Wednesday, July 16, 2008

it's at the 9-12 month mark when will know if it works

Dear all,

You are receiving this message because you or your PALS are participating in or have participated in or requested information about the online worldwide ALS lithium study. We wanted to let you know that the preliminary three month study report is now available for download. Please go to and download the report from the latest "updates" link at the bottom of the page. Please note that this is a preliminary report which has not yet been edited or approved by PatientsLikeMe.We will continue to collected data through the 6 month point after which we will write up a final report. All data collection and analysis after that point will be done by PatientsLikeMe.Our basic results so far are, in summary:At the three month point:

Lithium does not affect ALS progression rates, at least for most PALS

Taking riluzole with lithium does not make a difference

Reaching a blood level of 0.4 does not make a difference

The ALSFRS-R score when lithium was started doesn't make a difference

Lithium may relieve cramps and fascics and spasticity for some at low doses (0.2 mmol/l blood concentration)Although not in the 3 month report, it seems that PALS who are taking an Omega 3 supplement are progressing a bit more slowly. There was also an interesting research report that came out yesterday that calcium supplements may be helpful (Medications and laboratory parameters as prognostic factors in amyotrophic lateral sclerosis. Qureshi M, Shui A, Dibernardo AB, Brown Jr RH, Schoenfeld DA, Cudkowicz ME.) The research abstract didn't give the dosage, but a quick search of PLM indicated that many PALS on calcium are taking ~1200 mg/day.

Thank you so, so much to everyone who has provided data for the lithium trial. So far our research results have been disappointing, but it is so much better to get results quickly so that we can move onto the next thing rather than to have to wait 2 to 3 years for the traditional research machinery to do its work. You have shown what a dedicated groups of PALS and CALS can do!Best wishes to everyone -- I'll be in touch,Karen

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