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ME/CFS Awareness Day Symposium 2023 Q&A

What is the relationship between Ehlers Danlos Syndrome / ME / CFS / Lyme Disease?? Is it possible to have all 3?! 
Yes, it is possible to have all three. We know that there is a significant overlap between several conditions, including connective tissue problems such as EDS, although why having EDS might put someone at higher risk of ME/CFS is not yet understood. We also know that infections are often the trigger for ME/CFS. Dr Schloeffel emphasises identifying all conditions that someone might have, then managing them, to help reduce symptoms. 

Have you encountered any research that links childhood trauma and the inflammation that comes as a result, to ME/CFS & Fibro? 
In the past, there have been some studies which suggested a link between childhood trauma and an increased risk of ME/CFS (https://jamanetwork.com/journals/jamapsychiatry/article-abstract/482949). However, The US National Academy of Medicine, in its extensive review of the literature review in 2015, noted that other studies have not found an increased rate of mental health conditions (including sexual abuse) in ME/CFS (https://onlinelibrary.wiley.com/doi/abs/10.1111/j.1651-2227.2009.01323.x 

Having said that, some of the physical changes that happen due to adverse events in childhood mean that a link is plausible. For example, some research suggests that adverse events in childhood can “prime” the immune response to be susceptible to developing something like ME/CFS when exposed to an infection (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3856907/), which may be related to changes in how the body deals with stress.  

It is important to note that, even in people with a history of childhood adverse events, psychological treatment is not a cure for treatment for ME/CFS. Psychological treatment can help heal childhood trauma, but ME/CFS symptoms will remain.   

What happened to the Fatigue Clinic with Alfred Hospital which used to be focusing on ME/CFS patients?  
The Alfred Hospital Fatigue Clinic closed in 2020  
 
Are there going to be any government supported clinics in Australia and Melbourne in particular when ME/CFS can get help, especially in the days of crisis? The Emergencies in our hospitals do not have any protocols on how to help these patients. They refer them to the psychiatrists in most cases 

We are unaware of plans for any government supported clinics in Australia, or specifically Melbourne, for people with ME/CFS. This kind of specialised care is something Emerge Australia has advocated for, particularly in light of the Long COVID clinics that were established. With news that most Long COVID clinics are closing, and following recommendations from the Long COVID inquiry, we don’t see this kind of specialist care as a government priority at this time. More focus is being placed on existing structures, like utilising GPs and community organisations to support patients.   

Richard, do you ever have patients come to a “ward round” kind of situation to educate doctors you are teaching? 
Richard sees patients privately, so a ward round type scenario isn’t something he is involved with. He does work closely with colleagues, oneonone, to discuss patients and provide mentoring/teaching 

Emerge Australia is looking at ways to bring real patient experiences to the teaching environment. This year’s GPCE involves three hours of lectures and two hours of online case studies after the event. The lectures include how to do a comprehensive physical assessment on a real ME/CFS patient and the case studies are based on real (de-identified) patients.  

Dr Schoeffler – what percentage of the ME/CFS patients you have worked with attained FULL recovery rather than reduced symptomsThank you! 

Dr Schloeffel has been able to help many patients improve their symptoms. Many of his patients are able to at least return to part time work or study. It’s not possible to follow up all patients due to funding and time constraints.  

Does monitor breathing rate and shallowness contribute to me/CFS symptoms? –  
Breath dysfunction, such as shallow breathing, is a problem in many conditions. Breathing without using the diaphragm will use more energy, and can produce symptoms such as dizziness, fatigue and feeling anxious. A weak diaphragm muscle can even impact your balance 

Learning how to breathe properly is likely to be a useful thing for anyone, including people with ME/CFS, and may help to reduce some symptoms, if it is something that is a problem for them as an individual. There’s no evidence to say that breath dysfunction is the cause of ME/CFS. 

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