heapsreal
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- Messages
- 10,103
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- australia (brisbane)
People dont understand it fully. I myself dont. Im sure there would be many who would try arvs but cant find a dr willing to prescribe them on a hunch. The other option is self treating from online sources which many/most people dont have the confidence in this sourcing to do so as well as not understanding these drugs and have ongoing monitoring. Most gp's know very little about these drugs.
People have to be confident in their own ability to understand these meds and the research to make an informed decision about the risks involved and then willing to roll the dice.
There needs to be more research to actually find a retrovirus implicated and governments arent interested in spending the money on this as its so controversial. I also believe as a group, cfsme patients are probably a big mixture of many medical issues and medical stuff ups.
I also think if a study only found say 2% of cfsers had evidence of a retrovirus, they should then start digging into that 2% and keep going until they cant go on. But other researchers should still be looking into the other cfsers.
I also think medicine needs more research to be able to actually diagnose a chronic active infection, not just say igm antibodies is an active infection and oh igg just means an old infection. This research as been at a standstill for a long time. Then there needs to be research into a variety of antivirals for different viruses and find a way to actually kill a virus, not just stop it replicating.