Discussion in 'General ME/CFS Discussion' started by Jesse2233, Mar 24, 2017.
A simple but importantant question in my view
A hard one to answer - none of us can know where advances will come from. It might have been better to make this a survey where we could choose more than one item. I hesitated over funding, PACE demise, Ron Davis and other researchers, and ended up choosing the most general item General advances....
I really wanted to vote for (but didn't)
Medicine from an advanced extraterrestrial civilization
I would suggest adding Drs Lipkin and Hornig of the CII. @Jesse2233
I still think it's quite possible that the "continuing cause" in the chain of events that leads to the production of disabling symptoms will be found in the makeup of the microbiome.
I struggle with understanding all the science my feeling is that the effect Ron Davis has had iis much wider than his work with OMF. Seems to be giving a new impetus
None of them, Dr Cheney was doing the best work IMO, but I respect anyone looking to help those suffering.
The final option made me giggle.
But seriously, I have no idea. One thing is for sure: I have much more faith in a breakthrough coming from the US than I do from the uK.
I honestly can't decide between the Davis team and the Fluge & Mella team. The latter are keeping a lower profile but are also doing impressive work.
IMO, it'll be specific advances in science and medicine - one discovery stacked on top of another until we are able to reach the cure, but then that's how science tends to work anyway. I also agree that Lipkin and Hornig at the CII should be on the list, as well as Chris Armstrong and Bio21.
I question if anything on the list in terms of research is meaningful.
There is no current research at all into a cure. The closest we've come is the Rituximab and friends trial, but that is a very blunt instrument with dangerous possible side-effects (including the odd fatality).
At the moment, to use a bad analogy, we're taking apart the dashboard of a car, because all these lights started going off after the engine failed.
Chasing it down and finding the actual fault in the engine is going to take some time.
There is clear mitochondrial dysfunction.
In order to get a 'cure' for a subset of people who seem to have 'CFS', we need to probably work out in detail the biochemistry of what is happening now. Then work out in detail the biochemistry of what went wrong in order to cause this cascading failure. Then find some candidate stage(s) in which we can intervene. Then design drugs for those. Then test the drugs.
We're in the middle of the first stage.
With my rational head on, I find it really hard to believe that we can get to 'design a drug' stage in 5 years, and then an available drug in 15.
The only hope before then is if existing drugs are found to be reasonably safe and effective.
Of course - I mentioned subset of people above.
It is quite likely IMO that in the middle of the above analysis, it turns out that CFS is really two or three or twenty diseases all with similar presentation, some or all of which may need different treatment.
The poll results are clear and most likely correct.
OMF are made up of some of the best minds medicine has to offer, if we could get them the $5 million a year they need we will all be better off for it
None of the options entirely accommodated my thoughts. Ron Davis and OMF are major players, as are the other esteemed ME researchers. But, no one individual or team is likely to solve the puzzle on their own.
I'd vote for: "Collaboration among ME-specific and other medical researchers at various facilities worldwide."
On second thought, can I add 'the zombie apocalypse'.
I have thought of this as well, if i were a zombie i would be better off then i am today. Perhaps the Umbrella Corporation can save us
That said alien technology or just capturing some time traveling Starfleet doctors would be quite helpful. I'm sure the tricorder is calibrated to read ME/CFS and they would have the necessary hypospray in their medkits
I second that and I believe that UK-based charity Invest in ME Research has made a great contribution to instigating and facilitating this since their first international ME conference in 2006 (IIMEC*) and adding the biomedical research into ME colloquium (BRMEC*) where the researchers can scratch their heads together I feel quite sure the researchers would agree with this because they keep returning to the London events year on year and there is evidence of initiatives and collaborations that have sprung from these meetings of their minds. http://investinme.eu/index.shtml
Voted "A general nonspecific feeling of hope" with a lot of ambivalence and in lack of alternatives.
The reason is I just reversed the disability of a 8 year of a chronic allegedly non-reversible disease all naturally.
Then I came across this:
Though I'm aware that many will feel resistance to many of its points, since everyone of us has been told 'its all in your mind', I also have to admit that such an all-encompassing approach was which helped in my 'purely' physical and overcome non-reversible disease.
So if even cancer and other non-reversible diseases can be overcome by stepping completely out of one's box - as it was in my experience already too - why couldn't that be possible with ME/CFS too?
toss up b/w ron davis & et's, but i voted Medicine from an advanced extraterrestrial civilization only b/c i feel it is they who truly know whats going on w/us. in all seriousness. i 've spent my free time these past few yrs exploring exo-politics & such & i've recently concluded that this disease, rather, the mechanism that has turned on & is "stuck" on in this disease, very well may b a result (a very unfortunate result) of humans having been genetically tinkered w/by ET's (since i believe all humans originate from various ET's species & this planet has been terraformed).
so called "junk" DNA is really from ET origin so, this makes perfect sense 2 me
as a side note, i find also it interesting that davis is a geneticist having worked on the human genome project...& perhaps there is some ineffable link & the ET's r subconsciously assisting davis w/the intel, as if they r working 2gether, telepathically, subconsciously, idk....but aside from all the ET stuff, which will certainly b considered ridiculous unscientific psycho babble 2 most, i truly believe ron davis & team r gonna unravel this in a very deep way.
most ppl laugh & may call this gibberish, but as i said, i've been deeply ensconced w/this notion. (& i have a strong medical/science background 2 boot) theres so much more i can say about this but i don't feel most ppl r ready....& i'm far 2 weak 2 get in2 it. over & out .
Can you vote for more than one? My answer (re: my own case) is a combination of what is found by OMF and Fluge & Mella/Rituximab. I'd really have to vote for both to give my full answer!
All good research looking into different aspects of this disease gives me hope. Not just one or two researchers. We need lots of good researchers and we need to support and encourage them all so that we can find all the puzzle pieces as quickly as possible.
I've slowly come to the view that some people on these boards might be inclined to place an excess of faith in one person. I know why they might. When you see a scientist from a prestigious institution, with a great track record, whose motivation is second to none, who seems like an absolutely terrific person and looks like an iStock photo of a brilliant and revered scientist, i's comforting to believe in him.
This is classic cognitive bias of the 'base rate fallacy' kind. It's a very big world. Take a Bayesian approach. If there are hundreds of groups working on metabolism problems world wide, the odds you can point to one and say that's the one that'll make a breakthrough are low.
[This type of anaysis can be equally applied to people who think one virus/molecule/treatment is likely to be the sole and single key.]
Most of the money is in cancer. I sort of suspect the big discovery that cures us is most likely to come from an oncology researcher nobody's heard of. And I think this is reason to hope, not reason to despair.
(FWIW I've given a chunk of money to OMF. But that doesn't mean I think they're the only ship in the armada.)
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