Did you see the spreadsheet or do you have bad memory?
I certainly saw the spreadsheet, in fact I analyzed it in detail after you posted this so that I would be able to illustrate what I was referring to. In particular, I looked at both the amount of increase or decrease in health status out of 10 from pre- to post-FMT for each recipient for both UT-AW and FL-RS, i.e. if someone went from 2/10 to 4/10 in health that would be +2, and also at the percentage out of 10 rating of each recipient for the donor. The latter seems like it might be more subject to error as it could depend on whether a recipient has tried other donors and also where on the scale each recipient places a donor who neither helps nor hurts. However after analyzing the changes I thought I really should look at that as well to see if it confirms or not. For the change in health I didn't just look at the average (mean) but the distribution.
Here's what I found. I omitted a few (<5 for each donor) recipients who specifically said that their ratings were likely unreliable.
Average change in health:
UT-AW, +1.109
FL-RS, +1.019 (Yes, same digits, different order. Both were slightly less and rounded up to nearest 0.001)
Percentages by bin:
-1 or less (worsened):
UT-AW, 4.3%
FL-RS, 9.3%
0:
UT-AW, 41.3%
FL-RS, 37.2%
+0.1 to +1:
UT-AW, 15.2%
FL-RS, 23.2%
+1.1 to +2:
UT-AW, 13.0%
FL-RS, 11.6%
+2.1 to +3:
UT-AW, 17.4%
FL-RS, 7.0%
+3.1 to +4
UT-AW, 6.5%
FL-RS, 7.0%
+4.1 to +5
UT-AW, 2.2%
FL-RS, 4.7%
Average donor rating:
UT-AW, 6.33
FL-RS, 6.28
I originally had thought that FL-RS had been slightly more effective overall, although UT-AW seemed more effective specifically for the sort of issues I was dealing with, with a strong neuropsychiatric component. However, here we see that in fact UT-AW was a bit more successful on average by both measures, though the big picture is that firstly
the difference was tiny, probably too small to mean much of anything, and secondly that for both donors,
typical improvements were barely 1 point out of 10. The biggest difference seems to be that FL-RS was more variable, with twice as many recipients either getting worse or having the biggest improvement, which to me is not too surprising given that FL-RS was male and given the general higher variability of males compared to females on almost any biological variable one can measure.
The fraction of patients who either stayed the same or got worse is
at least 45% for both donors, and if you define improvements of <= +1 as "minimal", then the fraction with "substantial" improvement is under 40% with either donor. The donor ratings on average
roughly agree with the health changes if you assume that 5/10 is no effect, 1/10 is getting horribly sick, and 10/10 is a +5 improvement. Not that everyone necessarily looked at it this way, but the average recipient seems to have roughly done so.
If you compare my experience with Gezonde Darmflora, the better of the two donors, DF7, was slightly better that UT-AW, although the worse of the two, DF3, was substantially worse. However, even DF3 was not bad to the degree that the treatment left me sick in the hospital or anything, taking a few of her capsules was like eating a large amount of a food that I couldn't tolerate, throwing things off for about a week. The combination of the two left me somewhat ahead from where I was after UT-AW.
It's possible that FL-RS would have helped more than UT-AW, given that it seems I have a general trend of doing better more often with male donors,
however given the close results of UT-AW and FL-RS as summarized above, and the fact that DF7 wasn't
that much better than UT-AW
, with neither providing close to the sudden healing leap that Openbiome did,
the big picture seems to be that there was a fundamental "block" to ALL FMTs available at the time.
The small amount of data (2 recipients each) for the brand-new donors SD-ES and IA-SMJ showed average improvements of 0 to +1, fully consistent with the above yet providing no strong indication that HM was on the immediate verge of surpassing this state of affairs.
When I say funding, I mean his personal operations, not for a study or anything public. Which is what you later did see as possible, but you are stuck on the “funding for a study” part, which I never implied.
You are right that funding for a basic scientific study and "funding" from potential patients seeking treatment are two quite different things. They also have quite different implications of where a treatment is at in development, and different ethical "bars" that the general person in biomedicine judges them by.
Applying for research funding doesn't require that you have proven or even tested your idea yet at all, it only requires that you can argue that something hasn't been tested yet that would be of some benefit to test. However, if you have preliminary data showing that there
may be a fundamental limitation to your idea (or even worse, arguing
against it), then it's disingenuous to seek such funding and most funding agencies would reject such a proposal, unless you show concrete changes you have made to solve what resulted in that data.
If you're seeking potential patients to invest in you in exchange for receiving a treatment, then it is ethically
fully incumbent on you to present accurately what any results so far with that treatment have been.
Thats because again, Michael has tried as far as he could to be his own guinea pig to inspire researchers and other recipients to explore FMT and boosting approaches, but he is at an stage where he is scared of personally trying Step 3 because his whole issues started when trying to kill his microbiome, so he is not really wanting to try biofilm disruption personally. And nobody else outside of Asclepius has given anecdotal support, so Michael suggests knowledge is stuck in Step 3.
Yes Michael was a guinea pig, I don't in any way dispute that. All I'm saying is that
even after all of Michael's experimentation, the data I analyzed and summarized above is where we were at. And looking at that data, we were clearly ALL still "guinea pigs" as the level of improvement we could
truly count on was minimal, even if there was a
chance of more.
It was good of you to clarify for me why Michael didn't proceed along Step 3. In my own case, I would have tried vancomycin a long time ago if I had access to it, thus access to vancomycin would have been far more helpful to me than trying more FMT donors looked like it would have been. I understand that sharing possible sources of vancomycin openly here may have attracted negative attention here from the FDA as much as HM's selling of stool did, and that not everyone else even has trying vancomycin as a goal.
My point is,
the available data at the time of HM's closing was fully consistent with there being some fundamental limiting factor to at-home FMT success for a quite large group of patients, that Michael himself agreed might not be at least fully explainable by a lack of healthy donors. In light of this, it's disingenuous to act as if the difficulty in HM staying financially afloat was primarily an issue of recipients wanting to just reap the results of Michael's hard work without being willing to lift a finger in return. Rather, it was an issue of people reading the results spreadsheet, deciding to then make themselves guinea pigs using their own money to purchase treatments, and then getting results that were fully consistent with those results already in the spreadsheet and with Michael's own results from his history of looking for donors, and wondering what they could do that could actually lead to solving the fundamental issue that was keeping everyone there.
Yes, Michael had thousands of donors in various tiers, so there was always the chance that there might be a drastically more effective, truly healing donor hiding among them. However, finding one would require a potential recipient pay a significant amount of money to have donors tested, with no way to make that back, and knowing that the last time this had been done (with SD-ES) there was no clear evidence of a meaningful change as a result. And any work on other potentially limiting factors, such as by doing vancomycin pretreatment, would again have needed to be done at the patient's full expense without HM providing any data on what to expect.
This is not meant to imply in any way that Michael somehow didn't try hard enough. The implication is that this is a hard problem
for everyone. If Michael somehow solved it after HM was shut down then he should provide that data so that firstly he can get the credit, and secondly so that people can choose whether to invest in him given the new data. However, I don't think you can separate his success or lack thereof getting support in Washington from the state of affairs in the world of FMT, as shown by existing results, at the time that he traveled there.
Its obvious you put Openbiome on a pedestal because you were lucky you got a donor match. Michael and others disagree about donor matching being as important as quality but they are entitled to their opinion and I am to mine.
Well, as the only FMT with a near-immediate and dramatic healing "quantum leap", yes it is the yardstick against which I measure other FMTs. I don't know if this had to do with donor matching, with me being lucky to get one of their high-quality donors in general, or with something in their processing method. Clearly they didn't have ALL "miracle" donors, as the people who actually got worse show, but for me and at least one other recipient whose story was archived here we lucked out. Clearly they have a lot of work to do, as we all do in this field.
I addressed it about Michael personally trying it before but I will address the part of HM recipients doing it: most HM clients were probably not fans of being guinea pigs and risking their bad health for potential treatment approach additional to what they were specifically looking for, which was FMT. Specially from a guy that is a businness, not a researcher.
Like, I said, we all WERE guinea pigs anyway.
