Community Symposium on molecular basis of MECFS! DISCUSSION THREAD!

[PinkPanda]

@Ben Howell @Janet Dafoe (Rose49) @AshleyHalcyoneH

Thankyou so much to everyone who organized this event. It was very interesting!

I was a bit sad that Dr Ron Davis didn't talk more about this map, showing the low/high enzyme activities in the metabolism, the one with the red and blue circles.
It would be really great to get more information on that, especially concerning the energy metabolism and citric acid cycle. There are a few people here (including me ) who are looking at the energy metabolism and trying to find supplements that might improve some processes, the pyruvate dehydrogenase activity, the fatty acid oxidation,...

If we had more information on that, maybe that'd enable us to narrow down some supplements better. I think I saw a big blue circle at the bottom of the citric acid cycle. That might be reduced ketoglutarate dehydrogenase or succinate dehydrogenase function? Accordingly, we could then focus more on supplements for those enzymes or the oxidative phosphorylation.

 

[dangermouse]

This is a brilliant thread

 

[msf]

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...

 

[msf]

I´ve got to say, it was refreshing to hear an immunologist talking about molecular mimicry (just kidding, Prof. Edwards!).

 

[msf]

Seriously though, it is encouraging that people are coming at this from many different angles, for too long people came at ME in the same idiotic BPS way.

 

[BurnA]

Ron Davis said about the nanoneedle results " This is simple biochemistry, we can figure this out."

This implies they can identify the molecule causing the abnormal impedence response in ME patients cells.

So, does anyone kniw how simple is it and when might they expect to figure it out ?

If they do, what next?

 

[Manganus]

At the end Ron asked for any additional ideas to move forward. I believe we need to get clinicians and physicians on board with these discussions because they see it on the front line dealing directly with the patients and may have pivotal input.

This time, the chosen topic was the molecular basis.
(...which clinical physicians have no experience of.)

If a symposium like this (closed initially, with a final part open to the public) could be repeated, maybe another topic will, by then, be the most relevant.

 

[Isaiah 58:11]

Very interesting. After 20 weeks of severe hyperemesis for both of my pregnancies I (almost overnight) went into the two best remissions of my disease for the latter 20 weeks of each. The benefit was not lost immediately on parturition.. tbh the trajectory of the improvement and subsequent decline wasn't unlike that being observed in the Rituxan studies (imo). I have used HRT empirically to try to mimic this response, but of course that uses oestradiol not oestriol. So I would be very curious about anyone who followed through on this. I noticed from the Invest in ME DVD of the last Conference that Warren Tate mentioned the pregnancy issue apropos his own daughter... few have made these observations but I feel they are important and could lead to real understandings of the disease process.

There are caveats however. Women with an intact uterus will need progestogen to balance the oestriol .... I can't imagine oestriol given ad infinitum is protective?? ..though I appreciate gestation is 9 months, so perhaps a 28 day cyclical progestogen is unnecessary? Would the same benefits be accrued in post menopausal women? I noticed that my 'cycling' presentation of ME changed to a consistently downward path after my pregnancies... the MO had changed, and not for the better, and this has continued for the last 30 years.

That is fascinating! I had my first pregnancy right after onset and, I believe, declined through it but was much worse afterwards. My second pregnancy, however, I had hyperemesis as you did and experienced near a total remission that lasted something like two years afterwards. After my health declined to the same state I had the bright idea to have another baby so I could feel well again. It didn't work. I so declined during my third pregnancy that by the time my daughter was born I could neither sit up nor hold her. My point is, my only remission occurred in the pregnancy with hyperemesis. If only we could replicate that (without the vomiting). I would love to try it again, but at this point, I don't dare.

I do know that I needed progesterone for a luteal phase defect before my last and I don't think I ever made near the same amount of hormones because I never really went into labor after my membranes ruptured (no oxytocin) and ultimately couldn't nurse due to having low prolactin levels (they used to be high, go figure). Anyway, now I don't seem to make any hormones at all (except DHEAS!) so we tried BHRT last year and it made no difference with either the obvious hormonal problems or ME.

 

[A.B.]

If we had more information on that, maybe that'd enable us to narrow down some supplements better. I think I saw a big blue circle at the bottom of the citric acid cycle. That might be reduced ketoglutarate dehydrogenase or succinate dehydrogenase function? Accordingly, we could then focus more on supplements for those enzymes or the oxidative phosphorylation.

See this is why he isn't showing us the map. There isn't a clear picture yet.

 

[Marco]

I don't think it was done on many patients so there could be small sample size issues but it did seem very interesting.

I also wonder about the cohort. Haven't checked but I'm not a fan of cohorts drawn from 'specialist' clinics - too much scope for bias.

 

[user9876]

I also wonder about the cohort. Haven't checked but I'm not a fan of cohorts drawn from 'specialist' clinics - too much scope for bias.

But interesting enough to make it worth trying to replicate.

I thought a lot of what was being talked about was interesting but required much bigger studies to confirm.

Also I've always liked the idea of longitudinal blood studies to look at how things change with severity and exertion. They seemed very keen on this idea which I think is good.

 

[Marco]

But interesting enough to make it worth trying to replicate.

Absolutely even as a non-specific first stage.

 

[AndyPR]

The information that stood out to me as important was that there is a company trying to manufacture suramin for our purposes + autism treatment but it will take maybe a year or so ?

I don't think this is quite right. Naviaux talks about this at his point in the talk - click here
He's not absolutely clear in how he phrases it but he talks about "a new commercial sponsor who is interested in this [suramin production]" and then goes on to say "but it would take them 1.5 years for any new production to come on line". The way I interpret that is IF they go ahead with it, it will be at least 1.5 years away, but I can see how that might be open to interpretation.

He does say though that Bayer have built a new manufacturing plant in order to supply Suramin due to the fact that inhibits viruses like Ebola and Zika from entering into cells, but they aren't interested in supplying for ME as they don't view it as an infectious disease, which is what they focus on.

 

[Wonko]

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?

 

[Manganus]

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 believe you ought to see it in terms of the producer's costs for trials necessary to be allowed to sell and distribute the preparate.

 

[Kenny Banya]

Now on YouTube

https://m.youtube.com/watch?feature=share&v=s7bBMXQSmuM

 

[Wonko]

I believe you ought to see it in terms of the producer's costs for trials necessary to be allowed to sell and distribute the preparate.

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

 

[trishrhymes]

I believe you ought to see it in terms of the producer's costs for trials necessary to be allowed to sell and distribute the preparate.

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.

 

[Hopeful1976]

Was there any mention at all of a time frame for treatments? It was great to hear all the scientists striving to help us all, I'm forever grateful, but... I want to be well again, tomorrow...

 

[Mary]

I had to miss most of this because of a family event, which I am paying for today (my social life is almost non-existent, but the one time I have something I really want to do, there's a conflict! )

In any event, I just ordered the DVD here: https://www.omf.ngo/community-symposium/

I appreciate all the youtube links provided above too ---