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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 (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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It's interesting because my primary care doctor is also an HIV doctor. He doesn't believe in CFS but thought that my symptoms were due to some sort of retrovirus.
However, I do have to agree with Mary above. Does this mean we will never get better? Will there never be a cure? Will we all die early from different diseases because of our weakened immune system? Have I given this virus to my kids? My husband?
Sorry to be a downer as I am very excited about this news but have mixed feelings about it's implications.
It is kind of shocking, but here's my two cents:
People with severe CFS/ME have recovered. Did they have the retrovirus...I don't know. And there are a minority of patients who long ago tested positive for the HIV virus and yet have remained well, without going on retrovirals.
(And some would say our immune systems aren't "weakened", they're "dyfunctional" or as noted in the Scientific American article, they have "abnormalities".)
It would be very interesting to test the spouses, fathers, mothers, siblings and children of those with CFS...to see if indeed they have higher levels of the retrovirus than the 4% in the control group, but are not sick.
d.