Log in
Parkinson's Movement
15,488 members14,136 posts

MJFF posted on B1

michaeljfox.org/mobile/news...

86 Replies
oldestnewest

Well, that was enlightening. Not even one mention of dr. Constantini. They made it sound like "eat more grains" and you'll be okay. Strange to hear them say that there is a movement of B1 in the Parkinson's community. Mary

4 likes
Reply

Yes, they presented it in a very neutral way without even say a word about dr. Constantini.

1 like
Reply

Not even neutral : cold, freezing cold.

5 likes
Reply

Not only that (cold, freezing cold) but they do not even mention that the one recommended and used by those on this site is the HCL...which makes it close to harmless. Perhaps it would have been better if nothing posed by them.

Mom of an adult son DX (for three years) with PD and currently taking B1hcl for balance, etc of a 78 year old body.

4 likes
Reply

I was thinking lukewarm, but that is overstating it.

Reply

I agree with Xenos. Their intent is to discourage. Bottom-line, they say not to take it unless your doctor agrees -- which is their answer to everything which is, essentially, a non-answer.

9 likes
Reply

That is the most anecdotal comment: "Consult your physician." Is there any MD who would advise on vitamins/supplements?

I didn't even bother to email them. They would only flood me with useless emails and "Donate." :( :(

4 likes
Reply

Mjff is a big business. It pays salaries of all the people, nobody wants to lose their job.

2 likes
Reply

Yes, Mary, that's the spirit of all these big organizations. They solicit our donations to keep their employees' jobs. I don't blame them for wanting to make their living, but not at the EXPENSE of people's desperation! KYRIE ELEHSON.

3 likes
Reply

I don't even waste my energy on MJFF. They are too mainstream and don't think out of the "pharma" box. I think it's a waste of time hoping that they will fund a study of thiamine.

8 likes
Reply

I agree with all your comments. I guess we can assume that Dr C and colleagues will get a similar response to their request for further research. What else can we do to help Dr C, is MJFF the only place to go to? Is Italy and the rest of Europe controlled by big pharma too, they do seem more progressive and open to new treatments, what organisation can we turn to there? There must be other organisations to try. Surely MJFF isn't the be all and end all of all things PD.

5 likes
Reply

Yes, Dr. Colangeli started a "GoFundMe" campaign. I made my donation to this campaign.

5 likes
Reply

Me too.

However, the more people that enrol in Fox Insight and state they are using Thiamine HCL, the more the message will get out.

By the way, the article did not specify the type of thiamine.

Remember that the wheels turn very slowly and there are so many instances of huge resistance to new therapies eg, levodopa for PD, antibiotics to treat stomach ulcers, washing hands to stop the spread of infection, etc, etc, and it is persistence and continually getting the message out that wears down the resistance.

So good to see the discussions this topic has generated.

5 likes
Reply

Yes I have, however for the support he gave me I would have paid treble the amount ..... as soon as I can will make another one.

1 like
Reply

Dr. C did receive a response from the MJFF. They provided information to him about possible funding sources for clinical trials. He is working on a proposal to submit.

1 like
Reply

On a positive note we are creating talk and momentum. Maybe not what we want to hear (like MJFF is starting a trial) but a “nod” of acknowledgement. The more talk we have the greater the momentum... just wait, the tides will turn and they will say something like “we first acknowledged the B1 connection...” talk brings attention good and bad but gets people excited. Maybe more objective platforms will begin to pay attention. Enough talk and Dr. C may get his trial

13 likes
Reply

Wrong, it is not embarrassing. It is a fly to be brushed away.

I think you should expect this sort of behavior from a corporate culture that makes its competitive living from soliciting and receiving money from big donors, which usually means they have hired professional people whose skill is managing a money-competitive environment and "handling" things that are distractions or off-message from that purpose and culture.

One of the facts of life in that position is that they have, please note, HAVE TO, go after those who make money in order to get money and grow their position, like any other corporation...and that means soliciting and pleasing treatment associations, lobby groups, industry associations, big donors who made the money to give donations in large scale from some enterprise in the first place, many of whose "donations" are actually investments in which a return of some kind is expected. Yes you catch a few rich types who have an individual mission in their heart, but the bigger heart driving the health treatment and curative efforts are all business, that's the reality today. It is the natural order today.

Most of those are of course invested in making reliable and long term streams of big money, because after all it is their career, and their career needs sustainable large money to live on, create incentives to get competitive employees, raise their families, pay for college, vacations, boats in their driveways and lake-houses, etc.

All that doesn't come from a bunch of people getting well with a product that costs a few pennies to produce, distribute, dispense, as an alternative to multi-billion dollar industries needing to feed the monkey.

In fact, something like thiamine hcl represents competition, and in competition, the competition is something to crush, not promote...and do so diplomatically, politely, and "crush nice."

So you find yourself shunted politely into the dead room every time you wander into the living room...just like the beginning scenes in "Revenge of the Nerds,: the film. The fraternity Rush party scene. There's just not enough money in prospect, and if there were, it would represent a competitive threat to others who are trying to make a good, or great, living in the rat race. Somebody has to find business justification in committing significant, valid and reliable experimental research...from assets largely owned by others (called thereafter "fiduciary responsibility)...to do it right is extremely expensive, those Ph.D.s don't come cheap, the scientific method and technology load is extremely detailed and methodologically demanding and relentless, which again means expensive. Science is a business, and business, and if done right in this era (meaning people will pay you money for your efforts and make their professional existence justifiable, is very expensive, and somebody has to come up with it. Look, it's not just about this, it's about your morning oatmeal too.

Meanwhile, If a doctor fails to go with the large, power consensus of his medical-industrial complex peers, he is likely to face very expensive litigation, or have to pay very expensive insurance. That's a business risk...face it, today everything mainstream is about making money and a lot of that is about controlling "risk." That, along with competition, is the name of the game today. Adjust your expectations accordingly. Except in socialistic countries like northern and northwest europe, it doesn't grow on trees, somebody has to "make" it. Even government research in the U.S. is selected and grown using this process...the government officials who determine the direction and course of government research money are actually representative of their respective private industries managing their crops...in this case, the crops that consist of government tax-assessed money, for which individual players regard competitors as additional threats to that same government trough...Phizer does not want Lilly getting it.

Actually much of that is legitimate. Producing something that is reliably safe and effective and consistently the same from concept to mouth is no small thing. It is a very big thing. That to is about minimizing risk and providing assurance. What good is ss...hing reputed to be what it says it is time after time after time for many years several times a day, does what it says it does, refrains from doing what it says it will not do, if the next bottle grows you an extra leg? It is extremely serious. You would want no less out of the brake parts on your car.

My advice: you know about thiamine hcl, so quit hankering after a holy grail to worship like so many children needing mommy's approval, and just get your thiamine hcl and take it. That's what I'm doing. It's OTC and your doctor doesn't need to know, much less prescribe and control it so that everyone in the pipeline from plant to mouth has to get their career share from it.

Accept that if it comes from someone else there is all that risk they have to assume. But if you assume the risk yourself, all interference and frustration goes away. If a billion people start getting better, there will be less demand for their sometimes helpful, sometimes toxic pharmaceuticals and the unethical aldulterant-filled supplements and snake oil markets, sales will drop and then they will see it is time to start changing to that new horse...not before...

...at least, not publicly. Privately, they may indeed start large scale research...for many years the tobacco companies cultivated and even brand-named various lines of marijuana against the eventual possibility that it might be legalised...and I mean going back to the 1960s... sure won't let on about it, if word got out, they'd lose money on their current investment earnings potential (they call it their "installed base," for which their investment earning streams have not yet played out their practical potential) and their installed base for that is huge and a lot of money rides on it, so they won't just want to have a run away from their livelihoods. That's also "risk management..."..if someone else comes up with a better mousetrap, you want to keep that horse in the barn (sorry to mix metaphors!) until you can buy it out yourself. Or maybe they will just buy it and patent it so they can keep it OFF the market...called "catch and kill." Ta.

6 likes
Reply

Wow... Thank you MarionP

Reply

Since MJFF is promoting themselves as a champion Fighter for Parkinson's people, since they are soliciting donations from everybody for Parkinson's research they bear a responsibility to disseminate information to the medical community and to the Parkinson's people about something that is so cheap and so simple and it helps. Enough of hmmmm and haw.

The bad part is without letting Physicians know some of the Parkinson's people are never going to find out about B1 therapy.

And doing any trials on it, might as well forget it, it's going to be at least 10 more years. I'm telling everyone that I know that might find use for this information

6 likes
Reply

Do not forget to point that finding the right dose of thiamine hcl is not easy. It demands patience and dedication.

3 likes
Reply

Thank you and well aware. That’s why I’m down to 500 from 4000.

2 likes
Reply

They’d better not post anything.. This organization was created for other purposes than just finding the cure. Donate, donate, donate… :)

2 likes
Reply

Dr. Constantini has already received a reply from the MJFF. They were able to provide him with possible sources to begin clinical trials. Him and his staff of doctors are working on writing proposals to secure funding for his clinical trials in locations throughout Europe and the United States. I believe there is one other location. I don’t recall the location. This takes quite some time to draft a good proposal. It is in the works despite The Great Doc. C’s current health situation. This is why I contribute to Dr. Constantini’s Go Fund Me page. Please everyone continue to contribute to the Go Fund Me account for Dr. Constantini.

8 likes
Reply

Wow. The level of negativity on this post is ridiculous. And for the most part completely uninformed. Remember Michael J Fox has Parkinson’s like the rest of us, he has raised over $1 billion to try and help the cause. They put a higher percentage of their overall donations to work than almost any other nonprofit in the world, read the reporting we have to do every year as a non profit. I don’t like everything they do in terms of their priorities, but there’s a lot of really terrific people there including their founding CEO Debbie. I think you should take the time to get to know them better yourself before you pass judgment on everyone that works inside the building; it’s not nice nor is it fair. That’s my two cents.

6 likes
Reply

Couldn’t agree more!

3 likes
Reply

I know a non profit ("501c3" in the states). The principal employees bring down 7 million dollars in salary compensation alone. "Non-profit" simply means they don't pay taxes. And negativity conveys something. Until you look at their books, it's a corporation like any other.

And have you looked at their books?

3 likes
Reply

I am, like you YOPD, blown away by the level of uninformed negativity. No wonder pwp have trouble getting heard if this is a reflection of the community.

1 like
Reply

It’s a tough disease, but there are many worse. It’s always good to keep things in perspective. Life goes much easier with a positive outlook, at least that works for me. K

4 likes
Reply

I, of course, agree with the previous comments but would like to add, in a similar vein, that should clinical trials prove what many of our community know to be true, that B1 has remarkable benefits for those who live in the land of Parkinsonia, then questions would need to be asked such as how is it possible that a single retired neurologist can succeed where an army of scientists, huge sums of money and 60 years cannot!

The difference is of course integrity, compassion and humanity. Qualities that define Dr.C.

How amusing if the main provider of PD treatment became Amazon & Vitacost instead of Merk & Glaxo-Kline!

6 likes
Reply

That's of course only kind of true. There are plenty who have tried Thiamine and not found remarkable benefits. Often that is expressed by keen adherents as "not yet stabilised the dosage". But there are plenty of those. And that is code for "it's not working" or "it's not helping much".

And most people greatly underestimate placebo effects. A placebo effect is not people imagining improvements when there are none. A placebo effect is often very real, measurable physiological effects, that are produced by our own bodies and brains when they are stimulated to do so.

4 likes
Reply

I absolutely agree. My own trial on the protocol is still ongoing, as well as the obvious 'am I better' angle, I'm interested in the point you make regarding the fact that it doesn't work for all. I am well aware of the power of the placebo effect, which I believe is particularly strong in PD, (seems like a good place to spend research grants. If the mechanism could be unravelled and harnessed.......) but its action is not sustained long term, and the original Italian patients have benefitted for 5 years now.

I do believe that the variability of success is perhaps at times subjective. To one pwp being able to tie their shoelaces again is a miracle, whereas the next person would regard only being able to walk around the block again clinically worthwhile.

So far, the protocol improves my mental health significantly, though more trial time is needed for me to be certain enough to add it to my regime. I'm also seeking to improve mobility, I'm not interested in tap or pull test results,(I've performed poorly on tap tests but felt great and vice-versa!) only whether my daily quality of life is improved, as yet B1 hasn't achieved that but its early days for me.

3 likes
Reply

Several good points, but perhaps the most important one that often appears overlooked by some of the fiercest adherents of B1 and denigrators of research efforts and conventional pharmaceuticals is that, AT BEST, B1 offers some improvements for some pwp, and is a long way from a total solution. It is one tool in the box, and no cause to throw the rest of the box away, nor villify those seeking to develop new and better tools.

3 likes
Reply

Indeed, again I agree but also add our POM's in my experience of 10y are the same in the sense that despite many different combinations of requip, stalevo and sinemet I've never got what I regard as acceptable symptom control, possibly due to my sensitivity to psychoactive medication.

I agree also on your comment about B1 being just one tool. I've recently been giving this some thought and it strikes me that firstly Dr C himself states it is an adjunct therapy for all but the newly dx'd, secondly, many Pwp's are taking a multitude of different supplements. If any of these have a highly significant improvement in a clinical sense, then why would you need the others? (the protocol says B1 only or B1 plus small amounts of magnesium)

With regard to negativity towards research and the pharmaceutical industry, it's usually expressed by pwp's who have, like me, been reading announcements of 'breakthroughs' almost weekly at times for 10y. None of which have amounted to anything at all, while all the time this disease is stealing away the quality of life. It is, therefore, a purely emotional response born from frustration. I am sure in the cold light of day we all understand the value of all research, charities, and healthcare providers. I too believe that the pro-B1 folk are a tad over-zealous at times, almost evangelical, this is understandable given their gains, and they want to others to benefit too. But they need to accept that, as you say, it clearly doesn't work for everyone and if you're someone who doesn't derive benefit from HDT it can be upsetting.

In conclusion, what is important is to preserve the harmony of the community, and to do so we need to understand that everyone's opinion is born out of their own experience of PD and how they cope. For the first few years, I was very positive,

(I helped in a small way the CP trust with funding for the Exentide trial) with regard to research, industry and medics. After 10y I'm now housebound, been hospitalised due to conventional meds, my children need psychiatric help from having a ringside seat to their father's demise and from being a qualified man in primary health-care with my own practice I'm now relying on state aid. I could go on, but you get the picture. In that time nothing of any significance for symptom relief is even 'near' the horizon. I fully understand the complexities research into PD faces my point is to explain why folk have 'pop' at the establishment at times.

Finally, thank you WTP for this discussion, which I've enjoyed and will hopefully be of benefit to us all in some small way.

5 likes
Reply

Thank you too for the discussion. I am acutely aware that my PD journey has barely begun. Mine was diagnosed early, partly due to my awareness as my father has PD. Partly due to the exceptional care of the French public health service. I hope very much that research in general and the trial I am involved with can bring some relief to you and to all of us. It is frustrating that sinemet 50 years ago was the first and last major innovation,to date, in Parkinson's care. My dad joined MSD from the research labs at the welcome foundation in 1967 and was part of the launch of sinemet. Now at 85, he is back on the drug trying to recover from bowel cancer surgery with a stoma bag. It's a long way from a cure, but it dramatically improves his quality of life. It's worth remembering every time we are frustrated by a promising new medication which fails to deliver,a pharma suffers millions of dollars of pure loss

It's not like they're doing it out of spite-they want to find a cure. And every failure adds to the body of knowledge. There is clearly a growing momentum. A presenter in a webinar I attended from cureParkinson's trust said "I suffer from 2 chronic conditions. Parkinson's disease and hope. And only one of those is incurable". Me too!

2 likes
Reply

Very wisely put.

Reply

You're so right! Profit is the name of the game. Humanity doesn't generate $$ in the US. PROFIT ABOVE ALL.

1 like
Reply

Glad somebody beat me too it. This time I did read the MJFF article carefully. If you understand the world contains lawyers, and "only try this treatment in conjunction with advice from your medical practitioner" is printed on the stationary, and not selected for that article, then it was a balanced positive heads up for Thiamine. Simon from "the science of Parkinsons" is forever repeating "I'm not a clinician, and if I was I haven't examined you" in response to requests for public comment or individual advice. There is a technical term for it - "cover your arse"

What on earth does anyone think they could have said differently, (with a lawyer looking over your shoulder)?

MJFF have indicated they will consider funding a research project - but they need someone to propose a deliverable study for them to fund. In the meantime they continue to fund much needed research into potentially therapeutic solutions which are not available as a food, at low cost, over the counter, and which can only help PWP if they are authorised following a trial which demonstrates their safety and efficacy.

Keep using Thiamine if its helping you. Maybe, if you want to advance the cause organise to collate the data from this site into an open label study. But recognise it is therapy that is available NOW, with no need for trials. That would be one factor in making it a low priority for limited research funding.

Bashing the likes of MJFF who are pumping funding into promising research, and have to prioritise limited resources against a huge potential demand for those resources, is not going to bring effective therapies for PD closer to delivery

Heaven forbid they listened and said "OK fair enough. Our research is pointless. Lets shut up shop and stop looking for significant therapeutic advances for Parkinsons, and just put up with what we have"

9 likes
Reply

Well said and thanks for posting. The negativity and uniformed opinions are staggering. Very well stated.

3 likes
Reply

Well said, WTP. I can’t believe the cynicism and lack of appreciation of the $800M at a rate of 88c to the dollar that MJFF have invested in Parkinson’s research and drug development since it was founded. I think they are a fantastic organisation.

A lot of people think there’s something in B1, but don’t blame MJFF for not receiving a viable research proposal.

Also, am I correct in thinking that everyone on B1 on this forum has consulted with Dr Costatini online, and titrated their dose accordingly? If so, that will make it a difficult therapy to take to a large scale, so please let’s look at the challenges as well as the opportunities.

3 likes
Reply

". . .and titrated their dose accordingly?"

Whereas SINEMET is taken universally without titrating. I will skip the SIDE EFFECTS.

Reply

Hi Despe - my point about titration is that, if it relies on Dr Costatini, it's difficult to spread more widely. Sinemet also has an element of finding the right dose but every movement disorder specialist has experience of this.

Until the right trials are done with high dose B1, we don't know the full extent of side effects. Sinemet side effects are widely known because of 50 years' worth of experience - but so are the undoubted benefits of symptom relief.

By the way, why should this be a B1 vs Sinemet question? What's wrong with trying to find out what works by doing the right studies?

1 like
Reply

Hello to you, too.

No known B1 side effects, only benefits that I know of. A few people do not respond to B1 but that's not side effect.

I am just referring to natural therapies vs pharmaceuticals, not specifically B1 vs Sinemet. It was just an example. :)

Reply

Respectfully also. Your husband was diagnosed barely a year ago at the same time as me. He started B1 in combination with other therapies,MP (levadopa) and supplements. He experienced some improvements. Much as I did when I changed my diet started exercise, and made time to cuddle my German shepherd. Now you are posting you can't get the B1 dose right and are taking a break, then trying 75mg. Code for something ISN'T working.

Royprop , one of the biggest B1 advocates and beneficiaries takes 800mg sinemet a day.

Where do you get this notion that B1 is the figurehead for natural therapies over pharmaceuticals?

Is it possible your limited personal experiences, or rather your husbands,are not a universal solution for a complex, varied, progressive disease?

Regardless of the outcome of a B1 trial it is as available to your husband now as it's ever going to be. If it isn't the total fix, the one stop solution (and it would appear it's already not that) do you think you may one day have cause to be grateful to MJFF and others for pursuing other avenues as well?

3 likes
Reply

Respectfully, Despe, if I am not mistaken, you don't have Parkinson's, but your spouse does. I am using the word "respectfully" because I don't want to hurt your feelings. But, don't you think that it would be impossible to put yourself in your spouse's shoes regardless of how closely you work with the patient or how much you emphasize with the patient? I have been struggling with Parkinson's for the past 7 years and can vouch that it is impossible to relate.

I tried B1 for a month and dealt with high blood pressure. About 30 points higher. With no support from my MDS doctor, and frankly with no support from the medical community, I am afraid of going "rogue" and perhaps landing in a situation that I can not extricate myself from. I think that one would be playing with fire here. Think about it for a moment, should someone suffer a stroke or a hemorrhage, God forbid, what do we do then? The doctors are only going to be desperately trying to save the patient with limited or no knowledge about what effects are coming from the B1. I commend the community for trying to get trials set up with the help of sponsorship from organizations such as the MJFF. However, it would be prudent to wait until the regimen is proven.

Until then, I believe that only those whose lives are on the line should "advertise" the"miracles" of B1.

I will give a shout-out to John Pepper for " pushing" his walking protocol, because at least that is just exercise and harmless, regardless of what the perceived benefits are.

Similarly, recent research has shown that other non-compete approaches such as meditation works too, sometimes spectacularly like in the case of a person who was taken off Sinemet after 30 years just because he had been meditating for those 30 years. This is a published medical report on pubmed.

I get it - we are all desperate for a cure or at least a remission from this miserable, miserable condition. But if you believe that Parkinson's is terrible, then imagine how bad it would be with some other new condition added on to it simply because we irresponsibly take massive amounts of a supplement that the medical community does not agree with. Imagine what happens if God forbid someone dies due to some bizarre reaction to massive quantities of B1 that could happen not because of B1 itself, but because of interaction with other medications that one might be taking. Life insurance, if one had it, would not even payout for such a scenario.

Sorry for the long text, but I am appalled by the strong emotional response from both sides of the B1 argument. Again, as I have said, I am saying this "respectfully".

Ramesh

1 like
Reply

I had myself one incident with HBP after taking B complex after 2 g of B1. I gave up B complex and never happened again. I felt pretty bad so I drank almost 2 l of water and took an aspirin to fix myself. I'm taking B1 1g/day for more than an year.

Reply

malayappan,

No hard feelings. You are right, I am not the PwP, my husband is, but I live it 24/7, and it hurts like hell to see him going through this journey. By nature, I am very stubborn and persistent in whatever goals I try to achieve. Numerous times, I have wished I was the PwP, not my husband, as he is very low profile, quiet, introverted IOW. I have been his coach since he was diagnosed a year ago. I have done all the reading and searching, I have contacted all the major institutions and made appointments for him as he was in denial and depressed, although he is doing a lot better now than a year ago.

I am very, very sorry for the HDT side effects you experienced. Art has posted a FAQ link as well benefits a lot of PwP have enjoyed . Did you ever contact Dr. C. to get his advice? Did you start the B1 protocol on your own? When we contacted Dr. C, we did as he asked us and emailed him a complete medical history, meds and supplements, a video and everything else Dr. C. asked us to email. Based on his advice, my husband started HDT. We kept in touch with Dr. C. until his so sudden and unfortunate health problem.

If you took it upon yourself to add "massive" amounts of B1 without consulting the doctor and scientist/researcher Dr. C., don't blame me or others who talk about B1 success in improving their symptoms.

2 likes
Reply

Thanks, Despe. You are right, I could not contact Dr. C. This was last month, when he was already incapacitated, which I did not know about. I came to know later that he had a stroke and faced a long road to recovery. Therefore, with the possibility of no guidance or delayed guidance, I had to stop. My physicians and the MDS were concerned about my rising blood pressure and were confused and concerned. I didn't tell them about HDT since I figured that they would not understand or endorse. They suspected other medications that I was taking ( for my diabetes) and eliminated them. I didn't connect the HBP with HDT until I stopped the HDT and my blood pressure came back to normal. I still haven't told my doctors. I suspect I never will. After all, it was just a month.

The only plus side is that in an effort to control my diabetes because of the lack of medication, I went on intermittent fasting. That actually improved both my diabetes and my Parkinson's. I lost 25 pounds in one month! I actually feel better now. So, yes, in a fluky, tangential sort of way, my failed HDT experience actually improved my condition for two diseases!

Reply

Thiamine HCL gives me also high blood pressure. Right now I am taking about a hundred milligrams a day, in the morning. Once in awhile take 500 milligrams. You can take a break of one to two weeks and then restart it 100 milligrams per day. Some days I don't take any thiamine HCL. This last time when I quit I was back 2 as before where my balance was just awful. What I found out it takes a while for the blood pressure to come down. Once you reach the threshold you don't need the huge amount, you can do quite well on a small amount of thiamine.

2 likes
Reply

Read an interview with Professor Andrew Lees on Tomorrow Edition, February 5, 2019, where he says, among other things "I would remove risk adverse roadblocks which are laid down by lawyers and governments and become businesses like Research and Development Departments in Universities. Professor Lees is a Professor of Neurology at the National Hospital for Neurology and Neurosurgery and an advisor to the UK Medical Research Council. From 1985 to 2010 he was the most cited investigator in Parkinsons Disease Research. He is scathing of the system. He believes that the system is broken.

3 likes
Reply

Good for him. Looking forward to it.

Reply

Proff Lees is now retired. Yes he does critique the system of which he is a part.

He is an internationally acclaimed researcher and clinician, Professor Andrew Lees heads some of the world’s most current research in Parkinson’s disease and movement related disorders.

I do not for a minute believe he would want to be aligned with the nay sayers here. He would still believe in scientific rigor

Reply

Of course he believes In Scientific rigor. That wasn't what he was saying. The medical profession is so safety conscious that it is not functioning properly. I mean safety in regard to protecting itself from litigation etc. Myhusband's neurologist totally agrees with what Professor Lees had to say.

Reply

I clearly misinterpreted you. I am not sure about the point you were making as regards MJFox.

Reply

It seems to me that they fit where Professor Lees criticised the establishment for being over cautious “risk averse”. He also says he is influenced by among other things, patient’s observations. We should be pleased by that. I’m loving all this discussion. Thank you Hikoi.

Reply

They're a big business false god.

1 like
Reply

This is NOT negative. “Early work on thiamine, also known as vitamin B1, suggests a theoretical benefit in PD, but definitive evidence is lacking.”

I consult with two different neurologists. I have come to understand that they are basically scientists. Neither will seriously consider Thiamine HCl without reading a clinical study that is double blind. We might consider Dr. C is really an artist with his custom prescription work. We are looking for his art to enter the domain of science through an expensive double blind study. I hope Dr. C receives funding soon and I hope his health returns soon.

4 likes
Reply

I think this was a pathetic attempt at addressing an issue they can no longer ignore and are attempting to negate. I personally have had great success with B1, as have many other PWP, we need to advocate for our community. Very disappointing they took this position.

5 likes
Reply

Thank you for the heads up about the appearance of the HDT protocol on the MJFF. I think this is good news. There would be much to say from my side on this end but time is very limited these days predominantly because, as HU forum members correctly pointed out, we are indeed writing a proposal on this for the next round of funds from the MJFF (among a million other engagements). I cannot give much more details on its content for obvious reasons but I can state that our proposal is meant to address exactly what the MJFF highlighted in terms of lack of scientific significance of the information available to date. I am a scientist and as such I accept the rules of the scientific research game. These might not be always the most appropriate/fair but if the rules require a placebo-controlled study to validate a certain therapy, the best we can do is to propose this very kind of study to be carried out under our supervision.

The answer to the discussions on this post should come soon as the evaluation of our proposal is performed, but I hope every one will stay positive until that time comes. In the mean time it would probably help if those who do use the HDT protocol mention it through the Fox Insight portal.

Dr. Costantini is stable, unfortunately the hit has been strong but he is definitely stronger and fighting hard. I periodically share with him the greetings and kind words from the many of you who send them. He smiles in awe every time.

Thank you everyone

Best regards

-Marco

12 likes
Reply

Marco, the best of luck! I know Dr. C.'s and your efforts will come to fruition!

Give Dr. C. a hug and thank him for his hard work but most of all his HUMANITY.

6 likes
Reply

Thank you Marco, and please tell Dr. C, I am one of your success stories as I have been taking 4 grams of B1 for over 8 months now and I'm doing great. Visited my neurologist today and he sees great improvement. Please tell Dr. C I'm praying for his health,

8 likes
Reply

Congratulations, Ernie! Keep doing what you're doing!

1 like
Reply

Thank you Jim. You too 😊

2 likes
Reply

Thank you Marco.

1 like
Reply

Un caro saluto ad Antonio e un grazie di cuore a te Marco per tutto il lavoro che stai facendo per noi.

Gio

1 like
Reply

As a spouse of someone with Parkinsons I enjoy this site very much However I must say I am disappointed in the constant criticism of the MJF foundation No body in the world has done more to raise the awareness of this despicable disease than they have. Give them credit for that at least as well as the millions they have poured into research. Unfortunately researchers are a cautious bunch and never go out on a limb Thats the nature of the beast so no more of this negative stuff They are doing more than any other group I know of They will find a cure I am convinced Just hope it is soon Bubee

7 likes
Reply

This is actually my first post although I’ve been a member for almost a year. First, I want to thank all of you for the informative and supportive information you have shared with me as well as others. You’ve been a ray of sunshine on my sad days and an inspiration on the good ones.

Been taking B1 for about one year. Presently at ½ G. in am daily. Started at 4 g and have dropped dose slowly from there, mostly at the direction of Dr. C. I've been in contact with Dr. C during this time frame until his illness. He’s been selfless and an inspiration needless to say. Whether it works for me or not, I'm not 100% sure as my tremors have increased somewhat, sleeps a problem, a few other symptoms but feel still, overall, in a relatively good place, most days that is. I am very thankful and very supportive of Dr. C and Marco. By the way, I was diagnosed in Jan 2017 and had some symptoms a few years prior. I am 71 years old. I do have confidence that B1 is beneficial to many although I cannot vouch that it has improved my symptoms. I'm still considered stage 1 and presently very mild according to my MDS.

Some of the comments written here I feel, and as other’s have said, are ’uniformed’ and have found them very disheartening. I am on Dr. C’s side, MJFF’s side and most certainly our side! Here’s some things I really don’t agree with...and a few comments.

I feel the main purpose of their blog was to bring awareness to others that B1 is news worthy. I don’t see the blog as a discouragement at all. Look at some of their other blogs, very similar. Very matter of fact. It’s to make awareness. Also, the blog is about B1, not Dr C. - It’s not a personal blog, it’s a short and informative one. MJFF isn’t in the position, at this time to make any claims. Chees, B1 gets to first base and people complain MJFF didn’t hit a homer! I feel some expectations are totally unrealistic. It is not for MJFF to assume anything.

Re: “Placebo” - Most likely MJFF is making a point that people need understand why a trial is so important and that proof is provided and that it is not the "placebo phenomenon." “Consult your doctor” - We are all different with our own medical history, a prudent thing to advise.

Mainstream as a bad thing – I don’t think so. Most successful PD charity in the world and their mission is for us! I think Winnie, YOPD and Cagey84 said it best a few hours ago. See their threads.

How many times have I read “No money in B1, MJFF won’t be interested? MJFF just deals with Big Pharm. BS. They’ve recently invested in Inosine, (precursor to uric acid) 2 years ago, (Vitacost 500 mg, 120 - $15.05.) Inosine is not big pharm and there are no bucks in inosine So yes, MJFF does work with supplements. MJFF is in the fund raising business for PD and place their dollars where it will have the best impact. Again, for the amount of money they fund, it better be scientific.

Two months ago, At MJFF's request, I personally contacted Marco and arranged a phone conversation with a Research person at MJFF. The purpose of the call was to advise Marco how Dr. C’s office can complete the application for funding, educate them on their funding process as well as other fund raisers throughout the world. I did this for Dr. C , for MJFF and for us of course. The call did occur and was very positive. Gratitude was expressed by all. So bottom line, this was MJFF's idea for me to write Marco and introduce a dialogue between them, not mine.

Reading all this negativity is not going to help Dr. C get funding. If you feel that B1 has helped you, I sincerely suggest you do what Marco advises, be positive, join the MJFF Insight portal and mention the HDT protocol. If you want someone to give you lots of money, ‘you don’t bite the hand that feeds you’, and as Marco says, ‘play by their rules’. it's their bucks and how they decide how funds will be distributed.

Will Dr. C be funded? I have no idea and I’m sure MJFF doesn’t know either at this time. The application is not even submitted yet and there are hundreds of other applicants as well. I’m sure Marco is aware of that and doing his very best with due diligence.

There was just so much negativity in this thread and comments not based upon fact or comments based what they feel MJFF should do, who they are and how they operate, well I felt it best to afford you this short little history. MJFF is interested in B1, awaiting to receive the application for evaluation. This is a good thing and I just wanted to share with you. Lastly, I am not connected in any way to the MJFF financially or otherwise.

10 likes
Reply

Very encouraging, thank you for being involved and sharing this with us.

3 likes
Reply

My pleasure.

2 likes
Reply

Very sound. I wonder what some people posting think a trial is going to achieve. Whilst Marco and doctor C presumably want to share their therapy with a wider audience, I get the impression some on here are looking for reassurance that the therapy is working for them. A proper trial will probably take a minimum of 4years to complete. It won't make any difference at all to existing B1 users. It's available now. After a trial, regardless of the outcome,it will be available on exactly the same basis.

2 likes
Reply

Dear ParlePark, I fully subscribe your post. Thank you again for putting us in contact with the MJFF (I didn't mention your name before for privacy reasons); thanks to them we could understand better how to compete for funding. The MJFF has been carrying out a completely transparent process and I am very glad we were given the chance to participate. If the proposal eventually is NOT successful it will be solely our fault, meaning that it won't have been good enough in comparison to the other proposals competing for the same funds. But let us all stay positive, there is not benefit in doing otherwise anyway.

4 likes
Reply

Thankgoodness for sanity and reason. Thankyou Parlepark for your comments. No doubt there will now be silence or cries of justification.

Your experience fuelling research - Another Fox initiative some of you will want to trash.

foxinsight.michaeljfox.org/

2 likes
Reply

I wrote to them to say how much b1 had helped my husband and they replied saying there was no evidence ! Hello! I have the evidence in front of me!!

2 likes
Reply

That’s why Dr C needs funding! When you pass a clinical trial docs can recommend and prescribe. I believe you as I believe many others. Heck, I take it to but can’t be 100% sure I am one of the beneficiaries of it. That’s why I did what I did. MJFF reached out and there is now a dialogue between Marco and them. It’s great that you reached out. If B1 is helping your husband that’s what ultimately matters.

3 likes
Reply

so Parlepark are you the person mentioned by Marco a while ago who helped him contact MJFF? but who is Olivia Catherina? just to understand.

Thank you very much for your work with Marco!

healthunlocked.com/parkinso...

2 likes
Reply

Yes Gio, I have been in direct contact with Marco and MJFF for the past two months (MJFF for the past year advising about B1). I did read her thread and my understanding is that she was previously in touch with MJFF, regarding what I don't know. I do not know her. When I read the thread I laughed, but she obviously had good intentions. Two months ago (approx) MJFF contacted me requesting that I communicate with Marco advising a little history and their intent to verbally discuss how to apply for funding. We messaged quite a bit and the call came to fruition. Was and am very happy about that.

Was not my intention to say anything. on the forum.. I know some people at MJFF and their dedication appears over the top. When I read the negative threads I really didn't know how to communicate it other than the way I did and hopefully will have some positive impact.

2 likes
Reply

It's nice to know about these things about MJFF and its Staff. I am very pleased and good to know. At times the harsh criticisms of people of good will break our hearts (you knew how many I heard about dr C), but I'm sure that after your answer everything is clearer and they will change their mind about MJFF as I changed it , because they are people of great responsibility that are able to take care of situations and bring them back in the right direction for the good of all (maybe if they had known they would not have written). We all have this ability to change our mind and it is our salvation. Thank you so much for this great and crucial job you did for us. I hope the dark and sad times are over for you as they ended for me. FYI After 4 years of b1 my UPDRS test is stable around 3/10 points and ldopa decreasing.

3 likes
Reply

Gio,

Who is Olivia Catherina, patient or doctor? Thank you. :)

Reply

Sort of. B1 doesn't need to be prescribed any more than yoghurt does. French doctors regularly recommend yoghurt when prescribing antibiotics and they don't need a clinical trial to authorize them. Doctors can now, and some apparently do incorporate B1 therapy. A successful trial will raise Awareness but there are no current restrictions on using a substance which legally is a food.

2 likes
Reply

Winnie,

What about you, have you incorporated B1 therapy, any other supplements, or are you strictly on meds? Thank you.

Reply

I'm not talking any meds. Well,no levadopa or other conventional symptom relief meds. I have had 3 infusions so far of an experimental drug known as BIIB054 (or a placebo) as part of a 2 year trial. The rules of the trial allow my doctor to prescribe one medication only,after 6 months of the trial, if I need it. I am avoiding starting B1 therapy whilst on the trial but may look at it once the trial is completed. BIIB054 is a monoclonal alpha synuclein antibody designed to remove alpha synuclein in the hope it will slow or even halt disease progression. I take probiotics including Kefir kombucha and yoghurt,a b complex vitamin and other supplements I have listed elsewhere

Reply

From the bottom of my heart, I wish you all the best, and hope BIIB054 is the answer to slowing or even halting PD progression.

2 likes
Reply

Thank you. We all want to beat this wretched disease. Likewise I hope this or one of the other research projects is able to benefit your husband.

Reply

Thank you and keep us posted.

Reply
1 like
Reply

HELLO ‼️‼️

MICHAEL J FOX HAS PARKINSON’S TOO‼️

Bet he’d like B-1 to help him.

Let’s not loose sight of the big picture.

1 like
Reply

I cannot believe what I’m reading Dr. C versus MJFF! wow, especially coming from the Parkinson’s community. First and foremost this site speaks about Dr. C as if he’s a cult leader. Where is his research? Please explain to me why I should add additional B1 to my body when it’s producing enough? I’m sure he works with several other doctors (or not), who could submit paperwork requesting funding to launch a research study. I work very hard with the Michael J Fox foundation for Parkinson’s research to only have my fellow PWP’s negatively comment their hard work. By the way I don’t earn a dime for my efforts. The administrative staff from the MJ FF earns a basic minimal salary, Because they work for a nonprofit organization. they do not overspend our fundraising earnings. As a matter of fact all sponsors who donate to my team’s website 100% of their donations Goes directly towards research. We are all looking for a cure join us, don’t put us down because of frustration. I have Parkinson’s for 25 years and hosted my Seventh Annual Team Fox Swing for the Cure charity golf tournament on April 11th. What did you do on Parkinson’s awareness day?

2 likes
Reply

You may also like...