OMF/OMI B12/Folate Clinical Trial

[Mark]

Received from OMF today...

Link to donate:
https://app.etapestry.com/onlineforms/OMF/B12FolateTrial.html

ME/CFS/FM/Lyme Symptom Relief Study
B12/Folate/MTHFR
Proposed International collaborative
multi-site, double-blinded
placebo-controlled clinical trial
75-day Crowdfund till Feb 14th
Join the $12 for B12 Challenge
Please pass this on to
Family, friends and fellow members​

Symptom Relief Possible Today
for many with ME/CFS, Fibromyalgia or Lyme
($12 Crowdfund for B12 study)​

The Open Medicine Foundation & Institute collaborates with the best scientists and clinicians around the world to find treatments and ultimately a cure for ME/CFS/FM/Lyme (Borrelia).

The Gottfries Clinic in Gothenburg, Sweden, along with several U.S. ME/CFS/FM/Lyme experts have observed significant reduction in fatigue and cognitive symptoms in 20%-50% of their patients that have a MTHFR mutation in response to alternative formulations of Vitamin B12 and Folate supplementation. Preliminary data has shown that these mutations are commonly found in ME/CFS/FM/Lyme patients.

Imagine if this treatment improved your quality of life or your loved-one’s significantly. We want to give the international patient community access to this low-cost treatment by rigorously validating it.

A double-blinded, placebo-controlled clinical trial lead by Dr. David Kaufman and Dr. Andreas Kogelnik, Open Medicine Institute, Mountain View, CA in collaboration with the Gottfries Clinic,Gothenburg, Sweden and Dr. Dan Peterson,Incline Village, Nevada will do just that.
To run this critical international patient trial we need your support today.

The 100-patient, multi-center trial will cost $275,000. To kick this off, $30,000 has already been donated.
Please join us and take the 12 for B12 challenge ($12/$24/$36….$120, $240) and donate today.
Target: $275,000, 100 patients
Getting there: $30,000, 12 patients

The B12/Folate clinical trial is set to begin in March with results expected by end of next year. Your gift will help ME/CFS/FM/Lyme patients world-wide. Let’s get more treatment options for people with ME/CFS, Fibromyalgia and Lyme disease.

The Open Medicine Foundation & Institute are committed to helping people with ME/CFS, Fibromyalgia and Lyme disease today…

Link to donate:
https://app.etapestry.com/onlineforms/OMF/B12FolateTrial.html

 

[JAH]

Made it! Great news from the OMI today,

Open Medicine Foundation
BIG NEWS! Thank you! Because of YOU, our supportive and generous community, the OMF has successfully raised over $150K and will fund a collaborative study of B12/Folate supplementation benefits in ME/CFS patients with and without MTHFR gene mutations. Follow the details in our newsletter. Sign up at www.openmedicinefoundation.org.

 

[Mary]

This appears to be good news - BUT - if the study does not take into account the effect of B12/folate supplementation on potassium levels, it may be worse than no study at all. Freddd of this board wrote many posts about using methylcobalamin and folate, and he made the crucial point that for someone who was low in folate, suddenly increasing folate levels could cause a sudden and precipitous drop in potassium levels, which can lead to severe fatigue and other serious problems.

Almost 3 years ago, after reading Freddde's posts, I started taking folate (in the form of metafolin - Solgar brand - I'd already been taking methylcobalamin) and within a couple of days of starting the folate, my energy picked up markedly. It was fabulous. And then a couple of days after that I tanked, hit a wall, felt horribly tired and lethargic. And if I hadn't been reading Freddd's posts, I would have thought I was detoxing or somehow having a horrible reaction to the folate and would have stopped it. However, luckily I remembered what Freddd had written about potassium and so I started taking potassium, titrating up to 1,000 mg. a day, and then gradually eased back and now take a maintenance dose of 400 mg. a day, and that horrible lethargy and fatigue has not returned. I still take the folate and methyl B12 and feel better overall, although unfortunately I still crash - it didn't solve the problem of PEM.

OMF e-mailed me asking for money for their research project. I e-mailed them back about the crucial role potassium plays in all this and I think I sent them links to Freddd's posts. I never heard back.

so if they do this wonderful study without watching for low potassium, then it will be worse than no study, for when people start tanking when their potassium levels drop, they'll conclude the folate etc. does more harm than good.

Mary