I unfortunately have to share some sad news with you all.
As you all know we submitted to the Michael J Fox Foundation a project proposal for a clinical trial involving the High Dose Thiamine treatment. Although the pre-proposal was invited for further development (stage 1) unfortunately the proposal has been rejected by the reviewers at stage 2.
The reviewers expressed various concerns and a general skepticism about the impact that thiamine with the protocol developed by Dr. Costantini can actually have on PD. The three reviewers although contradicting each other on specific sections of the review, generally implied that the research is not groundbreaking and novel enough, not very trustworthy, same goes for our design (based on dose titration aka giving each patient its efficient dosage or else no improvements can be seen whereas they would have preferred a one size fits all type of dosage) and the lack of experience and reputation of us as Investigators. Reviewers also pointed out that our estimates concerning the recruitment of patients were far too optimistic (200 patients from two of the largest hospitals in Italy in 12 months), one highlighted that the budget we estimated for the clinical trial was too low to be true and in general said that our proposal is unrealistic and the expected results would not be very relevant to the PD community.
I am very sorry but this is their verdict and we can only accept it even though I personally feel this is a missed opportunity for many PD patients.
Another sad piece of news is that unfortunately Dr. Costantini was found positive to the COVID-19 and as many of you know he is already in extremely precarious health conditions as a consequence of the stroke that followed his surgery last year. He is in the Hospital in Lecce right now and we all warmly hope he can win even this battle and return home safely.
I am sorry I am bringing sadness in this delicate and complicated moment for us all but I promised I would have kept this community informed and updated about Dr. C and our attempts to obtain funds for a clinical trial on HDT, although news this time is particularly bitter.
Money money money ... and again money. It is the real cause of the failure of “modern” medicine to cure almost every modern important disease (hearth, cancer, diabete, etc) and the third Major cause of death is iatrogenic. This is also the reason why freedom of cure ourself is a must. If this people will ever control the entire medicine and decide which cure or protocol will survive it will be the end for the most.
Only vaccine (the biggest cash machine) will be developed and imposed to everyone regardless his health condition and the rest will be answered as seen for B1 HDT.
In 2016 I wrote them an email on the B1 therapy for them to investigate (for J. Fox or whoever else). No reply.
Sorry to read about the doctor passing. And even more sorry that the trial was turned down. There seems to be a mind block on natural supplements I think it’s because “ big pharma” can’t make as much money on them. But that’s just my humble opinion. Those of you that have success with the B1 therapy should keep on keeping on......
Thank you for keeping his treatment protocols alive. We are trying B1 to for my husband with PD. He really struggles with fatigue and malaise. I agree with Williemom they are not interested because it is inexpensive and they want to make $$.
FIRST STEP: a UPDRS test, a push test with video, a walking and turning test with video, a talking test with video and possibly a writing test, standing from seated on hard back chair video with your arms crossed. These videos are kept on file to be used for comparison with future videos. This is a fairly accurate means of documenting improvements over time as it is actually fairly easy for some people to not realize how much they have improved over time.
you could start by running a small phase 1 IV trial using Dr. C's case study. Run it with 30 participants to start. 2x per week. 6 months. random (15x15). double blinded. US. UPDRS-3 benchmark.
whoever wrote the proposal MJF wasn't very knowledgeable of CTs or MJF. find somebody who knows something about both.
I know this is old news and Lord knows I cried when I heard Dr. Constantini had died, but did you really expect anything from the M J Fox people - I certainly don't. All these years and all these contributions and have they cured Michael? No they have not! So go your own way guys - give us a contact email address so we have some one to contact with a question or whatever and if you want to charge for it - I would say 10 Euros sounds fair.
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