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

Molly98

Senior Member
Messages
576
I have also had a distinct change from picking up every illness and Infection going round since first having ME to over the past few years bizarrely not seeming to get anything. I find it very odd as for most of my life I have seemed far more susceptible than most to illness and Infection than most and this has certainly as been the case since having ME after bad case of EPV age 20 (almost 25 years ago) This change has coincided with other aspects of ME becoming worse, OI, sensitivities , eye pain , neurological symptoms, that I am largely house bound and now use wheelchair. But no Infections. I do find it very weird because I am so used to bracing myself every time husband or daughter get cold, virus, or sickness bug, because I would always be guaranteed to get it and it always effects me badly. I used to get a lot of sore throat, swollen glands with ME flare ups but don't really suffer from these now, some times swollen lymph nodes if bad flare up but still different from how it used to be.
 
Messages
88
Location
Dutchy
here also hardly any flu since, in my opinion, the king of flu's; m.e.
but for a fair comparison we should ride as many trains and buses and hang around offices, like/as the healthy folks

no metabolic issues allover btw here, just in brain & throat, few other tiny spots
 
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Anne

Senior Member
Messages
295
@Anne, I used to literally catch every everything my whole life, then about 7 years ago I stopped getting infections altogether and developed all sorts of bizarre allergic reactions to everything as my energy metabolism further collapsed from an already suboptimal baseline. There was a clear immune shift. Given that the pattern can change within the same person I doubt that these are meaningful subsets of ME.

I find this - the fact that people change from one group to the other - very interesting, @hixxy @Sidereal

But I would say that this only increases the importance of stratifying these subsets in all studies! It's quite possible that the immune signals will look very different before and after the shift (just like they are likely different between "always double sick" and "sick but never sick" groups). If the groups are put into one bag in a study that could muddle the results, right?

I sent an e-mail about my suggestion to stratify these groups to Linda T at OMF and received a very nice response - she will be forwarding the question to Ron Davis and Bob Naviaux.
 

Sidereal

Senior Member
Messages
4,856
I find this - the fact that people change from one group to the other - very interesting, @hixxy @Sidereal

But I would say that this only increases the importance of stratifying these subsets in all studies! It's quite possible that the immune signals will look very different before and after the shift (just like they are likely different between "always double sick" and "sick but never sick" groups). If the groups are put into one bag in a study that could muddle the results, right?

I sent an e-mail about my suggestion to stratify these groups to Linda T at OMF and received a very nice response - she will be forwarding the question to Ron Davis and Bob Naviaux.

Btw Anne, in a strange coincidence, I've been dealing with the first cold this week for the first time in many years. Seems like the pendulum is finally swinging back in the other direction thanks to the interventions I've been doing this year but boy, do I feel absolutely awful right now. (Though I should add that when the infection started 10 days ago or so my energy levels, muscle power, orthostatic intolerance and mood improved enormously, then a mild fever hit, and after that it's been downhill into ME/Dauer hell once again.)
 
Messages
38
Dr. Naviaux, the vagus nerve is a superhighway connecting all of these systems. I wonder what you make of the hypothesis that some kind of infection or perhaps autoimmunity to the vagus nerve might be at play? It would explain the observation that 1/3 of ME/CFS patients have autoantibodies to the same acetylcholine receptors as patients with Myasthenia Gravis as well as the observation that some (not all but some) patients find significant relief on acteylcholinesterase inhibitors like Mestinon.

http://me-pedia.org/wiki/Acetylcholine
http://me-pedia.org/wiki/Vagus_nerve_infection_hypothesis
http://me-pedia.org/wiki/Vagus_nerve

Also it seems that different herpesviruses can trigger acetylcholine receptor autoantibodies, which could explain the association between this disease and herpesvirus onset, why so many patients get symptomatic relief from antivirals (yes the anti-inflammatory effects could also be at play but personally, when I go off my antivirals, I DO get an obvious HSV-1 flare within days and become concomitantly bedridden, so in my case, we aren't guessing about reactivation), and could explain why B-cell depletion seems to be beneficial for some with this disease (*in particular* if you have those acetylcholine auto-antibodies).

I just saw all of this. It's strange, how long and deep I dive into things and then run into more when I was sure I'd exhausted the search.

I had some kind of seizure activity for years of this illness. I didn't know what it was, but when explained to a few neurologists and another doc—they all said 'seizure'. Not thrashing around kind, and at moment a bit too fried to double check b/c clonic, myclonic, and the spectrum are confused in my head right now. But seizures of some kind, and even not grand mal, terrifying and there is a serious zap-feeling brain-neuro hangover that's a lot too. It's so rare that I take supplements or many treatments and feel any sort of certainty that it's actually doing something—if our baselines are terrible, it's hard to get a fix. But I am absolutely certain that the seizures decreased hugely after I started taking sunflower lecithin. I didn't register that it had acetylcholine in it, I was trying it for something completely unrelated to larger CFS (I was trying it for gut issues).

Some of the theories get a little above my pay grade, but that apparently taking in acetylcholine and years of seizures nearly stopped (as well as some other really awful neuro symptoms) was really a big thing for me. I'm still really sick, but at least I have less of THOSE things.
 

boohealth

Senior Member
Messages
243
Location
south
It might also be the phosphatidyl choline itself. That's the major fatty acid composing the cell membrane.

I just saw all of this. It's strange, how long and deep I dive into things and then run into more when I was sure I'd exhausted the search.

I had some kind of seizure activity for years of this illness. I didn't know what it was, but when explained to a few neurologists and another doc—they all said 'seizure'. Not thrashing around kind, and at moment a bit too fried to double check b/c clonic, myclonic, and the spectrum are confused in my head right now. But seizures of some kind, and even not grand mal, terrifying and there is a serious zap-feeling brain-neuro hangover that's a lot too. It's so rare that I take supplements or many treatments and feel any sort of certainty that it's actually doing something—if our baselines are terrible, it's hard to get a fix. But I am absolutely certain that the seizures decreased hugely after I started taking sunflower lecithin. I didn't register that it had acetylcholine in it, I was trying it for something completely unrelated to larger CFS (I was trying it for gut issues).

Some of the theories get a little above my pay grade, but that apparently taking in acetylcholine and years of seizures nearly stopped (as well as some other really awful neuro symptoms) was really a big thing for me. I'm still really sick, but at least I have less of THOSE things.
might
 

Nickster

Senior Member
Messages
308
Location
Los Angeles, CA
The thread has indeed generated a lot of interest and way more questions than expected. The Q and A in the title was regarding Dr Naviauxs intial answers that he wrote, not an ongoing Q and A but both Dr Naviaux and Prof. Davis were kind enough to answer some extra questions posed by the community. Dr Naviaux will hopefully get round to answering when he can-that may be weeks or months. If he doesn't manage to, its because he is so busy working on research :)


I spoke to Dr Naviaux with Linda and Janet via email yesterday about this, and all is okay-@Rose49 is in control, do not fret!

The research has to come first. If they have time to answer the questions then that is a bonus-Dr Naviaux and Prof. Davis have already clarified the topic of viruses which was one of the main questions asked. Dr Naviaux has also answered some other questions which will be updated soon.


B
Hi Ben,

I was just checking to see if there have been any new updates on the ongoing research. I am trying to give some type of encouragement to my 25 year old son with severe cfs/me.
Thank you for all of your communications!
 
Hi Ben,

I was just checking to see if there have been any new updates on the ongoing research. I am trying to give some type of encouragement to my 25 year old son with severe cfs/me.
Thank you for all of your communications!
Just tagging @Ben Howell to help him see it, though I'm sure he said that we're not anticipating any official update until the IiME conference, which is end of May/beginning of June.
 

Jesse2233

Senior Member
Messages
1,942
Location
Southern California
Hi Ben,

I was just checking to see if there have been any new updates on the ongoing research. I am trying to give some type of encouragement to my 25 year old son with severe cfs/me.
Thank you for all of your communications!

You can share with him that Dr John Chia recently told me a potent new antiviral for CFS/ME is being developed in Belgium
 

Ben H

OMF Volunteer Correspondent
Messages
1,131
Location
U.K.
Hi Ben,

I was just checking to see if there have been any new updates on the ongoing research. I am trying to give some type of encouragement to my 25 year old son with severe cfs/me.
Thank you for all of your communications!

Hey @Nickster

Im so sorry to hear your son is going through this .

There should be some updates soon, and with the London conference coming up some updates and maybe a video with that. I'll tag @Janet Dafoe (Rose49) as she will know more!

I can tell you the team are making amazing progress however, and we are in such good hands.


B
 

MEMum

Senior Member
Messages
440
Hi, research conference is Fri 2 June. Several from PR are going. Hoping to provide some info from at least 2 of us. Prob just highlights over the foll w/e, then more detail as and when time and energy allow.
It is such a great day, I wish you could all be there. Hearing top researchers illuminating how many biomedical abnormalities there are, ie it is a real organic disease. Plus the enthusiasm and hope for understanding and a cure is almost tangible.
Exhausting but amazing.
PR are still looking for someone with the brain and dexterity to tweet. Any offers? @Keith Geraghty or anyone else?
I am able to help with train fare/conference cost if that is a problem. PM me
 

frozenborderline

Senior Member
Messages
4,405
For example, in a person who has magnesium within normal healthy ranges, there is not enough magnesium in their blood to have any significant effect on blocking the NMDA receptors. It is only when you use very high doses of magnesium (either through injection or by applying magnesium cream transdermally to your body) do you start to get these NMDA-inhibiting effects.
What doses do you need for these effects? They cannot be achieved orally at any dose?
 

Hip

Senior Member
Messages
17,824
What doses do you need for these effects? They cannot be achieved orally at any dose?

When I had moderate to severe generalized anxiety disorder (and my theory is that this may be cause by over-activation of NMDA receptors), applying concentrated magnesium sulfate solution to my skin from head to toe and letting it dry in had noticable anti-anxiety effects. See this post for my method of applying magnesium sulfate transdermally.

Whereas taking oral magnesium to bowel tolerance (which is about 400 mg a day for me) had no observable effect on anxiety.

Therefore it was obvious to me that you get a much higher dose from transdermal magnesium.


I estimated in this post that from transdermal magnesium sulfate you may absorb around 2 grams of elemental magnesium.

Some studies on transdermal magnesium absorption here.
 
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