Community Symposium on molecular basis of MECFS! DISCUSSION THREAD!

[lansbergen]

That they don't sell it as a drug for ME does not mean it can not be used for it.

This confuses me, and did when it was first mentioned.

A drug company that doesn't want to sell a drug to doctors who wish to purchase it? Because it may treat a disease they don't consider infectious?

What ever happened to businesses wanting to make money by selling things they make to people who want it?

 

[Snow Leopard]

I just watched the Mark Davis talk. I never realised that finding the pathogen/autoimmunity might be as simple (I know it´s not really simple) as reading the receptors on the T-cells! This seems really promising, hopefully they will get some money from someone...

"Simple"

The process is actually really hard, modelling the structure of the TCR, in turn modelling/predicting potential antigens and then in turn discovering what they are from (which needs knowledge full genetic sequences of a long list of infectious pathogens in humans).

I'll be surprised if anything useful comes from this, but if they do manage to not only find something useful, but something central to this disease, it will be one of the biggest breakthroughs in medicine for decades.

 

[ballard]

@ballard
Robert Naviaux showed your drawing and said he loves it

It was a big thrill to have a shout-out from Dr Naviaux at the Stanford University ME/CFS conference for my cartoon. I’m doing mental cartwheels!

A huge thanks to everyone involved in the symposium. Godspeed to the researchers.

 

[bspg]

Big thanks to OMF, @AshleyHalcyoneH, Ron, @Janet Dafoe (Rose49), @JaimeS, @Ben Howell, Stanford, and all the organizers and researchers who contributed to this symposium. I feel privileged to have access to this research and know that so many brilliant minds are working to find a cure.

Did anyone catch the type of probiotic Mark Davis recommended?

I also heard bifidobacterium.

Why bifo in particular? My levels when tested were in good normal range.

He said bifido is known for its anti-inflammatory effects.

 

[lilpink]

My point is, my only remission occurred in the pregnancy with hyperemesis. If only we could replicate that (without the vomiting)

Curious..and not very pleasant

'They' do say that high HCG (human chorionic gonadatropin ) hormone is responsible for hyperemesis. Or at least that was the received wisdom back when I was pregnant but as those pregnancies were 29 and 30 years ago and I haven't kept pace with info related to pregnancy there might be a different hypothesis as to the genesis or not of that condition. Like you, I wouldn't want to revisit the 24 /7 vomiting, nor the need to be hospitalised and drip fed but I'd certainly love the remission that came with latter halves of my pregnancies. I think the value of remission was at about 80% of well... still some marked limitations but not the 20 to 30% I have manged for very many years subsequently.

 

[Jan]

Can anyone recall what Ron said about PACE? I remember thinking, ooh that was good, then forgot 10 seconds later

 

[viggster]

It's a 100 year old drug, and they are already producing and selling it so presumably the trials needed to do so have already been done - all that's need is trials for our specific condition, and that doesn't seem to stop doctors obtaining and distributing other drugs not specifically trialed for M.E....and TBH the problem mentioned was, as i understood it, that the people who want to can't do trials because Bayer won't sell to them.

Apologies if I've misunderstood the situation

Suramin is not FDA-approved in the U.S. for any indication, I believe. Naviaux had to go through the IND (investigational new drug) procedure to use it in his autism trial. That means it can't be prescribed off-label for ME/CFS like Rituximab or other FDA-approved drugs. Suramin has potential for nasty side effects, and in the 90's a company tried to get it approved for prostate cancer but the FDA turned it down. Getting it to market in the U.S. would be a very large, expensive undertaking.

Edit: It looks like suramin can be prescribed in the U.S. for African sleeping sickness, but it's in a special category and difficult for doctors to access (due to side effects, presumably).

 

[Forbin]

Great symposium! Thanks to everyone involved!.

While watching Ron Davis speak about the nano-needle technology again, I wondered if it would be possible to see if there is a change in the cellular impedance of rituximab responders. I don't know for sure, but it seems possible that some of these patients would have had pre-treatment blood samples stored that could be used for "before and after" comparisons.

Likewise, it might be interesting to run the test on patients in "remission," even more so if they have viable blood stored from when they were symptomatic for comparison.

Obviously, I'm just curious if the test can not only differentiate between healthy people and people with ME, but might also be able detect the change in course of the disease in those who have significantly improved or have become asymptomatic. This might be tremendously valuable in objectively validating the success of treatments.

 

[Gingergrrl]

At the risk of sounding like a complete idiot (which no longer phases me ), what is the mechanism that they expect Suramin to address? i.e. Rituximab kills the B cells and stops production of new autoantibodies. What exactly is Suramin supposed to do and by what mechanism? I'm hoping someone can explain in very basic terms. Thx in advance.

 

[Wonko]

At the risk of sounding like a complete idiot (which no longer phases me ), what is the mechanism that they expect Suramin to address? i.e. Rituximab kills the B cells and stops production of new autoantibodies. What exactly is Suramin supposed to do and by what mechanism? I'm hoping someone can explain in very basic terms. Thx in advance.

One of them was that when in distress cells leak ATP which causes other cells to be distressed, Suramin stops. or reduces, the amount of ATP leaked, There was also something about it resetting the cells healing mode response, which it seems to be locked into, and allowing the cell to function normally, unless I've mixed that up with another presentation.

 

[A.B.]

At the risk of sounding like a complete idiot (which no longer phases me ), what is the mechanism that they expect Suramin to address? i.e. Rituximab kills the B cells and stops production of new autoantibodies. What exactly is Suramin supposed to do and by what mechanism? I'm hoping someone can explain in very basic terms. Thx in advance.

In vitra, suramin can prevent the abnormal impedance in Ron Davis' nanoneedle biosensor ATP salt stress test. It's believed that it achieves this shutting down the cell danger response, which may be caused by some autoimmune process.

 

[leela]

when in distress cells leak ATP which causes other cells to be distressed

A bit OT here, but when I heard him talking about this I had to wonder if this is why I cannot handle nutrient products designed boost ATP production.
Solving one problem, but creating another.

 

[Wonko]

A bit OT here, but when I heard him talking about this I had to wonder if this is why I cannot handle nutrient products designed boost ATP production.
Solving one problem, but creating another.

Oddly I'm noticing a similar thing, i may get "slightly" more energy but at the expense of control, or other side effects e.g I can walk easier, but walk into things, I can think about things that involve more steps but cannot remember what I am doing right now etc.

 

[user9876]

Suramin is not FDA-approved in the U.S. for any indication, I believe. Naviaux had to go through the IND (investigational new drug) procedure to use it in his autism trial. That means it can't be prescribed off-label for ME/CFS like Rituximab or other FDA-approved drugs. Suramin has potential for nasty side effects, and in the 90's a company tried to get it approved for prostate cancer but the FDA turned it down. Getting it to market in the U.S. would be a very large, expensive undertaking.

Edit: It looks like suramin can be prescribed in the U.S. for African sleeping sickness, but it's in a special category and difficult for doctors to access (due to side effects, presumably).

I thought this was an interesting quote from an autism article
https://spectrumnews.org/news/doubt-greets-reports-suramins-promise-treating-autism/

Lead researcher Robert Naviaux says the trial wasn’t intended to test suramin for treating autism. Instead, he says, it was meant to test whether suramin’s known mechanism of action — blocking receptors involved in the stress response — is important in the condition.

“A lot of people mistakenly think that our study was about suramin; it was not,” says Naviaux, professor of genetics at University of California, San Diego. “Our study was designed as a first test of a new unifying hypothesis for the cause and treatment of autism.”

 

[aquariusgirl]

I'm curious about the block @ pyruvate dehydrogenase...,apparently this is seen in Alzheimer's & Parkinson's.

Those disorders are also associated with iron in the brain. The research is just getting going on this .....but I worry it will take years for similar research in CFS.

 

[msf]

"Simple"

The process is actually really hard, modelling the structure of the TCR, in turn modelling/predicting potential antigens and then in turn discovering what they are from (which needs knowledge full genetic sequences of a long list of infectious pathogens in humans).

I'll be surprised if anything useful comes from this, but if they do manage to not only find something useful, but something central to this disease, it will be one of the biggest breakthroughs in medicine for decades.

Please read stuff within brackets. I said it might work, which I assume is what Mark Davis thinks too.

 

[Jennifer J]

My friend ordered the DVD and I'm inspired by her plans for it.

She emailed me this morning and she's going to lend or give the DVD to her new doctor (naturopathic) who is a year out of school. (She's not sure how open he is but she thinks he wants to learn more.)

He practices in a clinic that is collaborative with other medical doctors that work in the clinic so hopefully he'll share it with the other doctors, too.

She's also going to let him know about OMF, Dr. Naviaux and his research (he's local to where this practice is), where he can get the newsletter and more!

Thank you for this Symposium (thank you Dr. Davis and all the researchers and doctors - sorry too sleepy to name everyone - thank you OMF, Linda Tannenbaum, @AshleyHalcyoneH , @Janet Dafoe (Rose49) ... and all the wonderful people involved), thank you everyone, so much, for all your work and effort to make this better and to change this!

 

[ghosalb]

Suramin is not FDA-approved in the U.S. for any indication, I believe. Naviaux had to go through the IND (investigational new drug) procedure to use it in his autism trial. That means it can't be prescribed off-label for ME/CFS like Rituximab or other FDA-approved drugs. Suramin has potential for nasty side effects, and in the 90's a company tried to get it approved for prostate cancer but the FDA turned it down. Getting it to market in the U.S. would be a very large, expensive undertaking.

Edit: It looks like suramin can be prescribed in the U.S. for African sleeping sickness, but it's in a special category and difficult for doctors to access (due to side effects, presumably).

Since name of our illness is not etched in stone yet...why don't we change name from CFS to African sleep sickness...lets face it, our daily life is not far from what sleep sickness implies....lol

 

[alex3619]

While watching Ron Davis speak about the nano-needle technology again, I wondered if it would be possible to see if there is a change in the cellular impedance of rituximab responders.

 

[Alvin2]

I've watch this talk, today, and his talk in London a few months ago. I don't recall him saying he tried rituximab on the impedance measuring device.

I really think they need to identify what is causing the block, it might be the key that they can work back from and get the disease mechanism

ust to present the other side, there are many doctors in L.A. who are closed minded and mean-spirited b/c I have seen them during my 4+ year quest to figure out what was wrong with my health. But we also have some amazing doctors, too.

Same here, i have had some good docs also but dealing with morons has left a bad taste in my mouth.

Can you make it an annual event?

I was thinking this as well

This confuses me, and did when it was first mentioned.

A drug company that doesn't want to sell a drug to doctors who wish to purchase it? Because it may treat a disease they don't consider infectious?

What ever happened to businesses wanting to make money by selling things they make to people who want it?

I don't get this either, they make some extra, get paid more then the production cost, make profit.
He was probably super simplifying it hence left out a lot of details.

I think that's it. Running sufficient clinical trials to prove efficacy would cost millions. And if a drug is not patented and cheap, they wouldn't have any guarantee of recouping their costs, assuming the drug company funds the trial. And no-one else is going to fund it.

Why do they need to fund a trial at all, they just need to sell some to Dr Naviaux. Hes obviously a doctor allowed to work with FDA approved drugs, and its obviously not an expensive product to make some extra of.
Many drugs are tested for things they were not originally designed for, for example Nilotinib is being tested in Parkinsons, its a leukemia drug, but its widely sold in the US already and the big impediment is the cost, the researchers could not afford it so it was donated by the manufacturer for the trial. I am sure Dr Naviaux is willing to pay full price but the fact its not in general use in the USA is probably the problem, why they won't let him import some or import it themselves i don't know.
To be honest i don't think using a drug with an unknown mechanism of action on a disease we know next to nothing about but is likely autoimmune is a good idea.