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

[osisposis]

if you look at hibernation it's known to be a protective mode for further damage accuring in TBI. GWI Vet's with diagnoses of PTSD have recently been realized as having TBI, they put TBI/PTSD on it because depression was involved witch lead to diagnoses of PTSD in the first place,it's been reconized the TBI/PTSD has been caused by chemical exposures.
I was diagnosed with PTSD following my exposures in water damaged homes, I knew it was really TBI as did a few close family members, when the change in your personality is hudge people close to you notice, while others that don't see you often will think the PTSD diagnoses might explain it. depression and PTSD has been connected to inflammation, mood disorders are tied to certain parts of the brain, several pointed to in FIBROMYALGIA. FM may point directly to environmental exposure.
studies in identical twins have shown that you may have genetics making you seceptable to certain disease but that disease may never accure without a environmental exposure to bring it out. some exposures point to bring out dormant viruses that may never bother you until post exposure, and also you can become seceptable to infectious diseases in general.
some ME/CFSer's could be ill from long term exposures and not really even know that's what made them ill. exposures to chemicals and molds and mold byproducts can change the stomach PH, the stomach is not separate from the airways involvement with environmental exposures and exposures can not only be through inhalation but also dermal and ingestion. all 3 of these are involved in inhalation exposures. theres been a lot more research done on GWI /ME/CFS(me/cfs,fm,mcs,ibs,ect.) than most probably realize.

 

[Ben H]

Hi guys,

Just a quick one- myself and Janet are collating these questions. Some may be answerable sooner than others, but they are all getting attention! There have been many many questions and are we are doing our very best to get them sorted.

Will comment on the ones I may be able to help with tommorow.

Thanks!

Ben

 

[mermaid]

Hi guys,

Just a quick one- myself and Janet are collating these questions. Some may be answerable sooner than others, but they are all getting attention! There have been many many questions and are we are doing our very best to get them sorted.

Will comment on the ones I may be able to help with tommorow.

Thanks!

Ben

Thank you Ben!

 

[BruceInOz]

No one would dispute this. But it is the category of conditions mentioned that is worrisome. After all, our disease is not diagnosed or perceived in a vacuum. We fight against the onus of a "mental" label daily - or at least a label that usually goes hand in hand with talk therapies and psychogenics.. There are ramifications to this association, at least potentially. I cannot see how this comparison with depression and PTSD will help mitigate that bias, and it is puzzling out of all the diseases and conditions, these two would be selected. How about MS or brain cancer? Or Parkinsons and RA? Any help in explaining the choices would be appreciated.

Why do you assume such a comparison will find similarities with depression and PTSD? If strong differences are found won't that refute a "mental" label?

 

[dreampop]

I know Ron would love to analyze spinal fluid. However, he is extremely dedicated to finding a biomarker that is accurate and non-invasive! And inexpensive. Same with Naviaux. In the Severely Ill Big Data Study he would not even ask anyone for spinal fluid. It would be too hard on the patients. He's pretty confident that we can get there without such invasive procedures. Using the stress test is another example. It's too hard on people. We do not want to make people worse in the process of diagnosing them if that can be avoided! I'm not sure what the question was - I'm having trouble getting through all these posts, but hopefully this answers at least part of the question!

That's a good point I hadn't considered the impact of a spinal tap on the severely ill and the inconveniences of it as a diagnostic tool. Thanks for the reply!

 

[duncan]

Why do you assume such a comparison will find similarities with depression and PTSD?

I do not assume this.

By virtue of the character of the disorders noted for comparison, I fear it is others who will make unwise and unfair and even harmful assumptions.

But perhaps your second point is accurate, and the authors intent was to demonstrate conclusively differences between ME/CFS and depression and PTSD. I just wonder if they are the best starting points - if only because of the nature and history of ME/CFS politics, and as much as we might like, we cannot so easily disentangle ourselves from those.

I say this with the utmost respect for the authors and their study.

 

[alex3619]

That's a good point I hadn't considered the impact of a spinal tap on the severely ill

Its not a great diagnostic tool at any time due to the risks. However some who are very sick with acute problems might need answers fast. Under those conditions a spinal tap is sometimes worth the risk.

Similar issues with the 2 day CPET mean its not ideal as a diagnostic test.

A blood test or scan are the Holy Grails of diagnostic testing here.

 

[Hutan]

Why do you assume such a comparison will find similarities with depression and PTSD? If strong differences are found won't that refute a "mental" label?

If strong differences are found between the metabolites of people with ME/CFS and depression and PTSD, that doesn't provide proof that ME/CFS isn't psychological - it could be just a different sort of outcome of faulty thinking, faulty behaviour...

Problems that are labelled 'depression' and 'PTSD' could well be caused, in at least a proportion of people, by the same things that may cause ME/CFS - at least as secondary effects. Therefore, perhaps strong differences won't be found. Instead similarities may well be found.

Whatever is found, comparisons of metabolites with depression and PTSD probably won't head off beliefs that ME/CFS is something that can be fixed by thinking differently and having a healthier lifestyle.

I guess the comparisons between ME/CFS and depression need to be made at some point. But, like others, I found it worrying that the following sentence

The study of larger cohorts from diverse geographical areas, and comparison with related medical disorders like depression and posttraumatic stress disorder, will be needed to validate the universality and specificity of these findings.

was included in the Naviaux paper, especially as one of only six sentences making up the Conclusion section. Some of the subsequent comments such as treatment not necessarily needing to be anything radical but just things like adjustments to diet haven't allayed my worry.

I have confidence in the intellect and motivation of the researchers involved, so I'm trying not to worry and just Iook forward to more information.

 

[alex3619]

But perhaps your second point is accurate, and the authors intent was to demonstrate conclusively differences between ME/CFS and depression and PTSD.

This would be mandatory I would think, at least with depression. If depression were not used as a comparison some would undoubtedly say they are just measuring depression, and it was take much longer for a test to be accepted.

PS Something that I have hinted at elsewhere but needs to be said, while there is risk the BPS crowd might claim similarities mean ME or CFS are psychological, there is the other side. Finally we might have some proof that psychological causation of depression is unfounded, that its physical. Sure, experiential pain, such as bereavement, might trigger depression, but after that depression is physical even if we don't fully understand it yet.

 

[alex3619]

In order to demonstrate specificity for a test, typically required at 95%+, you have to show the test does not wrongly detect other diseases. Sensitivity is about it detecting ME or CFS or ME/CFS accurately.

[Oops, wrongly used "specificity" twice, now corrected. High sensitivity and specificity are important in diagnostic tests. Only in some areas of psychiatry is this lacking, with high sensitivity but abysmal specificity. Indeed I argue the sensitivity is far too high and false diagnoses are common.]

 

[duncan]

This would be mandatory I would think, at least with depression. If depression were not used as a comparison some would undoubtedly say they are just measuring depression, and it was take much longer for a test to be accepted.

Perhaps. I would suggest timing should be a factor.

I also don't know that taking the high road isn't appropriate - why should we concede anything to the rubes who will conflate the two distinct diseases/disorders? Why compare to depression straight out of the gates simply because some will demand we do so eventually? Why create an impression in the study's narrative, even fleetingly, that arguably re-enforces a misconception in a study whose salient findings seem to dispel that very misconception?

PS Something that I have hinted at elsewhere but needs to be said, while there is risk the BPS crowd might claim similarities mean ME or CFS are psychological, there is the other side. Finally we might have some proof that psychological causation of depression is unfounded, that its physical. Sure, experiential pain, such as bereavement, might trigger depression, but after that depression is physical even if we don't fully understand it yet.

Yes, but this is a different battle.

 

[Never Give Up]

Yesterday's WaPo article still has only 6 comments. Anyone care to step up?

https://www.washingtonpost.com/news...uman-version-of-hibernation/?tid=ss_tw-bottom

 

[dreampop]

Its not a great diagnostic tool at any time due to the risks. However some who are very sick with acute problems might need answers fast. Under those conditions a spinal tap is sometimes worth the risk.

Similar issues with the 2 day CPET mean its not ideal as a diagnostic test.

A blood test or scan are the Holy Grails of diagnostic testing here.

True, but its still better than nothing. Anyway, I was asking more for insight into the disease process than a diagnostic tool, which would a bonus. A hypo metabolic brain is a fascinating thing.

 

[dreampop]

Also @Ben Howell is a beast and props to him

 

[dreampop]

@Rose49 I believe that Dr. Daniel Peterson in Nevada has a significant collection of spinal fluid samples taken from patients over the years. Maybe Ron could use them if he has an idea for a study.

That would be an elegant solution to the problem, though I don't know if some metabolites decay or can be stored well, if they could be that would be amazing.

 

[alex3619]

That would be an elegant solution to the problem, though I don't know if some metabolites decay or can be stored well, if they could be that would be amazing.

The half life of some metabolites might be very short. I imagine that it will be somewhat difficult to do long term storage. This is definitely a question that metabolomic researchers can answer.

 

[Gingergrrl]

The half life of some metabolites might be very short. I imagine that it will be somewhat difficult to do long term storage. This is definitely a question that metabolomic researchers can answer.

That is interesting and not something I had thought of. I am attempting to get the Metabolon run on my blood sample that was bio-banked for this purpose in May 2015 to have as a baseline (and then do the test again in the next year or two). Do you think 1.5 years of it being bio-banked would make it not as valid?

 

[mermaid]

This would be mandatory I would think, at least with depression. If depression were not used as a comparison some would undoubtedly say they are just measuring depression, and it was take much longer for a test to be accepted.

PS Something that I have hinted at elsewhere but needs to be said, while there is risk the BPS crowd might claim similarities mean ME or CFS are psychological, there is the other side. Finally we might have some proof that psychological causation of depression is unfounded, that its physical. Sure, experiential pain, such as bereavement, might trigger depression, but after that depression is physical even if we don't fully understand it yet.

Isn't the problem always with the BPS approach that they have an answer for everything, in that they will agree that there are physical changes and signs, but then claim that they come AFTER the person becomes depressed (ie that the psychological aspect comes first)? So it's a chicken and egg thing.....

 

[alex3619]

they have an answer for everything

The very definition of what Sir Karl Popper called nonscience. Claims are not proof though, and we wont change their minds but if the rest of the medical profession wakes up then they are done.

 

[alex3619]

Do you think 1.5 years of it being bio-banked would make it not as valid?

That is a question for one of the real experts, and would depend on the storage protocol and other things.