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.
To become a member, simply click the Register button at the top right.
In ME/CFS, mitochondrial assisting supplements don't seem to do much.
So your saying you tried these and they did not help?
We found that results from three different tests, lymphocyte death rate, mitochondrial respiratory function and TORC1 activity could each individually serve as biomarker with better than 90% sensitivity but only modest specificity vís a vís healthy controls.
However, in combination they provided a cell-based biomarker with sensitivity and specificity approaching 100% in our sample.
This is only one study, published by one group, on a small number of patients. The results might be stated confidently by the authors but it means very little to anyone, until it is not only replicated but also found to be useful. Its completely normal to have countless studies making grand claims that turn out to be irrelevant, even plain wrong.So we have yet another diagnostic.
Who exactly is it that- decides we still don't get diagnoses?
Who "officially annoints" this diagnosis and what IS IT we wait for?
Perfect classification accuracy for what though? This could be a fairly common finding in any number of diseases that they haven't currently tested this method on.So they are implying that applying a combined diagnostic test can yield almost perfect classification accuracy. Isn't that too good to be true?
If it is then this is a game changer. Being able to be diagnosed would increase the credibility of ME/CFS as a serious disease tremendously.
The research is worthwhile as it might be useful in making a accurate diagnosis @bread. but it's a bit of a stretch to look upon it as proof that me/cfs is a mitochondrial disease as the mito abnormalities might be a result of the illness, not the cause.
If it's a mitochondrial disease, high-dose mitochondrial supporting supplements (antioxidants, CoQ10, PQQ, etc.) should be a treatment prescribed for everyone with ME/CFS. These supplements are now even being recommended by traditional medicine doctors for treating mito diseases. In ME/CFS, mitochondrial assisting supplements don't seem to do much. It actually was the single most disappointing treatment for me along with methylation, I even got worse from high-dose antioxidants.
It may play a part, but its not any currently identifiable or well understood classic mitochondrial disease - there has been enough research previously to exclude those.For people who are severe there is a high chance that they have a mitochondrial disease, either primary or secondary. It is so obvious.
It may play a part, but its not any currently identifiable or well understood classic mitochondrial disease - there has been enough research previously to exclude those.
When people are at their worst @bread. it's not that they lack energy. They maybe unable to move at all. Like being paralysed. If, when in that state, it was a 'lack of energy' dont you think that their major organs would fail? And how about times before they became ill but became very,very tired. They may have lacked energy but could still move. Now they cant. Exertion in many cases = a state similar to paralysis. Why not consider the possibility that part of the problem is that something is blocking the action of the neurotransmitter that enables muscles to work normally. That neurotransmitter is Acetylcholine.Me/cfs ist not about fatigue, it is about a lack of energy!
Now they cant. Exertion in many cases = a state similar to paralysis. Why not consider the possibility that part of the problem is that something is blocking the action of the neurotransmitter that enables muscles to work normally
That's a very interesting take. I've tried neurotransmitter fatigue drug user for sleep disorders called modafinil. Instead of feeling more natural amount of energy it was more like my body was holding my eyes open and didn't sleep the entire night . Along the lines of blocking neurotransmitters could be cyctokines which can enter the BBB and disrupt nerutransmitters.When people are at their worst @bread. it's not that they lack energy. They maybe unable to move at all. Like being paralysed. If, when in that state, it was a 'lack of energy' dont you think that their major organs would fail? And how about times before they became ill but became very,very tired. They may have lacked energy but could still move. Now they cant. Exertion in many cases = a state similar to paralysis. Why not consider the possibility that part of the problem is that something is blocking the action of the neurotransmitter that enables muscles to work normally. That neurotransmitter is Acetylcholine.
I've tried neurotransmitter fatigue drug user for sleep disorders called modafinil.