Determination of Permanent Disability - ME/CFS
Dear National Disability Insurance Agency,
The NDIA's TAB has a reference document that can be found at:
https://www.righttoknow.org.au/request/t.
This TAB document is silent on how permanency of a person severely impaired by ME/CFS is to be established.
I request information held by the NDIA relating to how the staff making access decisions, or reviewing participant's plans, determine whether or not a person is permanently impaired by ME/CFS.
*I request the information held from now back to 2022.
Yours faithfully,
Julie Keys
Note I do not require the names of the NDIA staff just their job titles.
Thank you for your email to the National Disability Insurance Agency
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Kind regards
Freedom of Information Team
Complaints Management & FOI Branch
General Counsel Division
National Disability Insurance Agency
E [11][NDIA request email]
The NDIA acknowledges the Traditional Custodians of Country throughout
Australia and their continuing connection to land, sea and community. We
pay our respects to them and their cultures and to Elders past, present
and emerging.
References
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6. https://data.ndis.gov.au/
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7. mailto:[NDIA request email]
mailto:[NDIA request email]
8. https://www.ndis.gov.au/about-us/policie...
https://www.ndis.gov.au/about-us/policie...
9. mailto:[email address]
mailto:[email address]
10. https://www.ndis.gov.au/
https://www.ndis.gov.au/
11. mailto:[NDIA request email]
Cindy Nutley
Senior Freedom of Information Officer
Complaints Management & FOI Branch
General Counsel Division
National Disability Insurance Agency
E [1][email address]
[2]NDIA logo
[3]LGBTIQA+ rainbow graphic
The NDIA acknowledges the Traditional Custodians of Country throughout
Australia and their continuing connection to land, sea and community. We
pay our respects to them and their cultures and to Elders past, present
and emerging.
[4]Aboriginal and Torres Strait Islander flags graphic
The NDIA acknowledges the Traditional Custodians of Country throughout
Australia and their continuing connection to land, sea and community. We
pay our respects to them and their cultures and to Elders past, present
and emerging.
foi would like to recall the message, “Disclosure log request”.
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Good morning Julie,
A few minutes ago I sent you an email in error, that email did not include
the correct outgoing message and included my personal signature.
Please delete that mail, and my colleague Poojan will resend the email
with all the information you have requested.
Apologies for this error and any confusion.
Thanks and regards
Cindy
Dear Julie Keys
Thank you for your below request seeking access to documents from the
Agency’s Disclosure Log.
Please find attached the following documents:
· 23/24-1127, 23/24-1128, 23/24-1134 – Document – Disclosure Log.
· 22/23-1186 – Document – Disclosure Log.
Kind regards,
Poojan
Freedom of Information Team
Governance, Risk & Legal - Complaints Management and FOI.
General Counsel Division
National Disability Insurance Agency
E [1][NDIA request email]
[2]NDIA logo
[3]LGBTIQA+ rainbow graphic
The NDIA acknowledges the Traditional Custodians of Country throughout
Australia and their continuing connection to land, sea and community. We
pay our respects to them and their cultures and to Elders past, present
and emerging.
Dear foi,
Thank you for providing me with the 2019 TAT advice and the 2020 submission made to the NDIA by ME/CFS Australia in 2020.
In 2021 the UK NICE Guideline was updated and that the USA Centre for Disease Clinic, the Mayo Clinic, the Bateman Horne Clinic, the Workwell Foundation et al have all updated their guidelines and advice for managing ME/CFS - these guidelines warn of the dangers of graded exercise therapy (GET) due to the harm (often severe) that it typically causes a person with ME/CFS.
The TAT advice provided predates the submission by ME/CFS Australia's and the major changes in recommendations for managing ME/CFS as per the above mentioned guidelines.
Can you provide me with:
A copy of correspondence originating from the NDIA as a result of the 2020 ME/CFS Australia submission.
A copy of how the NDIA planers are to determine the permanency or otherwise of the impairments caused by the neurological condition ME/CFS (myalgic encephalomyelitis).
Yours sincerely,
Julie Keys
Dear foi
Please note my concern that the TAT information provided to date is at odds with current medical and clinical knowledge about measuring the functional capacity of a person with ME/CFS and how to manage this disability.
ChatGPT is aligned with the UK NICE, USA CDC, Mayo Clinic, Workwell Foundation, Batman Horne Centre...et al it is of concern that the NDIA appears reliant on the views of Andrew Lloyd despite his lack of standing in the ME/CFS field, his vested interests in promoting his and his wifes fatigue clinics and his own evidence out of the fatigue (NOT the subset of people with fatigue who actually have ME/CFS clinics) that the majority of participants did not benefit.
https://www.healthrising.org/blog/2015/0...
https://virology.ws/2018/04/04/trial-by-...
"Measuring functional capacity in individuals with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) can be challenging due to the variability and complexity of symptoms, such as post-exertional malaise (PEM), cognitive impairment, and orthostatic intolerance. Here are some objective and validated methods commonly used in clinical and research settings:
Cardiopulmonary Exercise Testing (CPET): CPET can measure peak oxygen uptake (VO₂ max) and anaerobic threshold, providing an objective assessment of physical function. In ME/CFS, a 2-day CPET is sometimes used, where the first test day measures baseline function and the second day measures PEM. This test may demonstrate significant decreases in performance on day two in people with ME/CFS, which is a hallmark of the illness.
6-Minute Walk Test (6MWT): This submaximal test involves measuring the distance a person can walk on a flat, straight path in six minutes. It is an accessible, simple way to assess functional endurance and has been adapted for ME/CFS, although it may not capture PEM without multiple sessions or follow-up evaluations.
Activity Trackers: Wearable devices like accelerometers or activity trackers (e.g., ActiGraph) can provide continuous data on physical activity patterns, including step counts, sedentary time, and variability in activity levels over days or weeks. This is especially useful for capturing the fluctuations in energy and PEM effects associated with ME/CFS.
Patient-Reported Outcome Measures (PROMs): Tools like the SF-36 Health Survey or the DePaul Symptom Questionnaire can capture physical function and quality of life across domains important to people with ME/CFS. Although these are self-reported, combining them with objective measures helps provide a fuller picture of functional capacity.
Handgrip Strength Test: This simple test measures muscle strength, which may be reduced in ME/CFS and can indicate muscle fatigue. While limited in scope, it can be a helpful adjunct to more comprehensive assessments.
Neurocognitive Testing: If cognitive function is also a concern, objective tests of cognitive function (e.g., attention, memory, processing speed) can be used to evaluate cognitive impairment, a significant part of ME/CFS.
No single measure fully captures the complexity of ME/CFS, but combining these tests can provide a well-rounded view of functional capacity and limitations. Importantly, all tests should consider the risk of PEM, so pacing and post-test recovery protocols are essential.
Managing ME/CFS
Managing ME/CFS effectively requires a combination of strategies tailored to each person’s symptoms, lifestyle, and needs, as there is no one-size-fits-all treatment. The primary goal is to reduce symptoms and improve quality of life by pacing energy use, managing symptoms, and, where possible, addressing specific triggers or underlying conditions. Here are the main approaches widely recommended for ME/CFS management:
Pacing and Energy Conservation:
Pacing, also known as activity management, is essential in ME/CFS. This involves balancing activities with rest to avoid post-exertional malaise (PEM), where symptoms worsen after even minor exertion.
The “energy envelope” approach helps people stay within their energy limits, adapting their daily routines to prevent overexertion and reduce the severity of PEM.
Tools like activity diaries or wearable fitness trackers can help identify energy limits and patterns in symptoms.
Symptom Management:
Pain: Medications such as over-the-counter pain relievers, low-dose antidepressants, or anticonvulsants (like gabapentin) can help manage chronic pain, though results vary.
Sleep Disturbances: Sleep aids (like melatonin, sleep hygiene techniques, or medications if prescribed) can address insomnia or unrefreshing sleep, common in ME/CFS.
Orthostatic Intolerance: Techniques like increasing salt and fluid intake, using compression garments, and sometimes medications like beta-blockers can help manage symptoms of orthostatic intolerance, such as dizziness or heart palpitations.
Cognitive Issues (Brain Fog): Cognitive aids (e.g., memory tools, routines), and ensuring adequate rest between mentally demanding tasks can help with cognitive issues.
Lifestyle Adjustments:
Flexible Work and Study Arrangements: For those who work or study, adjustments like reduced hours, remote work, or extended deadlines can help manage energy.
Diet and Nutrition: While no specific diet treats ME/CFS, a balanced diet may help prevent blood sugar dips that can worsen fatigue. Some people find symptom relief with dietary adjustments, like reducing processed foods or identifying food intolerances.
Mental Health Support: Chronic illnesses can impact mental health, so counseling or therapy can be helpful, especially for coping with the challenges and uncertainties of ME/CFS.
Physical Activity and Exercise:
Gentle Stretching or Range of Motion Exercises: These can prevent muscle deconditioning without triggering PEM. Exercise should be approached cautiously, as overexertion can worsen symptoms. Some people benefit from very gradual, supervised physical therapy focused on flexibility or low-intensity activities, but any increase in activity should be carefully monitored.
Medical and Holistic Interventions:
Medications: While there’s no FDA-approved drug specifically for ME/CFS, medications may target specific symptoms like pain, sleep, and orthostatic intolerance. Some off-label treatments, like low-dose naltrexone (LDN) or immune-modulating drugs, are being explored in clinical trials.
Complementary Therapies: Techniques like acupuncture, mindfulness, or meditation can help some people manage pain, anxiety, or fatigue.
Support Networks and Education:
Joining ME/CFS support groups, either online or in person, can provide valuable support, shared experiences, and resources. Education about the condition, both for the person with ME/CFS and those close to them, can foster understanding and provide helpful coping strategies.
In ME/CFS, individual approaches tend to work best, with close attention to daily fluctuations and self-monitoring. Collaborating with a healthcare provider knowledgeable in ME/CFS can help tailor these strategies effectively.
I am seeking correspondence post the TAT report of 2018 that mysteriously has included ME/CFS in an advice on central sensitivity disorders and FND.
ie how does the NDIA currently determine permanancy?
Yours sincerely,
Julie Keys
Dear Julie,
Thank you for your email, and the feedback relating to the information previously provided.
I note that at the end of your email you have made a request for further information. This will need to be completed as a new FOI request, and to be registered you will first need to confirm that you are requesting the following under the FOI Act:
"I am seeking correspondence post the TAT report of 2018 that mysteriously has included ME/CFS in an advice on central sensitivity disorders and FND. ie how does the NDIA currently determine permanency"
If there is anything further I can assist with, please don't hesitate to reach out.
Kind regards,
Rebecca
She/Her
Team Leader, Information Access – Triage and Early Resolution
Complaints Management and FOI Branch
National Disability Insurance Agency
[NDIA request email]
The NDIA acknowledges the Traditional Custodians of Country throughout Australia and their continuing connection to land, sea and community. We pay our respects to them and their cultures and to Elders past, present and emerging.
Dear foi,
Thank you for the information provided however it does not contain information on how the NDIA determines permanency for a person with severe impairments caused by ME/CFS.
Yours sincerely,
Julie Keys
Dear Julie,
Thank you for clarifying. However at this stage this is still not a valid request. Please confirm if you are requesting access to the following under the FOI Act:
"I am seeking correspondence post the TAT report of 2018 that mysteriously has included ME/CFS in an advice on central sensitivity disorders and FND. ie how does the NDIA currently determine permanency for a person with severe impairments caused by ME/CFS."
Kind regards,
Rebecca
She/Her
Team Leader, Information Access - Triage and Early Resolution
Complaints Management and FOI Branch
National Disability Insurance Agency
[NDIA request email]
The NDIA acknowledges the Traditional Custodians of Country throughout Australia and their continuing connection to land, sea and community. We pay our respects to them and their cultures and to Elders past, present and emerging.
Dear foi,
I reiterate my request for information on how NDIA staff making access decisions, or reviewing participant's plans, determine whether or not a person is permanently impaired by ME/CFS.
NOTE that the NDIA's TAB has a reference document that can be found at:
https://www.righttoknow.org.au/request/t. I do not require a copy of this document which is silent on how the permanency of a person severely impaired by ME/CFS is to be established.
Note I do not require the names of the NDIA staff just their job titles.
*I request the information held from 2022 to current.
Yours faithfully,
Julie Keys
Dear Julie Keys
We are writing to advise your request for information (below) is not a
valid FOI request under s15 of the Freedom of Information Act 1982, and as
such we are unable to commence processing it.
To be valid, a FOI request must:
o be in writing
o state the request is an application for the purposes of the FOI Act
o provide information about the document(s) to assist us to process your
request
o provide an address for reply.
As such, if you would like your request to be processed under FOI, we
require your written instruction to process your request under the FOI
Act.
Please reply to this email advising whether you would like to proceed to
have your request processed under the FOI Act.
Once we receive confirmation we will begin to process the request.
Unfortunately, if we do not receive this confimation in writing from you,
the FOI team will be unable to process your request.
Further information can be found on our [1]Freedom of Information webpage.
Should you have any questions please contact us at [2][NDIA request email].
Kind regards
Tanya
Triage Officer
Complaints Management & FOI Branch
General Counsel Division
National Disability Insurance Agency
E [3][NDIA request email]
[4]NDIA logo
[5]LGBTIQA+ rainbow graphic
The NDIA acknowledges the Traditional Custodians of Country throughout
Australia and their continuing connection to land, sea and community. We
pay our respects to them and their cultures and to Elders past, present
and emerging.
[6]Aboriginal and Torres Strait Islander flags graphic
Dear foi,
Dear National Disability Insurance Agency,
I request information held by the NDIA relating to how the staff making access decisions, or those reviewing a participant's plans, determine whether or not a person is permanently impaired by ME/CFS.
Please note that I do not need a copy of the The NDIA's TAB reference document for ME/CFS that can be found at https://www.righttoknow.org.au/request/t.
I request the information/guidelines that are currently being used.
Yours faithfully,
Julie Keys
Note I do not require the names of the NDIA staff just their job titles.
Dear Julie Keys
Freedom of Information Request: Acknowledgement
Thank you for your request of 2 December 2024, made under the Freedom of
Information Act 1982 (FOI Act), for copies of documents held by the
National Disability Insurance Agency (NDIA).
Scope of your Request
You have requested access to:
“…I am seeking correspondence post the TAT report of 2018 that
mysteriously has included ME/CFS in an advice on central sensitivity
disorders and FND. ie how does the NDIA currently determine permanency for
a person with severe impairments caused by ME/CFS…”
Irrelevant Information
Section 22 of the FOI Act allows an Agency to redact information from
documents if that information would reasonably be regarded as irrelevant
to a request for access.
Given the nature of your request, it does not seem that NDIA staff
members’ surnames and contact details would be relevant to you. Can you
please send me a reply email confirming that such details are irrelevant
to your request for access?
Processing Timeframes
In accordance with section 15(5)(b) of the FOI Act, a 30-day statutory
period for processing your request commenced from 3 December 2024. This
30-day period expires on 2 January 2025.
The 30-day period can be extended in a number of ways, including with your
agreement.
Unfortunately, it is currently taking us a little longer than 30 days to
process FOI requests due to a very high volume. I am therefore seeking
your agreement to a 30-day extension of time under section 15AA of the FOI
Act. If you agree to this extension, the new due date for us to decide on
your request will be 1 February 2025.
If you do not agree and we are unable to process your request within the
30-day period, we will be deemed to have refused your request and you will
not have a right to seek internal review of that decision. You will,
however, retain your right to external review by the Australian
Information Commissioner.
Please let us know if you agree by Thursday 12 December 2024.
Disclosure Log
Subject to certain exceptions, documents released under the FOI Act will
be published on the NDIA’s disclosure log located on our website.
If you have any concerns about the publication of the documents you have
requested, please contact me.
Next steps
Your request will be allocated to an authorised FOI decision-maker. The
decision-maker may need to contact you to discuss a range of matters,
including refining the scope of your request.
We will contact you using the email address you have provided. Please
advise if you would prefer us to use an alternative means of contact.
In the meantime, if you have any questions or need help, please contact us
at [1][NDIA request email].
Regards
Cindy – CGN062
Senior Freedom of Information Officer
Complaints Management & FOI Branch
General Counsel Division
National Disability Insurance Agency
E [2][NDIA request email]
[3]NDIA logo
[4]LGBTIQA+ rainbow graphic
The NDIA acknowledges the Traditional Custodians of Country throughout
Australia and their continuing connection to land, sea and community. We
pay our respects to them and their cultures and to Elders past, present
and emerging.
[5]Aboriginal and Torres Strait Islander flags graphic
References
Visible links
1. mailto:[NDIA request email]
2. mailto:[NDIA request email]