Management of Myalgic Encephalomyelitis - Chronic Fatigue Syndrome (ME/CFS)
Dear National Disability Insurance Agency,
I am requesting access under the Freedom of Information Act 1982 (FOI Act), to the following information:
1/ The Technical Advisory Branch compiles research on particular diagnoses and have released some of these under previous FOI requests (namely FOI 23/24-0467 and FOI 21/22-1232). I am looking for these sort of documents regarding the following condition: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS).
2/ I am also requesting a copy of any/all documents/guidance/fact sheets relating to how the NDIA expects ME/CFS to be managed and/or treated.
I ask you to please interpret my request broadly and provide any document that fits the general descriptions above regardless of it’s exact title.
I look forward to your response.
Yours faithfully,
Julie Keys
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:
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You can also request data and statistics. Please visit our [6]Data and
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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.
References
Visible links
1. https://www.ndis.gov.au/about-us/policie...
https://www.ndis.gov.au/about-us/policie...
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]
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).
Charges
We may apply a processing charge to your request and will advise you as
soon as practicable if a charge is payable.
Disclosure Log
Information released under the FOI Act may be published on the NDIA’s
disclosure log located on our website, subject to certain exceptions.
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]
[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
Dear Julie Keys
Thank you for your correspondences dated 17 April 2024 and 23 April 2024,
in which you requested access to documents held by the National Disability
Insurance Agency (NDIA), under the Freedom of Information Act 1982 (FOI
Act).
Scope of your requests
Our reference: FOI 23/24-1127
You have requested access to:
“…the following information:
1/ The Technical Advisory Branch compiles research on particular diagnoses
and have released some of these under previous FOI requests (namely FOI
23/24-0467 and FOI 21/22-1232). I am looking for these sort of documents
regarding the following condition: Myalgic Encephalomyelitis/Chronic
Fatigue Syndrome (ME/CFS).
2/ I am also requesting a copy of any/all documents/guidance/fact sheets
relating to how the NDIA expects ME/CFS to be managed and/or treated.
I ask you to please interpret my request broadly and provide any document
that fits the general descriptions above regardless of it’s exact
title...”
Our reference: FOI 23/24-1128
You have requested access to:
“…a copy of all documents relating to how the NDIA proposes to measure
functional capacity in people with ME/CFS.”
Our reference: FOI 23/24-1134
You have requested access to:
“…a copy of all documents held or used by the NDIA to determine whether
or not a person's myalgic encephalomyelitis (ME) is permanent.
The information requested includes but not be limited to: the drugs,
treatments, management regimes that the persons medical professional is
expected to provide before making the determination that the condition is
permanent.”
Updates
We have consulted with relevant NDIA staff who could be expected to be
able to identify documents within the scope of the above requests,
including staff who are knowledgeable about how to conduct searches of the
NDIA’s systems.
Currently, we are awaiting documents returned by NDIA staff from relevant
line areas following these consultations for the 3 requests above.
Section 24(2) of the FOI Act provides that two or more requests may be
treated as a single request if the agency is satisfied that the requests
relate to the same document or documents (s 24(2)(a)); or the subject
matter is substantially the same for the requests (s 24(2)(b)).
Please be advised, after reviewing the documents returned and depending on
the total number of documents and the total size, we may consider
combining these requests as a single request under s 24(2), particularly,
because there is a clear connection between the subject matter of the
scope and requested documents. This will enable us to address these
requests for information and decision on access effectively.
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.
Kind regards
Ramya
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]
4. https://intranet.ndiastaff.ndia.gov.au/h...
Dear Julie Keys
Thank you for your requests for information.
Please find attached correspondence and documents in relation to your
requests. If you require these in a different format, please let us know.
Please contact us at [1][NDIA request email] if you have any questions or
require help.
Thank you.
Kind regards
Ramya
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
From: foi [6][NDIA request email]
Sent: Thursday, June 13, 2024 10:22 AM
To: '[FOI #11334 email]'
[7][FOI #11334 email]
Cc: foi [8][NDIA request email]
Subject: FOI 23/24-1127, FOI 23/24-1128 and FOI 23/24-1134 – Your requests
for information – Further updates on these FOI requests [SEC=OFFICIAL]
Dear Julie Keys
Thank you for your correspondences dated 17 April 2024 and 23 April 2024,
in which you requested access to documents held by the National Disability
Insurance Agency (NDIA), under the Freedom of Information Act 1982 (FOI
Act).
Scope of your requests
Our reference: FOI 23/24-1127
You have requested access to:
“…the following information:
1/ The Technical Advisory Branch compiles research on particular diagnoses
and have released some of these under previous FOI requests (namely FOI
23/24-0467 and FOI 21/22-1232). I am looking for these sort of documents
regarding the following condition: Myalgic Encephalomyelitis/Chronic
Fatigue Syndrome (ME/CFS).
2/ I am also requesting a copy of any/all documents/guidance/fact sheets
relating to how the NDIA expects ME/CFS to be managed and/or treated.
I ask you to please interpret my request broadly and provide any document
that fits the general descriptions above regardless of it’s exact
title...”
Our reference: FOI 23/24-1128
You have requested access to:
“…a copy of all documents relating to how the NDIA proposes to measure
functional capacity in people with ME/CFS.”
Our reference: FOI 23/24-1134
You have requested access to:
“…a copy of all documents held or used by the NDIA to determine whether
or not a person's myalgic encephalomyelitis (ME) is permanent.
The information requested includes but not be limited to: the drugs,
treatments, management regimes that the persons medical professional is
expected to provide before making the determination that the condition is
permanent.”
Updates
We have consulted with relevant NDIA staff who could be expected to be
able to identify documents within the scope of the above requests,
including staff who are knowledgeable about how to conduct searches of the
NDIA’s systems.
Currently, we are awaiting documents returned by NDIA staff from relevant
line areas following these consultations for the 3 requests above.
Section 24(2) of the FOI Act provides that two or more requests may be
treated as a single request if the agency is satisfied that the requests
relate to the same document or documents (s 24(2)(a)); or the subject
matter is substantially the same for the requests (s 24(2)(b)).
Please be advised, after reviewing the documents returned and depending on
the total number of documents and the total size, we may consider
combining these requests as a single request under s 24(2), particularly,
because there is a clear connection between the subject matter of the
scope and requested documents. This will enable us to address these
requests for information and decision on access effectively.
Further help
Please contact us at [9][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.
Kind regards
Ramya
Senior Freedom of Information Officer
Complaints Management & FOI Branch
General Counsel Division
National Disability Insurance Agency
E [10][NDIA request email]
[11]NDIA logo
[12]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.
[13]Aboriginal and Torres Strait Islander flags graphic
From: foi <[14][NDIA request email]>
Sent: Wednesday, June 12, 2024 4:48 PM
To: '[FOI #11334 email]'
<[15][FOI #11334 email]>
Cc: foi <[16][NDIA request email]>
Subject: FOI 23/24-1127 – Your request for information – Acknowledgement
and an update on this FOI request [SEC=OFFICIAL]
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).
Charges
We may apply a processing charge to your request and will advise you as
soon as practicable if a charge is payable.
Disclosure Log
Information released under the FOI Act may be published on the NDIA’s
disclosure log located on our website, subject to certain exceptions.
If you have any concerns about the publication of information you have
requested, please contact us.
Further help
Please contact us at [17][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 [18][NDIA request email]
[19]NDIA logo
[20]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.
[21]Aboriginal and Torres Strait Islander flags graphic