However I am also puzzled by the finding (previously?currently?) reported in the UK MEA’s big purple book that a course of antivirals helps a proportion of people with ME/CFS, which seems to just sit there ignored or forgotten. For some years I had languishing on my to do list looking out the research on this to discuss with my GP the pros and cons of a year or more on antivirals, but have never got that far along any iteration of my ‘list’.
I go back all the way to the Phoenix Rising days and always thought the idea of anti-virals was silly. If they worked, then surely everyone would be taking them? I mean even now, you barely hear any anti-viral ´´success`` stories compared to LDN and LDA ´´success`` stories. Then around two years ago got guilt tripped into taking some Valaciclovir by my parents because the ME clinic I was at suggested taking some, and for the only time in my entire life I felt like I tried something that actually worked. Was able to feel sleepy, fall asleep immediately and breathe through my nose within 3 days and all my symptoms continued to improve afterwards. Felt like genuine divine intervention. Slowly stopped working around 3 months in though, until all improvement had ceased 9 months in.
Yet, despite my own experience. What I fear is that anti-virals have been a red herring for some MECFS researchers and clinicians. A lot of them seem to have heard of, or believe to have seen for themselves stories like mine. But what if the improvements like mine were merely a) randomly fluctuations, or b) had nothing at all to do with the cause itself of MECFS? Maybe the anti-virals merely gave a temporary break from whatever is causing MECFS.
I`ve tried to track down other patients who also experienced massive improvements following anti-viral treatment, and honestly it has been incredibly difficult to find any at all!! A lot of the stories simply sound like random fluctuations, especially the ones where it took months for it to ´´work``, and where the ´´effect´´ seemed minimal. Honestly just sounds like the classic LDN or alternative therapy stories. The very very few stories similar to mine, where massive improvement took place quickly, all seem to have relapsed.
MECFS clinics have an ungrateful job, but I think they have sadly helped feed the anti-viral narrative. Flugge and Mella have shown through their studies how wildly MECFS symptoms can fluctuate, especially in the milder parts of the MECFS populations who make up the majority compared to the more stable severe patients. This naturally leads to a lot of red herrings with a chronic illness like MECFS, where patient and practitioner believe something is working that simply isn`t.
The only interesting anti-viral study I was able to find was a recent one by Dr. Chia. Although the reason I found it interesting was because ultimately it did not work out. The patients relapsed within two to nine months. However that was precisely why I found it interesting. Compared to MECFS null result studies, it was interesting how quickly the patients ´´improved`` and then relapsed. Because usually when you hear of the MECFS bogus treatments you always hear, oh yeah, you have to try this for months or whatever before it starts working (convenient!!). You even hear this about the treatments at MECFS clinics. Looking at Flugge and Mella studies, some MECFS patients will randomly have improved abit after 3-6 months (or they will believe they have improved), so suddenly, it might appear like these bogus treatments are working!!
Lipkin also made a comment about anti-virals recently which I found when I was going down the anti-viral rabbit hole:
The other thing is, there are a group of patients who have persistent infections who respond to Ampligen
They just do
Regardless of the fact that some people don`t believe it
I`ve seen it
It`s real
Dan Peterson, who`s been sort of pioneer in this area, has show unequivocally that there are certain markers that he can identify which allow him to say, this is somebody who`s going to respond, and this is somebody who won`t
Personally I fear it is all a red herring, and that even if in cases like mine there was genuine temporary improvement (and not just random fluctuation), then it ultimately won`t have anything to do with the cause of MECFS.
