*GG*
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Welcome to Phoenix Rising!
Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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Agree, they should focus on (real) treatments other than exercise.
Therapy consisting of daily conditioning exercise, dietary recommendations, and nutraceutical supplements (ENT) has been show to be beneficial in treating patients with mitochondrial disorders. Similar therapy has been instituted in individual patients with CFS and has been shown to also improve their clinical conditions.
CoEnzyme Q10: oral gel capsule bid
Acetyl L-carnitine: oral capsule bid
Alpha Lipoic Acid: oral tablet qd
Docosahexaenoic acid: oral gel capsule bid
A question that came to my mind with regards to mitochondrial diseases and exercies, Marco: Do "traditional" mitochondrial diseases have PEM? I don't know, but i think they don't, because you often read that PEM almost exclusively occurs in ME/CFS. Maybe this is an important difference.
Am I understanding this part right? If so then I Just can't help but shake my head upon reading this. And Once again after reading that their using the CDC's sink hole criteria for CFS. Yet another study that will be flawed with skewed data because it used a flawed definition.Primary Outcome Measures:
Change in rate of fatigue status and other CFS symptoms [ Time Frame: 0, 3, and 6 months ] [ Designated as safety issue: No ]
Rate of decrease in fatigue and other CFS symptoms, as measured by SF-36 and The Fatigue Assessment Instrument.
A question that came to my mind with regards to mitochondrial diseases and exercies, Marco: Do "traditional" mitochondrial diseases have PEM? I don't know, but i think they don't, because you often read that PEM almost exclusively occurs in ME/CFS. Maybe this is an important difference.
Fatigue can cause anyone to become less precise in his or her general functional abilities.
This is even truer for the child with mitochondrial disease. When the mitochondria (the
power supplier) is not working properly, the body cannot function as it should.
? the brain does not process information correctly
? muscles start to twitch and may become spastic and/or weak
? heart rate can become erratic
? vision may become impaired
? sensory processing can become skewed