National Health and Medical Research Council (NHMRC) Draft Report “Read-a-Long” Part Four

We’ve come to the end of the NHMRC’s draft report into ME/CFS ‘read-a-long’ which means the writing part starts now. If you haven’t been able to read the whole report, you are still able to provide feedback on the sections that you have read. By submitting your feedback, you are providing essential information to the Committee, so we really encourage you to write something, no matter how short it is.

You can register here to make a submission: https://consultations.nhmrc.gov.au/user/register
The submission does not need to be completed in one go, as you can save and finish it later. You can do this as many times as you need, up until 11.59pm on Monday 18th February.

Throughout the ‘read-a-long’ we asked you to note down what you liked about the report, along with the parts you thought could do with some revising. These notes will help in shaping your response to the consultation questions provided by the NHMRC as follows:

  1. Does the draft Report provide an accurate summary of:
  • the difficulties faced by ME/CFS patients in receiving clinical care
  • the challenges facing clinicians in providing care when there is lack of clarity on diagnostic and management tools, and minimal professional education about the condition?
  1. Do the research and clinical guidance recommendations accurately:
  • address the specific needs of the ME/CFS community
  • provide an accurate representation of the current gaps in research
  • inform the CEO of research options and clinical guidance needs that are relevant for ME/CFS patients?

Due to its nature, the draft report may have a major impact on health policy. Some of the content explored in the report includes graded exercise therapy (GET), the PACE trials, as well as challenges faced by patients when attempting to access the National Disability Insurance Scheme (NDIS). These may be areas that you wish to focus on when writing your feedback.

Whilst there is no correct way of submitting feedback, as it is entirely up to you, we suggest a format to follow for each question includes one positive thing, one thing you think could do with some revising, along with a short summary of why it requires revision. Your feedback can be presented in any way you like (paragraphs, dot points), but you should not exceed 300 words per question as per the NHMRC’s requirements.

For further information on how to submit your feedback as well as their submission guidelines, check out the NHMRC website here: https://consultations.nhmrc.gov.au/submission-guidelines

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