Answer from MJFF on HDT.

[Fed1000]

I don't know if Dr. Colangeli constantly reads our posts but maybe it would be useful for dr. Colangeli to see the answer received from MJFF. Maybe some members who is in contact with him could send it.

[lempa_nik]

FWIW, I have just emailed the MJFF response (received by pjokeefe) to Dr. Colangeli. I will share his reply, if any received.

[lempa_nik in reply to lempa_nik]

Does anyone have the personal email address of Dr. Colangeli? I sent my message to [e-mail], thinking this would reach him, and got back a form letter telling me that Dr. Costantini is incapacitated and could not reply.

[tacato in reply to lempa_nik]

Do you mind posting the MJFF response? I can't seem to find it. Apologies if you've done this already and my searching skills are inept.

[lempa_nik in reply to tacato]

Here it is, together with pjokeefe's original letter, for context:

"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.' "

[mannp in reply to lempa_nik]

You are correct. They are working on a proposal.

[tacato in reply to lempa_nik]

Thank you very much!

[mannp]

Dr. Constantini himself has already received a reply from MJFF. They are already working on a proposal to send out to possible funding sources for our clinical trials across the United States and across Europe. Everyone needs to be patient as this is in the works. It takes time to write a proposal of this type. It doesn’t happen overnight.

[JayPwP]

MJFF on B1 Thiamine:

michaeljfox.org/news/thiami...