I have just received a reply from Michael J Fox Foundation re High Dose Thiamine.
My original email to them is as follows:
I was diagnosed with PD in November 2015 and I have been taking Azilect 1mg daily since September 2017. In March 2018 I added High Dose Thiamine (HDT) 1000mg daily after reading about the benefits that members of the Health Unlocked Parkinson\'s Movement forum were having from this supplement. Now that I am also benefitting from HDT (current dose now 250mg daily) I feel it is definitely worthy of MJFF consideration based on the great results that many members on the Health Unlocked forum and elsewhere are getting from the addition of HDT to their existing PD regimens!
I have just received MJFF's reply to my email:
Hello Pam,
Thank you for your interest in the Michael J. Fox Foundation for Parkinson's research. It’s been hypothesized for many decades that loss of Vitamin B1 (thiamine) deficiency may be involved in the dopamine pathology observed in PD patients. There have been many preclinical studies and one open-label clinical trials that have been done to test its efficacy in Parkinson’s disease which showed positive results. However, we should be careful in our interpretation of the results of that particular study. A lack of treatment and hope for a cure among other reasons lead to huge placebo effects in PD patients. Without a placebo-controlled group to compare against, it is very difficult to conclude whether the improving effects observed in motor scores are indeed significant (real).
We are happy that you are benefiting with regards to your symptoms. We remain open to this line of research and welcome researchers to apply for our funding to do a systematic double blind placebo controlled clinical trial. We at MJFF do not conduct our own trials, but solicit trial ideas and fund trials that have scientific merit. Vitamin supplements are readily available and if the patients want to take them, they certainly can after consultation with their physicians.
Thank you again for your interest in our Foundation.
Kind Regards,
MJFF Research Team
The door is not closed and I think, from reading posts on this forum, that Dr C's team is busy writing a submission for funding from MJFF.
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pjokeefe
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Are you kidding me? Thiamine HCL is the only thing that did anything for me. It's cheap and it's available. Placebo effect wears off after a while. What they want to promote is DBS and all very expensive drugs that make us feel horrible.
Really? You got that impression from her/his letter!! If not what do you base that on? Does MJFox make money out of DBS and drugs? If not why would they promote DBS and expensive drugs (whatever they are).
I received the exact same email this morning. So then I included in my reply ‘I’ve noted just a few things that couldn’t have the placebo effect after taking High Dose Thiamine:
1. Constipation
2. Micrographia
3. Side of mouth not drooping (as noted by the speech therapist)
4. Sleeping more calmly (no longer thrashing around in bed and having nightmares)
Just to be rid of the constipation is huge, after having been hospitalized previously. (Definitely not a placebo effect!!)’
As Roy said, another polite reply 🙂. Probably wasted my time replying.
I've never heard of it but I guess there is negative placebo effect also? Lots of people on here expect prescribed medications to have detrimental side effects so may become a self fulfilling prophecy!!
The opposite of a placebo effect is called a nocebo effect.
pjokeefe & parkie13,
Thank you both for posting this reply and for sending your original letters to them in the first place! You guys did better than me, I got no reply!
I guess, as form letters go, at least they sent one that actually mentions thiamine in their reply, so they are clearly aware of it now! What they ultimately decide to do with that information will be telling about what their true agenda is! I'm sure that the HDT team has put together the best information package that they are able to under the circumstances, now to see if MJFF can see the value in funding research into it or not. When you look at some of what they have funded in the past, it is hard to believe that they would just let HDT fall by the wayside! HDT is not limited to just PD and has shown benefit in other neurological disorders and there is a doctor in Southern California who uses it for some of his patients with fibromyalgia and chronic fatigue syndrome as well as PD!
Hopefully Dr. Colangeli will update us as he will likely be the first to know once they make a decision.
Here’s my assessment of the reply — they need a researcher with a plan to apply for funding. It will be interesting to hear if Colangeli’s proposal is accepted.
The pressure (positive results) from our community certainly helps.
Might I also suggest that those of you who are more invested and scientifically-minded could develop a proposal / study and apply for a research grant. Why not? We did have a community member do his own research and write a paper on using grapefruit juice to affect bioavailability of C/L.
I am at a loss to understand what peoples gripe is. I thought that reply was more than just polite, they appear very open to funding research into thiamine treatment. He/she gave some interesting background including previous research then invited applications. What would you have liked different?
Hikoi, I agree and feel MJFF is open to funding HDT as well. It’s my belief that they want to place their $$$ where they feel it will be most effective.
Speaking of placebo effect in pd: ubc (university of British Columbia in Canada) conducted significant research in the nature of placebo effect in pd. They found that it's due to release of dopamine in the brain.
Excellent research Felixned, if the placebo effect lasted for a long time and worked for more than 60% of people with PD, we should stop looking for a solution because we would already have it in our pockets, but here they tell us that it is not so. placebo and ldopa have little influence on non-motor symptoms such as intestinal disorders and fatigue and do not stop progression; while in my case after almost four years and over 300 injections of Thiamine without known harmful effects has greatly improved these symptoms and I can say that I am almost certain that it has slowed the progression. A singular case mine, certainly ... but to be taken into consideration together with all the other singular cases that report benefits. Placebo effect or not? If it works for me it's true for me, everything else is bored, and who wants to live a boring life? My time and my patience is short so I proceed with all the respect for the MJFF that I see more intent than in the past to find a solution, given that they have funded a research on the biomarkers of the progression of PD fundamental tool to determine the success of a research. Whether it works or not Thiamine can no longer be ignored by those who promote research, and this is a step forward and that's all I ask.
PS in case anyone has any doubts about what are the non-motor symptoms of the PD here is a test that will make them clear to anyone, including crime reporters, who have usually already written their bloody version of the story even before interviews with the protagonists.
Placebos have side effects, especially if given withe same precautions, For example, if you tell some one “THese tablets may cause nausea, “. there a chance they will, Inert or not.
I always thought that a placebo was a non active substance, unless you are referring the side effects of sham surgery, as in the trials of benefits of knee surgery, that have been done.
In the published results of dug/placebo tests, the side effects, and their percentage are published, and yes, the “Inert” substance has side effects, occasionally more tha the real drugs
Medical Journals have ads from Pharmaceutical companies. With each ad they must also add pages of “Prescription Information” These additional pages are printed in B & W in small fonts, often in the back of the Journal. They contain information of degree of effectiveness, and side effects of the drug compared with the Placebo.
You may be able to get a copy of teh “Journal of the American Medical Association” JAMA or BMJ, or New England Journal of Medicine, or The Lancet.
I have some old copies, and can send you copies of pages, but I don’t know how to add them here, send me a email. And I will send one.
The matter is in fact quite controversial, so much so that in the presence of a similar old drug an old drug / new drug relationship is preferred to assess its effectiveness.
During the 1990s, the Cure Autism Now! foundation was listening to parents, among others. Before long, a parade of NIH-connected researchers began visiting CAN! and preached a gospel: listen to us, we know where the real research is happening. CAN! Was by and large from veering from the path of NIH orthodoxy in autism research.
I imagithat the same nefarious process is happening with MJFF.
I'm talkin about PD now. Mjff has the money and the power. They are the ones that approve different trials and they see the results. You would think they would alert the doctors, and produce some kind of a directive based on their findings. The wheels turn extremely slow.
BACKGROUND: Pharmaceutical companies fund the vast majority of the clinical research that is undertaken on medications but face a conflict of interest between producing good science and results that will enhance the sales of their products.
OBJECTIVES: To document concrete examples of bias in clinical research induced by pharmaceutical industry sponsorship.
METHODS: This paper uses a thematic approach to documenting the extent of these biases in the following areas: research question/topic, choice of doses and comparator agents, control over trial design and changes in protocols, early termination of clinical trials, reporting to regulatory authorities, reinterpretation of data, restrictions on publication rights, use of fake journals, journal supplements and symposia, ghostwriting, publication and reporting of results and outcomes.
RESULTS: Bias in favour of industry is apparent in every one of the themes examined with the result that research funded by industry undermines confidence in medical knowledge.
CONCLUSIONS: Bias induced by commercial concerns can be countered in one of two ways. The first is to erect a firewall between the money and the people doing the research and the data analysis. The other approach is to develop an entirely separate funding source that is independent of the pharmaceutical industry.
I agree and I dont think criticising MJF on the grounds of that letter is justified or helpful to the cause. But why would you want to work with an org you think has nefarious intent? And more importantly why would they want to work with us, they would be damned if they do and damned if they dont it seems to me.
I am convinced that wanting intensely is part of the solution. I don't forgive the groups that are credited with the great responsibility and in fact the monopoly of research and discovery and after 50 years from LDopa and billions spent do not even have a precise instrument for measuring the progression of the disease. When the combined intention of all of us is exercised the solution will be there. 10 million people with PD and billions of dollars spent demand a result otherwise it is treason.
When I started B1 last year I did not believe in it. And if you do not believe in it it should not be a placebo effect. Again, how long such such an effect lasts?
I feel the same way. Especially, when I stopped the last time I noticed how bad I was before. I had to hang onto Furniture to walk around and hang onto Furniture when I was standing or I would fall. I can stand up now from the couch all by myself, I can turn around in bed, I can sit up in bed. No more hanging onto the furniture.
I agree... while we are still looking for the correct dose, my husband has shown improvement, having been on B1 since November 2018. I truly believe thiamine has helped him -- now whether it is actually the B1, placebo effect, or unicorn tears, I am thankful and gratefuI that I stumbled on this forum. It has given us hope for the future.
I haven’t read all the replies but I too felt the letter was very positive and open to both suggestions and applications for their funds. I imagine as such a high profile charity that they have a lot of money available for research. My thoughts as a UK resident who doesn’t have to pay for meds but at a point where NHS is under immense strain due to reductions in Government funding etc... if this supplement is cheap and effective you do not want it to go through double blind trials! This, if successful, would take it from cheap supplement to expensive drug!! I’m a distributor for a major essential oils company and they do not want to put their oils through proper trials for medical claims as that, whilst getting FDA approval, would price the products out of the market. It’s this research that means the drugs you are prescribed are so expensive! In the UK cost of meds isn’t an individuals problem except when prescribing Paracetamol that is available for pence in supermarkets and bargain stores, by buying our own we would release the money that could fund 80 cataract operations (approx)!! So be careful how you promote this product. Wouldn’t it be better to try it on recommendation and in the support of your dr, than to push it through expensive trials that would put it into the very expensive drugs list.
I can't imagine not having to pay for meds, or having health care premiums! I live in the USA, and a good portion of my pay goes for meds and health care premiums and costs. The one bright spot for me, though, as a person with Parkinson's, is that I am in a trial study with the Michael J. Fox Foundation, that includes DNA testing, and I have not had to pay for anything! That's a good feeling! I believe that the MJFF will research B-1 vitamin supplementation, if they haven't started already.
For years in the UK we have taken free health care for granted but the NHS is very vulnerable now. I think we should look at means tested healthcare even if you only pay 10% of the costs and only if you can afford to! This may release some money to be used elsewhere. The biggest problems the NHS have are mismanaged funds some scandalously and the other is massive pay for the CEO and other top staff! Our NHS is still the best health care in the world! I am scared we could lose it and go over onto a system like yours!! It would be a nightmare! I’m glad with the MJFF you’ve had a chance to experience free health care! It is one less thing to worry about! 😊
I, also, wrote to the MJFF, and got the same reply. I wanted to put my two cents worth in, in the hope that Dr. Constantini's work will continue, with other researchers taking an interest in Vitamin B-1/Thiamine supplementation, too.
This HU group has an impressive quantity of anecdotal information regarding thiamine for Parkinson's. If one or several individuals would sort thru these myriad anecdotes and organize them into a book, the some scientists, some foundation personnel, and some others would be more likely to become interested.
The book could have several sections. For instance:
I got a similar reply from the MJFF. Good to see others are writing in. It’s on their radar. At this point, I think Dr. C’s team needs to submit a study proposal to the MJFF for funding.
They are working on a proposal. It takes time and with Doc C’s current medical situation it’s slower. They don’t want to miss any pertinent information. We must be patient. As long as we are benefiting and sharing this information with others I’m satisfied. I see ads on Facebook and post the information for all to see. People are interested.
Thank you for sharing the above and for having contacted MJFF. The only way the Parkinson’s world will seriously consider B1 is if there is double blind placebo controlled research. If Dr. Constantini‘s group is preparing to apply for a grant to MJFF perhaps those of us who are proponents of having tried it, and if it’s benefits, can provide them with testimonials that become part of their submission? I don’t know if that’s ever done but we all live in the territory of needing to find new ways of making things happen. Perhaps Easilly can you give us some guidance.
The object of the research is not to see if Placebos work, we know they sometimes work, but to see if the medication under test works better than the Placebo. The research is carried on in several centres, so he results can be compared. I understand the cost of the study is about 300 million dollars, and as only one drug out of three ever makes it to market, the pharmaceutical industry has 900 million invested before they get any return.
Or in the case of HDT the placebo group miss out on the many benefits of thiamine hcl that are being reported by this group and Roy Prop's facebook group.
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