Third Annual Community Symposium on the Molecular Basis of ME/CFS Sponsored by OMF - DISCUSSION

perrier

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Not having been able to follow the talks, however, reading the summaries here, I am concluding that work is progressing. However, it looks like there is still so much to do, and a very long way off for any treatment--decades. No one has cracked the illness yet. I just don't understand why. We can fly to Mars, to the Moon, build extraordinary computers, and yet we cannot figure out what is going on with this illness. It is just not comprehensible to me. It is also very alarming. Of course, this group is committed, and hard working and passionate--this is not at issue. But we are talking about a grave and seriously disabling illness. What is it that is amiss? I am heartbroken. I know several severely ill young people, rotting in bed, and declining daily. Lord have mercy.
 
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thimoquinone is in black seed oil....i find when i rub black ssed into my skin i get instant relief. In fact when i took it at the beginning i thought i was on the way to recovery. As i understand it, its a powerful anti inflammatory
Did it stop working after a while?
 
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thimoquinone is in black seed oil....i find when i rub black ssed into my skin i get instant relief. In fact when i took it at the beginning i thought i was on the way to recovery. As i understand it, its a powerful anti inflammatory
Was this mentioned by Alain Moreau? I think I missed this bit.
 
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Summary of metabolic trap - looks promising since only 1 of 70 patients tested have zero IDO2 damaging mutations. The general population is at a rate of 10% having no damaging IDO2 mutations.

However we still need more time to confirm it. Hopefully they can get a definitive answer by next years Symposium. By that time they should be able to test hundreds of patients DNA, and hopefully get some actual mass spec work done.
 
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Did it stop working after a while?
It's never stopped working but the dose in black seed oil will not be the same as a straight dose of thimoquinone. I just got used to it a bit but i still get relief. When i 1st took it, POTs and virtually all symptoms vanished for hours at a time. Of course i ruined t hat by then thinking i was cured and doing to much. Google thimoquinone tho..Its very potent
 
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It's never stopped working but the dose in black seed oil will not be the same as a straight dose of thimoquinone. I just got used to it a bit but i still get relief. When i 1st took it, POTs and virtually all symptoms vanished for hours at a time. Of course i ruined t hat by then thinking i was cured and doing to much. Google thimoquinone tho..Its very potent
Just read this, seems there is growing interest in black seed oil.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4387230/
 
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@Oliver3 wow, I might buy some and give it a shot, and try not to over do anything. What kind of dose are you taking? That article is pretty detailed wow, seems to have some seriously interesting properties.

Cheers mate!
 
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@Oliver3 wow, I might buy some and give it a shot, and try not to over do anything. What kind of dose are you taking? That article is pretty detailed wow, seems to have some seriously interesting properties.

Cheers mate!
I can honestly say apart from diezepam and cbd oil, is the best thing ive tried and it has an immediate effect. I couldn't believe they were using it in trials. I'm wondering if they isolate the thymoqionone ..would love that in a large amount!
You have to be careful with dosage, its an essential oil so is strin but usally one teaspoon. I got a bit liberal with it at times. The effect on my POTS and endurance was remarkable. But i did habituate to it. I have also got slightly better too. The ohter thing that i think is helping, but be careful if you buy this too is chlorella spirulina capsules.
I've been having weeks of decent health.I'm also doing freediving breath holds and the wim hof method) these are all helping oxygen depletion. I've felt functional for the 1st time in a long time but i know i will crash if i do topo much...but my endurance/pots, digestion, migraines have all improved . from a low base.
mustnt forget collagen tablets!
 

FMMM1

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Summary of metabolic trap - looks promising since only 1 of 70 patients tested have zero IDO2 damaging mutations. The general population is at a rate of 10% having no damaging IDO2 mutations.

However we still need more time to confirm it. Hopefully they can get a definitive answer by next years Symposium. By that time they should be able to test hundreds of patients DNA, and hopefully get some actual mass spec work done.
Haven't got to listen to/watch the talks yet - hoping they will be available soon i.e. via OMF. In one of his previous talks Ron Davis highlighted that the nano-needle was 100% accurate - problem is how do you know someone has ME? Ron was testing patients experience ME doctors were convinced had ME - you can see the problem though i.e. you don't have a diagnostic test that tells you they have ME - just a doctors assessment. So 69 out of 70 may be pretty good at this stage!

Possibly all of the above is wrong --- haven't listened to/watched the talk.
 

FMMM1

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Not having been able to follow the talks, however, reading the summaries here, I am concluding that work is progressing. However, it looks like there is still so much to do, and a very long way off for any treatment--decades. No one has cracked the illness yet. I just don't understand why. We can fly to Mars, to the Moon, build extraordinary computers, and yet we cannot figure out what is going on with this illness. It is just not comprehensible to me. It is also very alarming. Of course, this group is committed, and hard working and passionate--this is not at issue. But we are talking about a grave and seriously disabling illness. What is it that is amiss? I am heartbroken. I know several severely ill young people, rotting in bed, and declining daily. Lord have mercy.

Dr Vicky Whittemore (NIH) at Invest in ME Conference (2019):
"advocacy groups --- that's what makes the difference -
- when they [elected representatives] hear that, from people with the disease -
- advocates -- telling them [elected representatives] what's needed is really what makes the difference"

I do some lobbying with ME Action.

There's a bunch of stuff which could be progressed now - diagnostic test e.g. nano-needle; evaluating drugs e.g. copaxone and SS-31.
 

perrier

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Dr Vicky Whittemore (NIH) at Invest in ME Conference (2019):
"advocacy groups --- that's what makes the difference -
- when they [elected representatives] hear that, from people with the disease -
- advocates -- telling them [elected representatives] what's needed is really what makes the difference"

I do some lobbying with ME Action.

There's a bunch of stuff which could be progressed now - diagnostic test e.g. nano-needle; evaluating drugs e.g. copaxone and SS-31.
Copaxone has been recommended for MS; the MS folks avoid it like the plague because of the side effects; and there are even some MS doctors who discourage patients because of the side effects; Dr Wahls says to keep away from it; I don't know anything about SS-31, however. Thank you for your work with MEAction; thank you
 

Moof

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Copaxone has been recommended for MS; the MS folks avoid it like the plague because of the side effects; and there are even some MS doctors who discourage patients because of the side effects; Dr Wahls says to keep away from it
Is this mainly because of the form it's administered in (injection), and the erosion of subcutaneous fat that some patients experience? If so, I wonder if there are other potential routes of administration. Prof Davis mentioned fragmenting meds into such tiny molecules that they could be taken under the tongue...but I was very tired by that time (it was late at night here), so I can't remember for sure he was talking about these drugs. I'll have to wait for the recordings.
 

FMMM1

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Copaxone has been recommended for MS; the MS folks avoid it like the plague because of the side effects; and there are even some MS doctors who discourage patients because of the side effects; Dr Wahls says to keep away from it; I don't know anything about SS-31, however. Thank you for your work with MEAction; thank you
Didn't know that i.e. side effects of using copaxone. Have to wait to see whether SS-31 is any better. Copaxone and SS-31 are chemically similar drugs - check out Ron Davis's talks e.g. Invest in ME Conference in 2019. Not to say SS-31 won't be any better than copaxone in terms of side effects.

Also Alain Moreau has found another possible drug --- only read of it above.

I guess part of this relies on a diagnostic test and some evidence that a particular drug has worked (and can be used off-label).
 

Alvin2

The good news is patients don't die the bad news..
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I was impressed with how much has been learned since last year. I know a great deal about research in the Parkinsons disease world and with far more money and so many more researchers in the field they don't approximate this level of discovery so quickly. Alzheimers same story.
Obviously we want the disease mechanism and a drug target yesterday but this is very impressive.
Maureen Hansen explained things incredibly well and i would use that as an informational tool when the history of ME research is written to to give to anyone who wants to know why we are still at a 1970s level of commitment to ME research.

It really comes down to funds here, if this can be done on a shoestring budget then money will help immensely.
I always wondered what that percentage was and now that we know i wonder if flooding them with applications would help, would they maintain that percentage or is it a funding cap? If they will keep 14% then lets put in 5x the applications, resubmit rejected ones, come up with new ones, submit multiple per researcher. Play their own game against them. Not easily done but if the researchers are willing i'd be happy to talk about this.