Apologies for all the acronyms and brackets in the post below. We’ve tried to make this as clear as possible so that we can keep you informed about a (sadly this time – negative) development that could impact on the treatment and welfare of people with ME/CFS.
WHAT HAS HAPPENED?
The Royal Australian College of GPs (RACGP) Handbook of Non-Drug Interventions (HANDI) Working Group have published guidelines on Graded Exercise Therapy (GET) in an international journal (the official journal of the UK’s Royal College of General Practitioners) recommending GET as an effective treatment for ME/CFS.
WHY IS THIS A PROBLEM?
The problem is that the recommendations draw heavily on the discredited / controversial PACE trial. While we acknowledge that some patients have responded positively to Graded Exercise Therapy, in a number of patient surveys the vast majority of respondents report that they have been harmed by taking part in exercise programmes. In addition to this exercise as an answer to ME/CFS is rooted in the outdated idea that patients are somehow ‘deconditioned’ (i.e. have lost muscle tone) through an erroneous or psychiatric belief that they are unwell and that patients can be restored to pre-illness condition simply through exercising. This goes completely against all of the huge progress that has recently been made – including in Australia – identifying biological differences between patients with the condition and healthy controls. Perpetuating the idea that patients have ‘false illness beliefs’ or that ‘the answer is exercise’ increases the stigma surrounding the condition, leads to patients being dismissed by doctors and continues the likelihood that more patients might be harmed by exercise programmes. It also has a direct negative impact on funding decisions that seek to investigate the biomedical basis of ME/CFS.
CAN YOU GIVE ME SOME MORE BACKGROUND?
The guideline was first published on RACGP’s website in 2015 and has been accessible to all Australian GPs for more than three years. It has been the focus of advocacy efforts by Emerge Australia, and other Australian advocacy groups, in that time. Several efforts have been made to meet and communicate with RACGP, asking them to review their recommendation in light of more recent research providing objective evidence of abnormal response to exercise, and of the growing acknowledgement of the significant flaws in GET research.
WHAT CAN I DO ABOUT IT?
- Ask for a meeting with your MP: it’s unlikely that direct contact from patients to the RACGP will be beneficial in this instance. We definitely recommend asking for a meeting with your state and federal MP about the issues surrounding medical treatment and the need to update GP guidelines for ME/CFS. Emerge Australia LOVES to support patients with these meetings and can provide ‘cheat sheets’ for meetings and template letters asking for a meeting. Please email firstname.lastname@example.org to ask for assistance with reaching out to your MP.
- Help us to reach as many GPs as possible with details of our new evidence-based education module when it’s released in a few weeks. We’re developing a big campaign where we will be asking patients, friends and carers to send out flyers so we can reach as many GPs around Australia as possible (more info on the GP education below).
- Support (or continue to support – thank you!) Emerge Australia. Every dollar raised for our organisation helps us to continue fighting for recognition of ME/CFS as a real biomedical illness and for the development of effective treatments.
WHAT IS EMERGE AUSTRALIA DOING ABOUT IT?
- Several efforts have been made to meet and communicate with RACGP, asking them to review their recommendation in light of more recent research providing objective evidence of abnormal response to exercise, and of the growing acknowledgement of the significant flaws in GET research. Sadly, to date, RACGP has not met with us. Last year we managed to secure 2 or 3x meeting dates for CEO Heidi to meet with then President Bastien Seidel but each meeting was cancelled and rescheduled.. and then eventually not rescheduled (by them). We will be reaching out to the new President of RACGP and to the HANDI working group asking them to meet with us to discuss progress in biomedical research and why they are still referencing the PACE trial – in conflict with patient wishes and in conflict with huge numbers of well respected international researchers.
- We will be launching an online GP education module in the next few weeks which gives doctors professional development credits (through a platform called Think GP which GPs use) based on the Center for Disease Control guidance in the US. This evidence-based education module will give GPs better tools to diagnose ME/CFS and to manage patients to improve their quality of life using tools such as pacing (managing the energy expenditure in a given day or time period) and stepwise symptom management. We’ll also be launching a big publicity campaign to get the word out about the module.
We absolutely share the frustration of the patient community that this article has been published, especially at a time when real progress is being made, both in terms of biomedical research and improved impact of advocacy efforts from the patient community and organisations such as Emerge Australia. The recently published landmark report from NHMRC’s ME/CFS Advisory Committee acknowledged the need for greater funding for biomedical research into ME/CFS and has already resulted in a $3m grant, which is a huge leap forward in terms of recognition of ME/CFS as a biomedical disease.
We will continue to fight for justice for Australians with ME/CFS, and for full recognition of ME/CFS as a biomedical disease. We will be campaigning hard for RACGP to acknowledge the biomedical basis of ME/CFS and we’ll be putting in the hard yards to get the GP guidelines changed.