New Guidelines Campaign

Written By MEANA Australia

What are the issues?

Scroll down to read the essential points in the template letter below.

What can you do?

Write to your local federal MP, and let them know your concerns about the old guidelines and the delay in updating them.


Step 1 - draft an email about your concerns or use the template provided below

Open your email program and draft an email about your experiences with the current guidelines. There is a template below which you might like to copy and paste, and tailor to suit your own experience. Feel free to use as much or as little of the email template as you like. Be sure to remove the text in [SQUARE BRACKETS] at the top and bottom of email before you send it.

Step 2 - find your local federal MP’s email address

Click on this link to find your local federal MP’s contact details https://www.aph.gov.au/Senators_and_Members/Guidelines_for_Contacting_Senators_and_Members

Step 3 - to maximise the impact of your email cc the Federal Health Minister and Federal Treasurer (email addresses provided below) and MEANA, so we can track the campaign.

Minister for Health and Aged Care Hon Mark Butler MP <mark.butler.mp@aph.gov.au>;

Treasurer of Australia Hon Dr Jim Chalmers MP <jim.chalmers.mp@aph.gov.au>;

MEANA <meadvocacynetworkaustralia@gmail.com>

Step 4 - also include your home address, as this will carry extra weight with your local representatives.

There is a space to include this at the top of the email template below.

Email template

To: [insert MP/Senator’s email address]
CC: Minister for Health and Aged Care Hon Mark Butler MP <mark.butler.mp@aph.gov.au>; Treasurer of Australia Hon Dr Jim Chalmers MP <jim.chalmers.mp@aph.gov.au>; MEANA <meadvocacynetworkaustralia@gmail.com>

From: [Your name], of [home address].

I am writing to you to urge the federal government to include adequate funding in the upcoming federal budget to expedite the development of new clinical guidelines for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).  Spending $1.5 million now on new guidelines will help reduce the $30 billion a year that ME/CFS costs the national economy, and improve the lives of over 500,000 people with ME/CFS in Australia and their families.

Key issues

With many Long COVID patients now meeting the diagnostic criteria for ME/CFS, it is estimated that the total prevalence of ME/CFS in Australia is over 500,000 people [1], resulting in costing the national economy over $30 billion per year [2].

The Royal Australasian College of Physicians’ (RACP) Chronic Fatigue Syndrome Clinical Guidelines 2002 are not only over twenty years out-of-date, they recommend extremely harmful treatments, such as Graded Exercise Therapy (GET).  GET was subsequently strongly denounced in a letter to The Lancet by over one hundred international ME/CFS researchers [3] and is no longer recommended in the UK’s 2021 NICE ME/CFS clinical guidelines or by the USA’s Centers for Disease Control and Prevention. 

Harmful exercise treatments are being prescribed for Long COVID patients, many of whom have ME/CFS.  Yet according to a 2023 study in Nature Review, 75% of people with Long COVID were harmed by exercise while only 1% were helped [4]. 

As recently stated at the Parliamentary Long COVID inquiry public hearings by a spokesperson from ME/CFS Australia Ltd, the national peak body for ME/CFS,

“In 2019 the ME/CFS Advisory Committee for the National Health and Medical Research Council recommended new guidelines.  Anne Kelso, the CEO, accepted that recommendation.  Since 2019, there has been nothing.  If we have half a million people with ME/CFS now, for $3 a head, for $1.5 million, we could co-design guidelines with patients, clinicians and researchers; it’s less than a tenth of the cost of one Medicare subsidised short GP consult.” Penelope McMillan, spokesperson from ME/CFS Australia Ltd at the 17 February 2023 public hearing on the Impacts of long COVID and repeated COVID infections, House of Representatives, Standing Committee on Health, Aged Care and Sport.

Key asks

My key asks include:

  1. The upcoming May 2023 federal budget include $1.5 million in funding for the National Health and Medical Research Council to progress the new ME/CFS clinical guidelines development.

  2. The development process be fully transparent, including which organisations and/or individuals are involved and what timelines are set.

  3. ME/CFS patient advocacy and support organisations are fully and meaningfully engaged throughout the process.

Spending $1.5 million now on new guidelines will help reduce the $30 billion a year that ME/CFS costs the national economy, and improve the lives of over 500,000 people with ME/CFS in Australia and their families. I therefore ask that you put an end to these damaging trends and expedite the development of new, safe, effective, quality, evidence-based clinical guidelines for ME/CFS.

 

Regards,

[Your name].


References

[1] The 500K+ estimate is calculated to include both COVID-19-derived ME/CFS cases and pre-COVID ME/CFS cases as: (11,362,275 x 10% x 25%) + 260,000.  It is based upon the following assumptions:

 [2] Close S, Marshall-Gradisnik S, Byrnes J, Smith P, Nghiem S and Staines D (2020) The Economic Impacts of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome in an Australian Cohort. Front. Public Health 8:420. doi: 10.3389/fpubh.2020.00420 (Note: the research paper’s annual figure of $14.5 billion is doubled to account for the more than doubling of ME/CFS prevalence after 2020).

[3] Tuller, D. Trial By Error: An Open Letter to The Lancet 3.0. 13 August 2018 http://www.virology.ws/2018/08/13/trial-by-error-open-letter-to-the-lancet-version-3-0/

[4] Davis, H.E., McCorkell, L., Vogel, J.M. et al. Long COVID: major findings, mechanisms and recommendations. Nat Rev Microbiol 21, 133–146 (2023). https://doi.org/10.1038/s41579-022-00846-2

MEANA Australia https://www.meana.me
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