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

[Kati]

Ron has figured out that whatever is in the serum that's triggering this is a big molecule, so it could be a protein, A protein complex, or an antibody (which includes auto antibodies)

Thank you so much for relaying the answers @Rose49 every morcel is helpful. Maintaining hope is where it's at right now.

I wonder if Ron has an idea as of what medical specialty would be best suitable for us, and how his enthusiasm can be transferred to them doctors? We are still in the dark ages where patients are robbed of disabilities and where doctors do not know any better than prescribing group therapy and exercise therapy. It's unbelievable out there. (Of course I am looking forward, perhaps still cannot see clearly that Pluto has a heart on it yet, but it's rather good to be hopeful and try to figure out (or shape) the landscape ahead- it's hard to be patient)

 

[Cohen2]

After spending a horrible night in the hospital with my ME deteriorating this is amazing news to come home to. Words cant express how thankful I am to Ron and the team. Have donated again.

 

[alex3619]

Ron has figured out that whatever is in the serum that's triggering this is a big molecule, so it could be a protein, A protein complex, or an antibody (which includes auto antibodies)

Presumably this was due to some kind of filtration. The micron etc. (size) might tell us a lot about what the range of the potential proteins are if different filters are used. I wonder if that reduces the range we need to look at enough to make a difference.

PS If the filtration involves weight or charge then other units would be important, such as kilodaltons.

 

[Valentijn]

Does this prove unequivocally the ongoing symptoms of ME/CFS are physiological? I suspect it probably does.

It adds to the proof, but ME/CFS has already been demonstrably biological for decades. Certain groups have only been able it ignore it by bending reality.

Does it persuade the hard-line quacks and the bureaucrats? No, but each study makes it harder for them to continue to ignore the nature of ME/CFS.

 

[Molly98]

After spending a horrible night in the hospital with my ME deteriorating this is amazing news to come home to. Words cant express how thankful I am to Ron and the team. Have donated again.

Sorry to hear that @Cohen2
Rest well and hang on to the hope in this thread.
Sending you a virtual cup of tea and cake for comfort

 

[Lolo]

I think it's interesting that they will screen Valtrex, Rituximab, and others. Hopefully they include, Methylcobalamin (B12), Magnesium, Zinc and all the other commonly used adjuncts.

Yes I hope they test the least toxic and non patented treatments that we can afford.

 

[Kati]

Yes I hope they test the least toxic and non patented treatments that we can afford.

Quite honestly, people have tried a gammut of non toxic and non patented treatments. What is needed is effective treatments that are tested in clinical trials and approved by drug regulating bodies for efficacy and safety. The last thing we need (and this is my opinion) is yet another vitamin protocol. Time for science and medicine to reign.

 

[Janet Dafoe]

Thank you so much for relaying the answers @Rose49 every morcel is helpful. Maintaining hope is where it's at right now.

I wonder if Ron has an idea as of what medical specialty would be best suitable for us, and how his enthusiasm can be transferred to them doctors? We are still in the dark ages where patients are robbed of disabilities and where doctors do not know any better than prescribing group therapy and exercise therapy. It's unbelievable out there. (Of course I am looking forward, perhaps still cannot see clearly that Pluto has a heart on it yet, but it's rather good to be hopeful and try to figure out (or shape) the landscape ahead- it's hard to be patient)

Dr Naviaux has talked about Biochemical Geneticists. I wonder how many of those there are. They really understand metabolism. I'll ask Ron. He's asleep now. I'm napping and waiting to help Whitney at 1:30 am. Lots of great Qs in the email. We are sorting and working on how to answer as many as possible. People should remember he's not an MD. He can't answer about individual Med q's. He will focus on science and research q's.

Hang in there. It's so hard to do because it's so hard to deal with this disease. It's hard for me to wait too!

 

[Janet Dafoe]

Presumably this was due to some kind of filtration. The micron etc. (size) might tell us a lot about what the range of the potential proteins are if different filters are used. I wonder if that reduces the range we need to look at enough to make a difference.

PS If the filtration involves weight or charge then other units would be important, such as kilodaltons.

Yes. His first filter experiment I teased him about, calling it, "The Breadbox Experiment", as in, "Is it bigger than a breadbox?" Lol. He's doing other things now too.

 

[trishrhymes]

Hi @Rose49 , thinking of you on your lonely night vigil. Thank you for everything you and Ron do. You are very special people.

 

[A.B.]

Is it possible to keep filtering the serum, checking for its impact on blood cells after every filtration, while reducing/increasing the pore size until only very few candidates are left? It might take a lot of blood but if this method works then it should be able to very quickly narrow down the proteins in the serum to a few candidates.

This method is akin to binary search in computer science and with this method one can find the right element from a list of a million elements in about 20 steps in the worst case.

 

[Kati]

Dr Naviaux has talked about Biochemical Geneticists. I wonder how many of those there are. They really understand metabolism. I'll ask Ron. He's asleep now. I'm napping and waiting to help Whitney at 1:30 am. Lots of great Qs in the email. We are sorting and working on how to answer as many as possible. People should remember he's not an MD. He can't answer about individual Med q's. He will focus on science and research q's.

Hang in there. It's so hard to do because it's so hard to deal with this disease. It's hard for me to wait too!

Thank you for your answer. I think personalized (precision medicine) has great potential, and yes, geneticists (thouh unless you have a kid with serious chromosome issues or a pregnant person with gene issues, geneticists are not frequent nor funded by socialied health care system. NOt sure about the US Insurance for something this specialized.

My case for precision medicine is that it is definitely on the rise. The only caveats is that we are facing the ever perpetuating stigma from the disease. Seemingly precision medicine does not have ME on their radar, with the exception of Dr K. They want to focus on cancer and HIV and drug efficacy in both these fields.

I guess we'll have to keep on inviting more researchers and more physicians to get curious about ME.

I am trying to think of a fundraising campaign to fund OMF- I wonder if a bottle drive (you know, can and bottle which gives you money when you return them)in each our community, worldwide, could be yielding good results? How about a monthly bottle drive?

 

[Countrygirl]

@Rose49 I am avidly following this marvellous thread and thank you for all you and Dr Davis are doing to help our community. You are giving us that very rare commodity: hope! I just wish you could both get some more rest, but I know circumstances don't permit.

I have a question for Dr Davis.

In my neck of the woods in SW England, many of us became ill with ME after exposure to organophosphates used in sheep dipping while others of us developed it (some died) after exposure to organochlorines, especially a cocktail of pentochlorophenol, lindane, dieldrin and solvents which was used as a wood preservative in our timber-framed homes.

Does Ron think that the above fit into the science of our disease that he is unravelling, please?

Thank you!

So looking forward to seeing Whitney well!

Best wishes...........and love from across the pond, xxx

C.G.

 

[Janet Dafoe]

Thank you for your answer. I think personalized (precision medicine) has great potential, and yes, geneticists (thouh unless you have a kid with serious chromosome issues or a pregnant person with gene issues, geneticists are not frequent nor funded by socialied health care system. NOt sure about the US Insurance for something this specialized.

My case for precision medicine is that it is definitely on the rise. The only caveats is that we are facing the ever perpetuating stigma from the disease. Seemingly precision medicine does not have ME on their radar, with the exception of Dr K. They want to focus on cancer and HIV and drug efficacy in both these fields.

I guess we'll have to keep on inviting more researchers and more physicians to get curious about ME.

I am trying to think of a fundraising campaign to fund OMF- I wonder if a bottle drive (you know, can and bottle which gives you money when you return them)in each our community, worldwide, could be yielding good results? How about a monthly bottle drive?

He's talking about BIOCHEMICAL GENETICS, not regular genetics.

 

[Janet Dafoe]

It adds to the proof, but ME/CFS has already been demonstrably biological for decades. Certain groups have only been able it ignore it by bending reality.

One wonders how many times it has to be "proven for the first time" as in the recent Australian press release!

 

[Tuha]

He's talking about BIOCHEMICAL GENETICS, not regular genetics.

Do I understand good that Ron is proposing that the specialists in "biochemical genetics" should be the best to occupate with ME/CFS patients? Or is it still too early to say it and we still dont know enough about ME/CFS to say which specialist is the best? i am really intersted in this because in my country there is no doctor who occupates with ME/CFS. We are trying to get more attention from the medical community but always if you ask a doctor (imunologist, neurologist, gastro,...) if he follows ME/CFS problematic and that you would like to cooperate with him - he says that ME/CFS doesnt belong to his field

 

[alex3619]

Is it possible to keep filtering the serum, checking for its impact on blood cells after every filtration, while reducing/increasing the pore size until only very few candidates are left?

Hence my different filters comment. We can find out what sized loaf of bread it is within a narrow range, and there will be only so many bakeries that make it.

 

[alex3619]

One wonders how many times it has to be "proven for the first time" as in the recent Australian press release!

Its been proven probably dozens of times, maybe hundreds. The world does not wake up until its given a huge jolt of adrenaline.

 

[alex3619]

He's talking about BIOCHEMICAL GENETICS, not regular genetics.

Where my background is, though only undergrad, and my brain has lost almost all of it. I could see this being important in 1999 which is why I did my biochem degree. I wanted to get into bioinformatics but never could, my math brain never recovered. To this day I have extremely limited math skills.

 

[Janet Dafoe]

Do I understand good that Ron is proposing that the specialists in "biochemical genetics" should be the best to occupate with ME/CFS patients? Or is it still too early to say it and we still dont know enough about ME/CFS to say which specialist is the best? i am really intersted in this because in my country there is no doctor who occupates with ME/CFS. We are trying to get more attention from the medical community but always if you ask a doctor (imunologist, neurologist, gastro,...) if he follows ME/CFS problematic and that you would like to cooperate with him - he says that ME/CFS doesnt belong to his field

No. I said that Naviaux talked about biochemical geneticists to me. I don't know who he or Ron thinks is best.