Bhupesh Prusty: "we are on a perfect path for identifying potential transferable factors in ME/CFS blood that can cause mito dysfunction..." GoFundMe
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bthompsonjr1993
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I think it’s interesting that exosomes is one of the 3 things he narrowed it down to. Because a while back at a NIH conference, Ron Davis said that his work indicates that the factor in the blood responsible for the CFS specific effects in the nanoneedle are exosomes
I like how there are overlaps in prustys and Stanford’s work . Might show that prusty is on the right path. Also the nanoneedle signal getting normalized by SS-31, a drug that inhibits mitochondria framentation. Which is exactly what prusty says is wrong with our cells.
Not sure why this isn’t getting more attention..I find this pretty significant.
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C1q for dummies, that is what I need.
Can anyone expand on this process in layman's terms?
If I understand, C1q is a protein that complements or controls the mechanism for controlling and getting rid of pathogens.
C1q can get low due to:
1. The byproducts of exercise;
2. Auto-antibodies, i.e. auto-immunity;
3. A virus such as EBV.
Low C1q then sets the stage for mitochondrial fission. This causes the incredible fatigue as our cells simply cannot produce energy as they normally would.
Thank you in advance.
Can anyone expand on this process in layman's terms?
If I understand, C1q is a protein that complements or controls the mechanism for controlling and getting rid of pathogens.
C1q can get low due to:
1. The byproducts of exercise;
2. Auto-antibodies, i.e. auto-immunity;
3. A virus such as EBV.
Low C1q then sets the stage for mitochondrial fission. This causes the incredible fatigue as our cells simply cannot produce energy as they normally would.
Thank you in advance.
Rufous McKinney
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would the HHV6 Foundation fund Dr Prousty's work in a comparable manner to OMF if we could generate more consistent revenue? Or ANY consistent revenue?
mitoMAN
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Wouldn't a fragmentation inhibitor like Mdivi-1 be even more useful?
Rufous McKinney
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From the recent publication...here is the description of funding for the last year...
- This work was supported in part by grants from The Solve ME/CFS Initiative (Ramsay Research Award) and HHV-6 Foundation (to B.K.P.) and gifts from the University of California San Diego Christini Fund, the Lennox Foundation, the JMS Fund, the Khosla Foundation, the Westreich Foundation, and the Malone Foundation (to R.K.N.), and grassroots support from over 2000 individuals who have each provided gifts in the past year to support Naviaux laboratory and Prusty laboratory research.
So I am still wondering- could patients lobby the HHV-6 foundation to do more- fundraising for BKP and RKN?
Since HHV-6 is their focus, and they have helped already- maybe they need a grant to hire a fundraiser. Maybe there is something more we could do to contribute to getting more to happen...there. Instead of focusing on OMF.
ChookityPop
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This was interesting. Following
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There's a grant currently available for ME/CFS researchers worldwide. I asked Prusty if he applied and he said yes but that they hadn't contacted him back... We'll see in a month or so when the deadline closes if they decide to fund Prusty's work or not. They're definitely aware of Prusty's work since they watched the last Fatigatio conference.
I don't think Prusty is the only "hope." Personally, for me there's at least 3 extremely significant developments. Prusty, DecodeME, and Long Covid. One reason why I'm looking forward to seeing Prusty's work is one of his tweets where he said that he's able to diagnose ME/CFS 75% of the time. I don't think he's the type of person that would lie about it.
Then there's DecodeME. I think it's the largest study ever on ME/CFS and it's being lead by an extremely talented geneticist, Chris Ponting. With 20,000 patients it's going to yield strong results which will either elucidate the mechanisms of ME/CFS or show that it doesn't have a genetic component. There's some evidence to show that it does though.
And now Long Covid, which is what ~10% of people develop after Covid-19 that looks extremely similar to ME/CFS. The worse the pandemic gets, the harder it will be for governments to ignore Long Covid. There are constant reports about this, doctors are talking about it, and even studies that are looking into how many people with Covid-19 develop ME/CFS are already underway like the one by OMF.
Rufous McKinney
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There is alot of positive stuff happening at the moment...we all just need to- hang on.
which is easy to type.
meanwhile its odd to be this sick, for this long (57 years at least) (ok 67 the whole time)...and realize that nobody has ever gathered an iota of data or information about my body and its symptoms..
so I hope somebody out there- in the samples- represents me. (and all the rest of us...)
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I'm not sure what he means by ME and CFS. I thought that they are the same...
@sebaaa its the same, one is used in the US and one in the EU to describe the disease. But some ppl will fight you to the death that its not. And will use fringe symptom differences to differentiate them. Its absurd.
Others claim Cfs/ME isnt a diagnosis at all. Because they dont understand the concept of an exclusion diagnosis.
So as you can see, it can get messy sometimes
Others claim Cfs/ME isnt a diagnosis at all. Because they dont understand the concept of an exclusion diagnosis.
So as you can see, it can get messy sometimes
@sebaaa its the same, one is used in the US and one in the EU to describe the disease. But some ppl will fight you to the death that its not. And will use fringe symptom differences to differentiate them. Its absurd.
Others claim Cfs/ME isnt a diagnosis at all. Because they dont understand the concept of an exclusion diagnosis.
So as you can see, it can get messy sometimes
Lol, I saw that "CFS/ME is not a diagnosis" reply on his tweet
bthompsonjr1993
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He apparently thinks that they’re all different things. Because one person pointed out how he listed them separately, and he replied that he was glad they noticed that because it was intentional
Treeman
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I often think that a diagnosis of ME/CFS or any variation is a waste of time anyway for me, there's no treatments for it in the UK. One day I'm sure the'll find several potentially different illnesses. But at this time I can't see any better way to focus help with the diagnosis.
BrightCandle
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I think its worse than that, you only have something to lose in the UK from diagnosis and referral to a CFS clinic. You run the risk of potentially being held against your will for psychological reasons if you don't go along with the "treatment" which itself is torturing patients into a severe condition. Our loved ones struggle to appreciate just how dangerous a physio and a psychologist can be and if when in a severe state they crack and call an ambulance they could be putting us into a circumstance where we are murdered by the people who are meant to help us.
The UK is an exceptionally dangerous place to be an ME sufferer. Even when you have fully educated yourself about the nature of your condition you need to ensure all those around you are fully aware of how to handle things if you crash and are in a very poor state, which is mostly about keeping you the hell away from quacks that call themselves doctors. I worry that even as the diagnostic and treatments are developed over the coming years that the UK will continue to reject the clear international consensus as to the nautre of the condition, it's not like they aren't aware that the PACE trials have been picked apart internationally and that everywhere else has removed GET and CBT as forms of treament. Even now the UK sticks doggedly to this and I have seen no less than 7 different treatment plans for Covid long haul patients including the same dangerous treatments. My doctor, unfortunately, is an idiot and sent me to one of these clinics so I am hoping to get my own private CFS doctor in before they fuck things up and that appointment I am going to need my full wits about me to avoid harm. It shouldn't be this way but the UK is a dangerous place to have ME, very dangerous.
stefanosstef
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Maybe he meant to write me/cfs AND me/cfs WITH long covid?
But yeah, many researchers consider ME to be CFS with neuroinflammation.True cfs is the same as me as far as I understand.
Most probably cfs is a subset of the illness, different onset trigger and different pathophysiology.And it might wrongly include misdiagnosis of cfs-like illnesses like cirs, chronic lyme or dsps.
But yeah, many researchers consider ME to be CFS with neuroinflammation.True cfs is the same as me as far as I understand.
Most probably cfs is a subset of the illness, different onset trigger and different pathophysiology.And it might wrongly include misdiagnosis of cfs-like illnesses like cirs, chronic lyme or dsps.
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Rufous McKinney
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It will be fascinating to learn What dr. Prusty means by these various terms- hopefully it will become clearer.
When I consider the overall trajectory of my lifetime of this....it became much more neurological and inflammatory in more recent years, and with "the worsening" I experienced. In my mild condition, most of the neurological issues I never noticed them. I would mostly have episodes of- low grade fever, swollen glands, and the aches and flu-like.
But not: losing my visual acuity, the tinnitis, smell hallucinations, etc....fun stuff.
bthompsonjr1993
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That was Dr. Montoya asking the first question at the end of Prusty’s presentation. I wonder what Montoya is up to now in terms of research and his next steps