Thread:
#MECFS patients face disbelief that they are sick
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
From a lovely review by @HarvardAskDrK in @JAMA_current
ja.ma/2xF3WNT
3. #pwME have deficiencies in 3 organs important for the body's hormonal balances called the hypothalamic-pituitary-adrenal axis
Importantly, the deficiencies observed in #MECFS patients are quite different to that seen in #depression
4. cognitive problems are widely observed in #MECFS where the brain's ability to process information is slowed and memory is impaired
Importantly, the impairments are simply not consistent with the presence of #psychiatric disorders
#chronicillness #chronicpain #pwME
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
#MECFS #ChronicIllness #ChronicPain
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
#MECFS #ChronicIllness #medtwitter
10. The above scientific evidence demonstrates that #MECFS patients have a range of biochemical impairments that are:
1 Simply not possible to fake!!
2 Not due to deconditioning
3 Not due to #depression
more details in @JAMA_current
#medtwitter ja.ma/2xF3WNT
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