Because everyone sees him as a provider.
Not a collaborator. Michael wanted it to be a joint effort but it never evolved into that because no one was available to give their time and effort in the way Michael wanted.
..........
When Michael says he has solved the FMT issue, he is just meaning he is confident on his approach because of all the evidence and experience he references to support his stance. Donor quality is king in his approach and he is never backing down from that (nor should anyone). That’s what he always means when he says he found a panacea for chronic illness and solved the FMT issue. Everything else for him is secondary.
Nothing has changed in the way he sees FMT as a whole since HM shut down publicly. There is no secret knowledge. His stances are the same. Any hidden information is not so much on the effectiveness of his approach to FMT but on his own current operations.
These two quotes of yours side by side get at the main issue. I see the first excerpt (before the dotted line) as being
in direct conflict with the latter. Maybe not
directly but there is a major conflict here in the
implications.
Being part of a joint effort requires that one be amenable to changing approaches (or at least
expanding the approach) when the current approach,
at least not alone, is not giving the results that the other people are expecting, and
need to get their lives back in working order. It doesn't mean he can't continue to have the same
idea in his head of what he thinks affects FMT success (that's why I said "maybe not directly"), but this principle cannot fully overshadow attention to the reality of what the actual results are showing.
Like I said before, I think you are one of the few people thinking like this.
Most recipients just want poop to cure themselves and move on with their life. Nobody gave a fuck about FMT roadblocks, they just wanted it as fast and as effective as possible and then blame Michael for lack of effectiveness. Because everyone sees him as a provider.
Few people were having the same thought process as you. Most still don’t. Case in point minkstollen, FMT didn’t work for her and now she is moving on. She has her ideas of why it failed but she ain’t proposing any idea of how to improve because she has mentally checked out from doing more FMT.
No, that actually
supports what I was saying about people.
They don't have time for an approach that doesn't change and adapt when it's only getting a minority of patients an appreciable distance toward a cure. When I said they are looking for how to make FMT work better, I should have maybe said they were looking for a way to make
treatment work better, whether that involves FMT or not. That might mean totally moving on and not caring about microbiome discussion at all, or it might involve trying to help communities like this in case there's someone who wants to bring about change. What they are NOT willing to do is to give money or even time to someone who insists that no change is necessary when they haven't been cured.
I also have no time for that. I'm interested in science, yes, but this issue of the microbiome is not something I can afford to just wonder about intellectually because it's something that has concretely held back my life, majorly.
This is at the core of why I didn't offer to analyze Michael's data long ago. I got the impression that whether I did it or not, it wouldn't change how he goes about things one iota. He could have asked me and I would have done it,
because asking would convey the attitude that he thinks the results actually matter, and will be taken seriously. Not taking the time to do it himself, and when asked about it saying essentially "what data?" doesn't. It's not that I expect him, as a disabled person, to be able to do everything.
So now we get back to the issue of "investment". If you wish to discuss any more about this, we need to be absolutely clear about which type of "investment" we are talking about. There are three types, with different things that are important
but most importantly also woefully different balances of power between the parties involved, and differences as to who owns what. That bolded part is the real "kicker" here.
1. What we usually term "investment" in the private sector. Here, private people give money to individuals of companies to finance a venture.
This essentially always comes with strings attached, in terms of control the investor(s) wield over the venture. Depending on whether they are satisfied with how the venture is progressing, they can issue demands for it to change course, or if that fails, fully take it over and oust the current leadership. The leadership structure and balance of power shifts contingent on various things, including the amount of financial stake each party has and how much irreplaceable value each party brings to the "table".
2. Scientific research investment (like NIH, DARPA, etc.). Here it's mainly governments giving the money, although private endowments/trusts also do this.
Here the "attached strings" are a bit different, the funder can't take possession of the lab they are funding or run it or anything but they can (and DO, I'm personally very familiar with this having actually participated on the lab side)
require regular progress updates, with data, if the investment is to remain ongoing. There is also sometimes a demand of any results being freely available to the public.
3. Arrangements that would more appropriately be described as a
client or patron relationship, rather than an investor relationship or business partnership, but which functionally fulfill the role of "investment" because they keep the provider afloat. Here
the people "investing" have no ownership of anything, they are simply hoping to get access to a service if and when it becomes available, whether it's a Kickstarter type arrangement or as actual patients of a provider who is practicing medicine.
The attitude that Michael conveyed when asking for help on this site sounded like he was looking for the third type of arrangement, and that's a big part of the problem. Most serious investors would NEVER agree to that sort of arrangement, for very understandable reasons. And given the actual results people were getting at the time HM closed, as evidenced by my own level of success with a HM donor, as well as the results in the spreadsheet data, I would not recommend that any investor
would do that.
This third type of "investment", in the context of medicine, is the way of quacks. Most quacks don't start out as some kind of evil monsters. Yes, there are pure snake oil salesmen who are just selling stuff that they know is rubbish to make a buck, but this is not the vast majority of practitioners I have come across. Most start out with a decently good idea and a desire to fix some area of medicine, but due to lack of success accomplishing this from within the medical system, they stake it out on their own and take huge amounts of patients' money directly. The more thousands of dollars the patients invest, the more "sold" they feel they have to be to avoid cognitive dissonance,
even if they are getting worse. And the provider has a perverse incentive to not admit that anyone is getting worse because that would stop the income stream.
I have seen enough of it to consider this business model highly unethical.
Anyone who agrees to investment without "strings" is almost certainly someone even much more powerless than Michael was at the time of being shut down by HM, thus Michael cannot in good faith ask for an investor to sign away all rights if he is at all benevolent toward disabled people. And all but the most naive investors, if they are NOT desperate, would not accept this anyway. As an investor, one should always retain some rights, just in case the person seeking money is either a crook or gets a head injury and loses his sanity or something.
But then an investor who has NOT signed away all rights will want to see to it that the venture succeeds, which means that he or she will not be content to just watch the development stall somewhere if Michael doesn't want to take the next step. It's not just a question of being "sold on the idea" or not, one can start out totally believing in an idea but if it gets stuck somewhere along the road to actualization, investors will get impatient and demand modifications to the strategy.
If Michael refuses to make such modifications, he will find himself increasingly powerless unless he DOES vindicate himself and show that his input in regards to donor selection is important enough that the investor sees his continued leadership as a beneficial asset to the venture. Or even his participation at all. It can even happen that the inventor of an idea is fired from his own company and dies penniless, in fact I heard about an instance on a podcast recently where precisely that happened. Because what keeps an investor from running away with the donors they have and taking things in a totally different direction, if he feels that Michael is in any way holding the company/venture back?
I don't want that to happen to Michael either, both for his sake because he's already suffered enough, but also because then the investor could do
anything that isn't in our best interest. What if he decides that they will no longer sell to sick people, they will sell exclusively to Olympic athletes for performance enhancement and you need to be a professional fitness trainer before they will even return your call.
In that situation Michael
could sue, saying it was his idea, however he practically wouldn't have a legal leg to stand on
given the fact that the investor has hundreds, if not thousands, of times more financial stake than he does in the company. Especially if the investor, or someone he has appointed to take over, can show that cure rates have jumped to 80% after the investment and Michael can't convince anyone that he was getting more than 20% success on his own.
Obviously none of these is the BEST outcome. The best outcome is that someone sees value in someone's idea, helps grow it from a diamond in the rough into a fully polished gem (in this case, a reliable cure), and then both parties respect each other's role and stay together to market it. Neither side wants to ditch the other because they both recognize the value the other brings.
However at the start of the relationship, the central point is that any terms that are not extremely unfair to the investor put Michael at risk of later losing hugely, and possibly the whole community losing, unless he DOES work to vindicate himself with something objective as soon as possible. My bringing up data isn't because I'm a scientist who just loves data for its own sake.
The point is that data establishes value of ideas, and value determines who fairly should own what.
Unfortunately the world IS unfair in that ability to obtain supporting data is determined many times by factors other than how much merit an idea has. That's what I meant with my comment that the FDA showed poor intellectual sportsmanship. But that doesn't change the above point.
I also should point out that to be completely fair, Michael might have changed his whole attitude toward his relationship to others if and when he actually got money. But I haven't seen any evidence of that.
