I begin with a warning that I am not a practitioner of any kind of medicine, or even a science related to medicine, and my opinion is consequently a pinhole view of a planet of information, and should be trusted accordingly. Them also, tho I admit their pinholes are considerably different than mine. There are strengths and weaknesses in both povs, as usual in a complex world, tho I think we see theirs better than they do the alternative views.
Today an acquaintance mentioned their relative that had been diagnosed with MS, and viewed the situation as hopeless, was very upset and depressed. The rate of autoimmune diseases is up to 7% of the population, so I hear about a new MS patient at least every year. Again, I got online and tracked down the articles that had been working on treatments for 20+ years, and went back through my emails to find the references.
This is a subject that infuriates me. The answer to autoimmune diseases, or at least the best treatment so far, by far, is not used by standard medical practice, despite continuing small scale research trials on patients proving efficacy relative to other treatments. The reason is the same as always, the treatment is not patentable, and so there is no source of revenue and therefore cannot be a clinical trial. That is the reason for clinical trials, they prevent competition to the major drug companies, as no other group can muster the $100Ms needed for a clinical trial.
Thus, patients continue to suffer and decline because standard medicine cannot accept scientific treatment that is not approved by the FDA, and because insurance companies won’t pay for it and because medical liability insurance won’t protect MDs and clinics as well for non-standard treatments. Also, of course, medical associations don’t want competition between MDs, and so are ferocious in prosecuting any alternative medical practitioners on any excuse.
That treatment is ‘worm therapy‘, based on the idea that autoimmune disease are due to the immune system not having real problems to keep it busy, an evolutionary novel situation produced by our modern very clean environments, and so finds tissues that it considers ‘other’ and attacks them. Every tissue can become an antigen and produce a different disease from this common mechanism. That is the view from women’s health, men get all of the ones for which they have equivalent organs, and others specific to male organs.
Not only are these treatments not used in standard medical practice, the amount of research into new treatments is much smaller than it would be with big pharma involved. To date, there have been a dozen or so small scale clinical trials and many more animal and in vitro studies. Small scale clinical trials are cheap, normal medical practice, sometimes in one hospital or a few researchers cooperating. Animal and in vitro studies are funded as part of normal immunological research. But if big pharma had been involved, there would be many more threads of investigation, many more tests of different challenges to immune systems for different autoimmune diseases.
The phenomenon of cheap unpatentable treatments not becoming standard medicine is very common, I can point to cases for cancer, heart disease, indeed any disease that has big pharma producing medicines. The deaths produced by delays in the FDA’s releasing medicines swamp any protective effect the FDA’s supposed care in preventing dangerous medicines may have produced, and the VIOXX disaster-scandal and coverups of outrageous drug company behaviors indicate those are not very protective of patients, rather of drug company profits.
The result of all of this is that the alternative-medicine practitioners of such inexpensive therapies are called un-scientific quacks, and no doubt some proportion of them are. However, the best are being much more scientific than standard medicine, they are using the most effective therapies based on the latest science proven in some clinical experiments, or perhaps only in a few practices.
The problem is sorting out the varieties of those medical practitioners. As always in complex problems, it isn’t easy, there is no magic formula. Do your research, take notes or record your sessions with the MD so you can check every statement afterwards with internet research. Those are what everyone should do with any interaction with any professional, of course.
That leaves someone who wants the best medical care with the problem of dealing with two very biased sources, standard medicine and possible quacks, in deciding what medical treatment to accept. You must dig in order to understand, and learn enough to understand who you can trust for what information. Above all, get others’ opinions, but don’t rely on them, only rely on your research, your judgement of who is correct and the results you find in open trials such as Patients Like Me.
Open trial databases are a complete replacement for clinical trials, producing the same information, but much less expensively and much faster, closer to the bleeding edge of research. Considering the motivations, those are far more likely to be replicable results than any FDA clinical trial.
In addition to my pinhole view, I can’t take entire credit for this, many serious medical people have done versions, tho they tend not to get published, finding anti-FDA and -CDC views is strangely hard, given what I know the standard critical medical practitioner’s view is from many conversations over the years. There have been good economic analyses of the FDA’s effects on death rates, which I also can’t find. Also, as usual, The Generalissimo was prescient in his insistence on open science and open trials as a mechanism for rapid turnarounds in lab -> treatment, and so far as I know, no physician has systematically enrolled patients in an open trial and thus advertised their expertise.
The Generalissimo included many good links on the FDA’s problems, which I don’t repeat here.
Somehow, letting The Generalissimo do the work is a lot more fun than me doing it, amaneunsis to disembodied spirits is more my style, I guess.