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Julie Keys
via email: xxxxxxxxxxxxxxxxxxxxxxxxxx@xxxxxxxxxxx.xxx.xx
Dear Julie
FREEDOM OF INFORMATION REQUEST: No. 2024/25-002
Request Consultation (section 24AB)
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 6 October 2024, which you clarified
on 8, 19 and 27 October 2024. You also revised the scope of your request on 20 November
2024, which is 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 by
Prof, Andrew Lloyd (Sydney Fatgue Clinic) , Prof. Paul Glasziou et
ii. Advice provided to government organisations such as the NDIA on the
management of ME/CFS
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. A copy of the procedural steps taken by the NHMRC to develop guidelines e.g. the
Australian equivalent of the NICE research protocol.
On 20 November 2024, you also noted that:
I do not think that the scope is onerous as it appears that little work has been done
towards updating these guidelines and I don't expect that there is a large volume of
information.
I am an officer authorised under subsection 23(1) of the FOI Act to make decisions in relation to
FOI requests.
On 8 October 2024, you clarified the scope of your request by advising that it
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.
On 14 October 2024, NHMRC’s FOI Unit sought your agreement via email to further clarify the
scope of your request (in line with paragraph 3.72 of t
he Guidelines issued by the Australian
Information Commissioner under s93A of the Freedom of Information Act 19821). This email also
provided some background and context about NHMRC’s
clinical practice guidelines for myalgic
encephalomyelitis/chronic fatigue syndrome (ME/CFS), long COVID and related conditions (the
1 URL:
https://www.oaic.gov.au/freedom-of-information/freedom-of-information-guidance-for-
government-agencies/foi-guidelines
guidelines).
You responded on 19 October 2024 and provided further clarification on the scope
of your request. You also reiterated on 27 October 2024 that you are
only requesting
information the post dates the 2019 NHMRC publication of their report on ME/CFS and not any
earlier correspondence or information.
On 14 November 2024, the FOI Unit sought your agreement via email to reduce the scope of
your request. This was based on the large number of results that were identified in our search
for potentially relevant documents. This email also provided further information on the outcome
of our search, reducing the scope of your request, as well as the development of the guidelines.
On 20 November 2024, you agreed to the reduce the scope and provided the details of your
revised request. Although parts of your request have been refined, I note that your request
remains broad in nature (e.g., advising that the information you are seeking
includes but is not
limited to the 4 points provided).
I am writing to advise that I intend to refuse access to the documents requested, for the reasons
detailed below. However, before a final decision is made to do this, you have an opportunity to
further reduce the scope of your request. This is called a ‘request consultation process’ as set
out under section 24AB of the FOI Act. You have 14 days to respond to this letter in one of the
ways set out under the ‘request consultation process’ heading below.
Power to refuse request
Section 24 of the FOI Act provides that if NHMRC is satisfied that a practical refusal reason
exists in relation to a request, NHMRC must undertake a consultation process with you. If, after
that consultation process, NHMRC remains satisfied that the practical refusal reason still exists,
NHMRC may refuse access to the documents subject to the request.
Practical refusal
A practical refusal reason exists if either (or both) of the following applies:
(a) the work involved in the processing of the request would substantially and
unreasonably divert the resources of the agency from its other operations
(b) the request does not satisfy the requirement in section 15(2)(b) of the FOI Act, which
requires you to provide such information concerning the document you are seeking
access to, to enable the agency to be able to identify it.
Reasons for practical refusal
The work involved in processing the request – section 24AA(1)(a) of the FOI Act
I believe that the work involved in processing your request in its current form would
substantially and unreasonably divert the resources of this agency from its other operations due
to the broad scope of your revised request (dated 20 November 2024).
The FOI Act gives any person the right to request access to copies of documents held by an
agency (s11(1)). In processing a request for documents, I must have regard to the resources
required to perform the following activities (specified in s24AA(2) of the FOI Act):
• identifying, locating or collating documents within the filing system of the agency
• examining the documents
• deciding whether to grant, refuse or defer access
• consulting with other parties
• redacting exempt material from the documents
• making copies of documents
• notifying an interim or final decision to the applicant.
NHMRC conducted another search of its electronic files and email mailboxes within the agency,
to find any documents that may be relevant to your revised request of 20 November 2024. The
key search terms used were [‘Myalgic Encephalomyelitis/Chronic Fatigue Syndrome’,
‘ME/CFS’, ‘ME-CFS’, ‘MECFS’, ‘long COVID’]. I note that these are general search terms that
have been used due to the nature of your request. Although a date range was not specified in
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your revised request, we assumed that it was only for information that post-dated t
he 2019
NHMRC publication of the ME/CFS report2 (i.e., after 30 April 2019), as you previously advised.
We also assumed an end date of 20 November 2024, as this is the date you submitted your
revised scope. Accordingly, the date range for the search was 1 May 2019–20 November 2024
(inclusive). We have tried to refine the search by excluding documents that do not fall within
the scope of your request. This search has identified 199,553 documents which potentially fall
within the scope of your request.
I have applied an estimated review time of 2 minutes per document to confirm whether the
document is in scope of your request, identify any duplicates, examine whether any
exemptions3
and/or
conditional exemptions4 apply under the FOI Act and record the reasons for applying
any exemption/s. This would result in a process time for this FOI request of 6,652 hours, or the
equivalent of around 887 days of work.
Further time may be required for NHMRC to perform any relevant redactions and create/secure
the PDF document. In addition, NHMRC has not yet assessed if it would be required to consult
with third parties affected by the potential release of the documents. These activities would add
considerably to the above estimate of time required to meet the request in its current form.
In determining an unreasonable diversion of resources, I have taken into account the number of
hours which would be required to process your FOI request and 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 my view, undertaking your request as it
stands would divert resources and adversely affect the ability of the team to perform their other
functions properly. My responsibilities require me to be mindful of these matters when
considering your request.
Request consultation process
I invite you to submit a further revised request with a reduced scope to enable it to proceed. By
focussing your request on information that you are more interested in, NHMRC may be able to
pinpoint the documents more quickly and avoid using excessive resources to process
documents that you are less interested in.
For example, you may wish to remove the more general parts of your request from the
scope, which contribute to the large number of search results, i.e.:
• 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...
• 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.
In addition, you may wish to focus on some of the more specific points of your request, for
example:
• Advice provided to the NHMRC to date regarding the scope of the guidelines by Prof,
Andrew Lloyd (Sydney Fatgue Clinic) and Prof. Paul Glasziou.
• Advice provided to the government organisation NDIA on the management of
ME/CFS
2 URL:
https://www.nhmrc.gov.au/about-us/publications/mecfs-advisory-committee-report-nhmrc-chief-
executive-officer
3 URL:
https://www.oaic.gov.au/freedom-of-information/freedom-of-information-guidance-for-
government-agencies/foi-guidelines/part-5-exemptions
4 URL:
https://www.oaic.gov.au/freedom-of-information/freedom-of-information-guidance-for-
government-agencies/foi-guidelines/part-6-conditional-exemptions
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• A copy of the procedural steps taken by the NHMRC to develop guidelines, e.g. the
Australian equivalent of the NICE research protocol.
Please note that NHMRC has published extensive information on its website about
developing
guidelines5, which will provide you with information that helps to address point iv of your
request. The development of the ME/CFS guidelines will essentially follow the steps laid out in
t
he guideline development process diagram6, even though that was technically produced to
illustrate the process for public health guidelines. You may also be interested in the
2016 NHMRC
Standards for Guidelines7 (which align Australia’s standards for guidelines with international best
practice), as well as the
Guidelines for Guidelines Handbook8 and
Procedures and requirements
for meeting the 2011 NHMRC standard for clinical practice guidelines.9
As stated above, the consultation period runs for 14 days and starts on the day after you receive
this notice. In this time, you must do one of the following, in writing:
1. make a further revised request – that is, make a request with a reduced scope
2. withdraw your request
3. advise that you do not wish to change your current request.
During this period, you are welcome to seek assistance from NHMRC’s FOI Unit to revise your
request. If you revise your request in a way that adequately addresses the practical refusal
grounds outlined above, we will recommence processing it.
If you do not do one of the 3 things listed above during the consultation period, your request
will be taken to have been withdrawn.
Timeframe for processing your request
Your request was received by NHMRC via email on 6 October 2024. The statutory timeframe for
processing a request is 30 days, starting from the day after the day on which your application
was received. On 27 October 2024, you agreed to extend the processing period by 30 days,
under s15AA of the FOI Act. Accordingly, the due date for a decision on your request is
5 December 2024. However, once this letter is sent to you, the period stops until you respond
with your advice on how the access request will proceed as per the 3 options outlined above, or
the 14-day response period concludes (whichever is shortest).
Contact
If you have any queries or would like to discuss your request, please contact me via NHMRC’s
FOI Unit by email a
t xxx@xxxxx.xxx.xx or by phone on (02) 6217 9000.
Yours sincerely
signed electronically
Alan Singh
Executive Director
Research Quality and Advice
26 November 2024
5 URL: https://www.nhmrc.gov.au/research-policy/guideline-development
6 URL: https://www.nhmrc.gov.au/health-advice/public-health/nutrition/how-nhmrc-develops-public-
health-guidelines
7 URL: https://www.nhmrc.gov.au/guidelinesforguidelines/standards
8 URL: https://www.nhmrc.gov.au/guidelinesforguidelines
9 URL: https://www.nhmrc.gov.au/about-us/publications/meeting-2011-nhmrc-standard-clinical-practice-
guidelines
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