Community Symposium on molecular basis of MECFS! DISCUSSION THREAD!

[Michael_venice]

Ron says: We did one test for all viruses, parasites, bacteria, funguses including molds, both those known to man and those that have never been discovered (looking at the sequence tells you that they are evolutionarily related to another virus). This test looked for particles or cells from those organisms and sequenced the DNA inside of them. In that test, we didn't find any pathogens. All we found were things that are in normal healthy people.

We did another, different, test for DNA in the blood from some specific DNA viruses (listed in that slide). There was some viral DNA in some patients but more healthy controls had the same viruses, which are common. We have not yet tested the RNA viruses, which we are planning to do. We are developing a test to do this with on a very small sample of blood (remember, we could only get blood once from these severe patients, and we have to be very careful to get as many tests from that as we can). Enteroviruses are RNA viruses.

There may be viruses that don't ever get into the blood, but they are very difficult to test for in severe patients because the procedures are invasive.

First, thank you for writing so much and helping with processing. It was so great that the seminar was available, but I was frying out over and over.

May I ask—are you edging around some of the ideas about a vagal infection? I haven't quite figured if that's at odds with some of these more recent studies. There were some very compelling ideas in that.

 

[Katrina]

Hey @Katrina

I hope you can still make it! I'm not sure if that is the same room, but don't worry, air shall be provided...even some of the scientists need it I am told

On a serious note the room will be totally suitable for the purpose of the Symposium of course @AshleyHalcyoneH

Hoping you can make it!


B

Thank you - I made it !

 

[Sing]

I am keen to know about the enteroviral RNA results when Dr. Davis tests for them! Dr. Byron Hyde and others working in the field in earlier years thought the instigators for ME were enteroviruses.

 

[Nickster]

My son tested positive for the cocksackie virus and it was ordered by Dr Chia thru a blood test. It will be interesting to see the results from Ron's RNA testing. My son has always thought "it" was in his stomach/gut.

 

[Hip]

Ron says: We did one test for all viruses, parasites, bacteria, funguses including molds, both those known to man and those that have never been discovered (looking at the sequence tells you that they are evolutionarily related to another virus). This test looked for particles or cells from those organisms and sequenced the DNA inside of them. In that test, we didn't find any pathogens. All we found were things that are in normal healthy people.

We did another, different, test for DNA in the blood from some specific DNA viruses (listed in that slide). There was some viral DNA in some patients but more healthy controls had the same viruses, which are common. We have not yet tested the RNA viruses, which we are planning to do. We are developing a test to do this with on a very small sample of blood (remember, we could only get blood once from these severe patients, and we have to be very careful to get as many tests from that as we can). Enteroviruses are RNA viruses.

There may be viruses that don't ever get into the blood, but they are very difficult to test for in severe patients because the procedures are invasive.

Yes, this is problem with the enteroviruses linked to ME/CFS (namely coxsackievirus B and echovirus): in chronic infections, very few enteroviruses are found in the blood; in chronic infections, enterovirus is primarily found in the tissues, not the blood.

In the original British research on enteroviruses in ME/CFS, they often took muscle tissue biopsies from patients and tested those; however, because muscle biopsies are painful and leave a scar, Dr Chia came up with a new idea for tissue testing: namely, taking stomach tissue samples (via an endoscope) instead, which is not painful, and easier to do.

For detecting chronic enterovirus, the alternative to tissue samples is sensitive antibody blood tests: the British research used neutralization antibody testing, which is a very sensitive technique. John Chia found that the neutralization assay was the only type of blood test that could reliably detect chronic enterovirus infections (all the other blood tests he tried were not sensitive enough to detect these viruses). Dr Chia currently uses the micro-neutralization tests provided by ARUP Lab for testing his ME/CFS patients, and/or stomach biopsy testing.

Further info: Enterovirus Foundation: Testing for chronic enteroviral infections

 

[perrier]

Yes, this is problem with the enteroviruses linked to ME/CFS (namely coxsackievirus B and echovirus): in chronic infections, very few enteroviruses are found in the blood; in chronic infections, enterovirus is primarily found in the tissues, not the blood.

In the original British research on enteroviruses in ME/CFS, they often took muscle tissue biopsies from patients and tested those; however, because muscle biopsies are painful and leave a scar, Dr Chia came up with a new idea for tissue testing: namely, taking stomach tissue samples (via an endoscope) instead, which is not painful, and easier to do.

For detecting chronic enterovirus, the alternative to tissue samples is sensitive antibody blood tests: the British research used neutralization antibody testing, which is a very sensitive technique. John Chia found that the neutralization assay was the only type of blood test that could reliably detect chronic enterovirus infections (all the other blood tests he tried were not sensitive enough to detect these viruses). Dr Chia currently uses the micro-neutralization tests provided by ARUP Lab for testing his ME/CFS patients, and/or stomach biopsy testing.

Further info: Enterovirus Foundation: Testing for chronic enteroviral infections

Yes'm my daughter had the biopsy and it was positive. But treatment is the issue. The herb he has isn't tolerated by everyone. And I'm not sure what else there is for enteroviruses.

 

[Hip]

And I'm not sure what else there is for enteroviruses.

I compiled a large list of off-label drugs and supplements which studies indicate have anti-enterovirus effects (see this post); but the problem is that most of these studies were in vitro, and may not necessarily have the same effects in vivo.

But recently I did some pharmacokinetic calculations, and through those calculations I found a few antivirals in that list that should work in vivo. I am going to be posting a new thread on these in vivo enterovirus antivirals soon (but I need to double check all my pharmacokinetic calculations first, as it is easy to make silly mistakes doing maths when you have brain fog).

 

[slysaint]

@Janet Dafoe (Rose49) @Ben Howell
I might be way off here as I am no scientist, but while searching for something else I came across this on Huntingtons disease:

About Abnormalities in Energy Metabolism
By Stephanie Liou 26 Jun, 2011 Abnormalities in energy metabolism
The mutant huntingtin protein has been found to disrupt cellular metabolism, the process by which cells make energy. It interacts with key proteins needed to produce energy and causes damage to mitochondria, the ‘energy factory’ of the cell. Mitochondria produce energy in the form of molecules known as ATP (for “adenosine triphosphate”). The amount of ATP available to cells is lower in Huntington’s Disease (HD), which makes cells more susceptible to damage by toxic compounds. Scientists are looking into drugs and supplements that increase the amount of energy available in cells, as they might be possible candidates for treating HD. This article explains how huntingtin affects cellular metabolism, which is important for understanding how these drugs may improve energy production in the cell.

Rest of article here:
https://web.stanford.edu/group/hopes/cgi-bin/hopes_test/about-abnormalities-in-energy-metabolism/

some of it sounds similar to Rons findings.

 

[perrier]

I compiled a large list of off-label drugs and supplements which studies indicate have anti-enterovirus effects (see this post); but the problem is that most of these studies were in vitro, and may not necessarily have the same effects in vivo.

But recently I did some pharmacokinetic calculations, and through those calculations I found a few antivirals in that list that should work in vivo. I am going to be posting a new thread on these in vivo enterovirus antivirals soon (but I need to double check all my pharmacokinetic calculations first, as it is easy to make silly mistakes doing maths when you have brain fog).

Thank you.

Someone please help me with PEM.

My daughter cannot get it down.

She is in bed.

It never stops

 

[Janet Dafoe]

First, thank you for writing so much and helping with processing. It was so great that the seminar was available, but I was frying out over and over.

May I ask—are you edging around some of the ideas about a vagal infection? I haven't quite figured if that's at odds with some of these more recent studies. There were some very compelling ideas in that.

Ron says he has no way to look at the vagus nerve for viruses in severely ill patients. He has thought it was an interesting idea.

 

[Gingergrrl]

Thank you. Someone please help me with PEM. My daughter cannot get it down. She is in bed. It never stops

I wish I had an idea that could be helpful for your daughter and your posts always break my heart. Is she able to travel to see any doctor at this time, even locally? I don't want to take this thread off-track but I'm hoping with so many smart people, we could brain-storm something that I am not thinking of.

Edit: I just saw something similar you posted in another thread so I will reply there to keep this one on track.

 

[valentinelynx]

This was an amazing symposium. It must have been so complicated to organize. Thank you so much to organizers and attendees. @Janet Dafoe (Rose49) @AshleyHalcyoneH @ChrisArmstrong

My mother had to watch most of it instead of me because watching even a bit that I did manage to watch was too taxing for me, but it was finally something worth crashing over

Yes. I am likewise so glad I was able to bring my husband along... to remember the content of the fascinating presentations! The best part for me, which I will always remember, is meeting @Janet Dafoe (Rose49) & Ron Davis in person. Such warmth and great humanity. Thank you for making my trip worthwhile (I am paying for it right now, and I don't mean the $$!) Zero regrets & a million thanks to you wonderful people.

 

[valentinelynx]

Me, too, and I would also love to hear from Dr. Schiebenbogen and Cell Trend in addition to Fluge & Mella and Kolibri.



Hey, that's me (sarcasm)... well actually the non-athletic part is not sarcasm

Me, too: want to hear about CellTrend study—someone in the symposium mentioned a similar finding to CellTrend's I think? I could be remembering incorrectly, but whoever it was didn't appear to be aware that someone else had found autonomic antibodies? Someone can correct, clarify, maybe? Brain is mush after travel, symposium and enjoying being in the Bay Area with wonderful weather by taking a short walk in a park in the hills. I'm paying the price, but it was worth it.


Hey, that's me (sarcasm)... well actually the non-athletic part is not sarcasm [/QUOTE]

Is it OK to be (formerly) "extraordinarily intelligent, nerdy" and athletic? Of course, it's the former athletic thing that gets me in the most trouble with denial of my current condition.

 

[valentinelynx]

I think that would make sense.

My ME has become very much worse with menopause.

Yes, I believe that is the case with myself, as well.

 

[valentinelynx]

I'm trying to reconcile ME epidemics with Davis's report that they have not found any viral DNA for the viruses they've tested as per this screenshot from his presentation yesterday.

I don't see any of the viruses Davis tested in the enterovirus tree that Dr Hyde contends is the cause of ME and is an "analog to polio".


View attachment 23055 View attachment 23056

Dr. Davis did mention, and think this is key: they have not been able to assay tissue, only blood, so viruses or other pathogens sequestered in tissues such as gut, muscle, spinal cord or brain may remain undiscovered/unstudied by their procedures. The only approach to tissue assays mentioned at the symposium, in my recollection, is that studies of CSF are an approach to the CNS without being a direct biopsy of brain or spinal cord.

This is the main thing I wish I'd been able to bring up/underscore to the researchers at the symposium. Hopefully, being smart folks, they are fully aware of this deficiency of the research to date...

 

[valentinelynx]

Great symposium! Thanks to everyone involved!.

While watching Ron Davis speak about the nano-needle technology again, I wondered if it would be possible to see if there is a change in the cellular impedance of rituximab responders. I don't know for sure, but it seems possible that some of these patients would have had pre-treatment blood samples stored that could be used for "before and after" comparisons.

Likewise, it might be interesting to run the test on patients in "remission," even more so if they have viable blood stored from when they were symptomatic for comparison.

Obviously, I'm just curious if the test can not only differentiate between healthy people and people with ME, but might also be able detect the change in course of the disease in those who have significantly improved or have become asymptomatic. This might be tremendously valuable in objectively validating the success of treatments.

Yes, and I would very much like to know what is different about my biochemistry/physiology now, during my "post-symposium/post-travel" crash than before.

 

[Janet Dafoe]

Yes. I am likewise so glad I was able to bring my husband along... to remember the content of the fascinating presentations! The best part for me, which I will always remember, is meeting @Janet Dafoe (Rose49) & Ron Davis in person. Such warmth and great humanity. Thank you for making my trip worthwhile (I am paying for it right now, and I don't mean the $$!) Zero regrets & a million thanks to you wonderful people.

Oh, gosh, so nice of you. I was so glad to meet you after reading all your great posts. You are lovely. I'm sorry you crashed. I kind of did too but I know it's nothing like you! Feel better!

Now I can picture you!

 

[soofke]

wish I could've been there, it almost sounds like fun now that the critters are gone I can feel (due to fasciculations) where they were located and they'd have to pick the exact right spots to biopt....1 cm to the left or right and everything's working fine

 

[lilpink]

Yes, I believe that is the case with myself, as well.

Sorry to hear that.

 

[mariovitali]

IMHO using any medication to treat this disease must be done very cautiously At least in the long run. I also believe that Mark Davis work is exceptional but please find the cause and don't treat the symptom (...in this case it's ER Stress)


There is an increasingly number of people realising that there are many people here that got CFS after taking specific medications (here is an example of Accutane) :

My illness began after using Accutane for 6 weeks when I was 18 years old. Accutane is associated with autoimmune illnesses including Crohn's and IBD, as well as changes in DNA transcription and methylation patterns in T-cells

http://forums.phoenixrising.me/index.php?threads/rituximab-for-mcs-and-cfs.53154/#post-889581

I will try to keep it simple :


1. Some Medications generate Oxidative Stress and also reactive metabolites while being metabolised by the Liver
2. Oxidative Stress and Reactive Metabolites generate Endoplasmic Reticulum Stress and the Unfolded Protein Response. This in turn activates B and T Cells
3. Viruses also generate ER Stress


See the figure below : Mitochondrial Damage, Inflammation/Proinflammatory cytokines, Innate/adaptive Immunity, ER Stress, B/T Cells, Bile acids accumulation.

Taken from : http://www.journal-of-hepatology.eu/article/S0168-8278(15)00299-8/pdf


Now in our case there are no viruses found, we know that. It is possible that because the ER/UPR System is disrupted through a Liver stressor (EBV/Psychological Stress/ Disease/ Medications) our bodies fall into a vicious circle of ER/UPR Signalling that induces autoimmunity and inflammation.



In my opinion the key is to stop ER Stress from happening so easily and thus break the cycle. And i believe that this is possible.