Myalgic Encephalomyelitis (ME/CFS) - Structured Rehabilitation
Dear National Health and Medical Research Council,
I am seeking 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.
Yours faithfully,
Zac Elwood
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.
Yours faithfully,
Zac Elwood
Dear Zac
Re - Freedom of Information Request: No. 2024/25-006
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:
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.
Please see the below information about the processing of your FOI request,
including a request from NHMRC to extend the processing period. Please
also note that NHMRC may contact you about possibly clarifying the scope
of your request (separately to this email).
Timeframe for receiving your decision – seeking an extension
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 6 January 2025.
NHMRC is seeking your agreement to extend the processing period of your
FOI request. As the NHMRC office will be closed from 25 December 2024–1
January 2025 (inclusive), this will impact on the processing period. We
ask that you please agree to an extension of 30 days under section 15AA of
the FOI Act to 5 February 2025.
Please email [2][NHMRC request email] by close of business Friday 13 December
2024 to advise whether or not you agree to this extension.
Separate from any agreed extension, please note that the overall timeframe
could be extended further if charges are levied and/or if we need to
consult with third parties (see 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
[3]Freedom of Information (Charges) Regulations 2019 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-day 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: [4][NHMRC request email]
Kind regards
Kate
____________________________________________________
NHMRC Freedom of Information
National Health & Medical Research Council
[5][NHMRC request email]
+61 (0) 2 6217 9000
[6]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 Zac
Re - Freedom of Information Request: No. 2024/25-006
This email is just a reminder that NHMRC is seeking your agreement by
close of business today, 13 December 2024, to extend the processing
period of your FOI request by 30 days.
Please note that as the NHMRC office will be closed from 25 December
2024–1 January 2025 (inclusive), this will impact on the processing
period.
If you agree to the extension, the due date for a decision on your request
will be 5 February 2025.
Please contact the FOI Unit as soon as possible by email at
[1][NHMRC request email], or by phone on (02) 6217 9000 if you have any queries
or would like to discuss.
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 <[NHMRC request email]>
Sent: Wednesday, 11 December 2024 2:32 PM
To: [FOI #12498 email]
Cc: NHMRC FOI <[NHMRC request email]>
Subject: FOI Request 2024/25-006 – Acknowledgement and seeking an
extension to the timeframe [SEC=OFFICIAL]
Dear Zac
Re - Freedom of Information Request: No. 2024/25-006
I refer to your request to the National Health and Medical Research
Council (NHMRC) under the [4]Freedom of Information Act 1982 (Cth) (FOI
Act) seeking:
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.
Please see the below information about the processing of your FOI request,
including a request from NHMRC to extend the processing period. Please
also note that NHMRC may contact you about possibly clarifying the scope
of your request (separately to this email).
Timeframe for receiving your decision – seeking an extension
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 6 January 2025.
NHMRC is seeking your agreement to extend the processing period of your
FOI request. As the NHMRC office will be closed from 25 December 2024–1
January 2025 (inclusive), this will impact on the processing period. We
ask that you please agree to an extension of 30 days under section 15AA of
the FOI Act to 5 February 2025.
Please email [5][NHMRC request email] by close of business Friday 13 December
2024 to advise whether or not you agree to this extension.
Separate from any agreed extension, please note that the overall timeframe
could be extended further if charges are levied and/or if we need to
consult with third parties (see 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
[6]Freedom of Information (Charges) Regulations 2019 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-day 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: [7][NHMRC request email]
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.
Dear Zac
Re - Freedom of Information Request: No. 2024/25-006
NHMRC notes that you have not responded to our below emails (of 11 and 13
December 2024), about whether you agree to extend the processing period
of your FOI request by 30 days.
We ask that you please respond as soon as possible, as the NHMRC office
will be closed from 25 December 2024–1 January 2025 (inclusive) and this
will impact on the processing period.
If you agree to the extension, the due date for a decision on your request
will be 5 February 2025.
Please contact the FOI Unit by email at [1][NHMRC request email], or by phone
on (02) 6217 9000, if you have any queries or would like to discuss.
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 <[NHMRC request email]>
Sent: Friday, 13 December 2024 4:54 PM
To: [FOI #12498 email]
Cc: NHMRC FOI <[NHMRC request email]>
Subject: Reminder: FOI Request 2024/25-006 – Seeking an extension to the
timeframe [SEC=OFFICIAL]
Dear Zac
Re - Freedom of Information Request: No. 2024/25-006
This email is just a reminder that NHMRC is seeking your agreement by
close of business today, 13 December 2024, to extend the processing
period of your FOI request by 30 days.
Please note that as the NHMRC office will be closed from 25 December
2024–1 January 2025 (inclusive), this will impact on the processing
period.
If you agree to the extension, the due date for a decision on your request
will be 5 February 2025.
Please contact the FOI Unit as soon as possible by email at
[4][NHMRC request email], or by phone on (02) 6217 9000 if you have any queries
or would like to discuss.
Kind regards
Kate
____________________________________________________
NHMRC Freedom of Information
National Health & Medical Research Council
[5][NHMRC request email]
+61 (0) 2 6217 9000
[6]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 <[7][NHMRC request email]>
Sent: Wednesday, 11 December 2024 2:32 PM
To: [8][FOI #12498 email]
Cc: NHMRC FOI <[9][NHMRC request email]>
Subject: FOI Request 2024/25-006 – Acknowledgement and seeking an
extension to the timeframe [SEC=OFFICIAL]
Dear Zac
Re - Freedom of Information Request: No. 2024/25-006
I refer to your request to the National Health and Medical Research
Council (NHMRC) under the [10]Freedom of Information Act 1982 (Cth) (FOI
Act) seeking:
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.
Please see the below information about the processing of your FOI request,
including a request from NHMRC to extend the processing period. Please
also note that NHMRC may contact you about possibly clarifying the scope
of your request (separately to this email).
Timeframe for receiving your decision – seeking an extension
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 6 January 2025.
NHMRC is seeking your agreement to extend the processing period of your
FOI request. As the NHMRC office will be closed from 25 December 2024–1
January 2025 (inclusive), this will impact on the processing period. We
ask that you please agree to an extension of 30 days under section 15AA of
the FOI Act to 5 February 2025.
Please email [11][NHMRC request email] by close of business Friday 13 December
2024 to advise whether or not you agree to this extension.
Separate from any agreed extension, please note that the overall timeframe
could be extended further if charges are levied and/or if we need to
consult with third parties (see 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
[12]Freedom of Information (Charges) Regulations 2019 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-day 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: [13][NHMRC request email]
Kind regards
Kate
____________________________________________________
NHMRC Freedom of Information
National Health & Medical Research Council
[14][NHMRC request email]
+61 (0) 2 6217 9000
[15]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.