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Determination of Permanent Disability - ME/CFS

We're waiting for Julie Keys to read a recent response and update the status.

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.

foi, National Disability Insurance Agency

Thank you for your email to the National Disability Insurance Agency
(NDIA) Freedom of Information (FOI) team.
Please note: due to a high volume of requests, our ability to respond to
you in a timely manner may be affected. We will action your request as
soon as possible and will endeavour to process your matter within the
legislative deadlines. We may need to seek your agreement to an extension
of time. We appreciate your understanding if this is required.
Participant Information
Did you know the NDIA has other ways to access the documents and
information that we hold?

Participants, Guardians and Nominees can obtain copies of some participant
information through our National Contact Centre (NCC). For more
information about what’s available through the NCC, please contact 1800
800 110.
Please visit our [1]Access to Information webpage to find out more about
accessing information through:

* The [2]Participant Information Access (PIA) scheme
* The [3]Information Publication Scheme (IPS)
* The [4]myplace portal for participants   
* The [5]myplace portal for providers

Access to Data
You can also request data and statistics. Please visit our [6]Data and
insights webpage page for further information.
If you are able to obtain your information from a source listed above, you
can withdraw your FOI request by emailing [7][NDIA request email]

Further Information
Information about how to make an FOI request can be found on our website:
[8]Freedom of Information
Should you have a query unrelated to FOI, please contact the Agency by
email at [9][email address] or via webchat at [10]ndis.gov.au.
Alternatively, you can also contact us by phoning 1800 800 110.
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. 

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References

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1. https://www.ndis.gov.au/about-us/policie...
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2. https://www.ndis.gov.au/about-us/policie...
https://www.ndis.gov.au/about-us/policie...
3. https://www.ndis.gov.au/about-us/policie...
https://www.ndis.gov.au/about-us/policie...
4. https://www.ndis.gov.au/participants/usi...
https://www.ndis.gov.au/participants/usi...
5. https://www.ndis.gov.au/providers/workin...
https://www.ndis.gov.au/providers/workin...
6. https://data.ndis.gov.au/
https://data.ndis.gov.au/
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]

foi, National Disability Insurance Agency

5 Attachments

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.

 

 

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foi, National Disability Insurance Agency

foi would like to recall the message, “Disclosure log request”.
********************************************************************** IMPORTANT: This e-mail is for the use of the intended recipient only and may contain information that is confidential, commercially valuable and/or subject to legal or parliamentary privilege. If you are not the intended recipient you are notified that any review, re-transmission, disclosure, dissemination or other use of, or taking of any action in reliance upon, this information is prohibited and may result in severe penalties. If you have received this e-mail in error please notify the sender immediately and delete all electronic and hard copies of this transmission together with any attachments. Please consider the environment before printing this e-mail **********************************************************************

foi, National Disability Insurance Agency

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

 

 

 

 

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foi, National Disability Insurance Agency

5 Attachments

 

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.

 

 

 

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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

foi, National Disability Insurance Agency

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.

show quoted sections

We don't know whether the most recent response to this request contains information or not – if you are Julie Keys please sign in and let everyone know.