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

[boohealth]

He most certainly is aware and he works with both Naviaux and Eric Gordon, who are also aware. They don't get their info from Scientific American. They rely on peer reviewed studies and communication with other world class scientists.

I pointed out Scientific American in order to show that it is a general consensus now avaialble in news stand magazines.If he knows the lyme literature he should know persistent infection is estimated at 20% now (and that may be an underestimate). One out of five is not negligible by any means.

 

[boohealth]

Ron says he'd be very glad to hear your ideas. PM me and start a conversation. We'll set it up.

Thank!! I only got back on here just now--and I most definitely will PM you. It will certainly be by the end of this month (I am going to think out some points in my PM, as a sort of intro.)

 

[boohealth]

Hi @boohealth Could you please give me an example of this (not listening)? What kind of suggestions have you proposed?

I'll propose them again--Janet invited me to PM her in order to possibly skype with Ron. So, hope springs eternal!

 

[boohealth]

Where do you get off telling renowned scientists that they ought to know better? According to you, who makes offensive and unfounded accusations against researchers who are working hard to figure the disease out when they could go and get paid loads more easily by taking their skills and reputations and looking into a more trendy disease where funding comes easy. It's really stupid to bite the hand that feeds you, which makes me wonder what your motive is here.

To answer your point above, they don't say that it is "a small percent of people who are acutely infected with Lyme disease go on to develop chronic symptoms. The sentence includes EBV and HHV6. Taking the three together, they are absolutely right, it is a small percent. It it not 1 in 5 who develop chronic symptoms from EBV, HHV6 or Lyme. 1 in 5 is also small compared to 4 in 5, so they wouldn't be wrong even by your misconstrued version, but that isn't what they said so it is irrelevant.

Why do they mention EBV, HHV6 and Lyme? Well, I suspect because they are common infections that cause similar symptoms to ME and which have each been linked with causing ME, or ME-like disease. I don't think it is meant as an exhaustive list, but rather than attacking them, you could ask them why they picked these three, in a respectful way.

Pretty much everyone here thinks this research is top quality, if you don't like it, that's fine, but either engage respectfully or go and do something else. The last thing I want to see is you create a situation where these researchers decide not to engage with us because of a lack of basis courtesy. They don't have to do this research for us, and they certainly don't have to answer our questions and let us feedback into their work by engaging with us. They are doing that for our benefit, but you seem to be trying to ruin that.

One in five, in the case of bb, is substantial. A vector borne illness where longterm antibiotic treatment has been demonstrated to work in many chronic cases, I do not think should be classed with a nearly universal viral infection, EBV, to which most of us have largely adapted (except for the fact that it is correlated with increased risk of cancer--check pubmed for a rich and fascinating literature).

http://www.ncbi.nlm.nih.gov/pubmed/?term=epstein-barr+cancer

Anyway, I've just come back on here and I see 180 more comments--I am sure most are not addressed to me, but for instance this one was, and I don't have time to read them all. If you want to address me please tag me so I will see the comment when I come back here next. Or PM me.

 

[Gingergrrl]

If he knows the lyme literature

I am pretty sure that Dr. Davis knows the Lyme Literature and the subjects in this study are from Dr. Gordon who is an LLMD.

only got back on here just now--and I most definitely will PM you. It will certainly be by the end of this month

With all due respect, I don't think you realize how lucky you are to even be offered to have a Skype consult with Dr. Davis and you should take whatever time is offered to you vs. telling him when you will do it.

Anyway, I've just come back on here and I see 180 more comments--I am sure most are not addressed to me, but for instance this one was, and I don't have time to read them all. If you want to address me please tag me so I will see the comment when I come back here next.

No, the 180+ comments are not all directed toward you but if you are going to be so critical of the study and of Dr. Davis, then at minimum you should read this thread! I know you were addressing @snowathlete and not me, (so please forgive me snowathlete!) but your comments are a bit off-putting.

Just want to end with this quote and then I will take a step back from this.

In October, 2013, Davis was listed in The Atlantic as one of the greatest innovators currently working: "A substantial number of the major genetic advances of the past 20 years can be traced back to Davis in some way."

 

[Groggy Doggy]

I'll propose them again--Janet invited me to PM her in order to possibly skype with Ron. So, hope springs eternal!

I hope the Skype session happens! I have read many postings in the last week about the study; I am most likely mixing up some of the comments. I am glad that you posted your concerns here; no study is perfect.

 

[boohealth]

I am pretty sure that Dr. Davis knows the Lyme Literature and the subjects in this study are from Dr. Gordon who is an LLMD.



With all due respect, I don't think you realize how lucky you are to even be offered to have a Skype consult with Dr. Davis and you should take whatever time is offered to you vs. telling him when you will do it.



No, the 180+ comments are not all directed toward you but if you are going to be so critical of the study and of Dr. Davis, then at minimum you should read this thread! I know you were addressing @snowathlete and not me, (so please forgive me snowathlete!) but your comments are a bit off-putting.

Just want to end with this quote and then I will take a step back from this.

@Gingergrrl , an extemporaneous conversation would waste his time. Well thought out points to be expanded on in a skype convo would be much more effective and on point.

I have no personal gain by talking with him, only to offer a perspective that may be useful for his son. I also have a lot on my own plate, and obligations to meet in my own life that I'm sure you understand are a priority.

I don't have time to read this whole thread. That will have to be sufficient unto the day. Thx.

 

[temple88]

FWIW, my onset was PEM but I was fine as long as I didn't exert myself...until I got pregnant. My entire pregnancy was a 'crash' and from the day I delivered I had brain fog, joint pain, daily fatigue, etc. That was 8 years ago.

I was also one of the 2 CFS patients in Younger's MRI pilot that showed higher brain temp possibly correlating with neuroinflammation.

 

[Valentijn]

I have no personal gain by talking with him, only to offer a perspective that may be useful for his son. I also have a lot on my own plate, and obligations to meet in my own life that I'm sure you understand are a priority.

... So you criticize him on this thread, both professionally and personally, but you're still willing to do him a favor and take your precious time to Skype him about how you think he's getting things wrong

I'm not sure how anyone will be helped when you're approaching things with such an attitude. It sounds like such a conversation would be an extremely unpleasant experience for everyone, and I do hope Dr Davis feels free to reconsider his offer. No one should have to go through that.

 

[Ben H]

I'll propose them again--Janet invited me to PM her in order to possibly skype with Ron. So, hope springs eternal!

@Gingergrrl , an extemporaneous conversation would waste his time. Well thought out points to be expanded on in a skype convo would be much more effective and on point.

I have no personal gain by talking with him, only to offer a perspective that may be useful for his son. I also have a lot on my own plate, and obligations to meet in my own life that I'm sure you understand are a priority.

I don't have time to read this whole thread. That will have to be sufficient unto the day. Thx.

Hi @boohealth

I am glad you have questions and are able to talk with Ron. Good dialogue is what we want.

Incidentally I'd like to say that I think you have a lot to gain from talking to Ron, personally. It is an amazing opportunity that a lot of people would really love to have. I think it speaks volumes about Ron as a scientist, that he is willing to do this.

Anyway. I hope this thread can take a lighter perspective now


B

 

[A.B.]

@Ben Howell I'm curious what Ron thinks about familial clustering of the illness. The rationale behind studying severely affected is that the signal of the illness will be stronger in them. I will argue that families with multiple cases of the illness should be studied because the signal of the cause must be strongest there than anywhere else.

 

[boohealth]

... So you criticize him on this thread, both professionally and personally, but you're still willing to do him a favor and take your precious time to Skype him about how you think he's getting things wrong

I'm not sure how anyone will be helped when you're approaching things with such an attitude. It sounds like such a conversation would be an extremely unpleasant experience for everyone, and I do hope Dr Davis feels free to reconsider his offer. No one should have to go through that.

@Valentijn , you left out the first lines of my post To leap now without preparing would waste his time.

As to the rest, @Gingergrrl suggested I read this entire thread (which expands voluminously daily) and consider myself lucky and act now. I don't have time to read this whole thread. Nor would it necessarily be useful.

I did criticize him. I'll have to take the blows for that on PR, some of which I've likely missed because people aren't tagging me. But it was very generous of Janet to answer as she did, and I'm happy about that.

 

[eastcoast12]

Just wanted to say thanks to Ben, Prof. Davis, Linda (I think sorry if I'm wrong about the name rose49), dr. N and everyone else. All of you are pretty awesome.

 

[justy]

@Ben Howell I'm curious what Ron thinks about familial clustering of the illness. The rationale behind studying severely affected is that the signal of the illness will be stronger in them. I will argue that families with multiple cases of the illness should be studied because the signal of the cause must be strongest there than anywhere else.

yes - as I noted earlier in the threadthis is one of my interests - 3 generations in my family so far down the maternal line - and its not just environmental as I didn't grow up with my birth mother who has ME.

Also my comments earlier about people with long remissions was a question not just a comment - I would like to know how this might work with the hypometabolic state - quite a lot of us have had long remissions, only to get sick again, and usually the second time around it is worse.

 

[KME]

Pregnancy involves a highly anabolic state. Its accelerated metabolism. Maintaining hypometabolism in that state might be very difficult. However pregnancy might itself wind up as a trigger for hypometabolism, at least theoretically. Once the pregnancy ends there might be a rebound. I would like to know if anyone who improved during pregnancy was better or worse off after the pregnancy ended.

There's a good study on this http://www.emerge.org.au/wp-content...of-CFS.-Arch-Intern-Med-2004-1644-401-404.pdf
NB There’s one very important error in the abstract of the paper. It is stated that 30% got worse after having their child – in fact, the percentage should read 50%, as stated in the main body of the paper. The discussion highlights the positives, which is always nice, but I feel it downplays the negatives. 50% is not a small number, and deterioration is not an insignificant thing, particularly with a new baby on the scene.

...and now I see @Effi already linked to this study!

 

[Ben H]

@Ben Howell I'm curious what Ron thinks about familial clustering of the illness. The rationale behind studying severely affected is that the signal of the illness will be stronger in them. I will argue that families with multiple cases of the illness should be studied because the signal of the cause must be strongest there than anywhere else.

Hi @A.B.

This is where the genetic part of the studies are likely to come into play.

I am in total agreement with Ron that strongest signals would logically be expected to be found in the most severely ill. What is the basis of your argument for the strongest signal (as opposed to just a signal) being in families? If they are all mild, that may not be so. The SD's may not be far from the norm unlike the recent Naviaux study, and Whitney for example.

I agree that families diagnosed with ME/CFS would be a very important study. Especially from a genetic perspective. I would love to see it run. It all comes down to funding, this is all still publically funded so while I am sure Ron would like to do a study on families with ME/CFS, there is only a limited pot to go round.

I will note this down as I think its a really good, interesting question and if Ron has the time, I'd love to see his answer.

Thanks,

B

 

[Ben H]

yes - as I noted earlier in the threadthis is one of my interests - 3 generations in my family so far down the maternal line - and its not just environmental as I didn't grow up with my birth mother who has ME.

Also my comments earlier about people with long remissions was a question not just a comment - I would like to know how this might work with the hypometabolic state - quite a lot of us have had long remissions, only to get sick again, and usually the second time around it is worse.

I've already noted this down Justy, don't worry


B

 

[A.B.]

What is the basis of your argument for the strongest signal (as opposed to just a signal) being in families?

I am making the assumption that familial clustering is not merely due to chance (there is evidence to suggest it's not). There must be a shared genetic or environmental factor involved. I remember reading about a study on this subject where people in the same household that were not blood relatives had a higher risk of becoming ill (blood relatives had even higher risk).

The Rituximab group from Norway has already found some a genetic component in a family with multiple cases of the illness. I think there is probably more to find.

Evidence for a heritable predisposition to Chronic Fatigue Syndrome
http://bmcneurol.biomedcentral.com/articles/10.1186/1471-2377-11-62

Update from Haukeland on the genetic predisposition project
http://forums.phoenixrising.me/inde...-on-the-genetic-predisposition-project.44538/

 

[Ben H]

I am making the assumption that familial clustering is not merely due to chance. There must be a shared genetic or environmental factor involved. I remember reading about a study on this subject where people in the same household that were not blood relatives had a higher risk of becoming ill (blood relatives had even higher risk).

The Rituximab group from Norway has already found some a genetic component in a family with multiple cases of the illness. I think there is probably more to find.

I totally agree. Im sure there will be a genetic component, and it is being studied.

I just wondered why you thought the strongest signal would be found there, as oppose to a signal.

I don't mean to sound pedantic-I am genuinely curious and would be good to know for when the question is put across.



B

 

[Hutan]

I'm curious what Ron thinks about familial clustering of the illness. The rationale behind studying severely affected is that the signal of the illness will be stronger in them. I will argue that families with multiple cases of the illness should be studied because the signal of the cause must be strongest there than anywhere else.

I just wondered why you thought the strongest signal would be found there, as oppose to a signal.

I hope @A.B. won't mind me jumping in here. I had to read that first quote above a couple of times to get the distinction that I think A.B. is making.

The signal of the illness will be strongest in those that are severely ill - as in the impact it is having on the body.

But the signal of the cause of the illness will be strongest in multiple cases in a family. These signals of causality might be genetic or related to onset (triggering factors). There may even be clues from the metabolites as the outcomes may be clearer with less genetic diversity and especially if there is a gradient of illness severity within the family.