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

[Solstice]

It's very important to be able to differentiate between diseases that are often confused for ME/CFS. Wouldn't it be nice to be able to diagnose it definitively and stop having doctors tell you you are depressed, or have PTSD or MS, when you don't? And stop having doctors tell you that your whole deal is from depression, when that is only a small part of it and actually secondary to your disease (it is pretty depressing to have ME/CFS). The effort here is to have a specific diagnosis. No more ambiguity, confusion and ignorance!

On the one hand i'd welcome that with open arms. On the other hand it get's me thinking about those people that still won't have a diagnosis after this. Or perhaps a diagnosis which these great scientists will no further pursue. I know people like your husband, Naviaux, Lipkin, Hornig, Hanson etc. can't do everything and certainly not all at once. But it would be really great if those people could be helped too in the future. Could that be a possible side-effect of this study by the way? That other groups that might not have the dauer-like disease but do have some overlapping symptoms get more knowledge/closer to a cure?

 

[trishrhymes]

Dr. Naviaux told me today that he is pretty overwhelmed with all the questions, and he's spent a lot of time on the ones he has answered. He'd love to respond to them all, but it's taking time away from his research and he needs to focus on that for awhile. I'm sure you'll be glad he's so dedicated to the research! I will continue to corner Ron when I can and get him to respond to things. I did it tonight when he was tired and wanted to go to bed, but I made him answer a couple of things. He even got funny! Hang in there everybody! He says to tell everyone "Goodnight!"

I have been becoming concerned that, while appreciation has been expressed for the answers that Dr Naviaux and Ron Davis have given us to many questions, there seems to be an endless stream of questions that keep on coming, some of which have already been answered, others that are unanswerable or not within the field of these particular researchers, or would take a great deal of time to answer.

These are very busy dedicated scientists who have willingly given us time to provide many answers already. I don't want us to distract them any further from their vital work. Perhaps it's time to call a halt, and simply refer people to all the answers already given, which I think have been gathered on the Open Medicine Foundation website.

I'm not criticising anyone who has asked questions, just saying I think it's time to give the scientists a break!

 

[Jill]

Yes, whitney has had this experience many times. Dr. Naviaux told me once something about the body reacting to the CHANGE, and once the change stops happening and everything is stable again, the effect goes away. I can't remember more specifically what he said and I am sure he said it way better than this! So don't quote me! I'm trying to find a time to ask him again so I can put it on here.

@Rose49 and @Ben Howell

This has intrigued me a lot. My dear partner is severely ill ( or was until 12 days ago).

Bit of history on this : 2 years ago I'd given him some of my high dose sodium diclofenac 75mg SRone a day upped to two a day after about 10 days. It had a remarkable effect. He went from being housebound to mowing my lawn. Then at about a month/6 weeks he began getting terrible breathlessness part after having a shower. He was told to stop it immediately as the gp thought it was allergy. He spent 6 months going to a nutcase immunologist/rhematlogist who said she could desentistise him to it, which after a load of appointments she admitted she couldnt do and insisted he needed to tell "his story"" in order to rid himself of his affliction.
2 horrid years pass - he had been in his bed room, peeing into a bottle, lying in the dark etc etc. He couldn't even shuffle ( he looked like he had parkinsons or some form of ataxia when he tried to walk) withhorrendous breathlessness. I managed to get a dr to try the diclofenac again 12days ago. They want him in hospital despite us telling them the sensitity came on in a delayed way. Upshot - they eventually gave it to him with no adverse effects and after two hours he walked again for the first time in 2 years. Its like he has been rapidly been äwakened. I described to the dr who rang to find out how he was, that it was like something out of the movie awakenings. Then Naveiux publishes. I cant believe my eyes.

We are terrified he will regress again. The weird thing is he didn't need a walker or anything, everything worked just fine. We had had a stupid physio to the house who virtually screamed at him that he didn't moblise hed never walk again. Nedlees to say we sacked her.

I would love Rons view on this, and what we could possibly do to avoid the regression. My thoughts are to take him on and off the med so his body is confused and never gets used to it.

I'm so so grateful you are on this board Janet,despite all you have to do. I can not thank you and Ron for giving me hope. i've just wtched the invest in ME dvds and loved Ron's talk. To distill the number of themes and detail into that short time frame takes skill. I cried watching it. I cried for all of us who have deserved better. Its crazy thaat medicine has become such a no science and the NIH. The frustrations and heart ache for you all must be so hard on many levels. I totallly admire you. Looking after Al has been dreadfully difficult.

Please ask a shortened version of this q to your list if you can. If we do need to stop and start the diclofenac I need to be doing it asap.

Aroha, Jill

 

[paolo]

I find it interesting that enterovirus can cause chronic heart muscle infections (chronic myocarditis), and is linked to triggering heart attacks, yet there is no evidence for a higher rate of myocarditis or heart attack among ME/CFS patients, even though it is common for ME/CFS patients to have chronic enterovirus infections in their bodies (in the stomach, brain and muscles).

Could it be that this hypometabolic state is protecting the heart from developing an enterovirus infection?

In Lyme disease you have the same pattern: those who are left with tissue damages (heart damage, paralysis of one or more limbs etc) by B. burgdorferi infection, won't develop ME/CFS; on the other hand Lyme patients who fulfill ME/CFS criteria will be preserved in their physical integrity. I have been seeing this pattern over and over, since I entered the Lyme community two years ago.

It is as the CFS-type immune response protect them from tissue damages.

 

[trishrhymes]

Hi @Jill, your story is fascinating. It would be great to have some research done on how such a thing could happen, especially as Rose49 has described a similar phenomenon with Whitney.

I wonder though whether it's fair to ask for individual medical advice from Ron who is a scientific researcher, not a clinician, and it's clear from what has been said that although they have observed the phenomenon of things working for a while and then stopping working, they don't yet know why, let alone how to stop the effect.

Sorry, I don't mean to sound critical of you asking what is clearly a burning question, but I'm starting to feel a bit as though too much is being expected of Ron because we're all so desperate for answers.

 

[lansbergen]

A couple of questions I find really interesting are the issue of over- vs under-active immune systems in CFS,

I think it is both. The early innate system is overactive and hangs somewhere. The adaptive immune system fails.
With the infection I suspect it is assumed there is no adaptive response.

 

[lansbergen]

or get better on some supplement and then the effect goes away.

The immune modulator I use still works after twenty years taking it. It was very slow improvement and when I forget once I have a huge hangover the next morning. Then it takes a week or more to get back to the former level.

 

[boohealth]

Yes, but I am still gobsmacked by the attitude of @boohealth - s/he has nothing to gain from talking to Ron Davis but Ron may get some valuable insight that will help his son !!!!

It may not be probable but it's certainly possible!

 

[boohealth]

I respectfully disagree and don't think boohealth is being misunderstood because she (he?) has expressed the same sentiment in about 5-6 separate posts like below which are verbatim:



If I were to be offered a free Skype consult with Dr. Davis, I would absolutely consider myself lucky and I would act now. If I were told my consult was tomorrow at 2:00 AM, I would stay up all night preparing and would be thanking God for the opportunity presented to me. I would also read this thread in it's entirety and would find it very useful as part of my preparation.



Boohealth admits to criticizing him and it was not b/c of not being able to communicate coherently b/c of the illness per her own words. She disagrees with him (which is certainly okay!) but we can express disagreement and still be polite and not insult someone's personal or professional character.

Of course a scientist of his caliber can cope with these type of comments and is likely un-phased by them but the risk is that he or Dr. Naviaux could decide, "Why bother answering lists and lists of questions complied by Ben when the members of PR are unappreciative." I don't want to run that risk plus I just find it rude.

And I agree with Bob that 99.9% of us grasp the enormity that we have direct access to speak with such renowned scientists. I hope the scientists know this as well and that they know that we do not take this opportunity for granted.

@Gingergrrl , appreciate your sentiments. My perspective is a bit different. I've got one shot at this now, to get my viewpoint across, and in fact last week while juggling a lot of other stuff I wrote and called some MDs/PhDs I know and made a list of others I know/respect immensely, as I was considering possibly asking for a group skype though I don't know if this is feasible or possible but 2 have agreed (takes the same time for Dr. Davis & @Rose49 Janet Dafoe--I don't know exactly how group skype is done but it must be possible). I can't stay up all night and function plus it might throw me into a week or two of rebound insomnia, with serious repercussions, so you might do it, but I can't. I think it's more respectful to prepare this in the most coherent fashion, thinking it out.

To anybody else, I apologize for statements that seemed brash or rude. Where it was coming from was frustration and really, just never forgetting those pictures of Whitney and imagining myself in his place, and thinking of people like Vanessa Lin Li :-(. Vanessa PM'ed me just a few days before she killed herself. I had no idea that was in the offing. :-( As for me, I feared I would end up 100% bedridden at one point. I was certainly very sick.

Hoping all have a good weekend.

 

[KME]

Ron says these are very interesting questions that we don't have answers to at the present time. It would be interesting to follow patients from early onset to see how the disease progresses. Again, we need funding!

Huge thanks for putting this question to Prof Davis and for getting back to us. So many questions, so little funding! We'll see what we can do about that. This science is so good that I am hopeful that funding will improve. Thanks again and know that your enthusiasm and well-founded optimism is giving us a boost!

 

[Sasha]

@Ben Howell - I'm also concerned that we're bombarding Drs Davis and Naviaux with questions.

Why not choose the best question each week and get them to answer just that one? And let OMF put that question and answer out on Facebook and wherever, with a call for funding?

We need these guys at the bench, not talking to us!

I love the idea of a Q&A thread but there's so much interest that it's gone a bit crazy.

 

[Gingergrrl]

@boohealth I understand and no worries to explain further. I am leaving now for my IVIG and can't say more right now but best wishes to you and no bad feelings to you or anyone in this thread.

ETA: I don't know why the words in this thread are blue and hyperlinked (I think that is the word!) and have tried to fix it but can't!

2nd ETA: Boo health, you responded in this thread re: my IVIG and Cortef and I am going to multiquote your words over to my IVIG thread (later) and respond there vs. here to try to stay on topic.

Thank you also for your PM and it might take me a few days to respond to it.

 

[Tuha]

@Ben Howell - I'm also concerned that we're bombarding Drs Davis and Naviaux with questions.

Why not choose the best question each week and get them to answer just that one? And let OMF put that question and answer out on Facebook and wherever, with a call for funding?

We need these guys at the bench, not talking to us!

I love the idea of a Q&A thread but there's so much interest that it's gone a bit crazy.

What I think that this Q&A option is very important for marketing/publicity and so they can get more money for their research what is also important. But we need a balance and they cannot be owerhelmed and get too tired.
I also think that the best possibility is to pick up only some questions and answer them but it doesnt have to be so often

 

[Ben H]

@Ben Howell - I'm also concerned that we're bombarding Drs Davis and Naviaux with questions.

Why not choose the best question each week and get them to answer just that one? And let OMF put that question and answer out on Facebook and wherever, with a call for funding?

We need these guys at the bench, not talking to us!

I love the idea of a Q&A thread but there's so much interest that it's gone a bit crazy.

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

 

[boohealth]

@boohealth I understand and no worries to explain further. I am leaving now for my IVIG and can't say more right now but best wishes to you and no bad feelings to you or anyone in this thread.

@Gingergrrl good luck with that. I got notified of your latest post on the other thread--but myself have no insight, I don't know anything about the uses of Cortef. I will say I don't think it's the glycine, that's just a much better more physiologically tolerable medium than dextrose and sodium. It could be a combo of 1) passive antibodies 2) there is a polysaccharide in IVIG that I recall reading some years ago they had isolated and thought was largely responsible for the immune modulation and 3) there are probably metabolic modulators, and molecules [to use the vernacular of this thread] that we don't understand, that work as well.

Glad you are feeling better!!

 

[Research 1st]

I find it interesting that enterovirus can cause chronic heart muscle infections (chronic myocarditis), and is linked to triggering heart attacks, yet there is no evidence for a higher rate of myocarditis or heart attack among ME/CFS patients, even though it is common for ME/CFS patients to have chronic enterovirus infections in their bodies (in the stomach, brain and muscles).
.

Hello. Could you please link me to the autopsy studies on negative ME CFS patients heart tissue? I can't find any myself when searching.

I didn't know there was no evidence for heart muscle infection in ME CFS, or do you mean 'no evidence' because the Science hasn't been done?

Thank you.

 

[Groggy Doggy]

To anybody else, I apologize for statements that seemed brash or rude. Where it was coming from was frustration and really, just never forgetting those pictures of Whitney and imagining myself in his place, and thinking of people like Vanessa Lin Li :-(. Vanessa PM'ed me just a few days before she killed herself. I had no idea that was in the offing. :-( As for me, I feared I would end up 100% bedridden at one point. I was certainly very sick.

Hoping all have a good weekend.

I absolutely knew where you were coming from. I sometimes get the "triple whammy" of feeling overwhelmed, frustrated, and helpless. We all have ideas how to make things better; it's hard to communicate them sometimes when we are ill. I appreciate your postings and hope your insight leads to more treatment options (so no one is left behind).

 

[aquariusgirl]

Is there any evidence of copper and iron dysregulation? Could the effects of copper and iron dysregulation be driving chronic infection?
Could it be implicated in chronic parasite infestation?
Is there evidence of SOD deficiency in any group or sub group of patients? Is this linked to an imbalance of zinc & copper.?
UCLA researchers say that it is important to balance zinc and copper in treating Alzheimer's patients.....what about in CFS? Zinc deficiency seems very common? Why?
Prof Richard Deth has noted the importance of Cu2 to methylation. Can Cu2 be measured? What parameters, tests, are available to track this.
Is hypercoagulation, or hyperfibrinolysis, an important part of the syndrome? Professor Kell seems to think there is a connection between LPS and fibrin and misfolded proteins.
Is this work pertinent to this illness?
Thank You.

 

[Ben H]

Is there any evidence of copper and iron dysregulation? Could the effects of copper and iron dysregulation be driving chronic infection?
Could it be implicated in chronic parasite infestation?
Is there evidence of SOD deficiency in any group or sub group of patients? Is this linked to an imbalance of zinc & copper.?
UCLA researchers say that it is important to balance zinc and copper in treating Alzheimer's patients.....what about in CFS? Zinc deficiency seems very common? Why?
Prof Richard Deth has noted the importance of Cu2 to methylation. Can Cu2 be measured? What parameters, tests, are available to track this.
Is hypercoagulation, or hyperfibrinolysis, an important part of the syndrome? Professor Kell seems to think there is a connection between LPS and fibrin and misfolded proteins.
Is this work pertinent to this illness?
Thank You.

Hi @aquariusgirl

These are a lot of questions. A lot of the metabolites appear to be low due to a mechanism implied in Dr Naviauxs paper. I think that it can potentially explain some of what you are asking. Fibrin and HC im not sure.

Dr Naviaux is focusing back on research and can't answer these at the moment.

Prof. Davis may be able to when Janet is able to show him, so hopefully some of this can be addressed more specifically at somepoint

I think its pertinent to remember that it is only the preliminary study and some answers are simply not known at this point. A lot is hypothetical at the moment.


Thanks,


B

 

[Hip]

Hello. Could you please link me to the autopsy studies on negative ME CFS patients heart tissue? I can't find any myself when searching.

I didn't know there was no evidence for heart muscle infection in ME CFS, or do you mean 'no evidence' because the Science hasn't been done?

I am quite interested in ME/CFS comorbid diseases, ones that are present in ME/CFS patients at higher than normal rates (mainly because I think these comorbid diseases could throw light on the pathophysiology of ME/CFS).

Lots of physical diseases are known to be more prevalent in ME/CFS patients. For example, irritable bowel syndrome, interstitial cystitis and overactive bladder (irritable bladder), chronic pelvic pain syndrome, endometriosis, Raynaud’s disease, temporomandibular joint disorder, myofascial pain syndrome, Hashimoto’s thyroiditis, prolapsed mitral valve, Sjögren's syndrome, postural orthostatic tachycardia syndrome, neurally mediated hypotension are all more common in ME/CFS.



But I have never seen any published research, nor any observations by ME/CFS doctors, nor any reports on ME/CFS forums or ME/CFS literature regarding an increased prevalence of heart attacks or myocarditis among ME/CFS patients. Heart attacks and myocarditis have clearcut symptoms, so they would not generally be missed.

In the first analysis, you would think that coxsackievirus B or echovirus-induced myocarditis or heart attacks would be very common in ME/CFS, given that Dr Chia found 82% ME/CFS patients have a chronic enterovirus infection in their stomachs, and given that all the British research in the 1980/90s showed ME/CFS patients had chronic enterovirus infections in their muscles, which in either case the immune system seems unable to eliminate.

You would have though that such pathophysiological circumstances would favor the spreading of the enterovirus infection to the heart muscle, leading to heart attacks and/or myocarditis.

But as far as we know, this does not seem to be the case. I just wonder why. The idea is that the ME/CFS metabolic state could be the body's way of protecting itself from the tissue damage that enterovirus might otherwise cause.