Naviaux’s small Suramin trial was successful. Could ME/CFS be next?
Autism is one of the most treatment resistant conditions there are – which is why the results of Bob Naviaux’s small autism drug trial were so surprising. Despite the fact that only one dose of the drug was given, every autistic child posted a significant response. In fact, test scores indicated that the group no longer met the criteria for autism.
That’s possibly very good news for ME/CFS given the similar metabolomic findings in both diseases, and Naviaux’s desire to do a similar trial in ME/CFS. Find out what happened in
ATP outside the cell? Could that be what’s in the blood plasma in that experiment of putting CFS/ME person’s blood cells into healthy person’s plasma?
That makes sense – the strange thing is that I remember that putting ATP into the plasma actually helped. I don’t think anyone has been able to explain that one.
Sorry – excellent article, Cort, as always! Thank you.
Hi Cort, Just would like to point out that RCCX Theory explains this. RCCX mutations likely result in a brain wired for danger with sensory sensitivities, enhanced orienting/hyperfocus, enhanced processing/pattern recognition, special abilities and other autistic features due to hormonal shifts in utero/infancy along with exaggerated stress response in setting of low basal cortisol, resulting in associated dysautonomia and high catecholamines. All of this results in a higher likelihood for turning on inflammatory cascades via CRH (increased due to 21 hydroxylase deficiency) with prolonged stress and going into Naviaux’s cell danger response. RCCX mutations are co-inherited: TNXB (hypermobility), C4 (autoimmune and immunodeficiency disorders), CYP21A2 (aberrations in the acute stress response and sex hormones under stress, carriers are known to have low basal cortisol and exaggerated acute stress response).
How interesting! Would any of the above explain POIS? Post orgasmic Illness Syndrome which is sometimes comorbid with CFS?
again thanks Cort, has it not been tried, at one dose for autism, would that not be a reasonable start for our group.
I would think so.
I would be very careful not to climb on board the ‘cure autism’ train, if it is a brain wiring, such as being gay, black, or female, that is not ‘curable,’ but merely a difference, a normal human variation.
Cort – thank you for this fascinating piece.
This is a very interesting THEORY. But we want more than theory now. We have waited too long, already.
Since the ‘theory’ makes a lot of sense, surely a Suramin trial can be done for CFS sooner rather than later? Is Dr Naviaux planning this? What can be done to advocate for this?
by the way, viewing the Q + A on Dr Naviaux’s website, he seems to see a lot of downside in terms of Ampligen.
Money is the problem.
He has no money to do these trials, and nobody wants to give it to him.
Money, as always, it seems is a major problem.
Surely it can be raised if his case is that compelling?
Yes, indeed!
Cort, your article refers to an expanded study. what is this and when are findings likely to be published? Surely if it supports the earlier study it sets a very credible basis for a suramin trial? Surely various CFS organisations could seek to raise funds?
To me, Naviaux’s work seems near the top of the tree in terms of cracking this illness.
If I remember correctly the study is about finished and the data analysis and publication should happen sometime around the 2nd quarter (?) of next year.
One of the proposed benefits of the rituximab trial in Norway is the insight it would give i.e. into the disease mechanism in ME/CFS. E.g. whether ME/CFS is a B-cell dependent autoimmune disease. Surely the same applies here i.e. suramin may help to give an insight into the disease mechanism in ME/CFS. E.g. whether ME/CFS is a purinergic signaling disease. Also, did the NIH indicate that there was an issue regarding the lack of investigations of potential treatments? Is crowd funding, for a suramin trial in M/CFS, a potential way to move this forward?
I might be a bit late to the party but can someone please explain to me why the cells still think they are in danger when the actual “danger” has passed? Also I think this is an amazing study and do you think it could help those who have POTS and other orthostatic intolerance with their CFS?
My baby appeared ‘normal’ after her birth. The actual birthing process was not easy, she became ‘stuck’ (something I expressed concern for prior to the beginning of the birthing process) and I vigorously requested a Cesaerean, which my (male) obstetrician initially resisted (I feel for too long). However, that being said, when she did begin to crawl, she did not crawl ‘normally’. She crawled only on her left knee, with her right leg in an almost crouching position. I since learned this is one of the early warning signs of Autism Spectrum Disorders. Our pediatrician had little to no knowledge of ASD, which did not help. It is imperative,i was on internet searching for autism remedy, then i saw testimonies of how DR CHALE used his herbs to help autistic children without side effect on the child, i then contacted him with his email: (chalesolution@ yahoo .com). He told me that i am in the right place, and he ask me some questions about my child and i told him. i was asked to get his herbal remedy and instructed me on how to administer it, which i did, as am writing this testimony now, there is nothing she cannot do, plays, this is all i ever wanted. we just want to thank him for he is really a man of his words.
Hi Cort,
Do you know of any more recent news re Dr Naviaux’s efforts to get a supply of suramin (since Bayer weren’t cooperative) in order to test it on PwME?
Ditto for any news on the Cortene trials?
IIUC, both seem to be exploring the idea of unnecessary continuing threat perception/reaction at some level in the body/brain, and what might be done to calm or reverse this.
Thanks,
Elizabeth
The success of Naviaux’s Suramin trial in treating autism is intriguing. If it shows promise for ME/CFS too, it could be a game-changer. Looking forward to seeing how this research unfolds!
#housing for autistic adults #aurahomes #cerebral palsy therapies #special educator for autism #autism therapies
The results of Bob Naviaux’s drug trial for autism are truly astounding. It’s incredibly rare to see such significant and positive responses, especially with just one dose of a drug. The fact that every child in the trial showed improvement to the point of no longer meeting the criteria for autism is nothing short of remarkable.
What’s particularly exciting is the potential implications of these findings for conditions like ME/CFS, which also exhibit similar metabolomic patterns. Naviaux’s interest in conducting a similar trial for ME/CFS suggests that there may be hope for breakthrough treatments in the future.
Overall, these results offer a glimmer of hope for individuals and families affected by autism and other treatment-resistant conditions. It’s a reminder of the importance of continued research and innovation in the medical field, and the potential for transformative discoveries to improve lives.