Living with disabling conditions like ME/CFS and long COVID, with energy limitations that restrict what you can do, can be very challenging. There are many losses associated with living with these chronic conditions, as they affect all aspects of your life. From the realisation that your health isn’t improving, to the shock of receiving a
Pacing and rest are individualised and essential management techniques for people with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Pacing and rest promote safe levels of activity to manage post-exertional malaise (PEM), the hallmark symptom of ME/CFS.
Emerge Australia welcomes the Federal Governments announcement that Medicare rebates will be made permanent for online and over-the-phone telehealth services provided by GPs, specialists and allied health practitioners.
Summary Although exercise therapy has historically been recommended as a primary treatment for ME/CFS, and is increasingly promoted for long COVID, the supporting evidence is limited, particularly in cases where post-exertional malaise (PEM) is present. Studies indicate that exercise therapy may not be effective for people with ME/CFS or long COVID who experience PEM. Additionally,
Statement Pacing and rest are individualised and essential management techniques for people with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and long COVID. To enhance their pacing practice and minimise post-exertional malaise (PEM), some patients use changes in their heart rate as a guide, to stay within their energy limits. By monitoring their heart rate and avoiding
2024 has been a busy year for the Emerge Australia clinical education team. We continue to build our capacity to educate as many Australian Health Practitioners as possible on ME/CFS and long COVID. As an important step, this year saw Emerge Australia becoming an RACGP CPD approved provider and delivering two RACGP CPD approved webinar
ME/CFS and long COVID are conditions that affect your body’s ability to work properly; they are not psychological conditions. However, it’s common to need support with mental health when living with long-lasting physical symptoms. Professional help can guide you through the challenges these conditions bring, help you adjust to a new way of life, and
ME/CFS and long COVID are conditions that cause your body to not work properly, they are not psychological conditions. But it is not uncommon to need support with mental health when living with physical symptoms that don’t go away. Professional support can help you learn to cope with the challenges your illness brings, adjust to
In addition to ME/CFS, it common for people living with ME/CFS to have other conditions including fibromyalgia, irritable bowel syndrome and orthostatic intolerance amongst others.
As part of Emerge Australia’s commitment to providing up-to-date and evidence based management techniques we have launched a recurring webinar series. You can find those as well all the recent recordings from previous events below. Living with ME/CFS Q&A with Dr Richard Schloeffel OAM World ME/CFS Symposium 2023 Basics of ME/CFS Q&A with Dr Richard
Many symptoms of ME/CFS can make communicating difficult. Some people who live with ME/CFS report that at times they struggle to recall information, lose their train of thought easily and find comprehending and processing new information difficult.
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a complex and disabling disease that affects many parts of the body, including the brain and muscles, as well as the digestive, immune and cardiac systems, among others.
Published November 2022 Statement Emerge Australia uses the name ME/CFS as an umbrella term to encompass the varied diagnoses for which PEM is the core feature. Emerge Australia will continue to use this term until the science has definitively concluded whether the illness is one or more separate conditions, and there is consensus on a
In 2018, Emerge Australia launched a paper petition to demand better access to the NDIS for people with ME/CFS. After gathering 1400 signatures, it was tabled in Parliament by Greens MP Adam Bandt on 5 December 2018. We launched the same petition online and over 10,273 people signed. The petition has paved the way for
In March this year, the federal government made a range of telehealth medical services temporarily available through Medicare. After many years of campaigning for telehealth services for people living with ME/CFS and other chronic illnesses, Emerge Australia and the ME/CFS community have warmly welcomed this change. The current arrangements were originally intended to expire in
Although there are no TGA approved treatments for ME/CFS or long COVID, healthcare practitioners can do a lot to support people with these conditions. This includes helping patients with:
Energy management: pacing and rest
Step-wise symptom management
Practical support
In addition to our healthcare practitioner information, the Emerge Australia webpage has a wealth of information practitioners may find helpful to share with their patients.
The National Disability Insurance Scheme (NDIS) aims to give people with disabilities (and their carers) choice and control over the services and support they receive but many people living with ME/CFS face significant challenges gaining access to the scheme and receiving adequate funding. Anecdotal evidence suggests many people with ME/CFS are rejected from the NDIS
Emerge Australia strongly advocates for the Federal Department of Health to make post-infection disease Australia’s 10th National Health Priority Area (NHPA). The number of Australians living with post-infection disease is rapidly increasing, predicted to be over half a million by the end of 2022, due to a new cohort of post-infection disease patients: those with long COVID.[1] Such numbers will increase the already significant burden of post-infection disease on our health system, economy and society.
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The National Disability Insurance Scheme is designed to give people with disabilities the support they need to live independent, ordinary lives. It is not means tested – anyone with any level of income or assets can apply, as long as they meet the criteria of having a significant functional impairment. The insurance-based scheme provides disability-related
To manage your ME/CFS well, you will need a number of different healthcare professionals to help you deal with your ME/CFS symptoms and any other health conditions you may have.
Many doctors and other healthcare professionals do not specialise in ME/CFS, but they can play a valuable part in your care and health management.
Many symptoms of ME/CFS can make communicating difficult. Some people who live with ME/CFS report that at times they struggle to recall information, lose their train of thought easily and find comprehending and processing new information difficult.
http://emerge.org.au/pages/category/health-professionals
Ricky Buchanan worked with Emerge Australia to write this in 2021 and was too ill to update or add to it in 2022, as her severe ME/CFS has worsened. Ricky has again kindly allowed us to share her tips in 2023. Ricky describes herself as a Geek-Creative-Writer-Disabled-Bedridden-Queer-Internet Citizen. Ricky has been a severe ME/CFS patient
Advance care planning promotes care that is consistent with a person’s goals, values, beliefs and preferences. It prepares the person and others to plan for future health care, for a time when the person may no longer be able to communicate those decisions themselves.
Emerge Australia has put together this guide to help you understand what someone with ME/CFS may be experiencing, and to provide some tips to help support them to stay connected.
ME/CFS is a permanent condition for most people. Less than 10% recover to pre-illness functioning and 20% of patients may worsen with time.[1] Despite this, many people with ME/CFS experience significant difficulties accessing the National Disability Insurance Scheme (NDIS).
A national, Optimal Care Referral Pathway (OCRP) will provide all people with ME/CFS consistent care across Australia, using an evidence-based, best practice pathway that empowers patients and clinicians to navigate support of complex, multi-system conditions such as ME/CFS, and other post infection diseases, such as long COVID.
Join Emerge Australia’s Nurse Educator Kate Herbert as we dive into the basics of ME/CFS, including outdated and current understanding of ME/CFS, the importance of post-exertional malaise (PEM) in diagnosis, and management techniques such as pacing that you can use to manage life with ME/CFS.
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