of everyday physical tasks such as walking, lifting, bending, standing etc– as well as other aspects of your health and disability.

The assessments normally last for at least a couple of hours. In some cases they may take a half or even a full day. Whilst this type of assessment can be helpful in some straightforward conditions, there are a number of problems when it comes to complex medical conditions like ME/CFS.

In relation to ME/CFS, these assessments are often inappropriate and unfit for purpose for the following reasons:

1. They are frequently carried out by health professionals who do not have any practical experience of managing people with ME/CFS and may not be up to date on the management of ME/ CFS – in particular following the recommendations on management in the recent UK NICE guideline or the USA Centre for Disease Control guideline (NOTE in 2019 the NHMRC acknowledged that the Australian ME/CFS Guidelines from 2002 are at odds with medical knowledge and need updating).

2. They may not include all the key symptoms of ME/ CFS that are going to impact and interact on a person’s ability to function.

In particular:
activity-induced fatigue
cognitive dysfunction
dysautonomia: orthostatic
intolerance and PoTS
problems with balance
flu-like symptoms and
generally feeling unwell

3. The physical task assessment is often restricted to whether a person can carry out a particular task on a one off basis and does not ask whether the person can perform the task reliably, repeatedly, safely to themselves and to others, and in a timely manner.

4. There is often a failure to take into account that ME/CFS is a fluctuating medical condition where symptoms and disability impairments increase after overexertion (Post exertional malaise)/

5. The length and intensity of these assessments are not suitable for people with ME/CFS who may not be able to carry out any aspects of the tests.

6. The examinations may involve people being pushed to unacceptable levels of exertion when assessing physical capabilities. This will not only cause post-exertional malaise but can cause further long-term damage to health.

Some of these shortcomings were highlighted in the UK 2022 All Party Parliamentary Group Report on ME. This stated (on page 26) that:
…some health insurers have required people with ME to participate in inappropriate and potentially harmful medical examinations to determine their work
capabilities and assess their claims. These medical evaluations have included the Chronic Pain Abilities Determinant (CPAD) assessment which aims to measure physical and cognitive abilities through a series of tests involving physical exertion.

This type of testing is unacceptable given that any activity
which stretches an ME patient beyond their energy limits can result in long term health damage over and above the short-term symptoms of intense pain
and post-exertional malaise.

Academic paper from Todd Davenport and Margaret Cicolella on the scientific and legal challenges to functional disability assessments in ME/CFS: https://tinyurl.com/bd7cm8wb

Richard Brooks: [email address]

Brian Barr Solicitors website: https://brianbarr.co.uk

Brian Barr test case involving a CPAD assessment: https://tinyurl.com/h6s3ufyw

https://www.preprints.org/manuscript/202...

https://workwellfoundation.org/testing-f...

https://meassociation.org.uk/medical-mat....