Whenever I hear a story of someone improving, I’m genuinely happy for them. But as we’ve said before, these stories also need some context and a comparison to one’s own symptoms. What have they recovered from? There’s a difference between someone who has experienced several physical changes and someone who may have experienced sexual dysfunction.
I’m not diminishing the effect’s of sexual dysfunction on someone’s life - as @Toughluck24 said on our podcast, if you don’t have a sex life, that’s still a big deal - but it is clearly not the same as a patient with more severe symptoms.
That also leads to another problem which Aksh has pointed out above - survivorship bias: https://en.wikipedia.org/wiki/Survivorship_bias
Too frequently this community has clung onto the small percentage of recovery stories, who in a lot of cases experienced less severe symptoms, and ignored the much larger cohort who have not recovered. Enormous sums of precious patient funds have been sadly wasted as a result. A cohesive effort towards scientific understanding has been nearly impossible. I completely understand why this happens, as our community has been largely ignored on every front.
But for the first time we have an opportunity to fund world-leading researchers who are genuinely interested in discovering the underlying mechanisms involved in this disease. Only through thorough scientific investigation will we be able to find scalable treatments that work for every patient, not just a small percentage. This is an amazing opportunity that may not come along again, and one which took years to cultivate.
I am also puzzled as to why those interested in self-experimentation/treatment are not more supportive of these efforts. Further understanding is only going to provide more accurate targets for those who wish to pursue their own treatments.
Again, these stories are great and I am genuinely happy for whoever posted this. I just ask patients to take an objective look at the bigger picture and how their precious personal funds can be allocated appropriately before wasting more years of their lives.
