Ron Davis on Possibly Explaining (Almost) Everything in ME/CFS: The #MissingMillions Talk

[Janet Dafoe]

Hi Janet!

If the video's are on Youtube you can download them into the comments section by clicking on the media button (under the font family button in menu bar). if they're not you could try including them as an attachment.

I hope we can get that video of you guys singing. What is an honor song?

It's a song to honor someone or something. When they are sung, the people usually stand up and sing with it as much as they can. That happened at the rally. It was moving. The one we sang is Cherokee.

 

[Janet Dafoe]

Ron Davis thanking his son Whitney

at the #MillionsMilling protest in SF on 5/25/16.

 

[JWest]

I wonder if Ron Davis has read Doctor Sarah Myhill's book "Diagnosis and Treatment of Chronic Fatigue Syndrome". Her main focus is on the testing and treatment of mitochondrial disfunction in ME/CFS. Sometimes I feel frustrated that the academic mainstream researchers never seem to get out and talk to lesser known doctors who are helping people with ME/CFS feel better right now or for that matter listen to patients who have improved or recovered using treatments that unconventional but effective for some like mold avoidance. Patients may not be cured by these approaches but their lives have been greatly improved by using things like diet changes, toxin avoidance and supplements to treat imbalances and infections. I think it is going to take both approaches to finally beat this disease but I feel that the official CFIDS groups like Solve ME/CFS still pretty much say the only treatment is staying within your energy envelope and maybe some prescription drugs to treat sleep problems or orthostatic intolerance. Why don't they research low cost, low side effect treatments that everyone has access to?

 

[Laurie P]

They need to look at retroviruses

I agree; but I can't "Like" your comments if you are going to completely change them. That's not what "Edit" means. You should have added a new comment.

 

[EYAKLLE]

I agree; but I can't "Like" your comments if you are going to completely change them. That's not what "Edit" means. You should have added a new comment.

Hi Laurie, I know I was thinking about this. Didnt quite know how to unlike you kindly. but I see your point for sure. thanks !

 

[Janet Dafoe]

I wonder if Ron Davis has read Doctor Sarah Myhill's book "Diagnosis and Treatment of Chronic Fatigue Syndrome". Her main focus is on the testing and treatment of mitochondrial disfunction in ME/CFS.

Sometimes I feel frustrated that the academic mainstream researchers never seem to get out and talk to lesser known doctors who are helping people with ME/CFS feel better right now or for that matter listen to patients who have improved or recovered using treatments that unconventional but effective for some like mold avoidance.

Patients may not be cured by these approaches but their lives have been greatly improved by using things like diet changes, toxin avoidance and supplements to treat imbalances and infections. I think it is going to take both approaches to finally beat this disease but I feel that the official CFIDS groups like Solve ME/CFS still pretty much say the only treatment is staying within your energy envelope and maybe some prescription drugs to treat sleep problems or orthostatic intolerance.

Why don't they research low cost, low side effect treatments that everyone has access to?

Ron has read everything he can get his hands on about ME/CFS, including lots of different treatments that help some patients, mainstream AND "alternative". One of Whitney's doctors is "alternative" and Whitney also tried all kinds of things that you are talking about here, and more.

Ron's focus is getting to the "bottom of it", that is, finding the underlying molecular underpinnings of this disease, so that we can have KNOWN treatments that work for everyone, so that we can KNOW what will work on different people, given their unique manifestation of this disease.

We have received literally thousands of messages from people telling us that they know how to cure Whitney, all helpful nice messages. There is NO WAY anyone could try all of these, although we have tried MANY.

Research needs to discover what the cause is, how it's different for different people, and a way to treat patients based upon their own manifestation of the disease. The time needs to END where patients are spending thousands of dollars trying things from all over the place with no way to know what will help, and when some of the things actually make them worse.

We have literally a whole room full of boxes and boxes of different things that Whitney has tried but didn't help, or helped a little.

We are now on the road to actually making him BETTER, as in CURED. And this will be available to everyone. And the reason not many people research all the things you think need researching is THERE IS NO MONEY FOR RESEARCH!

People would love to research all kinds of these things! Ron's focus is on the molecular underpinnings and what actually is going on in the body that causes and maintains the horrible state of this disease. I hope this helps.

The bad guys are the people who won't fund it, not the doctors and researchers! And maybe soon they won't be bad guys any more and allocate real money to this disease.

Hopefully.

 

[keepinghopealive]

Ron has read everything he can get his hands on about ME/CFS, including lots of different treatments that help some patients, mainstream AND "alternative". One of Whitney's doctors is "alternative" and Whitney also tried all kinds of things that you are talking about here, and more. Ron's focus is getting to the "bottom of it", that is, finding the underlying molecular underpinnings of this disease, so that we can have KNOWN treatments that work for everyone, so that we can KNOW what will work on different people, given their unique manifestation of this disease. We have received literally thousands of messages from people telling us that they know how to cure Whitney, all helpful nice messages. There is NO WAY anyone could try all of these, although we have tried MANY. Research needs to discover what the cause is, how it's different for different people, and a way to treat patients based upon their own manifestation of the disease. The time needs to END where patients are spending thousands of dollars trying things from all over the place with no way to know what will help, and when some of the things actually make them worse. We have literally a whole room full of boxes and boxes of different things that Whitney has tried but didn't help, or helped a little. We are now on the road to actually making him BETTER, as in CURED. And this will be available to everyone. And the reason not many people research all the things you think need researching is THERE IS NO MONEY FOR RESEARCH! People would love to research all kinds of these things! Ron's focus is on the molecular underpinnings and what actually is going on in the body that causes and maintains the horrible state of this disease. I hope this helps. The bad guys are the people who won't fund it, not the doctors and researchers! And maybe soon they won't be bad guys any more and allocate real money to this disease. Hopefully.

Hi Janet,
Well said! What Ron and his colleagues are doing is extremely inspiring and exciting. One thing I'm wondering though, is with regards to Ron's comment that he is talking with drug companies, which I assume means to develop new treatments? Does this mean he feels that there are no drugs currently available that would treat the problem? Developing new drugs can take 7-10 years because of all the steps in the process.
Thank you!

 

[Janet Dafoe]

Hi Janet,
Well said! What Ron and his colleagues are doing is extremely inspiring and exciting. One thing I'm wondering though, is with regards to Ron's comment that he is talking with drug companies, which I assume means to develop new treatments? Does this mean he feels that there are no drugs currently available that would treat the problem? Developing new drugs can take 7-10 years because of all the steps in the process.
Thank you!

He's looking at all possibilities. He's hoping and optimistic that the treatment will be things that are already available.

 

[keepinghopealive]

He's looking at all possibilities. He's hoping and optimistic that the treatment will be things that are already available.

Ok good! Hopefully there is one or more things already available that can treat it.

 

[Remy]

I can't help but think the mitochondrial problems stem from the pathologically high levels of intracellular calcium and that the root cause is still a step removed. But the high calcium causes conformational changes to the mitochondria so they don't work properly. It's probably why supplements that help people with genetic mito disease aren't all that helpful for us...because our problem isn't the same.

Mitochondria are thus emerging as crucial players in the pathology of many different diseases, both as primary or secondary executioners.

Indeed, apart from the primary cause, that is frequently far away from mitochondria and even in the extracellular matrix (see below), many diseases show as final step a general Ca2+ deregulation that in turn causes mitochondrial Ca2+ overload and cell death through PTP opening and mitochondria swelling.

For instance, Gandhi and co-workers found impaired Ca2+ efflux from mitochondria through the Na+/Ca2+ exchanger in neurons lacking PINK1, a serine threonine kinase implicated in autosomal recessive early-onset parkinsonism. This led to increased Ca2+ uptake capacity, decreased membrane potential, and increased ROS production, all leading to early triggering of the PTP opening and concomitant neuronal death [117].

Blockade of this final process, no matter the original cause, is thus emerging as an effective therapeutic strategy also in vivo. Indeed, genetic ablation or pharmacological inhibition of Cyp D, a main regulator of the PTP, has been shown to decrease the mitochondrial alterations and ameliorate the pathology both in the case of Collagen VI deficiency and in the Scgd−/− mouse, a model for severe dystrophia [118] and [119].

http://www.sciencedirect.com/science/article/pii/S0005272810005797

 

[Empty]

yes, I also do not think mito are the root cause.

 

[Justin]

@Empty

What do you think then? I am curious not attacking just asking.

The Encephalomylietis is the main symptom in virtually all Mito diseases.

 

[serotone9]

This is all such a red herring. What do people think happens, all the mitochondria in the body suddenly give up operating correctly all on their own? No, the mitos are controlled neurologically by the brain/gene/immune complex, and that's why a mito-approach is never (imo) going to find the answer. They're going to have to figure out how the brain, etc. is working (or not) to control the mitochondrial function (or dysfunction) *in each distinct person*, and good luck with that! lol

 

[HMBCheryl]

About the meeting with the Regional Director of Health and Human Services in San Francisco: Four people with ME/CFS presented a brief personal story about how it has affected our lives. We presented her with documents and online resources which supported our complaint that HHS is not doing enough for people with ME/CFS. We presented the #MillionsMissing demands, which can be found on MEAction.net. We requested that she ask Secretary Burwell, the top dog of HHS meet with our fellow advocates in Washington DC. She agreed to follow up with one of us after presenting this request. The impact of the meeting remains to be seen.

 

[Cort]

About the meeting with the Regional Director of Health and Human Services in San Francisco: Four people with ME/CFS presented a brief personal story about how it has affected our lives. We presented her with documents and online resources which supported our complaint that HHS is not doing enough for people with ME/CFS. We presented the #MillionsMissing demands, which can be found on MEAction.net. We requested that she ask Secretary Burwell, the top dog of HHS meet with our fellow advocates in Washington DC. She agreed to follow up with one of us after presenting this request. The impact of the meeting remains to be seen.

Good job! You never know. Hopefully we made an ally.

 

[Cort]

Ron has read everything he can get his hands on about ME/CFS, including lots of different treatments that help some patients, mainstream AND "alternative". One of Whitney's doctors is "alternative" and Whitney also tried all kinds of things that you are talking about here, and more.

Ron's focus is getting to the "bottom of it", that is, finding the underlying molecular underpinnings of this disease, so that we can have KNOWN treatments that work for everyone, so that we can KNOW what will work on different people, given their unique manifestation of this disease.

We have received literally thousands of messages from people telling us that they know how to cure Whitney, all helpful nice messages. There is NO WAY anyone could try all of these, although we have tried MANY.

Research needs to discover what the cause is, how it's different for different people, and a way to treat patients based upon their own manifestation of the disease. The time needs to END where patients are spending thousands of dollars trying things from all over the place with no way to know what will help, and when some of the things actually make them worse.

We have literally a whole room full of boxes and boxes of different things that Whitney has tried but didn't help, or helped a little.

We are now on the road to actually making him BETTER, as in CURED. And this will be available to everyone. And the reason not many people research all the things you think need researching is THERE IS NO MONEY FOR RESEARCH!

People would love to research all kinds of these things! Ron's focus is on the molecular underpinnings and what actually is going on in the body that causes and maintains the horrible state of this disease. I hope this helps.

The bad guys are the people who won't fund it, not the doctors and researchers! And maybe soon they won't be bad guys any more and allocate real money to this disease.

Hopefully.

That sums up our situation so well....We need to get to molecular underpinnings of this disorder and once we do we really have a shot!

 

[Cort]

I can't help but think the mitochondrial problems stem from the pathologically high levels of intracellular calcium and that the root cause is still a step removed. But the high calcium causes conformational changes to the mitochondria so they don't work properly. It's probably why supplements that help people with genetic mito disease aren't all that helpful for us...because our problem isn't the same.



http://www.sciencedirect.com/science/article/pii/S0005272810005797

Interesting...Hopefully if intracellular calcium is bollixing things up that will be picked up!

 

[Cort]

This is all such a red herring. What do people think happens, all the mitochondria in the body suddenly give up operating correctly all on their own? No, the mitos are controlled neurologically by the brain/gene/immune complex, and that's why a mito-approach is never (imo) going to find the answer. They're going to have to figure out how the brain, etc. is working (or not) to control the mitochondrial function (or dysfunction) *in each distinct person*, and good luck with that! lol

I think that's a very good question. In fact how mitochondria all over the body get affected has been my big question regarding them as well. I'm sure there's an answer to that but I don't know what it is.

 

[Cort]

Like that signature by the way Empty......

yes, I also do not think mito are the root cause.

 

[keepinghopealive]

I think that's a very good question. In fact how mitochondria all over the body get affected has been my big question regarding them as well. I'm sure there's an answer to that but I don't know what it is.

I wonder if Ron would consider holding an occasional online Q&A session like Jarred Younger does? (Janet, if you're reading this, perhaps you can ask him?) An occasional Q&A session would be a wonderful way to keep ME/CFS patients and those who care for us "in the loop" and answer questions like this!