International Canadian ME/CFS Conference May 3-5, 2018

[adambeyoncelowe]

If you read Hyde's book, he's very clear: the EV causes vascular lesions on the brain, and/or hypoperfusion. Either of these should be found on Xenon SPECT. He goes on to explain that poor circulation may be a hereditary risk factor. If you have poor blood flow to begin with, the added neurological damage from an EV (which is neurotropic) can cause symptoms of ME.

Hyde has also said there is a 'secondary' type of ME, where similar neurovascular damage is caused by, say, jet fuel fumes or autoimmunity. EV isn't evident in these cases, and he previously attributed them to communicable EV infection via passengers on planes or whatever, but now thinks it may be similar damage caused by different things.

What he's not consistent about is whether he also refers to these 'secondary' cases as ME or if they're just 'ME-like'.

 

[Gemini]

What did Dr. Hyde say re: autoimmune vasculitis?

Unfortunately he didn't expand on it as I remember @Gingergrrl.

He covered a lot of material and moderators were good at keeping speakers to their allotted 20 minutes.

Am hoping full versions of presentations will be made available online. Livestream viewers are supposed to get copies of slides though I think.

 

[Gemini]

Is there a transcript or recording of this?

Livestream viewers were requesting this @Learner1. Don't know if it will happen?

 

[raghav]

Wont the conference presentations be available on youtube after a week or so ?

 

[Learner1]

It would be especially helpful to know what Ron Davis said in his presentation.

 

[Gemini]

It would be especially helpful to know what Ron Davis said in his presentation.

I'll give it a try from my notes @Learner1.

Ron Davis began his talk with the engineering concept-- "signal" vs "noise" stating by studying 20 severely ill patients it may provide the strongest signals.

Results so far in the search for elusive pathogens has turned up 'no virus found.' @JaimeS wrote an excellent comprehensive summary of this research for the April 11th "ScienceWednesdays" posted here:

http://forums.phoenixrising.me/inde...thogens-in-me-cfs-by-jaime-seltzer-m-s.58714/

Davis said they've found lower levels of TT virus in patients than controls perhaps from chronic immune activation.

He'll look at pathogens found in Sleeping Sickness--tropanosomes and parasites--as it may be similar to ME/CFS.

Some cytokines are elevated and may track to severity of illness.

Metabolism is disrupted, much of it hypo.

Markers at low levels in patients indicate it's not a genetic mitochrondrial disease where markers are high.

Clonal T-cell expansion may indicate "infection or autoimmune" [assumed he meant Mark Davis' research here.]

The NRXN1 gene is of interest.

Finally, that patients may be in a "Metabolic Trap" is a key hypothesis at this point. Robert Phair is working on integrating data. If validated, it appears to be "reversibile." which would be very good news. He questioned 'Why do patients get into it'? And answered, mostlikely an infection.

 

[Learner1]

Thank you!!

Metabolism is disrupted, much of it hypo.

Any bullet points here? Synthesis of everyone's findings?

Markers at low levels in patients indicate it's not a genetic mitochrondrial disease where markers are high.

There are a number of genetic mitochondrial diseases with different characteristics, not sure all the markers are high there.

Were there any specific comments on what mitochondria are doing in ME/CFS? At the Clinician's Summut, they discussed high oxidative stress as a defining feature.

The NRXN1 gene is of interest.

Deletions or a SNP? Its one of the biggest genes in the human body and intersects with many things.

Finally, that patients may be in a "Metabolic Trap" is a key hypothesis at this point. Robert Phair is working on integrating data. If validated, it appears to be "reversibile."

Any idea when there will be any info on this? What's the timeline? Anything we can look into for treatment yet?

 

[Gingergrrl]

Unfortunately he didn't expand on it as I remember @Gingergrrl.

No worries and I was just curious when Dr. Hyde talked about autoimmune vasculitis if he had changed his theory from enterovirus, or if he was talking about something else completely, or if the two theories had somehow gotten merged together?!

 

[Gemini]

If you read Hyde's book, he's very clear: the EV causes vascular lesions on the brain, and/or hypoperfusion....Hyde has also said there is a 'secondary' type of ME, where similar neurovascular damage is caused by, say, jet fuel fumes or autoimmunity...

What he's not consistent about is whether he also refers to these 'secondary' cases as ME or if they're just 'ME-like'.

Thanks for posting, @adambeyoncelowe. Excellent summary.

 

[Gemini]

Deletions or a SNP? Its[NRXN1] one of the biggest genes in the human body and intersects with many things.

Ron Davis was referring to the NRXN1 gene's connection to the brain.

Sorry, @Learner1 don't remember if he spoke about deletions or a SNP. Perhaps someone else does?

Found this description of NRXN1:
https://ghr.nlm.nih.gov/gene/NRXN1

 

[Gemini]

Any idea when there will be any info on this["Metabolic Trap" hypothesis]? What's the timeline? Anything we can look into for treatment yet?

Last week @Murph posted an excellent 6-minute video of Ron Davis discussing this in more detail--they're looking at a major pathway and should have answers by the end of the summer. Audience applause followed!

http://forums.phoenixrising.me/inde...r-in-massachussetts-6-minute-23-of-q-a.58998/

Re: treatments, he said if this hypothesis is validated, drug companies may not have to spend time/effort to develop new drugs as treatments may be available without being specific.

Re: actual metabolic abnormalities found, he showed a color coded slide densely populated with tiny blue dots for hypo, by far in the majority, and red for hyper to illustrate the complexity of the data. No synthesis of findings yet tho'.

Interestingly @Learner1, during the Q & A an audience member asked if the metabolic abnormalities could be caused by patient deconditioning and inactivity? He answered "No."

 

[JaimeS]

Interestingly @Learner1, during the Q & A an audience member asked if the metabolic abnormalities could be caused by patient deconditioning and inactivity? He answered "No."

I wish people would get off of this one. Anytime I ask a researcher or clinician who 'believes' in this to then explain people like me, who are more active than the average desk jockey and still have to pace -- and still have daily symptoms and monthly crashes -- it's a big ol' ¯\_(ツ)_/¯

Deconditioning is A problem but it's not THE problem.

 

[perrier]

Is there any way to list the recommendations for patients that may have come out of the conference? For ex., it was noted that patients are high in mercury, and therefore selenium is depleted. Thus, I guess it would be good to add this in. We are in a very self help mode at the moment with this devastating illness, so I'm just wondering if one can glean something for patients out of the scientific research. There was also the issue of Vit C being toxic, which Dr. Moreau brought up, which I found a bit of a puzzle.

Any input would be appreciated. Thank you.

 

[Gingergrrl]

Hyde has also said there is a 'secondary' type of ME, where similar neurovascular damage is caused by, say, jet fuel fumes or autoimmunity. EV isn't evident in these cases, and he previously attributed them to communicable EV infection via passengers on planes or whatever, but now thinks it may be similar damage caused by different things. What he's not consistent about is whether he also refers to these 'secondary' cases as ME or if they're just 'ME-like'.

That is really interesting. If I understand it correctly, Dr. Hyde now thinks there is a secondary type of illness that is similar to ME or "ME-like" but could be caused by other things like autoimmunity? I'd love to hear more about this part but I know each speaker only had 20 minutes!

 

[adambeyoncelowe]

That is really interesting. If I understand it correctly, Dr. Hyde now thinks there is a secondary type of illness that is similar to ME or "ME-like" but could be caused by other things like autoimmunity? I'd love to hear more about this part but I know each speaker only had 20 minutes!

Yes. There's a paper here: https://www.google.co.uk/url?sa=t&s...FjACegQIBhAB&usg=AOvVaw0RcCfkCQjKAVGBDMxjWYfS

 

[Gingergrrl]

Yes. There's a paper here: https://www.google.co.uk/url?sa=t&s...FjACegQIBhAB&usg=AOvVaw0RcCfkCQjKAVGBDMxjWYfS

Thanks for the link, Adam, and I bookmarked it to look at later.

 

[Gemini]

Is there any way to list the recommendations for patients that may have come out of the conference? For ex., it was noted that patients are high in mercury, and therefore selenium is depleted...there was also the issue of Vit C being toxic, which Dr. Moreau brought up...

A list is a good idea, @perrier. Perhaps it could be posted on PR?

Ron Davis did mention a few patients were high in mercury, found to be associated with diets high in fish.

ME/CFS nutrition was covered by University of Montreal Nutritionist Valerie Marcil who gave an excellent talk.

She started by reviewing current research:
Normal levels of vitamins and minerals found
No vitamin D deficiency found
50% of patients have food intolerances

Offered recommendations:
How to do an elimination diet to identify food intolerances
Keep a food journal
Avoid large meals
Eat a variety of foods that can be tolerated

Covered prebiotics, probiotics, omega 3, NADH, CoQ10, Glutamine, FODMAP diet, and more.

Marcil's research interests include prevention of oxidative stress, inflammation, mitrochondrial dysfunction; nutriepigenomics; and diet/gene interactions.
www.pubfacts.com/author/Valerie+Marcil

Given step 2 of Naviaux's 3-step treatment strategy is "Address nutritional deficiencies," perhaps @Ben H might consider including the topic of ME/CFS nutrition science in the "ScienceWednesdays" series?

 

[Learner1]

Normal levels of vitamins and minerals found
No vitamin D deficiency found

This is unbelievable, given the research of Naviaux, Armstrong, Hanson, Fluge, Mella, Moreau, and many others, as well as statistics on the general population of vitamin D deficiency.

It begs the question, what tests were done on what bodily substances, and what were the ranges considered "normal?"

Your suggestion of a nutrient focused talk is excellent! @Ben H ?

 

[Kati]

I think the recommendations of the dietician was eat a balanced diet. Eat food of all food groups.
Then Dr Davis previously said that diet is not likely to cure ME.

I wish people stopped foicusing so much on food. This is not a nutritional problem. It has been made very clear.

 

[Learner1]

This is not a nutritional problem. It has been made very clear.

@Kati There are no FDA approved drugs for ME/CFS. So, you can wait until one is developed and approved, or you can look at tge copious metabolomics research that shows biochemical abnormalities that can be addressed by nutrients.

Fluge and Mella found patients, especially women, burning amino acids for fuel.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5161229/

Naviaux, Nathan, et al, found deficiencies in B12, B2, sphingolipids, etc.

http://www.pnas.org/content/113/37/E5472

Maureen Hanson, Ian Lipkin, etc al found biochemical abnormalities including nutrients that overlapped with the above. As did Christopher Armstrong and his team in Australia.

And Alain Moreau and many others have noted issues with the one carbon metabolism (methylation).

Nutrition is a promising avenue and something that can be used in treatment today.

Or, you can wait for an FDA approved drug.