I have always been a hacker for my health, my homestead, and virtually everything in my life. I have discovered that a lot of doctors stick their head in the sand after they leave med school and do not change with newer methods. For instance the standard American diet is a joke and is slowly killing people, yet MANY doctors still tell people to eat that way. When they want to find your cancer they inject you with glucose so they can see where it goes, but doctors don't tell you to stop eating sugar, it literally feeds most cancer which is killing you.
Back to Parkinson's. I love all the ideas and articles everyone puts out. I have however found myself always wondering when I read a possible solution or a relief from some PD effect, has it crossed the desk of Michael J. Fox or his people or Davis Phinney, etc.? Because in my mind if anything would work he would try it himself wouldn't he? I have found being up at altitude seems to make my tremors better. They are very light but my internal tremors are most bothersome and I feel better for awhile. I have found on the internet that other people have said this, I believe MJF is funding some study on this. So I think "Why Hasn't MJF moved to Colorado if there is truth to this"? I do not think this study is over but just an example.
I just keep finding myself wanting to believe that Turmeric, B1, walking fast or hanging like a bat (kidding) is my answer for my new found partner PD. Now when I read something I think if it worked, MJF organization would have identified it and he would be shouting from the roof.
I am realistic, maybe some successful small hacks are too small for any of these big organizations? Forest for the trees? Anyway do you think I am putting too much credit to MJF or other organizations? I use his organization primarily because he obviously could use any help that is out there. Please let know your thoughts, thanks.
Written by
BigTexan
To view profiles and participate in discussions please or .
They could at least use vitamin b1 as a placebo in their $ 10 million trials phase II. But maybe it's too good as a placebo too. 😁 Greetings from Italy.
I am highly doubtful that MJFF is in business for anything other than keeping their doors open and the top wage earners getting those big checks. They have been in business 22 years and have produced what for PwP? Most CEO's get fired when they don't produce results, but at MJFF they get a raise.
The idea sounds great, but that seems to be as far as it goes. The two top executives made almost a million dollars each per year in 2020, do you really think they want to give that up to find a cure? Call me a pessimist, but I don't think so! It's like winning the lottery for those two. A million dollars each or more per year for two of them.
This is my question, but why would MJF allow this to happen? He would benefit most of all from it. I am sure he has plenty of money, I can't imagine anyone ignoring something that would make their life more pleasant health wise and live longer for more money. There isn't enough money for me to ignore a cure for PD.
Your question, 'but why would MJF allow this to happen? ', suggests that MJF has significant say in what the foundation with his namesake, does. Maybe his say in what the foundation does is very limited or he has no say? I would think he would want them to be aggressively funding anything showing real potential to improve PD patient quality of life or potential cures, but that does not seem to be the case.
There is no evidence whatsoever that MJFF execs are slow rolling PD research to preserve their employment. Its conspiratorial fearmongering from someone that is salty that MJFF wouldnt fund a thiamine trial. If PD was cured by MJFF, senior management would never want for lucrative employment ever again. As for their compensation, they are running a 100m a year fundraising business. Anyone that can do it as well for less should contact the board and provide their resume.
Exenatide would not be in phase 3 if MJFF hadnt helped it along when no one else was willing to. Kynmobi would never have been approved but for MJFF money and nor would Inbrija.
Curing PD is hard. Lobbing evidenceless insults at people is easy.
Every single one of these medications is for-profit drug whose sales benefit investors.
Exenatide - Lilly
Inbrija - Acorda
Kynmobi - Sunovion
So we have a nonprofit funding research on for-profit medications. I have got a list of promising non-patentable natural substances worthy of investigation. Research on such compounds is the proper role of a nonprofit. High-dose thiamine is far from the only one.
Chartist was asking about tangible benefits of the foundation's work. I suggest that people benefiting from those drugs would agree that MJFF helped generate tangible benefits.
The MJFF has made it very clear that their strategy is de-risking projects for private capital. Anyone that donates is either aware of that, or could be. Sergey Brin is certainly aware, and he has a history of donating >25m a year. No one is forced to donate.
How much do you donate?
By the way, your complaints apply just as much to Cure Parkinsons and Deputy CEO CPT_Helen , given that they are also an NFP and are also funding the exenatide trial. Since you're an authority on how a PD NFP should be run, why dont you tell Helen what she is doing wrong and how you would do it better?
I believe that MJF has funded some of the research done by Laurie Mischley and I do think she is trying to find things that are helpful or will aid in early diagnosis
I agree that Dr. Laurie Mischley is trying to find things that are helpful for improving the quality of life of PwP, I just don't feel that MJFF has lived up to their mission statement over the past 22 years :
The Michael J. Fox Foundation is dedicated to finding a cure for Parkinson's disease through an aggressively funded research agenda and to ensuring the development of improved therapies for those living with Parkinson's today.
They have funded research on the regular over that period of time, but I feel that really meaningful results are lacking. Imo, it is not in the best interest of a CEO and co-executive who are each making around $1,000,000 per year to find a cure for PD. I see that as a conflict of interest for the both of them who are the major decision makers for the direction of MJFF. Their job is like they won Lotto, why in the world would they ever want to give up those payouts by finding a cure? I realize that some may disagree with my opinion and that is their right. I just don't feel that their 22 year effort has garnered enough positive results toward their stated goal of finding a cure and ensuring the development of improved therapies for PwP in relationship to the amount of money they have taken in over the past 22 years. I am not singling out MJFF, because I feel the same about any other one disease organization, there is no benefit for the major players in any of those organizations to find a cure. They mostly claim to be looking for a cure for their respective disease, but not one of these organizations has found a cure for their respective disease and that pretty much covers it for me.
I take it these highly paid executives are working to keep MJ Fox in the dark about beneficial findings or he would be using them. As he is not it follows that they are conspiring against him. Or they could be just incompetent but fooling everyone into believing they are not.
I think more of a realist than a pessimist and judging by the number of likes on that reply, I am not alone in that thinking.
If two people are being paid a million dollars each per year to be the CEO of MJFF and they know that a cure for PD will abruptly end that million dollars a year, I am doubtful that either one of them is going to be highly motivated to find that cure. I think that lower level employees are likely to be motivated to find a cure, but not so much the two lottery winners at the top who make the major decisions for MJFF. 22 years is a pretty telling track record imo.
That's not a conspiracy theory, that's greed and there is plenty of that in the world already. Not one of these one disease organizations has found a cure for their respective disease. Is that all a coincidence?
It is conspiracy theory, a belief that there is a conspiracy among organisations to not find a cure. I think its because these could be metabolic conditions, not diseases. Infectious diseases have been well served by science but with non infectious conditions we are only just at the begining.
I understand that finding a cure is not easy, but whenever large sums of money are involved, greed frequently comes into play, that's the simple reason why insulin costs what it does when the inventor sold the patent for $1 so it could be inexpensively available to people who's lives depend on it and companies like Eli Lilly saw the potential to make a killing as they are. Large amounts of money or the potential to make large amounts of money brings greed out in a heartbeat. Is it unrealistic to expect more tangible results in 22 years than MJFF has delivered?
That's your right to feel that way, but you didn't answer my question, is it unrealistic to have higher expectations from MJFF after 22 years of their existence?
I don’t know enough about his organisation to have an opinion about what should have been achieved in 22 years. I do know that there is no marker yet for diagnosis, hence no objective measure for efficacy of interventions, that there are very many forms of PD as yet unclassified, that the human genome was only sequenced nearly 20 years ago and until recently we couldn’t see inside the brain of living people. There certainly is alot of ground work that needed to be done. If others think he should have found a cure in 22 years I see it as a short time in the scheme of things. We have to get to personalized medicine first so that everyones unique version of PD is treated uniquely.
A cure would be very nice, but I was thinking more in terms of significant research that they have funded that has clearly lead to multiple improvements in quality of life for PwP. I can see that 22 years would be very quick for a cure for such a complex disease, but I personally would have expected more research that would have lead to many discoveries that would clearly improve the quality of life for PwP. I am asking you if that is an unrealistic expectation on my part after 22 years in business?
You articulated well the conundrum we all face every day, i.e., what may work for me and what will waste my money and time.
Problem is the snowflake syndrome. We can trust that the MJ Fox Foundation and Davis Phinney will shout it from the rooftops if ever something is discovered that solves the problem for all.
Clearly, there is nothing out there that works for everybody. However, the B1 saga is a good example. B1 provides a lot of benefit to a lot of people. I am not one, but take it regularly because it might be benefiting me without my knowing. The MJ Fox Foundation rightly deservers criticism for not funding a trial.
We need to define what we mean by “works.” I have come to define it as something that might slow down the progression. And therein lies the unknown. Michael Fox may have the past 20 years taken a lot of things that has slowed his progression down, but there is no way to know. Compared to what? I may be slowing my progression down by my lifestyle, diet, exercise, and supplements, but there is no way to know.
MJFF progressed the thiamine proposal to the second round. At that point they declined to proceed, offering reasons that some of us consider eminently reasonable. No one else has offered up a million dollars for trial either, which should tell you something. I am glad they arent waisting money on a trial commonly available vitamin that people are 100% convinced is effective. They wouldnt accept the result if the trial failed anyway. "The should have used allthiamine" or "they used the wrong dose" etc. Or "it worked but they faked the results to protect big pharma" or some other nonsense. Nothing would change. So what would be the point?
MJFF has funded a number of trials that were never going to lead to a patentable drug.
Should Cure Parkinsons be criticised for not offering to fund a thiamine trial?
After years you still do not realize how much you describe yourself in your posts.(When you assume things , you "fish" from your reality or way of thinking , I always have to teach you everything).
Anyway thank you for your contribution because to date you are the single Poster who has written more lines about thiamine here on HU. no irony.
I agree with Kevowpd. This MJFF bashing reflects a naievity about research. MJFF rejected Colangeli's proposal because it was embarrassingly unprofessional. The GoFundMe site is similarly a reflection of the unscientific nature of this campaign. It states
"In order to be accessible to every patient in the world, the High Dose Thiamine protocol requires approval from the various international Drug Administrations. "
This is simply not true. Nowhere in the world are patients prevented from using the HDT protocol if they choose to.
The site was set up at least 4 years ago to raise 1 million euros and has so far raised just shy of 9000 euros, most of that recently from Daphne Bryans book sales
The 1 million target is for a phase 2 trial, randomised double blind placebo controlled. That would be similar to the phase 2 SPARK trial I participated in - which cost comfortably in excess of 10 million US dollars
Big Texan: The results from you flying makes me very curious as is it the altitude, the pressurization or the slight but subtle vibrations you encounter. Wonder if you get any similar response from train travel. A little history I read about was a bout a condition called Charcot-Marie-Tooth disease. Name after Dr Charcot for which the disease is name after. his identifying and trying to find a cue inf the mid 1800. He made house calls to patients when he seen then the disease was shocking to the degree that he felt hospitalities would benefit the pt better. But many cases by the time they got to the hospital the had some remarkable improvement, So I guess he was an real out of the box thinker. Because he felt there wasa strong effect between the patients condition and the ride to the facility has a sort of connection that improved the condition. So he truly believed it was the result of that old rickety carriage caused vibrations and it help them. It ended up invention a PD vibration chair and we as many other vibratory apparatus. by his research. However his idea is very simular to todays the CEU1.
Interesting Furch. I just got off a 40 minute flight and it did nothing for me. Today is a little worse than most days though. I need to start paying better attention to time, distance and altitude before I say too much about it.
I agree! The only studies that seem to proceed, are those which would potentially make a windfall for BIG PHARMA.
I am always researching supplements, exercise etc, and along with our Dr, my partner is in his 22nd year if Parkinson’s. He has had DBS, and is Completely self sufficient and functioning in all areas of his life.
What improvements have you seen since his DBS.I also have had pd for 22 years, but am having walking issues and low back pain, but am terrified of surgery, especially while awake.
Being awake during DBS is a thing of the past. Drs use advanced real time imaging to insert the probes - while you are blissfully unconscious.
Tremors, balance and stiffness have greatly improved. This improved his walking. The Improvement in stiffness eliminated pain associated with the rigidity.
Please let me know what you decide. If you want to speak with my partner, please e mail at shrink44@aol.com.
If thiamine works for me why I should need a confirmation from someone else? In five years and few months my PD progressed from score 17 to 23. I have only one symptom, mild tremor on RH.
The same goes for mannitol. It turned my husband’s life around. Massive improvements and no change for two years. We are still working on the B1 dose. 🤞
Very good point. Maybe what I am hoping for is some of these big money organizations could try and show that a number of people have had success with B1, Mannitol etc. but there are no studies. Maybe even say MJF or Phinney have found that X gave them some relief at some point. You know they are secretly trying these things too, everyone wants to believe they are different and X will make life a little better. Well until you give up, which I hope noone ever does. I am just trying to learn but not go down a crazy rabbit hole, because last time I got stuck.🙃
in my own experience Big Texan, you need to keep it very basic to live well with Parkinson’s and I’m not going to tell you things that you don’t already know:
1. Exercise hard every day
2. Get a good nights sleep ( easier said than done)
3. Eat as much fruit and veg as you can
4. Meditate
5. Engage in activities that challenge you intellectually and socially.
The rest is debatable and largely up to each individual. But these basics are common to us all I’d say
Thanks Jeeves, I am letting this get to me lately. I guess I kinda of ignored it for awhile but now I am facing it and it has me rattled. I usually don't get rattled by much.
oh it’ll rattle you alright. One of the things that gets to me is how I’m strong, relatively youthful and all vital signs etc are normal and healthy yet I get this *hit disease. So the implausibility irks me especially when I see people who eat poorly and do no exercise walking around with no Parkinson’s ( memo to self: they may have something else that I’m unaware of of course!).
From the time we are babies, we are told that If you work really hard and follow your dreams, they will all come true. But bad luck can get in the way of those dreams, big time. Sure, hard work and good luck or hard work and no luck will get you to your goal. But hard work and bad luck makes the work so much harder and can even make it impossible to reach your goals and dreams. The best is to have very good luck. Then you wont have to work hard at all and your every wish will come true just by wishing it.
God has a plan!
God's plan:
1. create a magical marvelous world.
2. give a few of us PD (or worse)
Thanks. Nice plan. I'm very jealous of people that have very good luck.
I realize I have many blessings to count, but could easily become a curmudgeon because I had a normal life for 44 years ( thats how old I was at diagnosis!) and was on my way to achieving a lot of goals and dreams through hard work (and trying to do everything right and be health conscious) until I had this one stroke of bad luck, PD, the gift that keeps on taking. It certainly can be a struggle, physically and psychologically!
Any recommendations on how to get a good nights sleep? We have tried accu puncture, medical massage using specific essential oils, laser therapy, and soqui (spelling?). All of these seem to work to some degree but not covered by insurance and so we go back to levodopa which is a national standard with side effects. Insurance will pay for approved drugs with side effects!!
I could go on and on but right now my husband needs to sleep without taking drugs, (more side effects). He excersises reads, plays music all of which help but still can’t 😴 sleep.
Honestly, I find that a good anti-depressant like Mirtazapine or Amytriptaline work wonders. The rest just don’t do anything for me at all. I know there are question marks over the former but what’s more damaging: 10 mg of Amitriptyline and 8 hours good sleep or 2 hours sleep night after night? People underestimate the terrible harm that chronic insomnia can bestow on the brain. It’s massively important that it is allowed to take out the trash on a sustained basis. PS: some people take 100/200 mg of amitriptyline for depression. My 10 mg surely pails into insignificance comparatively?
Winnie and kevowpd make good points, but so do Art and park_bear, which is to say such a large and complex organization should not be seen as black or white, i.e., nor should those of us who find fault with some of their decisions.
I think scrutiny of the organization is warranted because the leadership are all medical doctors and as such, they are biased towards the pharmaceuticals industry.
The reason they should have spent more money on B1 trials is because B1 provides more benefit to more people than any other compound we know of and if positive results of further trials showed that B1 provided even 20% - 30% reduction of many symptoms to 10% of the people who tried it, that would cause thousands of PWP to benefit significantly who otherwise would not.
Personally, I do not have doubts about the good faith intentions of the Board of Directors of MJFF and I am not one who believes they’re slow rolling therapies. Many on the board are PWP.
12 million dollars for a phase 2 to conclude HDT is safe and tolerable? Really. And maybe, best case conclude it produces statistically significant improvements? And then spend 30 million on a phase 3?
For what? To be able to use a therapy you can already use
And let's be clear Marc. It is not going to be a statistically significant proof that something, anything, improved for the trial participant
They are going to set "endpoints". Like updrs score improvement. Take a look around. You didn't get any improvement in updrs. Nor did I, farooqj, Jimcaster, jeeves19 or many others. Loads of people in constatinis videos did. But park bear had his constipation improved. Daphne her sense of smell and energy levels. How are you going to measure energy levels? What are you going to conclude if constipation is an end point and less than 50 percent report an improvement
You apparently want to carry out a hugely expensive test, by definition to the standards required for new drugs, when all the evidence on this forum is that, even accepting the benefits its followers report are genuine, there isn't a single measurable endpoint that more than half of them experience an improvement in.
So the research is going to find there is no statistically significant improvement in any of the chosen endpoints ** and the B1 fan club are going to shout "wrong test procedures
just to say that the fan club of della b1 does not exist, but there is the person who having benefits wants to tell others because he would like others to have the same benefits. We call it "social behavior" or love for one's fellow man. This is why sites like HU are called "social". You may be right but that won't change anything; because people want the results and they are very suspicious because too many times they have been betrayed. They only believe in other people like them and little in journalists and they are baffled by this. This is word of mouth, the popularity of b1 is based on this and it will not be you or me that will change it, it will end when people no longer have benefits or there will be an effective cure. At that moment we will instantly forget about thiamina and HU CP will be a social network of four old friends who will talk about the memories and times spent discussing the PD.
What has that got to do with how a trial would be designed, what it would cost, and what it is likely to demonstrate? And in that context whether that is best use of 12 million dollars?
There is no trial from 12,.30,..50..100 million $. There is only one potential treatment of PD symptoms (HDT), which no one after 10 years has ever denied and could not even. (In my opinion, after 7 years of b1 injections, it slows down the progression but it's just one opinion. 🤷♂️ By the way, do you know that HDT is made with intramuscular injections of thiamine hcl 2x100mg x week and that they are only sold with a prescription ,Germany apart ,and that the pills were just a fallback?)
Which one of us is on another planet? The discussion was funding for B1 by MJFF. The project they rejected was the GoFundMe one, which discusses a phase 2 multi-center trial followed by a phase 3. That's the topic of discussion
but I can't imagine how they can spend 12 million euros to professionally measure the progression of the disease of 200 people, before and after a year or two of treatment including the cost of the raw material. Only you can, but if there were a patent at stake they would have already found them because the funding of pharmaceutical research is based on a bet by investors on the potential of a drug to pass trials and reach the market. To prove this, just look at the spikes of value that the shares of a company obtain upon the news that a drug they hold has passed a trial phase. This is the planet.
You were generous to participate in the SPARK trial and I'm sorry it wasn't successful but I still have a little curiosity: were you in the drug or placebo group?
The trial allocated patients to placebo, low, medium, or high dose in the first year, and the placebo group were reallocated to active treatment in the "unblinded" 2nd year. I was in the medium 1250mg group for both years
We disagree on what constitutes significant. “What are you going to conclude if constipation is an end point and less than 50 percent report an improvement.” If B1 resolved constipation in only 40%, that would be a huge success.
Name something else that improves constipation in 50% and therein lies my point, i.e., if it provides 20% - 30% relief to 10% of the people who try it that exceeds anything I know of and would by any measure be significant.
Name a PD drug that has resulted from MJFF funding that does anything at all -- for almost a billion dollars spent.
There will never be a silver bullet so any organization that spends money looking for a pharmaceutical that will “cure” PD is likely wasting money, IMHO. There are too many subsets of PD (and too many causes) for one drug to conquer it all and that is what MJFF spends the money on.
I am clearly not a member of the B1 fan club and I have been roundly chastised for what I’ve said about B1 (affects a small %, temporarily, may be placebo, etc., (same as Mischley)) but I am hard pressed to name a compound as cheap, as free of side effects and that has benefited as many as has B1- surely nothing that has resulted from any PD organization’s funding.
50% was a lazy example for which I apologise. The trial would have to come up with a measure for constipation and then compare changes achieved by B1 compared with changes achieved by placebo. If 15% of those treated with B1 improve their constipation and15% in the placebo group improve their constipation what do you conclude?
My casual observation is PB is the only person I can think of claiming B1 improved his constipation and yet its only one of half a dozen things he lists as his remedy for the problem.
I was part of that 10% that said they tried HDT because, "I took 100mg of B1 HCL with no results". I changed my mind when I tried 50 mg of TTFD, but regardless of how many times I cut in half; I was unable to find a dose of TTFD that worked for me. I wish I could find a source to purchase Japan’s prescription drug Alinamin-F which is available in 5mg, 25mg and 50mg doses. I would like to try a low dose and work my way up. The only source I can find wants payment as a wire transfer. mimaki-family-japan.com/ite...
I am currently trying 1400mg of B1 HCL with no where near the results I had on TTFD. My results may have been Placebo--No symptoms of PD, but my Blood Pressure went through the roof.
After following B1 here and on Roy Propsner’s B1 site on Facebook, I realise how complicated it is to get the right dose and also therefore how complicated it would be to research. MJFF did consider it, but probably put it in the “too hard basket”.
My husband’s first venture into B1 ended when it sent his blood pressure through the ceiling (2000mg). He was on blood pressure medication at the time. Things have changed (as they do with PD) and we are trying again. He no longer has high blood pressure, or low. He had both at different times of the day. He’s now on diuretics for his heart and high dose vitamin C for his constipation (thanks to advice from park_bear). Both can lower BP. We are up to 1000mg of B1 and increasing slowly.
A couple of interesting comments from 2 of our wonderful doctors….
Our neurologist has been quite happy for us to try vitamins and supplements, including B1. As he says, “there’s no money in researching vitamins, as you can’t patent a vitamin,”.
The other quote was from our current GP, when I was telling her about a disastrous experience I had years ago when I was misdiagnosed by 3 doctors. My doctor for the next 40 years opened the file and diagnosed the problem in a few minutes. Her comment…”you can’t teach commonsense”.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
5-HTP / serotonin and symptom reduction
Exercise and PD
Parkinsons and constipation
