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An Update on ME/CFS Research with Ronald W. Davis, PhD

justy

Donate Advocate Demonstrate
Messages
5,524
Location
U.K
The thing that is bugging me is that Dr Myhill found issues with the Krebs cycle and ATP/mito/energy production many years ago and even though some are helped by supplementing as she suggests many more are not helped even a little bit. Unless this is an acquired mitochondrial disease then the effects on the krebs cycle are surely downstream of the actual cause or main dysfunction? As many of us know, sometimes we hot on something that seems to wok, or unstick a problem, only to find it turns on us and bites us on the arse!

If its a protective mechanism then to me you need to get to the root cause - trying to unstick the protective mechanism leaves you, well, unprotected.
 

JES

Senior Member
Messages
1,320
They can not be patented.

That being said, the DELIVERY SYSTEM could be. The problem right now is ATP tablets are useless, and what is going the low ATP?

Life Extension has a new ATP + Propionyl-L-carnitine supplement that is claimed to boost RBC and plasma ATP levels for at least six hours. Apparently the capsules are enteric coated, but other than that, I'm unsure what makes this product better than previous attempts.
 

Aroa

Senior Member
Messages
109
Location
Spain
Let´s scientists do their work. There are many brilliant people working in this, who already succeded in very important discoveries. I also like their approach of fast tracking

I guess they will probably know more than they say and are not sharing it until they are 100% sure

I trust Ron Davis and OMF and I know they will find the anwers we need for this desease :)
 
Messages
15,786
The thing that is bugging me is that Dr Myhill found issues with the Krebs cycle and ATP/mito/energy production many years ago and even though some are helped by supplementing as she suggests many more are not helped even a little bit. Unless this is an acquired mitochondrial disease then the effects on the krebs cycle are surely downstream of the actual cause or main dysfunction?
Even for known mitochondrial diseases where it's fairly well known what's going wrong and what the effects are, the use of the indicated supplements and drugs to help compensate for it is very hit-and-miss. It's just not at all easy to get more energy into cells which are having trouble producing it.
 
Messages
2,391
Location
UK
From Ron:
We haven't looked at other diseases yet. We have focused on: Is the assay reproducible? and, What is in the serum?
I guess the follow-on from this is:-
  • Does this prove unequivocally the ongoing symptoms of ME/CFS are physiological? I suspect it probably does.
  • In time given further work, will it unequivocally prove the physical effects cannot be triggered from psychological triggers. I imagine to prove that you would have to test patients suffering from depression-induced fatigue for example, and suffering from nothing else, and hope the impedance signature is very different to that of ME/CFS.
 

TreePerson

Senior Member
Messages
292
Location
U.K.
E
Even for known mitochondrial diseases where it's fairly well known what's going wrong and what the effects are, the use of the indicated supplements and drugs to help compensate for it is very hit-and-miss. It's just not at all easy to get more energy into cells which are having trouble producing it.

Except he does seem to be very confident that the problem is not the cells. That the difficulty arises in the serum. Just to have this proved or confirmed is a big step forward.
 

Mary

Moderator Resource
Messages
17,335
Location
Southern California
FWIW, and I don't know if this is related in any way to this research, 10 or 11 years ago I took calcium pyruvate and got a great energy boost - with no PEM - for 3 or 4 days ..... I've tried it several times since then without the same results.

So I'm pretty sure just taking ATP is not going to fix what's wrong, although it may be a patch. I take several things that do help with energy, it makes me think of plugging holes in a dike - none of these things solve the central problem, but they can sometimes help with symptoms.
 

Jo Best

Senior Member
Messages
1,032
Folks in UK may wish to take the opportunity to inform anyone (GP, MP, media etc.) you think needs to be better informed or updated, that Ron Davis will be returning to London this year for the Invest in ME Conference events, because even if they can't attend it helps to raise awareness that the world's leading biomedical researchers meet in UK and also get their heads together at the two-day biomedical researchers colloquium to join up the dots in this complex disease. There is a conference leaflet you can download on this page - http://investinme.eu/IIMEC12.shtml#home

Meanwhile, the full presentation given by Ron Davis at the 2016 London conference is on the IIMEC11 DVD (medics can gain professional development credits by watching) - http://investinme.eu/IIMEC11.shtml#dvd
and this pic includes my favourite quote from his excellent presentation. It sums up this disease for me -
Ron Davis Cancer MECFS.jpg
 

Snowdrop

Rebel without a biscuit
Messages
2,933
I used to work in Financial Services in London, I'm making sure my friends are aware. You never know when employees are going to be asked for suggestions of charities/ community funding opportunities for big biz to tick their 'community caring' box as part of their corporate responsibilities.... So far it's gone to people in hedge fund, global insurance, global law and investment advisers. I have no shame so I specifically asked them to consider donating. :) I included the video and the transcript. I have no idea if any of them will, and if they do I'm pretty sure they won't tell me, (rightly so, giving should be private not boasted of), but I'm hopeful that some might.

That would be great news if you could get some interest in corporate donations. But a word of caution. Because you are in the UK and are talking about corporate London you might want to be sure they don't get the idea of donating to local ME charities of dubious value. Not to say there are not charities in UK worth supporting (there are) They might hear about the great work being done elsewhere and think that it's all good and the same and want to contribute locally in a way that could be disaster. Or perhaps I'm misunderstanding (and being concerned unnecessarily) in the specificity with which you targeted them. Certainly possible.

Anyway, appreciation for you taking the time to try and wrangle money for ME research.
 
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Solstice

Senior Member
Messages
641
I used to work in Financial Services in London, I'm making sure my friends are aware. You never know when employees are going to be asked for suggestions of charities/ community funding opportunities for big biz to tick their 'community caring' box as part of their corporate responsibilities.... So far it's gone to people in hedge fund, global insurance, global law and investment advisers. I have no shame so I specifically asked them to consider donating. :) I included the video and the transcript. I have no idea if any of them will, and if they do I'm pretty sure they won't tell me, (rightly so, giving should be private not boasted of), but I'm hopeful that some might.

Oh, i'd encourage everyone that's donating to the OMF to boast about it as much as they can. Might just pull some more people over the line and it would do wonders for "brand recognition".
 
Messages
43
Funny how we are each slightly different in the symptoms we get. For me, my brain would complain long before my fingers and arms. And it would be worse if I tried to do cognitive work vertically as opposed to horizontal.

I have same sympthoms in both.
 

Ben H

OMF Volunteer Correspondent
Messages
1,131
Location
U.K.
Very exciting! I'm going to donate right now.

Any news on bitcoin donations, Ben?



I wondered that too. I suspect a few people are going to rush out and buy pyruvate and ATP.

This is so exciting. I'm in tears. Off to make a donation.

Wow, exciting research! Being able to narrow down where the problem resides and easily test the effectiveness of drugs in resolving the problem is huge!! And yes, I will be donating:thumbsup:

This fills me with hope.i feel so much gratitude to this dear man,so thankful he is in our corner. Will donate this evening. Hope many will dig deep.

I was crying while watching the video. Ron Davis is our angel on earth !!!!!

Thank you to all the people who make this posible. I am about to donate right now

From here in the UK this sounds so encouraging, I will definitely donate again as my way of showing my gratitude for all that Ron and his team are doing.

Pam

I am donating what I can.

Does advocay have the potential to get the NIH to fund this project specifically and generously?

I am so incredibly thankful for all of Ron and his team's research and work. This brings me to tears on how far they have come and may actually find a cure soon. I feel there is a bit of hope for my bedridden 25 year old son suffering with me/cfs and all of the other sufferers and their families. I will be donating.

Thank you for being our angels in this crazy journey of illness and give us the light of hope!

Thank you again to Ron and all the team... will donate again!

Thank you so much to Ron and everyone who is working so hard on this for us. So validating, inspiring and hopeful! :angel:

Just made another donation.

T

The marrying a billionaire is an excellent idea. LOL. I am now actively on the lookout! Meanwhile I have made a small donation.:) Xx

Donation made!

Donated US$500

THANKYOU SO MUCH FOR THE DONATIONS GUYS! :thumbsup::angel::thumbsup:

When I did my RAF apprenticeship a long time ago, they never stopped hammering into us "Don't assume - check!".

That by the way is not a comment in any way on what Ron Davis and his team are doing, because I am 100% certain the same mantra is etched into his DNA.

I can confirm, without a shadow of a doubt, that is indeed how Prof Davis is. Even before my time over here this has been demonstrated, and during my time here has been demonstrated again and again and observed directly by myself! I assumed something about pyruvate, and Prof Davis flipped my theory on its arse, in a way I had not even comprehended. I'd like to say it was my cognition and brainfog, but it's not. It's just the way Prof Davis thinks. No assumptions. I have never met anyone like him.


B
 
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Wolfiness

Activity Level 0
Messages
482
Location
UK
So the appeal now is for funding so they can hire more staff : how many minutes of a lab tech's time testing treatments would, say, $5 buy? Maybe we could frame it like that to help catch people's imagination. Or "For every $x dollars we can test a different drug treatment".
 
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