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

[Tally]

BOTH would be important to test for: serology and PCR. You could have tested positive for PCR microbes but your immune system isn't reacting to them (negative serology). Or, you could also have positive serology and not have any microbes in you (negative for PCR) , because you immune system is haywire and still producing antibodies.

+ PCR; - Serology = infected but not reacting
- PCR; + Serology = not infected but immune system reacting

I agree in general, but not in the context of Suramin, which is what we are discussing here. Some people are worried about turning cell danger response off if there is an active infection.

 

[junkcrap50]

I agree in general, but not in the context of Suramin, which is what we are discussing here. Some people are worried about turning cell danger response off if there is an active infection.

Correct, and I agree. But I was replying more in the context of Lipkin's research.

 

[halcyon]

IOM looked at all research pertaining to ME/CFS. They had to discard great majority of it because of too small sample size or bad quality, bad methodology or bad cohort definition. If you don't see research paper that you like there you can be almost certain there were serious issues with it.

I'll be dead and buried long before there is evidence that would have satisfied the IOM that would help me. I'll go with what the existing evidence (and my and my doctors own evidence) says now, thanks.

 

[halcyon]

- PCR; + Serology = not infected but immune system reacting

This is wrong and is a dangerous assumption to make. Detectable enteroviral viremia in body fluids is not the norm even during acute infection and chronic infection in humans is undeniable. During chronic infection of the CNS in immunocompetent people, the CSF is almost always clear of virus and only a biopsy of the brain tissue can show the infection. This has been demonstrated numerous times in published case studies (1,2).

 

[junkcrap50]

This is wrong and is a dangerous assumption to make. Detectable enteroviral viremia in body fluids is not the norm even during acute infection and chronic infection in humans undeniable. During chronic infection of the CNS in immunocompetent people, the CSF is almost always clear of virus and only a biopsy of the brain tissue can show the infection. This has been demonstrated numerous times in published case studies (1,2).

You're right. I simplified it too much. You're very much correct. I'll edit it.

 

[pattismith]

"We are hopeful that the new supplier of suramin will, in the long run, offer a simpler path forward and fewer potential delays in testing. If future clinical trials show that suramin is safe and effective in treating ME/CFS, then the FDA will have all they need to make a decision on approval in a shorter period of time than before. Ultimately, this means that the drug can become available for patients with ME/CFS faster than was possible before," said Dr. Naviaux.

http://forums.phoenixrising.me/index.php?threads/omf-winter-newsletter.57593/

 

[adamjfpickering]

Update: All people who used the drug suramin and whose symptoms were ME/CFS failed. My personal connection who was diagnosed with ME/CFS was misdiagnosed and was tested for bartonella/babesiosis and in fact that is the cause of the ME like symptoms.

 

[Tally]

Update: All people who used the drug suramin and whose symptoms were ME/CFS failed. My personal connection who was diagnosed with ME/CFS was misdiagnosed and was tested for bartonella/babesiosis and in fact that is the cause of the ME like symptoms.

Suramin is currently only approved in Africa to treat African sleeping sickness. Outside of Africa, it is only available for research purposes, and as you can see for trom this thread it is difficult for researchers to get their hands on it as well. It's cytotoxic if it's not injected slowly, so you need someone who is experienced with giving suramin. Where did this people with ME/CFS supposedly manage to get Suramin administered? I'm sceptical.

We are all aware Lyme disease can cause similar symptoms to ME/CFS. Majority of us who could, got tested. Tests for bacteria causing Lyme are not very reliable though, but unless one lives in high-incidence area or until better tests are available damaging mitochondria with blind antibiotic treatment is not very smart.

 

[melihtas]

I am one of the persons @adamjfpickering mentioned. I took 2 x 1g Suramin 3 weeks apart. The last one was a month ago. I haven't had any improvement. I didn't have any side effects either, other than a mild headache lasted a few days after the first injection.

I am the only one who used research version of suramin from this company, others got their suramin from other manufacturers.

Of course, this doesn't prove anything about its effectiveness for ME. We still need to see metabolomics studies before and after injections. Maybe the proposed dose is too low for ME patients.

My ME is slow onset type developed over 16 years. My PEM starts 48 hours after exertion. I have every single ME symptom in CCC other than tender lymph nodes.

ETA: I introduced myself as a researcher to be able to buy suramin. Research chemical companies don't sell products to patients.

 

[Jesse2233]

@adamjfpickering @melihtas

In the bedside chat with @Ben H, Ron Davis says that the research version of suramin is unpure and that only the Bayer version will suffice

Were these other patients using Bayer suramin or the research chemical available online?

 

[Martin aka paused||M.E.]

I think that should be forwarded to Davis and Naviaux

 

[melihtas]

@adamjfpickering @melihtas

In the bedside chat with @Ben H, Ron Davis says that the research version of suramin is unpure and that only the Bayer version will suffice

Were these other patients using Bayer suramin or the research chemical available online?

Others used research version of suramin from other manufacturers. Bayer suramin is not available anywhere in the world. Only WHO has it but they give it to African Sleeping Sickness patients only.

Ron Davis said impurities might be causing side effects, he didn't say anything about their effectiveness in that video. He also said leftover products from old trials are circulating in the market, however, the suramin I bought was a fresh batch. Research chemical companies don't sell old products.

 

[Jesse2233]

Others used research version of suramin from other manufacturers. Bayer suramin is not available anywhere in the world. Only WHO has it but they give it to African Sleeping Sickness patients only.

Ron Davis said impurities might be causing side effects, he didn't say anything about their effectiveness in that video. He also said leftover products from old trials are circulating in the market, however, the suramin I bought was a fresh batch. Research chemical companies don't sell old products.

I see, thanks for clarifying. To be clear no one used the Bayer version. To be honest, I don’t know enough about the research vs Bayer versions to say whether one is less effective. But my limited understanding of pharmaceuticals tells me that effects can vary between manufacturers.

Regardless, props to you for being a pioneer and sharing your experience. I’m sure it took a lot courage to go forward with the first dose.

 

[frozenborderline]

Good work on contacting Naviaux directly, @Jesse2233

I keep wondering about one thing. Many ME/CFS doctors tried many things on their patients experimentally, just giving it to them off label and seeing if it works. Like the recent rapamycin case.

Can we do that with suramin? It has a much stronger basis to suspect it will indeed work than many of the things tried already. And its probably even safer than most of them.

This method wouldn't produce a nice, clean paper proving that suramin is the treatment for ME/CFS, but we would at least have some early knowledge if it can work.

This method wouldn't require millions of dollars of funding, or years to complete. It would just need a willing patient, who there are plenty of, a willing doctor, who I'm sure we can find, and the drug itself.

Would Bayer sell the drug for that kind of thing? If not, is there any way to buy some of it from them without stating a purpose, and just use it for this?

I've heard of people going to mexico for suramin

 

[Aroa]

I think if they were really confident Suramine may work, they would have already conducted a clinical trial.

The supply issue seems to me an excuse, for just a pilot study as the one made for Autism by Dr. Naviaux.

 

[Tally]

I think if they were really confident Suramine may work, they would have already conducted a clinical trial.

The supply issue seems to me an excuse, for just a pilot study as the one made for Autism by Dr. Naviaux.

Who? Bayer? That's not how it works.

It's not an excuse, Dr. Naviaux explained he intends to do three phases of trials that could take up to a decade. See how long it took to get to phase iii with Rituximab. Interruptions in the supply could really slow the whole process. Dr. Davis who only intends to do small phase i trial on 5 patients will do it this year.

Why immediately cast doubt without any evidence?

I agree with @MartinDH, Dr. Davis and Dr. Naviaux should know about this.

@Ben H @Janet Dafoe (Rose49)

 

[dreamydays]

This is disappointing news. I was in the planning stages of also trying this. I have a few ideas in the pipeline. I have found a source for tocilizumab so will work on that as a project for a trial at home if I need to trial a new drug. I would like the OMF to at least consider tocilizumab for some lab tests.

What I have to say is fair play to you all for going ahead and trying this. There is no way we should just lie in our beds waiting for new treatments while our bodies are rotting away from the insides. So much respect to you all.

 

[markiz2001]

Bayer refused to give suramin to dr. naviaux for the trial. Looks like no trial this year. So disappointed..

Also disappointed it didn' work for the few people who tried it.

There is no hope

 

[Learner1]

This is disappointing news. I was in the planning stages of also trying this. I have a few ideas in the pipeline. I have found a source for tocilizumab so will work on that as a project for a trial at home if I need to trial a new drug. I would like the OMF to at least consider tocilizumab for some lab tests.

What do you think it will do to help us?

 

[dreamydays]

It is the best drug for treating fatigue caused by RA. By removing IL-6 it will cause changes in other cytokine levels hopefully lowering TGF-b1 and other cytokines which may be disfunctional. More importantly it increases levels of krebs cycle metabolites, gluathione and PDH. There has been one forum member who trialled it and it was a success but they have since disappeared. It seems a good candidate for a pilot.

Here is the thread about it: http://forums.phoenixrising.me/index.php?threads/tocilizumab-is-amazing-anyone-tried.51976/