Australia: National Health and Medical Research Council (NHMRC): Development of ME/CFS guidelines

Press release from Australian government announcing $1.1 million for the NHMRC to develop ME/CFS guidelines

https://www.emerge.org.au/news/medi...tter-support-for-people-with-chronic-fatigue/

OFFICIAL



MARK BUTLER MP

MINISTER FOR HEALTH AND AGED CARE

MEDIA RELEASE

BACKING BELIEF WITH BETTER SUPPORT FOR PEOPLE WITH CHRONIC FATIGUE

The Albanese Government has heard the calls for better support for people with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), Long COVID and related conditions, with funding to develop new Australian clinical guidelines.

The Government will provide $1.1 million to the National Health and Medical Research Council (NHMRC) to develop the guidelines in consultation with patient groups, health professionals, and medical scientists.

Consultations will include engagement with Emerge Australia, ME/CFS Australia, the Royal Australian College of Physicians and the Royal Australian College of General Practitioners, among others.

ME/CFS is a neurological condition affecting up to 250,000 people in Australia.

Symptoms can be debilitating and include sleep issues, pain, problems with memory, sensitivity to light, touch and sound, problems with standing and balance, and body temperature and weight.

A central feature of ME/CFS is post-exertional malaise (PEM), which means that symptoms can get worse after physical or mental activity for some people. Adults and children can also experience recurrent and persistent flu-like symptoms.

The new guidelines will determine diagnostic criteria to help doctors and their patients with better treatments, coping strategies, and options for care.

In addition to ME/CFS, the guidelines will make reference to other post-infection onset conditions with similar or aligned symptoms, like Post-Acute Sequelae of COVID-19, also known as Long COVID, postural orthostatic tachycardia syndrome (POTS) and fibromyalgia.

Quotes attributable to Minister Butler:

“I’d like to thank people with ME/CFS for their ceaseless campaign to be heard and believed in the face of, frankly, years of doubt and disregard.”

“ME/CFS does not discriminate. It affects people of all ages, ethnicities, and socioeconomic backgrounds.

“The development of new Australian clinical guidelines will provide GPs and their patients with better diagnosis, treatment and care.

“The NHMRC will lead the development of these guidelines, in consultation with and for the benefit of the more than 250,000 people who suffer daily, often silently, with ME/CFS and related conditions.”

Quotes attributable to Emerge Australia CEO, Anne Wilson:

“The Albanese Labor Government is the first Australian Government in over 20 years to fund development of clinical guidelines for people with ME/CFS.

“This is a landmark and monumental announcement by Health Minister Mark Butler.

“It will be a game changer for Australia’s 250,000 people with ME/CFS. They have been seen, heard and not left behind.”

Quotes attributable to ME/CFS Australia Spokesperson, Penelope McMillan:

“We welcome this exciting announcement. Thank you to Minister Butler and his department for their commitment to this much-needed development in the care of people with ME/CFS, Long COVID, and related conditions.

“We look forward to working alongside other groups representing patients and our colleagues from the health professional groups and experts in the evaluation of scientific evidence.

“This will change lives for patients and those who care for them.”

MONDAY, 17 JUNE 2024

MEDIA CONTACT: Lucy Caruso:

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Emerge Australia press release:
https://www.emerge.org.au/news/stop-press-update-me-cfs-clinical-guidelines/

Media release: published 20 June 2024

New Hope for Australians battling ME/CFS and Long COVID
Emerge Australia, the national patient organisation for people living with ME/CFS and Long COVID, has welcomed Federal Government funding to update evidence based clinical guidelines, so health professionals can better diagnose and manage these debilitating conditions.

Emerge Australia’s chief executive officer, Anne Wilson said today, “we congratulate the Federal Health and Aged Care Minister Mark Butler for his government’s leadership on this critical and long -awaited decision, and express our appreciation to the Minster’s team and the Departmental personnel who have shown courage and thought leadership on behalf of over 250,000 Australians with ME/CFS alone.”

“Australia’s ME/CFS clinical guidelines are over 20 years old. This is the first government who has been willing to address these outdated clinical guidelines that do not reflect international best practice in the care of patients. We are truly grateful for the advocacy from many people, over many years that has led to this announcement.”

Today, the Minister has confirmed that his department is working with the National Health and Medical Research Council (NHMRC) to commission this vital work.

“The guidelines will follow the rigorous NHMRC guideline standards and will include an opportunity for all Australians to have their say on draft guidelines. The guidelines will take two to three years to develop and the NHMRC will consult broadly with all stakeholder groups representing patients and with health professional groups and experts in the evaluation of scientific evidence,” Minister Butler said in a letter to Emerge Australia today.

In welcoming this significant milestone, Anne Wilson explained that she is looking forward to continuing this vital trajectory with ongoing, advanced discussions unfolding around much needed funding for clinical education, patient support and research.

“We welcome this first step and will continue to emphasise the urgent need for more to be done for those living with ME/CFS and Long COVID.”

Emerge Australia, provides patient support, information, clinical education, advocacy, and biomedical research for up to 500,000 people living with Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS) and Long COVID.

Contact: Claire Heaney Emerge Australia. Anne Wilson CEO Emerge Australia is available for interview

 

We’ve been sitting on this information, itching to be able to share it! This is a huge win for us! Finally, Australians with ME/CFS will get updated guidelines.

I met with the Health Minister almost two months ago, and I came away feeling very encouraged and optimistic that he would provide this funding for clinical guidelines. Despite the “chronic fatigue” headline in his media release, he had a good (for a politician) awareness of ME/CFS and recognised the need for updated guidelines.

We’ve got a long way to go yet, obviously, but funding has been the major obstacle.

 

Congratulations and well done!

 

This is fantastic, @Simone. Thank you for all your work in getting to this point.

 

Well done Simone and congratulations to everyone else involved!

 

Well done Simone!

 

Still haven't figured out how Australia is such a hotspot for ME/CFS, having the same estimated patient population as the UK despite the UK having 2.5 times larger general population.

 

https://www.medicalrepublic.com.au/...elines-to-drop-graded-exercise-therapy/108489

New guidelines for treating long covid and myalgic encephalomyelitis/chronic fatigue syndrome are to be developed by the National Health and Medical Research Council – but we already know what the biggest change will be.

They will recommend against graded exercise therapy, which patient advocates say is discredited, harmful and out of step with other countries’ guidelines.

 

The guidelines for the history of the disease in Australia have pretty much been that a diagnosis of CFS requires 6 months of fatigue.

That might have something to do with it.


Prevalence numbers range from 0.25% to 1% of the population, probably depending on the diagnosis used.

25m people in Australia comes to 250k at 1%
67m people in UK comes to 250k at 0.37%

 

Merged thread

New long covid/CFS guidelines to drop graded exercise therapy

An announcement has pre-empted the chief recommendation in new guidelines before they are developed.

New guidelines for treating long covid and myalgic encephalomyelitis/chronic fatigue syndrome are to be developed by the National Health and Medical Research Council – but we already know what the biggest change will be.

LINK

 

If I understand right this is Australia-wide?
Great news.

 

Includes:

The RACGP, as part of its HANDI resource (Handbook of Non-Drug Interventions), suggests incremental physical activity for CFS/ME with “moderate” confidence and several caveats, on a page last updated in April. Graded exercise therapy is a form of incremental physical activity.

Slowly increasing exercise over time has “been shown to improve muscle strength, cardiovascular endurance and symptoms in a wide variety of conditions that have chronic fatigue as a symptom, such as heart disease, cancer, chronic obstructive pulmonary disease and post-viral fatigue”, the page says.

“How it works is not understood but it may prevent/reverse the secondary physical deconditioning and exercise intolerance related to prolonged (relative) inactivity … Although GET has been extensively tested in clinical trials, it remains controversial within some support groups.”

The RACGP’s president Dr Nicole Higgins told The Medical Republic today that the HANDI page was “not a clinical guideline for long covid, or for CFS/ME. It is one possible non-drug intervention for the management of symptoms, where patients may wish to try gradually increasing their physical activity in partnership with their GP. It states that this approach will not be suitable for all patients.”

She said several trials and a Cochrane review supported this approach.

“While no randomised controlled trial is perfect, the evidence overall is in support that some patients do benefit from a graded increase in physical activity,” Dr Higgins said.

“In all, there are around 250 registered clinical trials for long covid under way, with 120 published. Of those, 118 include a physical activity intervention, with 57 publications so far … The RACGP has advocated for government funding for the establishment of living guidelines across a range of topics, and this is a case study for why such funding is so necessary.”

 

https://www1.racgp.org.au/newsgp/clinical/advocate-says-long-covid-guidelines-will-help-addr

Pretty remarkable that in an article posted by the RACGP addressing gaslighting, they defend the pseudoscience behind the gaslighting. With an invalid excuse, it's actually the opposite and anyway there is no technique or element of supervision here. WTH does appropriate experience even have to do with anything? They can't even come up with plausible denial, it's just word salads of cheap excuses.

 

It looks like the NHMRC is recruiting for the Guideline Development Group for the proposed new ME/CFS guidelines. They have asked the RACP to nominate members of the college.

The "structured rehabilitation relevant to ME/CFS" criterion seems problematic to me given there's no evidence that rehabilitation is beneficial or even relevant to those of us with ME/CFS.

 

Making sure the old boys network is there to prevent the old boys network from being pushed aside