Professor Ron Davis's response to Naviaux study, including Q and A with Dr Naviaux

[simeyss]

Is it genetics? it can tend to run in families - we have three generations of women in my family and we are particularly interesting because I wasn't brought up by my birth mother, who also has ME, so unless it was acquired in the womb I can only see genetics as being important.

My mother has ME/CFS too. And on her side of the family, an aunt has MS and a cousin has Lupus, so my money is on a predisposition to autoimmunity in there for me somewhere.

 

[Groggy Doggy]

@simeyss
My Aunt was diagnosed in Los Angeles in 1960 with MS. I still wonder today if she really had ME and was misdiagnosed.

 

[Janet Dafoe]

@Rose49 I am attempting to get the results of my Metabolon test from OMI from my doctor from May 2015 (if this is even possible?) but am wondering with the new research if it would actually better to re-do the test to show my most current metabolic status/results?

Do you know when the testing will become available for current OMI patients? I know they are not at a treatment phase yet but I would love to do the test again in the hope that it can guide my future treatment. I know you are very busy so no rush to answer this!

Safe travels and journey back home.

If it's been awhile it'd probably be good to do it again, but I'm not a physician so can't give that advice. I don't know about OMI, I can ask Ron but the study samples are all de-identified and I'm not sure how all that works. Pretty soon you can get it done again through Laurel Crosby's plan.

 

[Jennifer J]

Such profound gratitude to Bob, Ron, Janet, and all support teams that have made this possible. Also to all donors, facilities, staff, and family members contributing to this good work and these good people.

I agree, too.

Janet @Rose49, I'm laying here in my bed with tears rolling down my cheeks, I am so moved by you, Ron and Bob, and by your posts. That you reach out to others here asking them to PM you has touched me so. You all are so kind (and helpful) with your responses. Thank you, and thank you to everyone involved from the depths of my being. I'm so grateful to you and everyone that is contributing. Sending you all lots of love.

 

[Janet Dafoe]

Hi @GreyOwl, @Rose49's kind invitation to contact her about testing in Australia was to @alex3619.

Certainly there are many people with ME in Australasia (that includes New Zealand too) who will be very keen to access this metabolite testing.

Yes, I just need a reminder to ask Laurel. She will make big announcement when she's ready.

 

[Gingergrrl]

If it's been awhile it'd probably be good to do it again, but I'm not a physician so can't give that advice. I don't know about OMI, I can ask Ron but the study samples are all de-identified and I'm not sure how all that works. Pretty soon you can get it done again through Laurel Crosby's plan.

Thank you so much for your quick reply! Ironically I just heard from my doctor and got the answer shortly after I posted to you. I very much appreciate both you and Ben Howell trying to get the answer for me. I learned that my results were bio-banked for future research and not yet run (and I did the test for free, it was not something I paid for and I knew it was for research so this makes sense).

So it would be best for me to do a new test in the future, to be used for clinical purposes once the research is further along, as nothing in it would change my current treatment plan which is what I suspected. So add me to the group that is excitedly waiting for Laurel Crosby to make her announcement that we can do the testing at OMI or in our own city (I live 6-7 hours south of OMI but we'd come up for testing for sure once it reaches that stage)!!!

Thank you and Ron again for everything that you are doing for an entire group of people worldwide. We just cannot thank you enough.

 

[simeyss]

Start a private conversation with me to remind me and I'll ask Laurel if she can manage Australia too!

Oh, exciting! I was just going to ask about that!

 

[simeyss]

I just started that conversation. I will try to keep everyone informed, and might start a thread on it. Do feel free to remind me, my memory is ... well, it would be impolite to give my real opinion, I don't like swearing.

Terrific, @alex3619!

 

[Groggy Doggy]

@Research 1st

You provided a great set of questions. The one I am most interested in is the head injury (concussion) because I met 2 people with ME that both had concussions. One person had repeated concussions, while playing sports. The other had one concussion in an auto accident.

Thanks!

GD

BTW- I saw the movie 'Concussion' with Will Smith.

 

[Groggy Doggy]

Thank you so much for your quick reply! Ironically I just heard from my doctor and got the answer shortly after I posted to you. I very much appreciate both you and Ben Howell trying to get the answer for me. I learned that my results were bio-banked for future research and not yet run (and I did the test for free, it was not something I paid for and I knew it was for research so this makes sense).

So it would be best for me to do a new test in the future, to be used for clinical purposes once the research is further along, as nothing in it would change my current treatment plan which is what I suspected. So add me to the group that is excitedly waiting for Laurel Crosby to make her announcement that we can do the testing at OMI or in our own city (I live 6-7 hours south of OMI but we'd come up for testing for sure once it reaches that stage)!!!
.

It would be interesting to run the testing on both your bio banked and future samples (to see if there any changes).
Darn, now I wish I had sent in samples prior to my treatments so I could compare them too. (Oh well, I can always do another 2 day CPET test).

 

[Never Give Up]

Knowing that treatment studies have not yet been done, my son is wondering if there are things that are generally good for mitochondrial health that he could be doing now, and things that he should avoid?

 

[Gingergrrl]

It would be interesting to run the testing on both your bio banked and future samples (to see if there any changes). Darn, now I wish I had sent in samples prior to my treatments so I could compare them too. (Oh well, I can always do another 2 day CPET test).

My doctor actually mentioned that very idea! He said it may be possible to obtain the original sample and run the test on it and then re-run the test as a comparison. It would be very expensive for me but I could manage it. Am trying to decide what to do (and we are not certain that it is possible to obtain the old sample, but this is assuming that it is). ETA: But he made it clear that nothing in the test would change my current plan. But my hope was that having the data could be useful for the future once the research is replicated and they get to the treatment phase.

I never did the CPET test (what you mentioned) b/c even back in early 2014 when I was researching it, all of my doctors felt it was too dangerous for me due to having POTS and breathing problems (which were nothing compared to what I have now)! I listened to them b/c they were all in agreement that the test was too dangerous for me and I know they were right although now I will never have that data.

 

[Gingergrrl]

You provided a great set of questions. The one I am most interested in is the head injury (concussion) because I met 2 people with ME that both had concussions. One person had repeated concussions, while playing sports. The other had one concussion in an auto accident.

GD, Sorry, I think you asked me this question and I did not give a proper reply. I did not have a concussion in my auto accident and have never had a concussion or head injury. But I did have a neck injury that continues to get re-injured extremely easily in case this is relevant to anything.

 

[osisposis]

I wasn't surprised to see PTSD mentioned. I'm going from memory here, but I believe Ron Davis has been studying PTSD and the effect of it on cellular level. He described a similar 'shut-down', specifically of the mitochondria, in the bodies of PTSD-patients, which would explain their symptoms. It would be interesting to find out if their metabolic pattern is similar to what they have found in PWME.

could be about the research going on with GWI as so of them have been diagnosed with CFS, ME/CFS including FM,IBS,MCS,plus, resently their diagnoses of PTSD has been found to be TBI do to chemical exposures, so they have changed PTSD to TBI/PTSD, makes sence to me as I was diagnosed with PTSD after my exposure and I couldn't agree more with the TBI /PTSD, I knew I didn't just up and deside to get PTSD , I kept telling anyone that would listen, this is TBI, this is more severe than brain fog. and TBI includes many features of PTSD but not all of them. this may be more about FM, OR CHRONIC RHINOSINUSITIS

 

[Starfive]

@justy - by middle aged, do you mean menopausal or maybe perimenopausal. My problems with energy levels (previously very good) began to develop at this time. So maybe hormone changes make women vulnerable, and if there are already genetic markers (is that a correct scientific term?) are there, then the body is weakened and doesn't recover so easily.
Conversely to your question though this was my first ME hit, and was mild to start with, but whooping cough some years in weakened me further. I have never quite got back to the previous state, though am much better this year (herbalism mostly). If the detached retina hadn't hit me I would have had a reasonable year!

Hmmm, I had a detached retina also... Wonder if it is a symptom?

 

[mermaid]

Hmmm, I had a detached retina also... Wonder if it is a symptom?

I also had a retinal hole some 7 years ago @Starfive which though a different condition, involves the vitreous inside the eye pulling on the retina. Some people get detached retinas due to the shape of their eye ball apparently - they are short sighted, but this is not so for me.

Apparently there are a couple of other conditions that have higher incidence of retinal detachment and one of them is Ehlers Danlos Syndrome, and there are quite a few people with ME who also have EDS. I don't think I do have this but I do have hypermobility (severe hypermobility is one of the key features of EDS).

Another vulnerability for retinal detachment is Lattice Degeneration which is a kind of fraying on the edges of the retina and about 10% of the population have that (including me apparently!). It's not usually an issue unless you are going through Posterior Vitreous Detachment which is a kind of normal process that happens in middle age. I think the 2 conditions probably caused my detachment.

 

[Janet Dafoe]

Thank you so much for your quick reply! Ironically I just heard from my doctor and got the answer shortly after I posted to you. I very much appreciate both you and Ben Howell trying to get the answer for me. I learned that my results were bio-banked for future research and not yet run (and I did the test for free, it was not something I paid for and I knew it was for research so this makes sense).

So it would be best for me to do a new test in the future, to be used for clinical purposes once the research is further along, as nothing in it would change my current treatment plan which is what I suspected. So add me to the group that is excitedly waiting for Laurel Crosby to make her announcement that we can do the testing at OMI or in our own city (I live 6-7 hours south of OMI but we'd come up for testing for sure once it reaches that stage)!!!

Thank you and Ron again for everything that you are doing for an entire group of people worldwide. We just cannot thank you enough.

Laurel's will not be at OMI. It will be through the CFSResarch Center at Stanford, which Ron runs. More details from Laurel soon.

 

[Groggy Doggy]

Knowing that treatment studies have not yet been done, my son is wondering if there are things that are generally good for mitochondrial health that he could be doing now, and things that he should avoid?

has he tried acupuncture?

 

[Groggy Doggy]

GD, Sorry, I think you asked me this question and I did not give a proper reply. I did not have a concussion in my auto accident and have never had a concussion or head injury. But I did have a neck injury that continues to get re-injured extremely easily in case this is relevant to anything.

Hi!

That's good to hear you didn't have a head injury. No worries, I am so far behind in reading threads/posts; been focused on Naviaux & Davis.

Get some rest (yikes didn't realize its very late).

GD

 

[Forbin]

@Ben Howell, @Rose49

I'm not sure if this question has already been asked, but does Dr. Naviaux or Dr. Davis have an opinion concerning how, if at all, this newly discovered hypometabolic response might be related to the shifting ME/CFS cytokine profile found by Drs. Hornig and Lipkin?