ME/CFS - drugs Australians are expected to take

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

1 follower

National Disability Insurance Agency did not have the information requested.

Dear National Disability Insurance Agency,

I have read the TAB reference document for ME/CFS found at.

https://www.righttoknow.org.au/request/t...

I request the information held by the TAB and/or other NDIA departments that lists the drugs that a person with ME/CFS is expected to take in order to be considered "fully treated" by the NDIA.

The TAB document refers to a number of drugs that are mentioned in international guidelines e.g. the 2021 UK-NICE Guidelines, USA Centre for Disease Control and The Mayo Clinic websites.

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:

* 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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Dear Julie Keys

Freedom of Information Request: Acknowledgement and Extension of time

Thank you for your request of 06 September 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 request the information held by the TAB and/or other NDIA
departments that lists the drugs that a person with ME/CFS is expected to
take in order to be considered "fully treated" by the NDIA.

The TAB document refers to a number of drugs that are mentioned in
international guidelines e.g. the 2021 UK-NICE Guidelines, USA Centre
for Disease Control and The Mayo Clinic websites...”

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 07 September 2024. This
30-day period expires on 07 October 2024.

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. 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 06
November 2024.

If you do not agree and we are unable to process your request within the
30-day period expiring on 07 October 2024, 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 Wednesday 02 October 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].

Kind regards

Megan

Freedom of Information Officer

Governance, Risk & Legal - Complaints Management and FOI

General Counsel Division

National Disability Insurance Agency

E [2][email address]

[3]NDIA logo

[4]LGBTIQA+ rainbow graphic

[5]Aboriginal and Torres Strait Islander flags graphic

-----Original Message-----
From: Julie Keys [6][FOI #12017 email]
Sent: Friday, September 6, 2024 9:20 AM
To: foi [7][NDIA request email]
Subject: Freedom of Information request - ME/CFS - drugs Australians are
expected to take

[You don't often get email from
[8][FOI #12017 email]. Learn why this is
important at [9]https://aka.ms/LearnAboutSenderIdentific... ]

Dear National Disability Insurance Agency,

I have read the TAB reference document for ME/CFS found at.

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

I request the information held by the TAB and/or other NDIA departments
that lists the drugs that a person with ME/CFS is expected to take in
order to be considered "fully treated" by the NDIA.

The TAB document refers to a number of drugs that are mentioned in
international guidelines e.g. the 2021 UK-NICE Guidelines, USA Centre
for Disease Control and The Mayo Clinic websites.

Yours faithfully,

Julie Keys

-------------------------------------------------------------------

Please use this email address for all replies to this request:

[11][FOI #12017 email]

Is [12][NDIA request email] the wrong address for Freedom of Information
requests to National Disability Insurance Agency? If so, please contact us
using this form:

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

This request has been made by an individual using Right to Know. This
message and any reply that you make will be published on the internet.
More information on how Right to Know works can be found at:

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

Please note that in some cases publication of requests and responses will
be delayed.

If you find this service useful as an FOI officer, please ask your web
manager to link to us from your organisation's FOI page.

-------------------------------------------------------------------

References

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2. mailto:[email address]
6. mailto:[FOI #12017 email]
7. mailto:[NDIA request email]
8. mailto:[FOI #12017 email]
9. https://aka.ms/LearnAboutSenderIdentific...
10. https://www.righttoknow.org.au/request/t...
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Dear foi,

I do NOT require the release of the names or identifying information of any NDIA staff.

I do however require the names of any person or persons who have been advising them in relation to the treatment and management of ME/CFS to be left in the documents provided.

Yours sincerely,

Julie Keys

Dear foi,

To clarify my request

I require the information held by the NDIA that was used to develop the list of drugs in the 2024 TAB guideline.

The TAB document for ME/CFS refers to a number of drugs however people with ME/CFS are intolerant to many medications and these drugs have NOT been approved for the treatment or management of ME/CFS in Australia.

I am of the opinion that they relevant documents/information date from 2023 and I am happy to restrict the FOI research to information to hand from 1 January 2023 to current.

Yours sincerely,

Julie Keys

Dear foi,

To clarify and explain the need for the information requested.

I am seeking the evidence basis of the drugs listed in the NDIA's 2024 TAB report for people with the neurological condition ME/CFS from 1 January 2023 to current.

It is of note that participants on the NDIS may only access evidence based therapies with their NDIS funds. In contrast it appears that in order to gain access to the NDIS people with ME/CFS are required to trial non evidence based drugs.

Yours sincerely,

Julie Keys

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Dear Julie Keys

I am following up with you regarding our request for an extension of time
to manage your matter.

I note I have only recently been allocated carriage of your request and
the original due date for a decision is Monday, 7 October 2024. I advise
that I am working from the Australian Capital Territory, and 7 October
2024 is a public holiday for the Labour Day. As such, and in accordance
with section 36(2) of the Acts Interpretation Act 1901, which states: if
an Act requires a thing to be done by a deadline that falls on a public
holiday or weekend, it can legitimately be done the next working day.
Therefore, your application is now due on Tuesday, 8 October 2024.

As it is unlikely I will be able to complete document searches and a
decision on access by today 8 October 2024, which is the original due date
of your FOI request, I respectfully request you agree to the granting of a
21-day extension under section 15AA of the FOI Act, making the new due
date 28 October 2024.

Your agreement to the extension will mean your matter will not become
deemed and as a result your internal review rights will be upheld.

Could you please respond at your earliest convenience, or before 11.59pm
on 8 October 2024 and advise if you are agreeable or not?

I sincerely apologise for the tight timeframe for your response.

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

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

[5]Aboriginal and Torres Strait Islander flags graphic

-----Original Message-----
From: Julie Keys <[6][FOI #12017 email]>
Sent: Wednesday, October 2, 2024 8:58 PM
To: foi <[7][NDIA request email]>
Subject: Re: FOI 24/25-0320 - Your request for information -
Acknowledgment and Extension of time [SEC=OFFICIAL]

[You don't often get email from
[8][FOI #12017 email]. Learn why this is
important at [9]https://aka.ms/LearnAboutSenderIdentific... ]

Dear foi,

To clarify and explain the need for the information requested.

I am seeking the evidence basis of the drugs listed in the NDIA's 2024
TAB report for people with the neurological condition ME/CFS from 1
January 2023 to current.

It is of note that participants on the NDIS may only access evidence
based therapies with their NDIS funds. In contrast it appears that in
order to gain access to the NDIS people with ME/CFS are required to trial
non evidence based drugs.

Yours sincerely,

Julie Keys

-----Original Message-----

Dear Julie Keys

Freedom of Information Request: Acknowledgement and Extension of time

Thank you for your request of 06 September 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 request the information held by the TAB and/or other NDIA

departments that lists the drugs that a person with ME/CFS is expected to

take in order to be considered "fully treated" by the NDIA.

The TAB document refers to a number of drugs that are mentioned in

international guidelines e.g. the 2021 UK-NICE Guidelines, USA Centre

for Disease Control and The Mayo Clinic websites...”

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 07 September 2024. This

30-day period expires on 07 October 2024.

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. 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 06

November 2024.

If you do not agree and we are unable to process your request within the

30-day period expiring on 07 October 2024, 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 Wednesday 02 October 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].

Kind regards

Megan

Freedom of Information Officer

Governance, Risk & Legal - Complaints Management and FOI

General Counsel Division

National Disability Insurance Agency

E [2][email address]

[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

-------------------------------------------------------------------

Please use this email address for all replies to this request:

[10][FOI #12017 email]

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

Please note that in some cases publication of requests and responses will
be delayed.

If you find this service useful as an FOI officer, please ask your web
manager to link to us from your organisation's FOI page.

-------------------------------------------------------------------

References

Visible links
1. mailto:[NDIA request email]
2. mailto:[NDIA request email]
4. https://intranet.ndiastaff.ndia.gov.au/h...
6. mailto:[FOI #12017 email]
7. mailto:[NDIA request email]
8. mailto:[FOI #12017 email]
9. https://aka.ms/LearnAboutSenderIdentific...
10. mailto:[FOI #12017 email]
11. https://www.righttoknow.org.au/help/offi...

hide quoted sections

Dear foi,

I agree to an extension of time for the provision of the requested information.

Please advise if you have any questions about the information that I have requested.

Yours sincerely,

Julie Keys

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FOI 24.25 0320 Decision Notice of Decision.pdf

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Dear Julie Keys

Thank you for your request for information.

Please find attached correspondence in relation to your request. If you
require this in a different format, please let us know.

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

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

[5]Aboriginal and Torres Strait Islander flags graphic

-----Original Message-----
From: Julie Keys <[FOI #12017 email]>
Sent: 08 October 2024 15:15
To: foi <[NDIA request email]>
Subject: Re: FOI 24/25-0320 - Your request for information - Extension of
time - Please respond before 11.59pm today (8 October 2024) [SEC=OFFICIAL]

Dear foi,

I agree to an extension of time for the provision of the requested
information.

Please advise if you have any questions about the information that I have
requested.

Yours sincerely,

Julie Keys

From: foi <[NDIA request email]>
Sent: Tuesday, 8 October 2024 1:55 PM
To: '[FOI #12017 email]'
<[FOI #12017 email]>
Cc: foi <[NDIA request email]>
Subject: FOI 24/25-0320 - Your request for information - Extension of time
- Please respond before 11.59pm today (8 October 2024) [SEC=OFFICIAL]

Dear Julie Keys

I am following up with you regarding our request for an extension of time
to manage your matter.

Your agreement to the extension will mean your matter will not become
deemed and as a result your internal review rights will be upheld.

Could you please respond at your earliest convenience, or before 11.59pm
on 8 October 2024 and advise if you are agreeable or not?

I sincerely apologise for the tight timeframe for your response.

Please contact us at [6][NDIA request email] if you have any questions or
require help.

Kind regards

Ramya

Senior Freedom of Information Officer

Complaints Management & FOI Branch

General Counsel Division

National Disability Insurance Agency

E [7][NDIA request email]

[8]NDIA logo

[9]LGBTIQA+ rainbow graphic

[10]Aboriginal and Torres Strait Islander flags graphic

-----Original Message-----
From: Julie Keys <[11][FOI #12017 email]>
Sent: Wednesday, October 2, 2024 8:58 PM
To: foi <[12][NDIA request email]>
Subject: Re: FOI 24/25-0320 - Your request for information -
Acknowledgment and Extension of time [SEC=OFFICIAL]

[You don't often get email from
[13][FOI #12017 email]. Learn why this is
important at [14]https://aka.ms/LearnAboutSenderIdentific... ]

Dear foi,

To clarify and explain the need for the information requested.

I am seeking the evidence basis of the drugs listed in the NDIA's 2024
TAB report for people with the neurological condition ME/CFS from 1
January 2023 to current.

It is of note that participants on the NDIS may only access evidence
based therapies with their NDIS funds. In contrast it appears that in
order to gain access to the NDIS people with ME/CFS are required to trial
non evidence based drugs.

Yours sincerely,

Julie Keys

-----Original Message-----

Dear Julie Keys

Freedom of Information Request: Acknowledgement and Extension of time

Thank you for your request of 06 September 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 request the information held by the TAB and/or other NDIA

departments that lists the drugs that a person with ME/CFS is expected to

take in order to be considered "fully treated" by the NDIA.

The TAB document refers to a number of drugs that are mentioned in

international guidelines e.g. the 2021 UK-NICE Guidelines, USA Centre

for Disease Control and The Mayo Clinic websites...”

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 07 September 2024. This

30-day period expires on 07 October 2024.

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. 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 06

November 2024.

If you do not agree and we are unable to process your request within the

30-day period expiring on 07 October 2024, 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 Wednesday 02 October 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].

Kind regards

Megan

Freedom of Information Officer

Governance, Risk & Legal - Complaints Management and FOI

General Counsel Division

National Disability Insurance Agency

E [2][email address]

[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

-------------------------------------------------------------------

Please use this email address for all replies to this request:

[15][FOI #12017 email]

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

Please note that in some cases publication of requests and responses will
be delayed.

If you find this service useful as an FOI officer, please ask your web
manager to link to us from your organisation's FOI page.

-------------------------------------------------------------------

References

Visible links
1. mailto:[NDIA request email]
2. mailto:[NDIA request email]
4. https://intranet.ndiastaff.ndia.gov.au/h...
6. mailto:[NDIA request email]
7. mailto:[NDIA request email]
9. https://intranet.ndiastaff.ndia.gov.au/h...
11. mailto:[FOI #12017 email]
12. mailto:[NDIA request email]
13. mailto:[FOI #12017 email]
14. https://aka.ms/LearnAboutSenderIdentific...
15. mailto:[FOI #12017 email]
16. https://www.righttoknow.org.au/help/offi...

hide quoted sections

Dear foi,

I note that the only information on drugs Australians may be expected to take are detailed in the 2024 TAB document Myalgic encephalomyelitis / Chronic fatigue syndrome’ found at this link https://www.righttoknow.org.au/request/t....

Yours sincerely,

Julie Keys

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ME/CFS - drugs Australians are expected to take

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