ME/CFS South Australia Inc supports the needs of sufferers of Myalgic Encephalomyelitis, Chronic Fatigue Syndrome and related illnesses. We do this by providing services and information to members.
ME/CFS South Australia Inc aims to keep members informed of various research projects, diets, medications, therapies, news items, etc. All communication, both verbal and written, is merely to disseminate information and not to make recommendations or directives.
Unless otherwise stated, the views expressed on this Web site are not necessarily the official views of the Society or its Committee and are not simply an endorsement of products or services.
NHMRC ME/CFS Advisory Committee Report To The CEO – Making Submissions
Saturday 16 February 2019
From the ME/CFS Australia (SA) Inc committee:
Daunted by the process for responding to the NHMRC Draft Report?
ME/CFS SA has pulled together some information to assist with your submission process, including what you might say and how to submit.
Submission Guidelines from NHMRC
The report is available at: https://consultations.nhmrc.gov.au/public_consultations/mecfs-2019a
Closing date for submissions is 11:29pm (ACDT) 18th February 2019.
The NHMRC committee will only consider submissions that address the five prescribed consultation questions. These are:
Up to 300 words is allowed for answering each question. You can save your work and return to the submission process. There is no automatic save function, so please remember to save your answers regularly.
Submissions will not be considered if they are:
It is just as important to indicate those aspects of the report that you support, as well as those you wish to see amended.
It may help the NHMRC if you are able to indicate which section of the report you are talking about when you make a comment. But the most important thing is simply to let them know what is important to you.
Many people have expressed confusion about how to begin developing a submission. In particular, there has been concern about how to determine what sort of material to include under which of the five given questions.
To obtain a copy of one or both documents, please email firstname.lastname@example.org
Also, #MEAction Network Australia (MEANA) have produced a document based on member discussions, with some of the main concerns of patients described under each question. Many thanks to MEANA for this.
The MEANA document is available here: https://bit.ly/2G7glQU
Please remember to use your own words in your submission as identical responses will be disregarded.
To register for submitting a response, go to https://consultations.nhmrc.gov.au
Registration requires an email address, name and address. After registration, an email will be sent to you to confirm registration. The email will contain a link where you create your own password. You need to respond to this email within a stated time limit.
In the screenshot below, we have added an upward-pointing arrow (1) for the link to register, after which you can use the sideway-pointing arrow (2) for the link to set up a submission.
Your submission will have five parts:
On the each page of the submission site is a navigation list on the left-hand side, with those five parts. Click on each heading to complete the required details.
At the bottom left hand corner of each page are the options to Save and Preview. Saving takes you to a page showing your details. Bookmark this page, and use the 'Edit' link to continue your submission.
There is no auto-save function for your submission drafts. You will need to ‘save’ each time before you leave the page.
At the bottom left hand corner of the NHMRC submission page are the options to Save and Preview. Saving takes you to a page showing your details. You can bookmark this page, and use the 'Edit' link to continue your submission.
The submission pages will automatically log you out if you leave them unattended too long. Remember to save your work each time you take a break and to keep a record of your login details, so that you can log back in easily if you get timed out.
When you are happy with your saved submission, remember to hit the 'Submit' button!
If you have difficulty with anything technical on the NHMRC website, please email ME_CFS@nhmrc.gov.au for assistance.
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