ME/CFS - response to the NHMRC's 2019 recommendation to update the 2002 guidelines - a Freedom of Information request to National Health and Medical Research Council

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Dear Julie

Re - Freedom of Information Request: No. 2024/25-002

I refer to your request to the National Health and Medical Research
Council (NHMRC) under the [1]Freedom of Information Act 1982 (Cth) (FOI
Act) seeking:

The documents/information/phone calls/emails/notes relating to the
recommendation made by the NHMRC in 2019 to update Australia's 2002
guidelines for ME/CFS.

To clarify my request relates to information on this topic that post dates
the publication of the NHMRC's recommendation to update the guidelines in
2019 until current date.

Scope of your request

NHMRC is seeking your agreement to further clarify the scope of your
request.

By providing more specific information about exactly which aspect you are
interested in, NHMRC will be able to pinpoint the relevant records more
quickly and avoid using excessive resources to process records that you
are not interested in (under paragraph 3.72 of the [2]Guidelines issued by
the Australian Information Commissioner under s93A of the Freedom of
Information Act 1982, an agency is able to discuss with the applicant the
scope of their request).

The below information gives some background and context about NHMRC’s
activities relating to myalgic encephalomyelitis/chronic fatigue syndrome
(ME/CFS) clinical guidelines. This may assist in further clarifying the
scope of your request.

NHMRC established an advisory committee in 2017 to advise the NHMRC Chief
Executive Officer (CEO) on the ME/CFS research and clinical guidance needs
in Australia. On 30 April 2019, the committee presented the CEO with the
[3]Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Advisory Committee
Report to the NHMRC Chief Executive Officer. This report included a
recommendation about developing ME/CFS clinical guidelines (refer: section
5.3.3). In response to this report, the CEO wrote an [4]open letter to
stakeholders on 18 October 2019. This letter advised that NHMRC should
develop clinical guidance on ME/CFS (noting that the current Australian
advice, published by the Royal Australasian College of Physicians in 2002,
needed to be updated and replaced). NHMRC also needed to identify a
funding source to develop the guidance.

In June 2024, the Minister for Health and Aged Care, the Hon Mark Butler
MP, announced that the Government would provide $1.1 million to NHMRC to
develop clinical guidelines in consultation with patient groups, health
professionals, and medical scientists (refer: the [5]Minister’s media
release).

Currently, the clinical guidelines are in the early stages of development.
NHMRC plans to undertake consultations about the scope of the guidelines
to help prioritise questions that are of most relevance to consumers and
clinicians and that are feasible to implement. To stay up to date with the
development of the ME/CFS guidelines, you can [6]sign up for
NHMRC’s [7]Tracker newsletter. NHMRC is also planning to build a webpage
where we can post communiques throughout the development process. When we
update this page, we will also notify stakeholders to sign up through
NHMRC Tracker.

Given the information provided above, we ask that you consider further
clarifying the scope of your request. For example, by advising what
specific aspect of the clinical guidelines that you are interested in.

Please advise [8][NHMRC request email] by COB Thursday 17 October 2024 if you
agree to further clarifying the scope of your request and, if so, provide
the details of your revised request.

If you would like to discuss your request with the NHMRC FOI Unit, please
contact (02) 6217 9000.

Below is some information about the processing of your request.

Timeframe for receiving your decision

The statutory timeframe for processing a request is 30 days, starting from
the day after the day on which your application was received. Therefore,
the due date for a decision on your request is 5 November 2024.

This timeframe may be extended where:

o charges are levied as prescribed by the [9]Freedom of Information
(Charges) Regulations 2019 (FOI Regulations) (see charges below)
o consultation with third parties is necessary (see consultation with
third parties below).

Charges

Agencies may decide that an applicant is liable to pay a charge in respect
of a request for access to documents. These charges are set by the [10]FOI
Regulations and are for search and retrieval of documents, decision making
and provision of access (for example, copying and postage).

If NHMRC decides to charge you in respect of this FOI request, we will
send you a preliminary assessment of the charges as soon as possible
following retrieval of any documents that may be relevant to your
request.

Consultation with third parties

NHMRC may be required under the FOI Act to consult other parties (third
parties) where information relating to third parties arises in documents
sought by your request. The FOI Act prescribes a further 30 days
processing time for NHMRC to undertake this consultation. You will be
advised as soon as possible of any requirement to consult with a third
party.

Disclosure log

Please note that section 11C of the FOI Act requires agencies to disclose
documents released under the FOI Act in a disclosure log, which is made
publicly available. There are exceptions to this requirement, such as
where release of the documents or parts of them would involve the
unreasonable disclosure of your or another person’s personal or business
information. You may choose to express a view on this issue and to
identify personal or business information that in your view would be
unreasonable to publish. However, you should be aware that section 11C of
the FOI Act embodies a pro-disclosure policy which agencies are required
to follow, subject to any exceptions provided for under the FOI Act.

If you have any queries throughout the process, please contact the FOI
Unit at: [11][NHMRC request email]

Kind regards

Kate

____________________________________________________

NHMRC Freedom of Information
National Health & Medical Research Council
[12][NHMRC request email]

+61 (0) 2 6217 9000

[13]nhmrc.gov.au

In the spirit of reconciliation, NHMRC acknowledges the Traditional
Custodians of country throughout Australia and their connections to land,
sea and community. We pay our respects to their Elders past and present
and extend that respect to all Aboriginal and Torres Strait Islander
people.

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

From: Julie Keys <[14][FOI #12144 email]>

Sent: Tuesday, October 8, 2024 12:24 PM

To: NHMRC FOI <[15][NHMRC request email]>

Subject: Re: Freedom of Information request - ME/CFS - response to the
NHMRC's 2019 recommendation to update the 2002 guidelines

Dear National Health and Medical Research Council,

To clarify my request relates to information on this topic that post
dates the publication of the NHMRC's recommendation to update the
guidelines in 2019 until current date.

Yours faithfully,

Julie Keys

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

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

[16][FOI #12144 email]

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:

[17]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.

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

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

From: Julie Keys <[18][FOI #12144 email]>

Sent: Sunday, October 6, 2024 7:41 PM

To: NHMRC FOI <[19][NHMRC request email]>

Subject: Freedom of Information request - ME/CFS - response to the NHMRC's
2019 recommendation to update the 2002 guidelines

Dear National Health and Medical Research Council,

I am seeking the documents/information/phone calls/emails/notes relating
to the recommendation made by the NHMRC in 2019 to update Australia's 2002
guidelines for ME/CFS.

Yours faithfully,

Julie Keys

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

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

[20][FOI #12144 email]

Is [21][NHMRC request email] the wrong address for Freedom of Information
requests to National Health and Medical Research Council? If so, please
contact us using this form:

[22]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:

[23]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.

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

This email (including any attached files) is intended only for the
addressee, it may contain confidential information. If you are not the
addressee, you are notified that any transmission, distribution, printing
or duplication of this email is strictly prohibited. If you have received
this email in error please promptly inform the sender and delete all
copies of this e-mail and all attachments.

Unless explicitly attributed, the opinions expressed do not necessarily
represent the official position of the National Health and Medical
Research Council.

Please consider the environment before printing this email, thank you.

References

Visible links
1. https://www.legislation.gov.au/Series/C2...
2. http://www.oaic.gov.au/freedom-of-inform...
3. https://www.nhmrc.gov.au/about-us/public...
4. https://www.nhmrc.gov.au/about-us/public...
5. https://www.health.gov.au/ministers/the-...
6. https://www.nhmrc.gov.au/signup
7. https://aus01.safelinks.protection.outlo...
https://www.nhmrc.gov.au/about-us/news-c...
8. mailto:[NHMRC request email]
9. https://www.legislation.gov.au/Series/F2...
10. https://www.legislation.gov.au/Series/F2...
11. mailto:[NHMRC request email]
12. mailto:[NHMRC request email]
13. http://www.nhmrc.gov.au/
14. mailto:[FOI #12144 email]
15. mailto:[NHMRC request email]
16. mailto:[FOI #12144 email]
17. https://www.righttoknow.org.au/help/offi...
18. mailto:[FOI #12144 email]
19. mailto:[NHMRC request email]
20. mailto:[FOI #12144 email]
21. mailto:[NHMRC request email]
22. https://www.righttoknow.org.au/change_re...
23. https://www.righttoknow.org.au/help/offi...

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Dear Julie

Re - Freedom of Information Request: No. 2024/25-002

Thank you for your below response about further clarifying the scope of
your request.

I am writing to seek your agreement to extend the processing period of
your FOI request by 30 days, in accordance with section 15AA of the
[1]Freedom of Information Act 1982 (Cth) (FOI Act).

As advised in NHMRC’s email of 14 October 2024 (below), the due date for a
decision on your request is 5 November 2024.

Although the scope of your request was further clarified on 19 October
2024, its broad nature (i.e., information relating to NHMRC's
actions/correspondence/consultations over multiple years) has meant that
it is taking time for NHMRC to search for potentially relevant documents.
Initial searches have shown large numbers of documents, and we are working
to further refine our search in line with the scope of your request. The
extension would allow us time to complete this search and continue
processing your request.

We will be in touch next week about the outcome of our search.

If you agree to the extension, the due date for your request would be 5
December 2024.

Please email [2][NHMRC request email] by close of business Tuesday 29 October
2024 to advise whether or not you agree to this request.

If you have any queries, please contact the FOI Unit at:
[3][NHMRC request email]. We are also happy to discuss over the phone – we
don’t have your number, so please feel free to call us on (02) 6217 9000.

Kind regards

Kate

____________________________________________________

NHMRC Freedom of Information
National Health & Medical Research Council
[4][NHMRC request email]

+61 (0) 2 6217 9000

[5]nhmrc.gov.au

In the spirit of reconciliation, NHMRC acknowledges the Traditional
Custodians of country throughout Australia and their connections to land,
sea and community. We pay our respects to their Elders past and present
and extend that respect to all Aboriginal and Torres Strait Islander
people.

-----Original Message-----
From: Julie Keys <[FOI #12144 email]>
Sent: Saturday, 19 October 2024 1:14 PM
To: NHMRC FOI <[NHMRC request email]>
Subject: Re: FOI Request 2024/25-002: Clarification on scope and
acknowledgement [SEC=OFFICIAL]

[You don't often get email from
[6][FOI #12144 email]. Learn why this is
important at [7]https://aka.ms/LearnAboutSenderIdentific... ]

Dear NHMRC FOI,

`

I am seeking information on how the guidelines that will replace the 2002
Australian Guidelines are being developed and what patients are to do in
the interim. The 2002 guidelines promote outdated and outmoded therapies
that were controversial and at odds with patients lived experience at the
time of drafting/implementation.

In the decades since 2002, other countries have updated their guidelines
e.g. the UK (2021) and the USA (IOM report 2015) who both carried out
extensive and exhaustive research into the best practice management of
ME/CFS. Both the UK and the USA warn against graded exercise therapy (GET
or incremental exercise/activity therapy -as typically being harmful and
cognitive behavior therapy (CBT) - of limited benefit.

Expert Australian researchers (e.g. Griffith University -NCNED and the OMF
- Melbourne )agree with the UK and USA findings, as does the patient's
lived experiences (repeated anecdotal evidence and surveys of being made
worse by following the 2002 recommendations).

I am seeking information relating to the NHMRC's
actions/correspondence/consultations to date regarding the development of
safe and clinically appropriate guidelines for best practice management of
ME/CFS.

The information I am seeking includes but is not limited to:

i) Advice provided to the NHMRC to date regarding the scope of the
guidelines,

ii) Interim advice provided to government organisations such as the NDIA
on the management of ME/CFS- note that the NDIA's TAB branch still
recommends and often demands evidence that patients have undertaken a
course of GET and CBT despite the fact that HARM is known to be caused by
these outdated practices and NO high quality evidence that they are
beneficial.

iii) Any information relating to interim measures e.g. the adoption of the
comprehensive UK NICE Guidelines and/or the IOM report- CDC website, Mayo
Clinic, Batman Horne Clinic, Workwell Foundation etc...best practice
management for ME/CFS.

iv) Advice/s from persons working on the process to develop the
guidelines.

v) A copy of the procedural steps taken by the NHMRC to develop guidelines
e.g. the Australian equivalent of the NICE research protocol.

Yours sincerely,

Julie Keys

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

Dear Julie

Re - Freedom of Information Request: No. 2024/25-002

I refer to your request to the National Health and Medical Research

Council (NHMRC) under the [1]Freedom of Information Act 1982 (Cth) (FOI

Act) seeking:

The documents/information/phone calls/emails/notes relating to the

recommendation made by the NHMRC in 2019 to update Australia's 2002

guidelines for ME/CFS.

To clarify my request relates to information on this topic that post dates

the publication of the NHMRC's recommendation to update the guidelines in

2019 until current date.

Scope of your request

NHMRC is seeking your agreement to further clarify the scope of your

request.

By providing more specific information about exactly which aspect you are

interested in, NHMRC will be able to pinpoint the relevant records more

quickly and avoid using excessive resources to process records that you

are not interested in (under paragraph 3.72 of the [2]Guidelines issued by

the Australian Information Commissioner under s93A of the Freedom of

Information Act 1982, an agency is able to discuss with the applicant the

scope of their request).

The below information gives some background and context about NHMRC’s

activities relating to myalgic encephalomyelitis/chronic fatigue syndrome

(ME/CFS) clinical guidelines. This may assist in further clarifying the

scope of your request.

NHMRC established an advisory committee in 2017 to advise the NHMRC Chief

Executive Officer (CEO) on the ME/CFS research and clinical guidance needs

in Australia. On 30 April 2019, the committee presented the CEO with the

[3]Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Advisory Committee

Report to the NHMRC Chief Executive Officer. This report included a

recommendation about developing ME/CFS clinical guidelines (refer: section

5.3.3). In response to this report, the CEO wrote an [4]open letter to

stakeholders on 18 October 2019. This letter advised that NHMRC should

develop clinical guidance on ME/CFS (noting that the current Australian

advice, published by the Royal Australasian College of Physicians in 2002,

needed to be updated and replaced). NHMRC also needed to identify a

funding source to develop the guidance.

In June 2024, the Minister for Health and Aged Care, the Hon Mark Butler

MP, announced that the Government would provide $1.1 million to NHMRC to

develop clinical guidelines in consultation with patient groups, health

professionals, and medical scientists (refer: the [5]Minister’s media

release).

Currently, the clinical guidelines are in the early stages of development.

NHMRC plans to undertake consultations about the scope of the guidelines

to help prioritise questions that are of most relevance to consumers and

clinicians and that are feasible to implement. To stay up to date with the

development of the ME/CFS guidelines, you can [6]sign up for

NHMRC’s [7]Tracker newsletter. NHMRC is also planning to build a webpage

where we can post communiques throughout the development process. When we

update this page, we will also notify stakeholders to sign up through

NHMRC Tracker.

Given the information provided above, we ask that you consider further

clarifying the scope of your request. For example, by advising what

specific aspect of the clinical guidelines that you are interested in.

Please advise [8][NHMRC request email] by COB Thursday 17 October 2024 if
you

agree to further clarifying the scope of your request and, if so, provide

the details of your revised request.

If you would like to discuss your request with the NHMRC FOI Unit, please

contact (02) 6217 9000.

Below is some information about the processing of your request.

Timeframe for receiving your decision

The statutory timeframe for processing a request is 30 days, starting from

the day after the day on which your application was received. Therefore,

the due date for a decision on your request is 5 November 2024.

This timeframe may be extended where:

o charges are levied as prescribed by the [9]Freedom of Information

(Charges) Regulations 2019 (FOI Regulations) (see charges below)

o consultation with third parties is necessary (see consultation with

third parties below).

Charges

Agencies may decide that an applicant is liable to pay a charge in respect

of a request for access to documents. These charges are set by the [10]FOI

Regulations and are for search and retrieval of documents, decision making

and provision of access (for example, copying and postage).

If NHMRC decides to charge you in respect of this FOI request, we will

send you a preliminary assessment of the charges as soon as possible

following retrieval of any documents that may be relevant to your

request.

Consultation with third parties

NHMRC may be required under the FOI Act to consult other parties (third

parties) where information relating to third parties arises in documents

sought by your request. The FOI Act prescribes a further 30 days

processing time for NHMRC to undertake this consultation. You will be

advised as soon as possible of any requirement to consult with a third

party.

Disclosure log

Please note that section 11C of the FOI Act requires agencies to disclose

documents released under the FOI Act in a disclosure log, which is made

publicly available. There are exceptions to this requirement, such as

where release of the documents or parts of them would involve the

unreasonable disclosure of your or another person’s personal or business

information. You may choose to express a view on this issue and to

identify personal or business information that in your view would be

unreasonable to publish. However, you should be aware that section 11C of

the FOI Act embodies a pro-disclosure policy which agencies are required

to follow, subject to any exceptions provided for under the FOI Act.

If you have any queries throughout the process, please contact the FOI

Unit at: [11][NHMRC request email]

Kind regards

Kate

____________________________________________________

NHMRC Freedom of Information

National Health & Medical Research Council

[12][NHMRC request email]

+61 (0) 2 6217 9000

[13]nhmrc.gov.au

In the spirit of reconciliation, NHMRC acknowledges the Traditional

Custodians of country throughout Australia and their connections to land,

sea and community. We pay our respects to their Elders past and present

and extend that respect to all Aboriginal and Torres Strait Islander

people.

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

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

[8][FOI #12144 email]

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:

[9]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.

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

This email (including any attached files) is intended only for the
addressee, it may contain confidential information. If you are not the
addressee, you are notified that any transmission, distribution, printing
or duplication of this email is strictly prohibited. If you have received
this email in error please promptly inform the sender and delete all
copies of this e-mail and all attachments.

Unless explicitly attributed, the opinions expressed do not necessarily
represent the official position of the National Health and Medical
Research Council.

Please consider the environment before printing this email, thank you.

References

Visible links
1. https://www.legislation.gov.au/Series/C2...
2. mailto:[NHMRC request email]
3. mailto:[NHMRC request email]
4. mailto:[NHMRC request email]
5. http://www.nhmrc.gov.au/
6. mailto:[FOI #12144 email]
7. https://aka.ms/LearnAboutSenderIdentific...
8. mailto:[FOI #12144 email]
9. https://www.righttoknow.org.au/help/offi...

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Dear Julie

Re - Freedom of Information Request: No. 2024/25-002

Thank you for your below email and for agreeing to the extension of 30
days (under s15AA of the FOI Act).

The due date for your request is now 5 December 2024.

We will be in touch soon about the outcome of our search.

If you have any queries, please contact the FOI Unit at:
[1][NHMRC request email] or on: (02) 6217 9000.

Kind regards

Kate

____________________________________________________

NHMRC Freedom of Information
National Health & Medical Research Council
[2][NHMRC request email]

+61 (0) 2 6217 9000

[3]nhmrc.gov.au

In the spirit of reconciliation, NHMRC acknowledges the Traditional
Custodians of country throughout Australia and their connections to land,
sea and community. We pay our respects to their Elders past and present
and extend that respect to all Aboriginal and Torres Strait Islander
people.

-----Original Message-----
From: Julie Keys <[4][FOI #12144 email]>
Sent: Sunday, 27 October 2024 3:13 AM
To: NHMRC FOI <[5][NHMRC request email]>
Subject: Re: FOI Request 2024/25-002: Extension request [SEC=OFFICIAL]

Dear NHMRC FOI,

Thank you I agree to the request.

Please note that I am only requesting information the post dates the 2019
NHMRC publication of their report on ME/CFS and not any earlier
correspondence or information.

Yours sincerely,

Julie Keys

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

Dear Julie

Re - Freedom of Information Request: No. 2024/25-002

Thank you for your below response about further clarifying the scope of

your request.

I am writing to seek your agreement to extend the processing period of

your FOI request by 30 days, in accordance with section 15AA of the

[1]Freedom of Information Act 1982 (Cth) (FOI Act).

As advised in NHMRC’s email of 14 October 2024 (below), the due date for a

decision on your request is 5 November 2024.

Although the scope of your request was further clarified on 19 October

2024, its broad nature (i.e., information relating to NHMRC's

actions/correspondence/consultations over multiple years) has meant that

it is taking time for NHMRC to search for potentially relevant documents.

Initial searches have shown large numbers of documents, and we are working

to further refine our search in line with the scope of your request. The

extension would allow us time to complete this search and continue

processing your request.

We will be in touch next week about the outcome of our search.

If you agree to the extension, the due date for your request would be 5

December 2024.

Please email [2][NHMRC request email] by close of business Tuesday 29
October

2024 to advise whether or not you agree to this request.

If you have any queries, please contact the FOI Unit at:

[3][NHMRC request email]. We are also happy to discuss over the phone – we

don’t have your number, so please feel free to call us on (02) 6217 9000.

Kind regards

Kate

____________________________________________________

NHMRC Freedom of Information

National Health & Medical Research Council

[4][NHMRC request email]

+61 (0) 2 6217 9000

[5]nhmrc.gov.au

In the spirit of reconciliation, NHMRC acknowledges the Traditional

Custodians of country throughout Australia and their connections to land,

sea and community. We pay our respects to their Elders past and present

and extend that respect to all Aboriginal and Torres Strait Islander

people.

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

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

[6][FOI #12144 email]

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:

[7]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.

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

This email (including any attached files) is intended only for the
addressee, it may contain confidential information. If you are not the
addressee, you are notified that any transmission, distribution, printing
or duplication of this email is strictly prohibited. If you have received
this email in error please promptly inform the sender and delete all
copies of this e-mail and all attachments.

Unless explicitly attributed, the opinions expressed do not necessarily
represent the official position of the National Health and Medical
Research Council.

Please consider the environment before printing this email, thank you.

References

Visible links
1. mailto:[NHMRC request email]
2. mailto:[NHMRC request email]
3. http://www.nhmrc.gov.au/
4. mailto:[FOI #12144 email]
5. mailto:[NHMRC request email]
6. mailto:[FOI #12144 email]
7. https://www.righttoknow.org.au/help/offi...

hide quoted sections

image001.jpg

10K Download

Dear Julie

Re - Freedom of Information Request: No. 2024/25-002

I am writing to provide an update on the status of your FOI request.

Please note that we are still working on the search, and we will be in
touch with you as soon as possible about the outcome.

If you have any queries, please contact the FOI Unit at:
[1][NHMRC request email] or on: (02) 6217 9000.

Kind regards

Kate

____________________________________________________

NHMRC Freedom of Information
National Health & Medical Research Council
[2][NHMRC request email]

+61 (0) 2 6217 9000

[3]nhmrc.gov.au

In the spirit of reconciliation, NHMRC acknowledges the Traditional
Custodians of country throughout Australia and their connections to land,
sea and community. We pay our respects to their Elders past and present
and extend that respect to all Aboriginal and Torres Strait Islander
people.

From: NHMRC FOI <[4][NHMRC request email]>
Sent: Monday, 28 October 2024 12:03 PM
To: [5][FOI #12144 email]
Cc: NHMRC FOI <[6][NHMRC request email]>
Subject: RE: FOI Request 2024/25-002: Extension request [SEC=OFFICIAL]

Dear Julie

Re - Freedom of Information Request: No. 2024/25-002

Thank you for your below email and for agreeing to the extension of 30
days (under s15AA of the FOI Act).

The due date for your request is now 5 December 2024.

We will be in touch soon about the outcome of our search.

If you have any queries, please contact the FOI Unit at:
[7][NHMRC request email] or on: (02) 6217 9000.

Kind regards

Kate

____________________________________________________

NHMRC Freedom of Information
National Health & Medical Research Council
[8][NHMRC request email]

+61 (0) 2 6217 9000

[9]nhmrc.gov.au

In the spirit of reconciliation, NHMRC acknowledges the Traditional
Custodians of country throughout Australia and their connections to land,
sea and community. We pay our respects to their Elders past and present
and extend that respect to all Aboriginal and Torres Strait Islander
people.

-----Original Message-----
From: Julie Keys <[10][FOI #12144 email]>
Sent: Sunday, 27 October 2024 3:13 AM
To: NHMRC FOI <[11][NHMRC request email]>
Subject: Re: FOI Request 2024/25-002: Extension request [SEC=OFFICIAL]

Dear NHMRC FOI,

Thank you I agree to the request.

Please note that I am only requesting information the post dates the 2019
NHMRC publication of their report on ME/CFS and not any earlier
correspondence or information.

Yours sincerely,

Julie Keys

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

Dear Julie

Re - Freedom of Information Request: No. 2024/25-002

Thank you for your below response about further clarifying the scope of
your request.

I am writing to seek your agreement to extend the processing period of
your FOI request by 30 days, in accordance with section 15AA of the
[1]Freedom of Information Act 1982 (Cth) (FOI Act).

As advised in NHMRC’s email of 14 October 2024 (below), the due date for a
decision on your request is 5 November 2024.

Although the scope of your request was further clarified on 19 October
2024, its broad nature (i.e., information relating to NHMRC's
actions/correspondence/consultations over multiple years) has meant that
it is taking time for NHMRC to search for potentially relevant documents.
Initial searches have shown large numbers of documents, and we are working
to further refine our search in line with the scope of your request. The
extension would allow us time to complete this search and continue
processing your request.

We will be in touch next week about the outcome of our search.

If you agree to the extension, the due date for your request would be 5
December 2024.

Please email [2][NHMRC request email] by close of business Tuesday 29
October 2024 to advise whether or not you agree to this request.

If you have any queries, please contact the FOI Unit at: [3][NHMRC request
email]. We are also happy to discuss over the phone – we don’t have your
number, so please feel free to call us on (02) 6217 9000.

Kind regards

Kate

____________________________________________________

NHMRC Freedom of Information

National Health & Medical Research Council

[4][NHMRC request email]

+61 (0) 2 6217 9000

[5]nhmrc.gov.au

In the spirit of reconciliation, NHMRC acknowledges the Traditional

Custodians of country throughout Australia and their connections to land,

sea and community. We pay our respects to their Elders past and present

and extend that respect to all Aboriginal and Torres Strait Islander

people.

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Dear Julie

Re - Freedom of Information Request: No. 2024/25-002

NHMRC has conducted a search for potentially relevant documents based on
the current scope of your request. Due to the large number of search
results, we are seeking your agreement to reduce the scope of your
request.

Please see the below information that we have provided about:

a) the current scope of your request

b) the outcome of our search

c) reducing the scope of your request

d) the development of NHMRC’s clinical practice guidelines for myalgic
encephalomyelitis/chronic fatigue syndrome (ME/CFS), long COVID and
related conditions

e) the FOI practical refusal process.

We ask that you please advise [1][NHMRC request email] by close of business
Monday 18 November 2024 if you agree to reducing the scope of your request
and, if so, provide the details of your revised request.

If you would like to discuss your request with the NHMRC FOI Unit, please
feel free to contact us on (02) 6217 9000.

a) Current scope of your request

NHMRC’s search is based on the following scope that you clarified on 8 and
19 October 2024:

I am seeking the documents/information/phone calls/emails/notes relating
to the recommendation made by the NHMRC in 2019 to update Australia's 2002
guidelines for ME/CFS.

To clarify my request relates to information on this topic that post dates
the publication of the NHMRC's recommendation to update the guidelines in
2019 until current date.

I am seeking information on how the guidelines that will replace the 2002
Australian Guidelines are being developed and what patients are to do in
the interim. The 2002 guidelines promote outdated and outmoded therapies
that were controversial and at odds with patients lived experience at the
time of drafting/implementation.

In the decades since 2002, other countries have updated their guidelines
e.g. the UK (2021) and the USA (IOM report 2015) who both carried out
extensive and exhaustive research into the best practice management of
ME/CFS. Both the UK and the USA warn against graded exercise therapy (GET
or incremental exercise/activity therapy -as typically being harmful and
cognitive behavior therapy (CBT) - of limited benefit.

Expert Australian researchers (e.g. Griffith University -NCNED and the OMF
- Melbourne )agree with the UK and USA findings, as does the patient's
lived experiences (repeated anecdotal evidence and surveys of being made
worse by following the 2002 recommendations).

I am seeking information relating to the NHMRC's actions/correspondence/
consultations to date regarding the development of safe and clinically
appropriate guidelines for best practice management of ME/CFS.

The information I am seeking includes but is not limited to:

i. Advice provided to the NHMRC to date
regarding the scope of the guidelines,

ii. Interim advice provided to government
organisations such as the NDIA on the management of ME/CFS- note that the
NDIA's TAB branch still recommends and often demands evidence that
patients have undertaken a course of GET and CBT despite the fact that
HARM is known to be caused by these outdated practices and NO high quality
evidence that they are beneficial.

iii. Any information relating to interim
measures e.g. the adoption of the comprehensive UK NICE Guidelines and/or
the IOM report- CDC website, Mayo Clinic, Batman Horne Clinic, Workwell
Foundation etc...best practice management for ME/CFS.

iv. Advice/s from persons working on the
process to develop the guidelines.

v. A copy of the procedural steps taken by
the NHMRC to develop guidelines e.g. the Australian equivalent of the NICE
research protocol.

We also note that on 27 October 2024, you reiterated the following:

I am only requesting information the post dates the 2019 NHMRC publication
of their report on ME/CFS and not any earlier correspondence or
information.

b) Outcome of search for potentially relevant documents

NHMRC conducted a search of its electronic files and email mailboxes, to
find any documents that may be relevant to the scope of your request (as
specified above). The key search terms used were ‘Myalgic
Encephalomyelitis/Chronic Fatigue Syndrome’, ‘ME/CFS’, ‘ME-CFS’, ‘MECFS’
and ‘long COVID’, with the date range of 30 April 2019–19 October 2024. We
have tried to refine the search by excluding documents that do not fall
within the scope of your request.

To date, our search has identified over 100,000 documents which could
potentially fall within the scope of your FOI request. NHMRC has
considered the number of hours which would be required to continue
processing your request in its current form (which would include further
examination to determine if documents are within the scope of your
request), as well as the staffing and resources of NHMRC – a small agency
of just over 200 staff, of which only a small team of officers have
specialist knowledge on the relevant subject matter. In our view,
processing your request as it stands would substantially divert resources
and adversely affect the ability of the team to perform their other
functions properly.

c) Reducing the scope of your request

NHMRC invites you to submit a revised request with a reduced scope. By
focussing on information that you are more interested in, NHMRC will be
able to pinpoint the documents more quickly and avoid using excessive
resources to process documents that you are less interested in. For
example, your focus may be on correspondence from NHMRC to a specific
government agency (e.g., NDIA) with interim advice about ME/CFS, and
seeking a copy of the procedural steps that NHMRC will undertake to
develop the NHMRC clinical practice guidelines for ME/CFS, long COVID and
related conditions.

In meeting your request, NHMRC would still need to examine the documents
found to be in scope and decide whether to grant access or if any
[2]exemptions and/or [3]conditional exemptions apply under the FOI Act.

d) Development of the guidelines

In terms of the scope, please note that the NHMRC clinical practice
guidelines for ME/CFS, long COVID and related conditions are still in the
early stages of development. As noted in our email of 14 October 2024,
NHMRC plans to undertake consultations about the scope of the guidelines
to help prioritise questions that are of most relevance to consumers and
clinicians and that are feasible to implement.

In terms of advice from people working on the process to develop the
guidelines, the NHMRC project team would be happy to contact you over the
phone to discuss any questions that you have.

To stay up to date with the development of the ME/CFS guidelines, you can
[4]sign up for NHMRC’s [5]Tracker newsletter. NHMRC is also planning to
build a webpage where we can post communiques throughout the development
process. When we update this page, we will also notify stakeholders to
sign up through NHMRC Tracker.

e) FOI practical refusal process

Please note that NHMRC may refuse access to an FOI request if a ‘practical
refusal reason’ exists (i.e., the request does not sufficiently identify
the requested documents; or the resource impact of processing the request
would be substantial and unreasonable). In either instance, NHMRC must
formally consult with you before refusing the request (under section 24AB
of the FOI Act). If NHMRC decided to undertake such a formal ‘request
consultation’ process, it would be separate to this email.

If you have any queries or would like to discuss, please don’t hesitate to
contact us by email at [6][NHMRC request email] or by phone on (02) 6217 9000.

Kind regards

Kate

____________________________________________________

NHMRC Freedom of Information
National Health & Medical Research Council
[7][NHMRC request email]

+61 (0) 2 6217 9000

[8]nhmrc.gov.au

In the spirit of reconciliation, NHMRC acknowledges the Traditional
Custodians of country throughout Australia and their connections to land,
sea and community. We pay our respects to their Elders past and present
and extend that respect to all Aboriginal and Torres Strait Islander
people.

From: NHMRC FOI <[NHMRC request email]>
Sent: Friday, 1 November 2024 2:50 PM
To: [FOI #12144 email]
Cc: NHMRC FOI <[NHMRC request email]>
Subject: FOI Request 2024/25-002: Status update [SEC=OFFICIAL]

Dear Julie

Re - Freedom of Information Request: No. 2024/25-002

I am writing to provide an update on the status of your FOI request.

Please note that we are still working on the search, and we will be in
touch with you as soon as possible about the outcome.

If you have any queries, please contact the FOI Unit at:
[9][NHMRC request email] or on: (02) 6217 9000.

Kind regards

Kate

____________________________________________________

NHMRC Freedom of Information
National Health & Medical Research Council
[10][NHMRC request email]

+61 (0) 2 6217 9000

[11]nhmrc.gov.au

In the spirit of reconciliation, NHMRC acknowledges the Traditional
Custodians of country throughout Australia and their connections to land,
sea and community. We pay our respects to their Elders past and present
and extend that respect to all Aboriginal and Torres Strait Islander
people.

From: NHMRC FOI <[12][NHMRC request email]>
Sent: Monday, 28 October 2024 12:03 PM
To: [13][FOI #12144 email]
Cc: NHMRC FOI <[14][NHMRC request email]>
Subject: RE: FOI Request 2024/25-002: Extension request [SEC=OFFICIAL]

Dear Julie

Re - Freedom of Information Request: No. 2024/25-002

Thank you for your below email and for agreeing to the extension of 30
days (under s15AA of the FOI Act).

The due date for your request is now 5 December 2024.

We will be in touch soon about the outcome of our search.

If you have any queries, please contact the FOI Unit at:
[15][NHMRC request email] or on: (02) 6217 9000.

Kind regards

Kate

____________________________________________________

NHMRC Freedom of Information
National Health & Medical Research Council
[16][NHMRC request email]

+61 (0) 2 6217 9000

[17]nhmrc.gov.au

In the spirit of reconciliation, NHMRC acknowledges the Traditional
Custodians of country throughout Australia and their connections to land,
sea and community. We pay our respects to their Elders past and present
and extend that respect to all Aboriginal and Torres Strait Islander
people.

-----Original Message-----
From: Julie Keys <[18][FOI #12144 email]>
Sent: Sunday, 27 October 2024 3:13 AM
To: NHMRC FOI <[19][NHMRC request email]>
Subject: Re: FOI Request 2024/25-002: Extension request [SEC=OFFICIAL]