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
5. The latest fMRI imaging findings show that the brains of #pwME have different responses to auditory/visual challenges and in memory
#MECFS patients also have altered connectivity between different #brain regions possibly explaining why they have cognitive impairment
6. The latest brain imaging studies also demonstrate that #pwME have widespread brain #inflammation (neuroinflammation) and increased brain lactate
Spinal fluid in #MECFS also contains increased levels of proteins involved in tissue injury and repair
7. Its not complicated!
#pwME lack “energy” because their cells have a problem generating (and/or possibly using) energy from oxygen (aerobic metabolism), sugars (anaerobic #metabolism), lipids (fatty acid oxidation) and amino acids
8. many studies have reported that #MECFS patients have immune problems
For example, blood levels of proinflammatory signalling proteins (cytokines) are significantly higher in #pwME
AND, the sickest patients have the highest levels of #cytokines in their blood
9. Lastly, multiple studies have shown that with exercise, #pwME become sicker, they have increased levels of proinflammatory #cytokines, have a lower heart rate, blood pressure and have lower aerobic metabolism
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'
3/ #pwME have an impaired ability to increase their oxygen consumption during exercise
This is entirely different to every other disease we know including cardiovascular disease, lung disease, end-stage renal disease, hypertension & cystic fibrosis
@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
3/ Like SARS and MERS viruses, #SARSCoV2 likely enters the brain using axons or blood cells as ‘trojan horses’ to avoid immune detection
Once #coronavirus has breached the ‘immune-privileged’ brain, there is the potential for persistant infection and ongoing severe disease
1/ The Australian Fed government is using #COVID19Aus ‘mitigation’ modelling which permit ‘controlled burns’ of #SARSCoV2 through the population resulting in unnecessary deaths
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
3/ No responsible government should expose #chronicillness patients, cancer suffers, immune suppressed and the elderly to a #covid19 Mitigation policy where unnecessary deaths are tolerated
China and S. Korea used Suppression policies where the goal was an R0<1.0
2. Post-infection #MECFS has been reported following infection from brucellosis, #EBV (mononucleosis), #LymeDisease, Q-fever, Ross River virus, viral meningitis, dengue fever and...