Recent Interview with Michael Fox - Cure Parkinson's
Recent Interview with Michael Fox
I sit on a patient advisory board with Harry, the interviewer. He has since had DBS and is doing great!
A near-worthless fluff interview.
Saw a vid where Fox supposed he might have taken something that caused his "Parkinson's". Would be interesting to explore that. Possibly drug-induced Parkinsonism?
Michael J Fox Foundation is sitting with about a USD 200,000,000 more assets than liabilities - and a third of a billion dollars donations per year.. And some handsomely paid staff. What impact have they had? Just sayin' ...
projects.propublica.org/non...
If he had a 'secret' treatment wouldn't he proclaim it to the world?
Heartbreaking. I wonder how come he didn't try mannitol, ambroxol, exenatide, B1, Stanford's gloves....
There's a huge difference between the MJF foundation recommending a treatment and someone making a move to treat himself.
Definitely, it's not the role of the MJFF to recommend treatments. They do organise discussions between doctors, researchers, patients and publish the conclusions.
I suppose that your question is why do I list treatments with such a low level of evidence. Am I right?
As I said in my comment, I find the Parkinson's situation of Mister MJF to be heartbreaking.
I think he would have badly needed a treatment slowing disease progression, or anything more than ldopa replacement such as mitochondrial support or coordinated reset vibrotactile stimulation.
There are no treatments with such a demonstrated effect. There are several such treatments that are being researched for slowing Parkinson’s disease progression for example and are available to patients, don't require a prescription, are relatively safe, are having experimental data pointing to a possible therapeutic efficacy, though not yet sufficient to demonstrate efficacy in the eyes of the regulators (and physicians).
As an example, Mannitol can be bought over the counter and in some countries in groceries. It's very safe below the dose of 20 gr/day and relatively cheap. So much so that some time after Israeli researchers published their findings (it was interfering in vitro with alpha synuclein folding and in vivo with the deposits in flies' and mice brains and the emergence of Parkinson’s symptoms), desperate patients just bought some mannitol and tried it. As a Parkinson’s patient, I can share that I've had the opportunity a few years later to read/hear several patients' testimonials having had what I would describe as an enviable therapeutic success.
I was quite sick just 3 years after being diagnosed and I was quickly deteriorating. What I saw was some data suggesting that mannitol could slow my disease progression.
There was hardly any risk trying mannitol, as it was such a safe molecule. There was more risk not taking it, considering my clinical evolution.
I decided to move forward. At the time, I wasn't a business selling mannitol for Parkinson’s disease. Deciding to treat oneself is a private decision and so is the question of what a Parkinson’s patient requires before deciding to try something that might maybe help him, maybe not - when the Something is safe.
To my opinion those treatments I listed are fit for purpose even if their case is not identical to mannitol story
I suppose that your question is why do I list treatments with such a low level of evidence. Am I right?
That was not my point at all.
My point was why isn't MJFF funding studies for these supplements that are clearly helping many people with PD. Supplements showing significant anecdotal evidence to improve symptoms of PD and limited amounts of scientific evidence. They've been in business over 23 years and have raised millions of dollars every year. If MJF is one face of MJFF, they may have to get a new face because he has shown steady decline over the years and I imagine he is privy to all of the research they are funding, but he appears to have benefited zero from their 24 years of being in existence and funding research for PD.
As just a basic example, in studies, mucuna pruriens has shown greater potential than the gold standard treatment of carbidopa / levodopa which came available in 1974 or about 50 years ago. On this forum it has been reported that mucuna in conjunction with carbidopa may be more effective than mucuna alone. It might be quite useful for PwP if MJFF were to fund a study that used MP + carbidopa to see if it would be better than Sinemet in effectiveness and safety.
When they were first approached about funding research for B1, they were not even aware of it or that it might help people with PD. Their final decision on funding B1 research was that there was no need for research since it was just a supplement that could be bought over the counter. Their idea was that if people want to try it, they should.
There is not one organization that is funded for a specific disease such as MJFF for PD that has ever found a cure in their lengthy existences for their respective disease that they are trying to find the cure for. Twenty four years is a long time, but some of these organizations have been around very significantly longer than MJFF being in existence for over 70 years, but no cures from any of them. They seem to exist just to keep their doors open so they can pay their CEOs their very high salaries. MJFF essentially has two CEOs and both make just under a million dollars per year. I don't imagine either of them wants that gravy train to end any time soon by actually finding a cure. Under those conditions, finding a cure may not be the highest priority.
The Muscular Dystrophy Association (MDA CEO makes over 2.5 million per year) of Jerry Lewis fame, has been around since 1950 or approximately 74 years and yes, you guessed it, no cure yet. The AHA (CEO makes about $2.5 million per year) has been around for almost 100 years and again, no cure yet. The American Cancer Society has been around since 1913 or approximately 111 years and no cure yet. Are you seeing a pattern here? If I am essentially winning the lottery every year, that may come into my thought process when it comes to finding a cure that will essentially end my lottery winnings.
Art
Well said 👍. Even the MDS who diagnosed me 10+ years ago at Columbia told me that he would not be surprised if Mucuna Pruriens was the gold standard a decade from then. Unfortunately and unsurprisingly not so. Unless the common folks have a bigger say nothing is going to change.
Dearest Art,
I thought your position was one should wait for clinical trials. My mistake. Having read your answer, I am getting that we are having the same frustrations.
In 2014 having left my medical pharmaceutical job, I was preoccupied with the lack of funding for "hard to fund medical research", ie the kind of cases you mentioned. I didn't have PD at the time, my preoccupation wasn't disease-specific. It was about any medical research projects that had no potential for IP, valuable enough IP or enforceable IP. I decided to create a crodwfunding platform specialised for medical research of that sort, where researchers would fundraise directly from the public with the support of a communication and marketing team- to help with community outreach. Research projects had to be charachterised for funding hardship, not just peer-reviewed.
What is holding academia, foundations and patients' associations from funding this kind of research? This was my bread and butter when trying to convince investors to support my venture. As you said, inconsciously, they don't want that gravy train to end any time soon. But let's assume the MJFF did fund R&D projects with B1. In case of success, where would they find the budget to go on with the clinical trials? It wouldn't be eligible for life science investors or the pharmaceutical industry: B1 is being sold over the counter for ages. It is known to be working in an oral formulation for PD, it is safe. It has a very narrow therapeutic range, but inter-individual variability in dose is very high. There are already a few patented chemical variants in the market, having hardly any commercial success.
Another issue is that their annual budget might not be built for success. It is so infrequent. They fund discovery stage, animal models, scales, surveys. I did see them (not in PD) reacting when researchers came asking for a budget for a phase III. It had never happened before! But what were they keeping the money for? Were they going to abandon the funding of a phase III to have the money to fund more mice studies? An unexpected clinical trial to fund, that would cause a mess in their budget!
Finally, the reasons offered by the MJFF's to reject the demand for research funding for thiamine were irrelevant. Research on mega-dose thiamine as a treatment for PD needs to be done to answer research question and support B1 development as a treatment for PD and regulatory path, making prescribers' information and education on the use of B1 as a new treatment for PD possible.
I tried for 4 years. Three months after creating the company, I got diagnosed with PD. It was rapidly progressing and thanks to the universe, I had the opportunity to test mannitol and ended being a super-responder. Eventually, my health deteriorated and in 2019 I closed the company and abandonned this project. I am better now.
It is a sad state of affairs for people with diseases like PD and many others where the research we would like to see happen, simply is not happening.
The research I would like to see happen is for WMT/FMT and I believe it could be done relatively inexpensively since there is no new drug involved that would require the lengthy approval process. I wrote about FMT here :
healthunlocked.com/cure-par...
And here :
healthunlocked.com/cure-par...
And here :
healthunlocked.com/cure-par...
And here :
healthunlocked.com/cure-par...
And here :
healthunlocked.com/cure-par...
And here :
healthunlocked.com/cure-par...
The point here being that there is significant preliminary research showing positive results in PwP. FMT, as currently available, has proven its very good safety profile in many many C diff. human trials. Another FMT/PD human trial has completed in Helsinki, but the results are not yet publicly available, but based on an inquiry to the lead member of the trial, should be available soon.
So FMT is a drug free option with a very good safety profile that is available and already in use in the US as well as other countries. It has shown potential for treatment of many other diseases and is not too costly to be considered as a treatment for many diseases. Unfortunately the US limits the use of FMT to people with C diff. or IBS that has proven refractory to the currently available medical options. FMT has shown very positive effects in human studies to date, even though some of those studies seem to have been poorly designed, such as the only US FMT/PD study.
Why can't MJFF fund such a trial? Obviously in the US, no one else seems interested in such a trial. For that kind of interest, to date, only China seems to be making a serious effort when it comes to FMT studies in multiple health issues.
It seems the potential upside for FMT in treating many human diseases is high while the potential downside is small. The cost is reasonable in comparison to other options and with regular use should become very reasonable. Ultimately a better option will be the use of essentially high powered probiotics that contain the beneficial bacteria that FMT contains that confers its health benefits to humans, but we are not there yet. The ones who FMT might be harmful to are the pharmaceutical companies who have drugs which may be displaced by FMT.
Art
Well said, Art. When I first went online to explore this subject (PD), I quickly came to the conclusion that the MJFF website was basically worthless. Esp when compared to HealthUnlocked.
Ditto
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