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

[Cort]

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!

Great idea. I know that he's really busy but maybe every once in a blue moon? That would be really great.

 

[Merida]

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

@Remy
I appreciate what you are saying about high calcium levels. My calcium levels in blood work tend to be high normal or slightly out of normal range. I have multiple calcified pheloliths in my abdominal veins, but poor teeth and osteopenia. I have had several bouts of gouty toe after eating a lot of full fat yogurt.

I am recalling Dr. St. Amand's work about phosphates. That is, fibromyalgic patients have a genetic defect that inhibits phosphate excretion. Instead phosphates are deposited in the body. I presume as Calcium phosphate ? I do have the lumps and bumps in my soft tissues, that Dr. St. Amand discusses. So did my Mom. The biggest issue with Guaifenesin treatment is the diet with no salicylates. I know of some people who have benefited a great deal from the protocol, and some who have not been helped at all. So ?????

Yes, I hope this great team of scientists just keeps at it until we are all well enough to have a good quality of Life.

 

[Justarose123]

The mitochondria question is interesting. Early on FMS researchers pointed out that about 70 percent of FMS patients have a mother who also has it. True for me. As I looked at the multiple structural issues in my maternal line, and in myself, I kept thinking that it was as if there was not enough 'energy ' in the developing fetus to complete various development stages completely and correctly. ( for example : small skull base, incomplete rotation of the gut, developmental hypoplasia of the maxillae, sacral hypoplasia as evidenced by small sacral holes, or foramina, heart malformations, and more).

True I have a few congental defects myself as my brothers, Rita

 

[San Diego]

Early on FMS researchers pointed out that about 70 percent of FMS patients have a mother who also has it.

I’m the third generation on my mother’s side. Seems to be a common thread.

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.

I call those my “Bins of Shame”..... and the shame belongs not to me.

We are now on the road to actually making him BETTER, as in CURED. And this will be available to everyone.

I feel something in my soul. I think it might be hope, but it’s been absent so long I’m not sure if I recognize it.

 

[Remy]

I appreciate what you are saying about high calcium levels

I think it's actually high calcium levels inside the cells which cause an ion channelopathy which keep the cellular communication from working properly and provoke allergic response.

But certainly it looks like calcium homeostasis in general could be affected.

It's all still a mystery though hopefully the answers are soon to come.

 

[laureano]

The mitochondria question is interesting. Early on FMS researchers pointed out that about 70 percent of FMS patients have a mother who also has it. True for me. As I looked at the multiple structural issues in my maternal line, and in myself, I kept thinking that it was as if there was not enough 'energy ' in the developing fetus to complete various development stages completely and correctly. ( for example : small skull base, incomplete rotation of the gut, developmental hypoplasia of the maxillae, sacral hypoplasia as evidenced by small sacral holes, or foramina, heart malformations, and more).

interesting... good news for my son

 

[Merida]

@laureano
My son began symptoms at age 5 with a terrible ( well-documented) EBV infection. He developed scoliosis as a teen. Scoliosis runs in the family - my Mom, me, Mom's first cousins. Even mild scoliosis may be an important observation and indicator of other anatomical issues that stress the blood/ brain barrier - allowing viruses to cross and affecting fluid flow. Gee, I want to write a blog with Cort, but so exhausted here.

 

[Cort]

@laureano
My son began symptoms at age 5 with a terrible ( well-documented) EBV infection. He developed scoliosis as a teen. Scoliosis runs in the family - my Mom, me, Mom's first cousins. Even mild scoliosis may be an important observation and indicator of other anatomical issues that stress the blood/ brain barrier - allowing viruses to cross and affecting fluid flow. Gee, I want to write a blog with Cort, but so exhausted here.

I know. I would love to have one...

I really think it may apply in my case. I had such a weird reaction to stretching my neck....It made me really ill!

Maybe write a little bit at a time?

 

[LondonPots]

Tell them the Big Data Analysis will help them find terrorists. That'll do it.

 

[Cort]

Tell them the Big Data Analysis will help them find terrorists. That'll do it.

We would be overwhelmed with money