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

[Hip]

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.

That's very, very interesting, @paolo.

So with Borrelia-induced ME/CFS, just like with virally-induced ME/CFS, the ME/CFS metabolic state could be the body's way of protecting itself from the tissue damage that these pathogens might otherwise cause.

 

[Jill]

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.

I don't see any problem as dr Nav has made reference in a kind of oblique way to this .i know they can't know the answer , but Ron knows a lot from the trauma study about the CDR response. Yes he can only speculate but he has seen the same phenomena with Whitney so I think it is an extremely valid question. Most of us have had similar exerperience with supplements but not so rapid a response to a drug which is slow release and could be effecting the CDR response. Somewhere in the massive diagram shown at London the must be a pathway - cox 1/cox2 .

 

[Janet Dafoe]

@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

That is so interesting. I sent them a copy of your message. I'm not sure if they will answer any more right now, but they will be interested to read this. Good luck!

 

[Janet Dafoe]

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.

You guys are so nice! Don't worry about asking questions. Ron won't answer things that are out of his ballpark. He'll answer what he can. I don't want to cut off you expressing your ideas on here! Who knows what idea might make a difference?! Ron really is interested, but just time-limited. We think about you all, all the time, and I know that Dr. Naviaux does too. Do at least one thing nice for yourself today! I told Ben to eat some ice cream, and he did!

 

[daisybell]

@Rose49 you guys are the best!!!
I can't tell you how much it means to know that you are thinking about us all, and working so hard on helping us. Your reply above has me in tears with hope, gratitude, and I just want to give you a huge hug to say thank you....

 

[Janet Dafoe]

@Rose49 you guys are the best!!!
I can't tell you how much it means to know that you are thinking about us all, and working so hard on helping us. Your reply above has me in tears with hope, gratitude, and I just want to give you a huge hug to say thank you....

 

[Comet]

You guys are so nice! Don't worry about asking questions. Ron won't answer things that are out of his ballpark. He'll answer what he can. I don't want to cut off you expressing your ideas on here! Who knows what idea might make a difference?! Ron really is interested, but just time-limited. We think about you all, all the time, and I know that Dr. Naviaux does too. Do at least one thing nice for yourself today! I told Ben to eat some ice cream, and he did!

@Rose49, you guys are the best parents 2 million or so people ever had! And that, of course, includes Dr. Naviaux and your support teams too!

Thank you all.

 

[TiredSam]

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!"

'night Ron

 

[BruceInOz]

@Rose49, I want to add my voice to the thanks to you, Ron and Dr Naviaux for sharing so much about the research through these forums. Also, remember that for everyone that thanks you there are many more who are so very appreciative but don't feel that outward expressions of thanks are their thing or whatever (I nearly didn't write this, for example). I also note that at the moment while there are two pages of PR members currently browsing PR, there are also 12 pages of non-members and 2 pages of robots. Not so long ago I was one of those non-members and I would hazard a guess that many of these people (and the people the robots reach) are also very appreciative of the time you spend sharing with us. Thanks again.

 

[geraldt52]

'night Ron

LOL...that's priceless!!! Thank god we still have some humor...

 

[actup]

@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

@Jill, just curious but does your partner have tachycardia and /or low blood pressure while on NSAIDs? I trialed meloxicam for 4 mo last year. Results were very good initially but after 4-6 wks or so developed an odd flu like syndrome (very different from my usual one which responds very well to Valtrex) with shortness of breath after walking 10 feet. It took me a couple of months to realize my orthostatic intolerance had become severe. No palpitations and only mild dizziness or would have picked up on it sooner. Heart rate 140-150 after standing with BP less concerning at 85-95/40-50. Tachycardia is a less well known s/e of NSAIDs. Got hr down to my usual 110 upon standing after stopping drug. Thought I'd share my experience fwiw. I currently use high dose Coq10 ( powder) which helps a great deal. Best of luck in sorting things out!

 

[paolo]

That's very, very interesting, @paolo.

So with Borrelia-induced ME/CFS, just like with virally-induced ME/CFS, the ME/CFS metabolic state could be the body's way of protecting itself from the tissue damage that these pathogens might otherwise cause.

Exactly @Hip.

I do think so! As Naviaux wrote in his paper, the hypometabolic state might be "a fundamental response to oppose the spread of persistent viral and intracellular bacterial infections".

In Lyme disease we can see how effective the CFS-type response is at protecting from tissue damage. In fact, as mentioned, those who develop tissue damage don't have CFS-like issues; on the other hand those Lyme patients who develop full CFS-like symptoms, don't show any tissue damage.

 

[paolo]

That's very, very interesting, @paolo.

So with Borrelia-induced ME/CFS, just like with virally-induced ME/CFS, the ME/CFS metabolic state could be the body's way of protecting itself from the tissue damage that these pathogens might otherwise cause.

If that was true, understanding the hypometabolic state which underlies chronic fatigue syndrome, could offer a way to treat severe infections: it might be useful to artificially induce a CFS-like hypometabolism in order to prevent tissue damage during acute infections!

 

[Hip]

If it was true, understending the hypometabolic state which underlines chronic fatigue syndrome, could offer a way to treat severe infections: it might be useful to artificially induce a CFS-like hypometabolism in order to prevent tissue damage during acute infections!

That's a very interesting idea. So just as doctors sometimes put patients with a traumatic brain injury into medical coma in order to protect the brain and to allow the brain to try to heal, during severe, life-threatening viral and intracellular bacterial infections, doctors could induce the hypometabolic state in a patient, in order to protect their tissues from the infection, until the antivirals, antibiotics or antifungals they deploy start to work.

This idea that the ME/CFS hypometabolic state could be a built-in bodily response to protect against certain types of infection perhaps links up to Michael VanElzakker's sickness behavior response theory of ME/CFS: as we know, in healthy people, the sickness behavior state is a coordinated set of responses designed to help a person or animal fight off an acute infection, like the flu or a gastrointestinal infection.

I wonder if in people with a significant acute infection like the flu, who are in the full throws of sickness behavior, there is also this same hypometabolic state? Sickness behavior is mainly an infection-induced set of behavioral responses that allow the animal to best cope with an acute infection (eg, the animal is made to feel fatigue, so that it rests and does not expend physical energy, and is placed in a low mood / depression, so that no mental energy is expended; in this way, the body's resources can be devoted to fighting the infection); but alongside these beneficial behavioral responses, some types of infection (viral and intracellular bacterial) might conceivably also induce this beneficial hypometabolic state. In that way, an animal is both behaviorally and metabolically configured to best fight the infection.

I wonder if anyone has looked to see if this hypometabolic state might also occur during say an acute infection with the flu, because when you have the flu, you feel quite similar to how ME/CFS patient's always feel.

 

[paolo]

I wonder if anyone has looked to see if this hypometabolic state might also occur during say an acute infection with the flu, because when you have the flu, you feel quite similar to how ME/CFS patient's always feel.

As far as I can understand, the hypometabolic state that Naviaux and colleagues have found in CFS is different from the metabolic response that you find during an acute infection. It is more like a second line of defense, that the body can use when the infection has not been defeated by the initial immune response.

 

[Nielk]

As far as I can understand, the hypometabolic state that Naviaux and colleagues have found in CFS is different from the metabolic response that you find during an acute infection. It is more like a second line of defense, that the body can use when the infection has not been defeated by the initial immune response.

I thought that they explained it as an extended period of the state when an acute infection is present. They stated that usually this state is resolved a short time after an infection but if it continues beyond six months it is "CFS".

 

[Chris]

@Hip--re your question about heart viruses, look up Martin Lerner's essays from some years ago--he figured out that some--just some--patients with ME had a virus--EB and/or CMV--that infected the heart muscle, and that some of them could be treated and even cured with antivirals. This stuff never got the attention it deserved, but I think still stands.

 

[Hip]

@Hip--re your question about heart viruses, look up Martin Lerner's essays from some years ago--he figured out that some--just some--patients with ME had a virus--EB and/or CMV--that infected the heart muscle, and that some of them could be treated and even cured with antivirals. This stuff never got the attention it deserved, but I think still stands.

Ah yes, I forgot about Lerner's interest in the heart. However, looking at this article from 2000, it seems that Lerner only found abnormal electrocardiograms that he thought were indicative of heart damage, but he did not demonstrate any actual damage.

I haven't looked into this much, but my guess is that it's possible these abnormal electrocardiograms he found were just due to POTS, which causes abnormal ECGs (through dysautonomia I should think ).

There are various cardiovascular issues in ME/CFS (listed here), but not myocarditis, nor heart attacks.

 

[adreno]

Inducing a hypometabolic state to reduce injury is not a new idea:

Induced hypothermia after cardiopulmonary resuscitation provides organ protection and is currently considered standard of care in clinical practice. An increasing number of reports indicate that induced hypothermia is also beneficial in other conditions of hypoxia-induced organ injury, including brain injury, intestinal ischaemia-reperfusion injury and acute lung injury.

The mechanism of the protective effect is thought to be caused by a reduction in metabolism. A hibernation-like state, characterised by hypothermia, bradypnoea and a reduction in metabolic rate, was induced in animals that normally do not hibernate, after inhalation of hydrogen sulphide. This state was termed a ‘suspended animation-like state’.

In critically ill patients, an exaggerated systemic inflammatory response is common, which often results in multiple organ injury. Inducing a hypometabolic state during critical illness may limit organ injury by reducing oxygen consumption, constituting a fascinating new therapeutic perspective for the treatment of critically ill patients

http://www.njmonline.nl/getpdf.php?id=921

 

[Sidereal]

Something similar could be happening in ME/CFS if there is an excess of hydrogen sulphide producing pathogenic bacteria in the gut.