Australia: News from Emerge Australia

The Emerge Australia guide has linked by Dolphin above:
Making informed decisions about your care and management is important because there are no cures, evidence-based treatments, or any medications the Therapeutic Goods Administration has approved for ME/CFS or long COVID.

Recommended management involves:

Many people want to know how a treatment might help and whether it’s the right option for them. People with ME/CFS and long COVID can respond differently to therapies that aim to manage symptoms. What works well for one person may not work the same for another.

Emerge Australia suggests that before starting any treatment, including those claiming to cure or provide a pathway to recovery for ME/CFS or long COVID, consider asking the following ten questions:

1. What is the theory behind the treatment?

  • There is no universal understanding of the cause of symptoms in ME/CFS. Be cautious of treatments that rely on unproven or unclear mechanisms.
2. What evidence supports the treatment?

  • Are there any well-designed clinical trials that have been published in reputable journals that are subject to peer review?
  • Patient testimonials tend to only show positive outcomes and are not considered robust evidence.
3. Does the treatment suggest that changing thought patterns can resolve symptoms?

  • There is no evidence that changing thought patterns addresses the underlying biological condition in ME/CFS and long COVID. Emerge Australia does not endorse these treatment approaches.
  • We do, however, support appropriate mental health care to help individuals cope with the emotional challenges of living with a chronic illness. These supports are not considered treatments for the illness itself.
4. When should I expect changes, and what should I notice?

  • Knowing when to expect change allows you to monitor your progress. If improvements are not occurring within the scheduled timeframe, follow up with your healthcare provider.
5. How can I monitor treatment outcomes?

  • Discuss with your health professional the best way to track whether a treatment has a positive effect. This might include symptom diaries, energy tracking, or other tools.
6. Are there potential risks or side effects?

  • Always discuss the potential risks and benefits. Be cautious of treatments claiming to have “no risk” or “no side effects.” All medical interventions carry some level of risk, whether physical, emotional, financial, or time-related.
7. How long is the treatment intended to last?

  • Some treatments are short-term, while others may be intended for long-term use. Understand whether you are committing for weeks, months, years, or potentially indefinitely.
8. What is the total cost of the treatment?

  • Some treatments can be very expensive. Make sure you understand the full cost and whether you have the financial capacity to complete the treatment.
9. Is there help available to pay for treatments?

*Several Medicare Care Plans are available in Australia:

  • Talk to your GP about your eligibility for the Chronic Disease Management Plan (CDM), Eating Disorder Plan (EDP), Mental Health Care Plan (MHCP), GP Management Plan (GPMP), and Team Care Arrangements (TCAs).
  • When booking an appointment to discuss these plans, ask reception if you need a longer appointment.
  • Click here to learn more.
*Pharmaceutical Benefits Scheme (PBS)

*Private Health Insurance

  • Some policies offer rebates for various services and non-PBS medications. Contact your provider or check your policy details for more information.
10. What If the Treatment Doesn’t Work?

  • A treatment that works for one person may not work for another. If a treatment doesn’t work for you, discuss alternative options with your healthcare provider.

Caution Around Recovery Claims​

We understand the desire for recovery from such a debilitating illness. Remember, there is no evidence-based treatment or cure for these conditions. We encourage individuals to be cautious and seek evidence-based care, following a biomedical approach in managing ME/CFS and long COVID.

Emerge Australia has received reports from some patients who felt like failures when a program or treatment didn’t lead to recovery or a cure. Some have felt pressured by the person providing the program or treatment into believing they didn’t try hard enough or follow the treatment correctly. While some treatments may help alleviate certain symptoms for some individuals, no treatment is universally effective.

To learn more about Emerge Australia’s position on recovery, pacing, rest, and graded exercise, please review our position statements using the button below.
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It's not terrible, but there's the idea of 'a treatment that works for one person may not work for another'. That leads people to feel that they should be endlessly, personally, searching for the treatment that works for them.

It also provides no education of the problems of placebo including expectation bias and coincidence with fluctuations unrelated to the treatment. Even the comment about 'well-designed clinical trials published in reputable journals a that are subjected to peer review' is not very helpful and potentially results in people believing things they really should not. It leads people to drawing conclusions about the utility of treatments without any warnings of how badly hope can lead people astray.

I think this document can and should be much better. I'm concerned that this might be indicative of where the Australian Clinical Guidelines are heading, propping up doctors who promote the idea that while there is no treatment that works for everyone, there are treatments that might work for you.

@Simone, can you comment? Can this Emerge document be improved? I'm particularly interested in how these problems can be prevented from flowing into the Australian Guidelines.
 
Just a few thoughts:

"Knowing when to expect change allows you to monitor your progress. If improvements are not occurring within the scheduled timeframe, follow up with your healthcare provider."

"A treatment that works for one person may not work for another."

These two sentences suggest there is hope that the treatments could work. Reading this as a newly diagnosed PWME, I would see 'treatments' as well worth trying. A desperate patient, compared to someone with no opinion one way or the other, would interpret it differently I would imagine.

The points explain how to manage treatments as you go through them. I felt genuinely confused by this seemingly tacit approval. Maybe the article is trying not to dismiss those who claim they have had good results from some treatment or other, but it comes across to me as being doggedly impartial about things that have never been shown to deserve it. I find it incredibly frustrating.
 
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