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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, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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so has the DeFreitas work ever been followed through to its conclusion? or is it possible that it might turn out that xmrv isnt our underlying problem but the virus she found is, and nothing is being done about it?
does anyone know the answer to this?
Depends what you mean "to it's conclusion". After the failed blind studies and then Dr DF's accident and the hurricane it stopped. No one could get funding even if they were interested.
It would be great if someone could pick up all the old story and see if it is worth investigating again. Using todays methods it may have turned out to be different.
The same goes for Holmes in NZ. The blood samples were destroyed 2 years ago but many of the other materials remain.
Scientists today may not want to look at a virus that someone else discovered just to see if they were right. That's really unfair on patients - especially those who were tested in those studies. All of our hopes were raised in those days and we quickly went from suffering from a possible retrovirus to being labelled as mentally ill instead.
If a novel HTLV-like virus was present in a significant proportion of ME / CFS patients the WPI would almost certainly have found it when they were screening patients blood with DeRisi's Virochip (the process that culminated in them discovering the high prevalence of XMRV infection). However, HTLV incidence is very geographically scattered and it's possible that, by chance, the cohort Elaine DeFreitas studied really did harbour a new virus. The only way to know for sure would be to test them again.
Actually that may already have happened. After the CDC meltdown the CAA funded a last trial - this time with Dr. Bell's patients - which was one of the groups that she used in her original paper. She was unable, however, to differentiate them from the healthy controls using her test.
I don't think you can say De Freitas herself brought her experiments to a conclusion. She never had enough money and she felt, later, that too much was asked of her at the time for the money she had. She felt that she really needed a lot more money than order to iron everything out. However the NCF did fund a study looking for evidence of an HTLV like virus in CFS and didn't find any and, as Sam mentioned, it should've shown up in spades in the WPI's big pathogen arrays.