How will functional capacity of people with ME/CFS be measured by the NDIA?

Julie Keys made this Freedom of Information request to National Disability Insurance Agency

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Waiting for an internal review by National Disability Insurance Agency of their handling of this request.

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....

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Kind regards

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Complaints Management & FOI Branch

General Counsel Division

National Disability Insurance Agency

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References

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Dear Julie Keys

Freedom of Information Request: Acknowledgement

Thank you for your request of 17 April 2024, made under the Freedom of
Information Act 1982 (FOI Act), for copies of documents held by the
National Disability Insurance Agency (NDIA).

We apologise for our delay in communications.

Processing timeframes

A 30-day statutory period for processing your request commenced from 18
April 2024 in accordance with section 15(5)(b) of the FOI Act. Therefore,
the due date for a decision on access was 17 May 2024. However, I note
this time has lapsed and as a result your request is taken to be a deemed
refusal under section 15AC of the FOI Act.

We sincerely apologise for this delay. We confirm we are continuing to
process your request for information and will ensure to provide you the
documents as soon as practical.

We have consulted with relevant NDIA staff who could be expected to be
able to identify documents within the scope of the request, including
staff who are knowledgeable about how to conduct searches of the NDIA’s
systems.

At this stage, we are awaiting documents returned after consultations with
NDIA staff from relevant line areas.

Unless you advise otherwise, we will take it that you agree to the names
and contact details of NDIA staff being excluded from the scope of your
request (that is, the information will be treated as irrelevant).

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We may apply a processing charge to your request and will advise you as
soon as practicable if a charge is payable.

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If you have any concerns about the publication of information you have
requested, please contact us.

Further help

Please contact us at [1][NDIA request email] if you have any questions or need
help.

We will contact you using the email address you provided. Please advise if
you would prefer us to use an alternative means of contact.

Thank you for your patience.

Kind regards

Ramya

Senior Freedom of Information Officer

Complaints Management & FOI Branch

General Counsel Division

National Disability Insurance Agency

E [2][NDIA request email]

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-----Original Message-----
From: Julie Keys <[FOI #11335 email]>
Sent: Wednesday, April 17, 2024 2:52 PM
To: foi <[NDIA request email]>
Subject: Freedom of Information request - How will functional capacity of
people with ME/CFS be measured by the NDIA?

[You don't often get email from
[6][FOI #11335 email]. Learn why this is
important at [7]https://aka.ms/LearnAboutSenderIdentific... ]

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:
[8]https://aus01.safelinks.protection.outlo...

Richard Brooks: [9][email address]

Brian Barr Solicitors website:
[10]https://aus01.safelinks.protection.outlo...

Brian Barr test case involving a CPAD assessment:
[11]https://aus01.safelinks.protection.outlo...

[12]https://aus01.safelinks.protection.outlo...

[13]https://aus01.safelinks.protection.outlo...

[14]https://aus01.safelinks.protection.outlo....

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References

Visible links
1. mailto:[NDIA request email]
2. mailto:[NDIA request email]
4. https://intranet.ndiastaff.ndia.gov.au/h...
6. mailto:[FOI #11335 email]
7. https://aka.ms/LearnAboutSenderIdentific...
8. https://tinyurl.com/bd7cm8wb
9. mailto:[email address]
10. https://brianbarr.co.uk/
11. https://tinyurl.com/h6s3ufyw
12. https://www.preprints.org/manuscript/202...
13. https://workwellfoundation.org/testing-f...
14. https://meassociation.org.uk/medical-mat...
15. mailto:[FOI #11335 email]
16. mailto:[NDIA request email]
17. https://www.righttoknow.org.au/change_re...
18. https://www.righttoknow.org.au/help/offi...

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Dear foi,

Can you please help me obtain the requested information.

Yours sincerely,

Julie Keys

Dear National Disability Insurance Agency,

Please pass this on to the person who conducts Freedom of Information reviews.

I am writing to request an internal review of National Disability Insurance Agency's handling of my FOI request 'How will functional capacity of people with the neurological condition ME/CFS be measured by the NDIA?'.

Note that:
1/ Centrelink updated its functional capacity to include a Table that relates to people with ME/CFS and similar disabilities.
2/ It is possible to objectively measure physical functional capacity and brain function in people with ME/CFS as is done at the Workwell Foundation in the USA. (note however the test is extremely onerous and doing the test itself causes an increase in disability for weeks/sometimes months).

A full history of my FOI request and all correspondence is available on the Internet at this address: https://www.righttoknow.org.au/request/h...

Yours faithfully,

Julie Keys

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