Deakin Research Scientist (PhD) examining immunology, metabolism, hematology, cancer, cytokines, ME/CFS. Views are my own. Tweets not medical advice
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Jul 1, 2020 • 11 tweets • 12 min read
1/ The problem with Myalgic Encephalomyeltis/Chronic Fatigue Syndrome #MECFS is that it seems so ridiculous that exercise could actually make patients worse
How can exercise be so bad for #pwME but so good for almost every other serious illness?
THREAD
2/ New study by @4WorkWell@sunsopeningband et al shows that #MECFS patients have metabolic defects that cannot be explained by exercise phobias, deconditioning or 'illness beliefs'
@NEJM study found >50% of #COVID19 patients had neurologic involvement including encephalopathy, agitation, confusion & corticospinal tract abnormalities
This @jama study found that patients with severe #COVID19 were more likely to have neurologic symptoms including acute cerebrovascular disruptions, impaired consciousness, and skeletal muscle injury ja.ma/3ezlAqE
Apr 13, 2020 • 8 tweets • 8 min read
Thread:
12 reasons that <some> doctors disbelieve patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome #MECFS
1. Doctors tended to see #pwME as having “certain personality traits"
1/ The Australian Fed government is using #COVID19Aus ‘mitigation’ modelling which permit ‘controlled burns’ of #SARSCoV2 through the population resulting in unnecessary deaths
doherty.edu.au/uploads/conten…2/ Current federal government #COVID19Aus policy is based on 'mitigation' modelling where the #coronavirusaustralia is allowed to spread with a reproductive number R0 of >1.0 which would allow 10s-of-1000s of unnecessary Australian deaths
Many #MECFS patients are told that they are simply tired, stressed, anxious, depressed, lazy or malingering
How can #pwME respond to such disbelief and lack of understanding??????
See thread below:
2. Below are 7 evidence-based scientifically supported findings that you can use to inform those who dont understand that #MECFS is a multi-organ, systemic and severely debilitating illness
In 1882, Anna O is considered 'patient zero' for the diagnosis of "Hysteria"
#Hysteria was originally a diagnosis only given to women
Anna O fell ill in 1880 after her father died, possibly of Tuberculosis 2. Her symptoms: severe 'nervous' #cough, paralysis, numbness, vision/hearing/speech disturbances, hallucinations, #cognitive difficulties
She was diagnosed with "Hysteria" by Breuer and Freud in ~1882
Nice @FrontPediatrics paper providing guidance for docs and #pwME in the diagnosis and management of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome #MECFS
#pwME "..have been humiliated or dismissed by other providers, so [doctors] will need to be.. nonjudgmental.. & acknowledge that #MECFS is not a #psychological condition but a real illness"
#pwME experience <pathological> fatigue after #exercise which can be long-lasting and includes debilitating fatigue, flu-like symptoms, cognitive impairment, #sleep disturbance
#pwME are #SickNotWeak1. These studies “provide evidence of #neuroinflammation in #MECFS.. as well as evidence of the possible contribution of neuroinflammation to the pathophysiology of #MECFS”