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
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.
We are unaware of plans for any government supported clinics in Australia, or specifically Melbourne, for people with ME/CFS. This kind of care is something Emerge Australia has advocated for, particularly 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 . More focus is being placed on existing structures, like GPs and community to support patients.
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 and the case studies are based on real (de-identified) patients.
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.
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.