One has to read only 3 threads of remission-stories here on PhoenixRising, to understand that that kind of opposition to such stories is very prevalent to almost all remission stories. And not really surprising, such story-tellers gone already after a few posts again. A kind of self-selection going on. I therefore kept my inquiry to my introduction thread, to attract not too much of that.
(typos)
Remission stories are stories. With respect here is an hypothetical example of what 'recovered' CFS bloggers may write. This is their experience, real to them:
''Twelve months post diagnosis after IV Glutathione and Vitamin C, I feel much more alive and thus believe this has a positive effect in ME as I am far healthier than last year and haven't had a single relapse. I can now do gentle Yoga and short walks to build my strength up which proves that the IV's work for my CFS. I didn't measure my Vitamin C levels or check for pathogens before or after the IV's, but that doesn't matter. I KNOW it made me recover from CFS''.
What we need isn't this, stories, but Science.
Remission stories NEVER use robust science that fits into the model of a multi systemic disease but rely on someone's individual experience of CFS. It doesn't have to be fake it could be 100% real, but someone's individual experience is irrelevant to Science and the medical profession unless we have before vs after biomarkers when trying treatments. As it stands we don't know which biomarkers to use (there are many) we don't know which infections to use (may be secondary effect and infections aren't required for a diagnosis) and lastly, we don't know what it
means to be someone with CFS - critical point.
The diagnostic Fukuda criteria of CFS are so weak, a patient can be malingering, or misdiagnosed with another disorder as all we are doing is hearing from people who then claim (with no evidence) they are better. What does
better mean per se? Better from CF? CF is subjective without biomarkers.
There are three ways of thinking from here on regarding CFS recoveries.
1) A diagnosis with no test will mean people spontaneously recover anyway. Including Cancer with no Cancer test.
2) If you believe CFS is Fukuda CFS and nothing else, then yes, people
do recover from CFS, end of debate.
3) If you however believe there is an organic disease or diseases within CFS, then there is zero evidence anyone has ever recovered from these since it's inception in 1988 as we don't know what CFS is yet and thus cannot respond to stories of recovery with honest acceptance of these stories as 'fact' as we don't know what these people had wrong with them to begin with, including themselves!
I go with number 3 above, as does almost everyone else to be honest, folk who apply scientific scrutiny to a medical claim IF you believe that CFS isn't what Fukuda CFS describes. I'll give you that, if you believe that Fukuda CFS is only 'CFS', then yes, people
do recover as there is nothing to recover from needed to be demonstrated as the appalling caveat and of course some people can take over a year to recover from EBV and other infections when run down, or stressed out, or with poor nutrition and are never tested before the CFS diagnosis arrives.
The IOM don't agree with that though and declare CFS an organic disorder in need of treatments. Current alleged CFS cures range CBT to supplements to munching on HIV drugs with your cereal every morning yet this is all meaningless because individuals aren't groups of 500 patients vs 500 controls in double blind placebo controlled drug trials with screening biomarkers, which is what we've been waiting 30 years for and still don't have.
Get this in place and then we can see who recovers, who partially recovers, who doesn't, who gets worse - and why all without prejudice as Science is our leader, not personal bias.
. If I search them myself you always could evade by saying you meant another study. Thereby upholding the preferred consensus without any evidence.
