Episode 149: BACK FROM HIBERNATION: NEW EPISODE
Uninvisible Pod with Lauren Freedman
Shownotes Transcript
Chris Armstrong, PhD was first introduced to Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)) through research into metabolomics at the University of Melbourne, Australia. As he delved deeper into his work, he discovered its connection to ME/CFS patients, and empathized so much with their plight – and the lack of resources, funding, and research available to both patients and clinicians – that he made it his mission to continue research in this field in the hope of finding a cure. Since publishing his first ME/CFS metabolomics study in 2015, he has continued research into the disease, spurred on by patients whose stories have moved him. As the Open Medicine Foundation)’s Science Liaison, Chris works on collaborative studies with their partner organizations and helps to translate scientific language for the public. He is also a Visiting Scholar at Stanford University.
Key links mentioned in this episode:
Open Medicine Foundation)
OMF on Facebook)
OMF on Twitter)
OMF on Instagram)
Tune in as Chris shares...
how he got involved in ME/CFS research
his main area of expertise: metabolomics
that ME/CFS outbreaks can be traced back as far as the mid-19thC, with symptoms commonly related to significant concerns with fatigue, sleep, pain, brain fog, and a 50% loss of general function
a description of PEM – post-exertional malaise – which is the main component of ME/CFS
that there are up to 50 symptoms associated with ME/CFS, but the main five are: PEM, fatigue, unrefreshing sleep, cognitive impairment, and pain
that ME/CFS is highly comorbid with fibromyalgia and other invisible illnesses
that ME/CFS was originally described as a flu- or polio-like illness; and was first properly explained by the Ramsay definition and given the moniker of “Myalgic Encephalomyelitis”
that patients need to have ME/CFS for 6+ months in order to receive a diagnosis
one of the major schools of thought with regard to ME/CFS: that it stems from a dysfunction of stress response in the body; it’s possible, however, that bacteria and other pathogens may also play a role in onset
that 1 in 200-300 people has ME/CFS
that ME/CFS is NOT categorized as a rare disease; but it’s treated by the medical community as such – creating stigma through lack of research and understanding
that ME/CFS has been commonly misdiagnosed as a form of hysteria – both in the past and in the present
that very few clinicians dig in deep enough with their patients in order to give them an ME/CFS diagnosis – but that burden is not just on doctors, as diagnostics and treatment guidelines need to be standardized in order to support their work
that the Open Medicine Foundation)** **was built to provide effective treatments for ME/CFS patients
that meeting patients has inspired him in his work, even from the very beginning
the desperate need for funding for continued research into ME/CFS
the politics of funding medical research
that ME/CFS is often considered to be more a psychological than a physiological illness
that the National Institutes of Health)** **(NIH) has been more receptive than some Aussie governing bodies when it comes to research into ME/CFS
the biggest bright spot in ME/CFS: the momentum of funding for research
OMF’s collaborative research initiatives with Harvard, Stanford, and others
that ME/CFS could be a collection of several diseases, and not one disease in and of itself
the importance of specifics in diagnostics
why medicine needs to be patient-centered
the importance of pacing in order to avoid a crash related to PEM This is a public episode. If you would like to discuss this with other subscribers or get access to bonus episodes, visit uninvisiblepod.substack.com)