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
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
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.
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
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.
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
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.