Treatments Myalgic Encephalomyelitis - also known as ME/CFS

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

2 followers

The request was partially successful.

Dear National Disability Insurance Agency,

I require 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.

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

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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

Thank you for your request of 23 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 24
April 2024 in accordance with section 15(5)(b) of the FOI Act. Therefore,
the due date for a decision on access was 23 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

[5]Aboriginal and Torres Strait Islander flags graphic

-----Original Message-----
From: Julie Keys [6][FOI #11350 email]
Sent: Tuesday, April 23, 2024 10:06 AM
To: foi [7][NDIA request email]
Subject: Freedom of Information request - Treatments Myalgic
Encephalomyelitis - also known as ME/CFS

[You don't often get email from
[8][FOI #11350 email]. Learn why this is
important at [9]https://aka.ms/LearnAboutSenderIdentific... ]

Dear National Disability Insurance Agency,

I require 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.

Yours faithfully,

Julie Keys

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

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[10][FOI #11350 email]

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

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References

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Dear foi,

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 'Treatments Myalgic Encephalomyelitis - also known as ME/CFS'.

This FOI should be extremely easy to answer. The NDIA often refuses people with ME/CFS access to the NDIS on the basis that they have not tried all treatments. We just want to know what those treatments are because the up to date guidelines e.g. the UK NICE Guidelines and the USA Centre for Disease Control state that there are NO treatments for this neurological disability.

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

Yours faithfully,

Julie Keys

Dear foi,

I request an internal review of my request for information on the treatments for ME/CFS that is held by the NDIA .

A number of people attempting to obtain access to the NDIS have been refused on the basis that they have not tried all the treatments available.

I want to know what treatments the NDIA requires a person with ME/CFS to have tried before they may be eligible for the scheme.

The UK NICE Guidelines (2021) and the USA Center for Disease Control and The Mayo Clinic don't have any curative treatments for ME/CFS.

Yours sincerely,

Julie Keys

Dear National Disability Insurance Agency,

Since making this request I have found the TAB reference document at the following location.

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

Hence I will withdraw this request.

Yours faithfully,

Julie Keys

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Dear Julie Keys

Thank you for your email below.

During 2024, you have made three FOI requests to the National Disability
Insurance Agency. These are as follows:

NDIA Date of Nature of request Date
reference request decision
was due
FOI 17 April 1. The Technical Advisory Branch compiles 20 May
23/24-1127 2024 research on particular diagnoses and have 2024
released some of these under previous FOI
requests … I am looking for these sorts
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 <E/CFS to be
managed and/or treated.
FOI 17 April I request a copy of all documents relating to 20 May
23/24-1128 2024 how the NDIA proposes to measure functional 2024
capacity in people with ME/CFS.
FOI 23 April I require a copy of all documents held or 24 May
23/24-1134 2024 used by the NDIA to determine whether or not 2024
a person’s myalgic encephalomyelitis (ME) is
permanent.

Because each of these requests were related to each other, we issued a
single decision in relation to all of them. This decision was sent to you
on 24 July 2024.

As the decision was issued after the date on which each of your requests
ought to have been finalised, the FOI Act provides that we are deemed to
have refused you access to the documents you sought.

One of the effects of our decisions being “deemed” is that you cannot seek
an internal review of the decision we actually made. However, you still
retain your external review rights. Therefore, if you are dissatisfied
with our decision, you can apply to the Office of the Australian
Information Commissioner (OAIC) to seek a review of this decision in
writing, or by using the online merits review form available on the OAIC’s
website at [1]www.oaic.gov.au .

Should you have any questions please contact us at [2][NDIA request email].

Thank you

Kind regards

Ramya [RMO 260]

Senior Freedom of Information Officer

Complaints Management & FOI Branch

General Counsel Division

National Disability Insurance Agency

E [3][NDIA request email]

[4]NDIA logo

[5]LGBTIQA+ rainbow graphic

[6]Aboriginal and Torres Strait Islander flags graphic

-----Original Message-----
From: Julie Keys <[7][FOI #11350 email]>
Sent: Thursday, September 5, 2024 10:32 PM
To: foi <[8][NDIA request email]>
Subject: Internal review of Freedom of Information request - Treatments
Myalgic Encephalomyelitis - also known as ME/CFS

[You don't often get email from
[9][FOI #11350 email]. Learn why this is
important at [10]https://aka.ms/LearnAboutSenderIdentific... ]

Dear foi,

I request an internal review of my request for information on the
treatments for ME/CFS that is held by the NDIA .

A number of people attempting to obtain access to the NDIS have been
refused on the basis that they have not tried all the treatments
available.

I want to know what treatments the NDIA requires a person with ME/CFS to
have tried before they may be eligible for the scheme.

The UK NICE Guidelines (2021) and the USA Center for Disease Control and
The Mayo Clinic don't have any curative treatments for ME/CFS.

Yours sincerely,

Julie Keys

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

Dear Julie Keys

Freedom of Information Request: Acknowledgement

Thank you for your request of 23 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 24

April 2024 in accordance with section 15(5)(b) of the FOI Act. Therefore,

the due date for a decision on access was 23 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

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

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

[11][FOI #11350 email]

[12]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. http://www.oaic.gov.au/
2. mailto:[NDIA request email]
3. mailto:[NDIA request email]
5. https://intranet.ndiastaff.ndia.gov.au/h...
7. mailto:[FOI #11350 email]
8. mailto:[NDIA request email]
9. mailto:[FOI #11350 email]
10. https://aka.ms/LearnAboutSenderIdentific...
11. mailto:[FOI #11350 email]
12. https://www.righttoknow.org.au/help/offi...

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Treatments Myalgic Encephalomyelitis - also known as ME/CFS

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