How can we help accelerate Dr Naviaux's ME/CFS Suramin trial?

[Jesse2233]

At the OMF Symposium Dr Naviaux mentioned that trials of Suramin have been delayed.

The profit motive is not there for Suramin's manufacturer Bayer because the drug is out of patent and off brand. He did mention that another company is gearing up to produce it, but that it will take a year and half.

----------------

Here's what we know so far about Suramin:

- it works on the purinergic pathway which Naviaux believes is central to core ME/CFS pathology

- it significantly improved the ability of Ron Davis' ME/CFS cells to pump out sodium in vitro

- it improved austism symptoms in a small pilot study

- it requires FDA approval to be imported into the US

It's promising but certainly not conclusive. However it's the closest thing we have to a plausible repurposable treatment outside of Rituximab, Cyclophosphamide, Ampligen, Rapamune, and the various cytokine inhibitors.

----------------

My question to the community is what can we do collectively to help Dr Naviaux acquire Suramin more quickly and speed up trials?

----------------

Some ideas:

1. Put collective pressure on Bayer to support Naviaux's research
2. Petition the World Health Organization to supply the drug
3. Encourage Dr William Weir to run his own pilot trial in the U.K. using the Suramin supply he has access to
4. Find a doctor in Nigeria (country with one of the highest incidences of ME/CFS and likely access to Suramin) to partner with Naviaux on a pilot ME/CFS trial
5. Find a West African doctor willing to use Suramin in a Post Ebola Syndrome trial

Edit: Support Naviaux's work here

 

[Gingergrrl]

Find a doctor in Nigeria (country with the highest incidence of ME/CFS and likely access to Suramin

Jesse, I've never heard that before re: Nigeria having the highest incidence of ME/CFS?! Was that new info from the conference today and how did they measure it?

 

[Jesse2233]

Jesse, I've never heard that before re: Nigeria having the highest incidence of ME/CFS?! Was that new info from the conference today and how did they measure it?

I don't think it was mentioned at the conference and I can't remember where I heard Nigeria was the highest, but here's a study showing that it's higher there than in the US.

Until I find a reference saying it's the highest I'm gojng to edit my post to say "one of the highest"

 

[Learner1]

How about getting the FDA to source it for us? They have an office of people who get drugs overseas for patients who can't source them in the US.

 

[Jesse2233]

How about getting the FDA to source it for us? They have an office of people who get drugs overseas for patients who can't source them in the US.

I didn't realize that. Any insight into the process?

 

[eric_gladiator]

I hope you soon get something that will at least let us be part of our lives

 

[ScottTriGuy]

I don't think it was mentioned at the conference and I can't remember where I heard Nigeria was the highest, but here's a study showing that it's higher there than in the US.

Until I find a reference saying it's the highest I'm gojng to edit my post to say "one of the highest"

Canada wins this competition, our rate is 1.9% (in 2015), an increase of 37.6% over the previous year, so that more than 560,000 Canadians had ME.

 

[MeSci]

Jesse, I've never heard that before re: Nigeria having the highest incidence of ME/CFS?! Was that new info from the conference today and how did they measure it?

There are lots of hits from a search here for 'Nigeria', some of which give (likely?) prevalence.

 

[Alvin2]

Canada wins this competition, our rate is 1.9% (in 2015), an increase of 37.6% over the previous year, so that more than 560,000 Canadians had ME.

I heard the ME/CFS story made CTV news the other day despite trump's war plans

 

[necessary8]

Beat me to the puch with the thread ^ ^

I like the first 3 ideas, though I don't know how exactly you know that William Weir has access to suramin. Care to explain that one?

One way or another I think we should write a petition to both WHO and Bayer and start getting signatures

 

[Jesse2233]

I like the first 3 ideas, though I don't know how exactly you know that William Weir has access to suramin. Care to explain that one?

It was mentioned Dr Weir has access to suramin at the IiME Conference in June.

One way or another I think we should write a petition to both WHO and Bayer and start getting signatures

Agreed

 

[Learner1]

I didn't realize that. Any insight into the process?

I have a contact at the FDA whose job it is to get drugs for people who need them that aren't available in the US. Maybe its worth a try.

 

[ghosalb]

Since Africans have CFS and Suramin is available in Africa.....may be we can convince a doctor or scientist to conduct this trial in Africa ?

 

[Jesse2233]

Since Africans have CFS and Suramin is available in Africa.....may be we can convince a doctor or scientist to conduct this trial in Africa ?

Yes South Africa would be a good prospect.

South African doctors / researchers there who might have interest:

• Dr Cecile Jadin
• Prof. Patrick Bouic
  
• Dr Alta Smit
  
• Dr Nash Petrovic

 

[Sushi]

Yes South Africa would be a good prospect.

South Africa is a bit different--no sleeping sickness there. (I lived there for 15 years) It is more equatorial Africa.

 

[Jesse2233]

South Africa is a bit different--no sleeping sickness there. (I lived there for 15 years) It is more equatorial Africa.

Hmm so then maybe Nigeria would be a better prospect. Still those South African doctors may be connected with specialists in other parts of the continent

 

[Sushi]

Still those South African doctors may be connected with specialists in other parts of the continent

Could be. South Africa itself has a climate more like the US--snow, mountains, semi-tropical areas, but no tropical.

 

[me/cfs 27931]

Had a thought. Suramin is also used in the treatment of river blindness (onchocerciasis).

https://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0045224/

Looking at the geographical distribution of onchocerciasis, one of the affected countries is Mexico.

http://www.who.int/onchocerciasis/distribution/en/

Mexico is literally just a few miles from San Diego/Dr. Naviaux.

 

[pattismith]

Had a thought. Suramin is also used in the treatment of river blindness (onchocerciasis).

https://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0045224/

Looking at the geographical distribution of onchocerciasis, one of the affected countries is Mexico.

http://www.who.int/onchocerciasis/distribution/en/

Mexico is literally just a few miles from San Diego/Dr. Naviaux.

Not sure if Suramin was used in Mexico, here what we can find in wiki:

"Onchocerciasis was eliminated in the northern focus in Chiapas, Mexico,[41] and the focus in Oaxaca, Mexico, where Onchocerca volvulus existed, was determined, after several years of treatment with ivermectin, as free of the transmission of the parasite.[42]"

 

[NelliePledge]

http://www.flanderstoday.eu/innovation/belgium-and-gates-foundation-wipe-out-sleeping-sickness

Maybe Gates Foundation would be able to help with some connections as they are interested in tropical diseases maybe got good links with Bayer. Never know they might cough up some money for small trial.