Wednesday, June 05, 2024

Potential New Treatment for ME/CFS & Long-COVID Shows Promising Results

One of the top ME/CFS specialists, Dr. Kaufman of the Center for Complex Diseases in California, published a paper with a colleague in 2022 about a supplement that has shown stunning results in his ME/CFS and long-COVID patients. The supplement is oxaloacetate, and in an informal "proof of concept" study (i.e. not a placebo-controlled study), his team gave the supplement at various doses to patients with ME/CFS and long-COVID over six weeks and assessed changes in fatigue scores, using a standard scoring guideline. Results showed significant improvement in both groups of patients (22-28% in ME/CFS patients and 47% in long-COVID patients). They clearly saw that higher doses were more effective. You can read the details of their preliminary study here.

They then began a more formal clinical trial, placebo-controlled and over a longer period of time, for ME/CFS patients. That trial is in progress, but Dr. Kaufman reported on stunning interim results at an ME/CFS symposium last November. You can watch his short (14-min) video on YouTube or below:

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He explains that he is mainly a clinician (treating patients), so he keeps the science fairly simple here, and it's an interesting talk. Watch for the results he presents, about halfway through. The trial has so far shown amazing results, not only in reduced fatigue levels but also in patients being able to spend more time upright (sitting or standing), rather than horizontal ... which is, of course, huge.

They are currently recruiting long-COVID patients for a similar trial through the Bateman-Horne Center. You can sign up here.

Other researchers are studying it in ALS and cancer patients, as well.

Of course, I immediately searched to find out if this supplement is available now. It is, but at the doses used in the study (1000 mg twice a day), it is very expensive, about $500 for a month. This is the exact supplement being used in the trials, with the higher dose, and available directly through the manufacturer.

Oxaloacetate is already available commercially through Amazon (and other suppliers, I'm sure), sold as a supplement for anti-aging and PMS support (interesting), but these are a much lower dose, just 250 mg per pill (so you'd have to take 8 pills a day to hit the amount used in the trials). I saw two main brands there, benaGene (looks like the same manufacturer as what was used in the trial) and Jubiliance, each with 30 pills for about $50. But since you'd have to take 8 pills a day to get the most effective dose, a bottle of 30 would only last just under 4 days, and you'd need 8 bottles to last a full month, which would cost $400. And I can't tell from the labels whether these contain the exact same molecule as was used in the trial (which specifies AEO anhydrous enol-oxaloacetate). So, I wouldn't recommend going it on your own just yet (unless you can afford the $500/month for the exact one used in the trial). I plan to wait for these latest study results to be published and hope that maybe the price will come down.

This study presents one of the most promising treatments for ME/CFS and long-COVID we've seen so far! And, while the cost is currently out of reach for many patients, it is currently available, which is pretty amazing. Keep your eye on this one! I'll report any additional news I hear about it.

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Jkay said...

I tried taking BenaGene and Jubilance, consecutively. I didn't notice any difference between the two but I only took one pill a day (based on what I could afford) and there was a quite small but noticeable improvement in my overall mood / energy after 3 weeks. I stayed on it until I started LDN. I unfortunately can't take both together as they cause me headaches??! I find out the end to be more effective but probably because I can take a therapeutic dos, whereas with the oxaloacetate I was taking such a small amount the improvement was fairly minor.

Sue Jackson said...

Thanks for sharing your experience, Jkay! According to the atudies so far, dose makes a BIG difference with oxaloacetate - they saw increasing improvement as they increased doses. Glad that LDN is helping you!