Naviaux Research on Cell Danger Response could help POIS.

[Mr Raba]

This is not just my opinion. I contacted this eminent researcher to ask him if he knew of POIS and that I felt there is a link with CFS, POIS and CDR. I mentioned to him I have both CFS and POIS and advanced degrees in science that help me realize that they are part of the same disease spectrum.

To my great delight this prominent researcher replied. 

He said there IS (not might be, or could be) a link between CFS and POIS. People of this caliber measure their words.  And that he believes once CFS is resolved POIS will be too.

Posting  his exact words soon.

Also notice that Naviaux just had the only trial in the history of AUtism that produced extraordinary results.

Willpost that link soon. Autism and CFS he believes are CDR disorders.  Part of same spectrum. Not the same but similar and sending the all clear signal to turn off the Cell Danger Response may work for both.

[Mr Raba]

Dr. Naviaux exact words:

“Hello ******,

POIS is one of many other disorders that is tied to ME/CFS.  I am confident that if we are successful with our treatment of the root problem in ME/CFS that POIS will also be improved or cured.  We are only doing research and do not see patients in the clinic.  We should have new results from a clinical trial in about 1 year.

Sincerely,

Bob

Robert K. Naviaux, MD, PhD
Professor of Genetics
Biochemical Genetics and Metabolism
Departments of Medicine, Pediatrics, and Pathology
Co-director, The Mitochondrial and Metabolic Disease Center (MMDC)
UCSD School of Medicine
214 Dickinson St., Room C-102
San Diego, CA  92103-8467

Cell:  (619) 993-2904
Office:    (619) 543-2904
Fax:    (619) 543-7868
email:    naviaux@ucsd.edu

Naviaux Lab Website:  naviauxlab..ucsd.edu
MMDC Website:  biochemgen.ucsd.edu
Mitochondrial Medicine Society Website:  www.mitosoc.org”



The succes he had with a very preliminary trial for Autism is linked below.

My Reply to him:

“Thank you for the hopeful reply.  Hope is the beacon that can help so many. Specially to those with POIS which is an orphan condition.

Would it be Ok with you for me to post your reply in the POIS forum so others are aware of the connection to CFS/CDR and may become involved in helping facilitate the resources needed to continue research the broad area”

His relply:


“Yes. But it is important to note that there is no substitute for the rigorous clinical trials in ME/CFS.  We cannot do this research without the financial support of families and foundations around the world.  You can also help us by referring people to our website at:

naviauxlab.ucsd.edu and the support pages at

naviauxlab.ucsd.edu/support

Sincerely,

Bob”

Both emails were today. The success he had in a preliminary trial of autism that elucidates
the mechanism od CDR is here.

https://www.omf.ngo/2017/10/19/treating-autism-and-mecfs-could-one-drug-do-both/


What I think. 

1. Eminent scientist says Pois one of many conditions tied to CFS.
2.  He says when CFS cured or improved so WILL POIS.
3. Made CDR response temporarily stop with a miniscule amount of drug in Autism
4.  Currently his research is my best hope for a CFS and POIS cure.
5. More results in about a year. Not sure on what.

Note he used  a very small amount of that drug. Please do not experiment with it.

[Quantum]

Thanks for sharing, MrRaba.  Any research done for another disease that can help POIS is a great benefit ( CFS research sure have more budget than us, now that this illness have gained recognition by the medical establishment )

I am sure you will keep an eye on any development about the work of Dr Naviaux, so keep the forum updated about his current study.

[Mr Raba]

Will do Quantum.

Yes. CFS has at last has millions allocated to research in multiple fronts by world renowned researchers.
The race is on since many believe that the next quantum advance in medicine will be the unlocking of the secret behind metabolic illnesses. 

Since the cure to CFS is likely to also mean the cure for POIS (per DR. Naviaux and I firmly believe he is correct), this brings great news to all POISers.  It means that lots of research and money is being put in what a top researcher believes will bring us the cure. I believe we are not abandoned but moving forward as we fortuitously ride on the CFS research train. 

[Observer]

Hello Mr Raba and Quantum, you could see the original message below - See also the last one, I think this could be food for thought. The second message has another message from the same thread:

[Observer]

This is really interesting, Mr Raba.

If this really has a potential to fight against POIS/CFS, then we should look into these potential alternatives.

Let me establish the following link:

- The drug you refer in this study is called Suranim. As you said, you shouldn't try it because it is an aggressive drug originally designed for other purposes - mainly tropical diseases.
- However, this drug seems to work because it inhibits purinergic receptors.
- Well, it seems that there are two other drugs that inhibit the same purinergic receptors ( P2Y2 and P2X7) that are mentioned by Dr. Narvaux (and that are supposedly inhibited by Suranim)
- One of them is Sytrinol, the other one is Kudzu. In case of the first one, the active compounds are polymethoxylated flavones which can be obtained from citrus. It seems that both have given good results when used in autistic children, if we trust this report: http://forums.phoenixrising.me/index.php?threads/potential-suramin-alternatives-sytrinol-and-kudzu-anti-purinergic-therapy.52427/
- The only problem, is that these flavones are not in the core of the citrus fuits, but in their peels.

- We could try if it is really effective on us by eating citric peels in a safe way. I am looking into it, because this "safe way" is what concerns me. This website suggests dehydrating them after cleaning (but my question is: If we do so, will we be losing the flavones in the process?): https://oureverydaylife.com/how-to-eat-an-orange-peel-12507954.html

Edit: It seems that citric peels would only inhibit P2Y2 whereas the other medicine will inhibit P2X7. It seems that these drugs could have side-effects on the long term, so you mustn't take them (alternatively, you should visit a Dr. to know about their safety)

More information about P2X7

https://en.wikipedia.org/wiki/P2RX7#cite_note-pmid12270951-18

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2721772/

You can also find a lot of information about the pharmacokinetics of some potential inhibitors in the 2nd page of this thread (user Hip) - It is not as easy as it seems, and only a few like calcium (maybe it will work), emodim (unsafe to take the herb for more than 2 weeks), magnesium (injections or transdermal) or canned cappers would work.

http://forums.phoenixrising.me/index.php?threads/potential-suramin-alternatives-sytrinol-and-kudzu-anti-purinergic-therapy.52427/page-2


Looking forward to your reply,

Observer,

[Observer]

Read this message, I think it could be really important:

http://forums.phoenixrising.me/index.php?threads/potential-suramin-alternatives-sytrinol-and-kudzu-anti-purinergic-therapy.52427/page-3#post-934012

[Quantum]

Thanks Observer for this information.

If anyone would be interested in citrus peel, I strongly believe that you have to buy organic citrus, to avoid all the chemicals that are sprayed on the peel of non-organic ones.

Clemastine is available OTC, and i called Tavist, here in Canada.  It may be hard to find in pharmacies, because it is out of favor as an antihistamine - you may have to ask it to be ordered for you.   I have check and there is no report of using it on this forum.