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Zac Elwood
via email: xxxxxxxxxxxxxxxxxxxxxxxxxx@xxxxxxxxxxx.xxx.xx
Dear Zac
FREEDOM OF INFORMATION REQUEST: No. 2024/25-006
ACCESS DECISION
I refer to your request made under the
Freedom of Information Act 1982 (Cth) (FOI Act) to the
National Health and Medical Research Council (NHMRC) on 7 December 2024, seeking access
to:
Information regarding 'structed rehabilitation" for people with ME/CFS and a copy of the
background information/correspondence that led to the NHMRC seeking a people with
experience in providing "structured rehabilitation" to assist in developing new guidelines
for ME/CFS
To explain the need for this information:
Both the UK and the USA carried out comprehensive research and literature reviews
before discarding and warning against structed rehabilitation programs for people with
ME/CFS.
The Workwell Foundation et al objectively measure functional and cognitive capacity
supports a physiological based approach to managing ME/CFS and WARN against a
structured program.
Patient surveys worldwide have consistently found that structured rehabilitation
programs cause harm to people with ME/CFS.
Sydney Fatigue Clinic's research found that the majority of people attending their
structed rehabilitation program did not benefit.
I am an officer authorised under subsection 23(1) of the FOI Act to make decisions in relation to
FOI requests.
I have decided to grant part access to 5 documents, with irrelevant material redacted under
section 22 of the FOI Act. The detail of my decision is provided below.
Timeframe for processing your request
The FOI request was received by NHMRC via email from the
Right to Know website1 on
7 December 2024. The statutory timeframe for processing a request is 30 days, starting from
the day after the day on which your request was received. In addition, NHMRC sought an
extension of 30 days under section 15AA of the FOI Act, to which you agreed on
16 December 2024, and the due date was extended to 5 February 2025.
During the processing of your request, NHMRC consulted with a third party affected by the
potential release of the documents. As noted in NHMRC’s email sent to you on 5 February 2025,
as a result of the consultation, the timeframe for processing your request was extended by 30
days in accordance with subsection 15(6) of the FOI Act. Accordingly, the due date for a
decision on your request is 7 March 2025.
1 URL:
https://www.righttoknow.org.au/ 16 MARCUS CLARKE STREET, CANBERRA ACT 2601
GPO BOX 1421, CANBERRA ACT 2601
xxxxx@xxxxx.xxx.xx
NHMRC.GOV.AU
Decision
In making my decision, I have had regard to the following:
• the terms of your request
• the content of the documents to which you have sought access
• advice from NHMRC officers with responsibility for the matters relating to the documents
to which you sought access
• the views of third parties consulted by NHMRC, where relevant, under section 27 and 27A
of the FOI Act
• the relevant provisions of the FOI Act (accessed via:
www.legislation.gov.au) • the
FOI Guidelines—Guidelines issued by the Australian Information Commissioner under
s 93A of the Freedom of Information Act 1982 (the FOI Guidelines) (accessed via:
www.oaic.gov.au/freedom-of-information/freedom-of-information-guidance-for-
government-agencies/foi-guidelines).
As a timeframe for the information sought was not specified in your request, NHMRC emailed
you on 26 February 2025 about clarifying the date range, particularly for
information regarding
“structured rehabilitation" for people with ME/CFS. This email advised that NHMRC had
interpretated your request to be seeking more
recent documents, given NHMRC’s activities in
relation to the development of new guidelines for Myalgic Encephalomyelitis/Chronic Fatigue
Syndrome (ME/CFS), which is the focus of your request. This email further advised that NHMRC
had interpreted the end date for your request to be 7 December 2024 (the date your request
was submitted). As per paragraph 2.43 of the above FOI Guidelines, NHMRC processes FOI
requests on the basis of the documents that exist at the time that the FOI request was made.
As NHMRC did not receive a response from you about confirming the date range, we have
proceeded with our interpreted timeframe of 1 January 2017–7 December 2024. This start date is
based on the information provided in our email of 26 February 2025, about NHMRC’s activities
relating to ME/CFS clinical guidelines from 2017 onwards (also provided in this letter below).
NHMRC conducted a search of it electronic files and email mailboxes in line with the scope of
your request. The key search terms used were ‘Myalgic Encephalomyelitis/Chronic Fatigue
Syndrome’, ‘ME/CFS’, ‘ME-CFS’, ‘MECFS’, ‘long COVID’ and ‘structured rehabilitation’.
As noted in NHMRC’s email to you on 30 January 2025, this search found a large number of
documents (total of 779) that were potentially relevant to your request. However, a review of
these documents found that most were either not actually relevant to the scope of your request
or were duplicates. Also, as noted above, NHMRC used the date range of 1 January 2017–
7 December 2024.
Once any irrelevant and duplicate documents were excluded, this resulted in
5 documents that fell within the scope of your request. The Schedule of Documents at
Attachment A provides a description of these documents.
For the 5 documents identified in Attachment A, I have decided to grant part access with some
information redacted under section 22 of the FOI Act (irrelevant information). The detailed
reasons for my decision are set out below.
Documents containing irrelevant material (s22)
Section 22 of the FOI Act allows NHMRC to prepare an edited copy of a document, modified by
deletions or redactions, so that the edited copy would not disclose any information that is
reasonably regarded as irrelevant to the request.
I consider the following information to be irrelevant to your request and have therefore decided
to redact it from documents #01–05 (identified in Attachment A):
• any material about other activities which go beyond the scope of your request
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• the specific names, contact numbers and position titles of any staff from NHMRC, or an
external organisation.
However, while not relevant to the scope, I have decided include my name and contact details
(that are already publicly available) in document #01.
I have also decided to include the details of the agency/organisation and work areas in
document #01–05 (identified in Attachment A). As this information shows from where the
correspondence was sent, I consider this to be relevant to the scope of your request.
About NHMRC’s activities relating to ME/CFS clinical guidelines
As advised in our email to you on 26 February 2025, NHMRC established an advisory committee
to advise the NHMRC Chief Executive Officer (CEO) on the ME/CFS research and clinical
guidance needs in Australia in 2017.
On 30 April 2019, the committee presented the CEO with th
e 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 a
n 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.
On 20 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
Minister’s media release).
Currently, the ME/CFS clinical guidelines are in the early stages of development. Further
information about the guideline scope, development process and timeline is provided on our
website.
Charges
I have decided not to impose charges for processing this FOI request.
Your review rights
If you are dissatisfied with my decision, you may apply for internal review or Information
Commissioner review of the decision.
Internal review
Under section 54 of the FOI Act, you may apply in writing to NHMRC for an internal review of
my decision. The internal review application must be made within 30 days of the date of this
letter. Where possible, please attach reasons why you believe review of the decision is
necessary. The internal review will be carried out by another officer within 30 days. Please email
a request for internal review to NHMRC’s FOI Unit at
xxx@xxxxx.xxx.xx.
Information Commissioner review
Under section 54L of the FOI Act, you may apply to the Australian Information Commissioner to
review my decision. Such an application must be made in writing within 60 days of the date of
this letter, and be lodged in one of the following ways:
• online:
https://webform.oaic.gov.au/prod?entitytype=ICReview&layoutcode=ICReviewWF
• email:
xxxxx@xxxx.xxx.xx • post: GPO Box 5288, Sydney NSW, 2001.
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More information about Information Commissioner review is available on t
he Office of the
Australian Information Commissioner2 website.
Complaints
If you are unhappy with the way your FOI request has been handled, you can make a complaint
in writing to NHMRC at: complaint
x@xxxxx.xxx.xx. Information on how NHMRC manages
complaints can be found on t
he NHMRC3 website.
If you are not satisfied with our response, you can make a complaint in writing to the Australian
Information Commissioner in one of the following ways:
• online:
https://webform.oaic.gov.au/prod?entitytype=Complaint&layoutcode=FOIComplaintWF
• email:
xxxxx@xxxx.xxx.xx
• post: GPO Box 5288 Sydney 2001
More information about FOI complaints is available on t
he Office of the Australian Information
Commissioner4 website.
Questions
If you have any queries or wish to discuss my decision, please contact the NHMRC FOI Unit at
xxx@xxxxx.xxx.xx.
Yours sincerely
signed electronically
Alan Singh
Executive Director
Research Quality and Advice
7 March 2025
Attachment
A. Schedule of Documents, including 5 documents
2 URL:
https://www.oaic.gov.au/freedom-of-information/your-freedom-of-information-rights/freedom-of-
information-reviews/information-commissioner-review 3 URL:
https://www.nhmrc.gov.au/about-us/resources/nhmrc-complaints-policy
4 URL:
https://www.oaic.gov.au/freedom-of-information/your-freedom-of-information-rights/freedom-of-
information-complaints
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