Community Symposium on molecular basis of MECFS! DISCUSSION THREAD!

[ScottTriGuy]

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".

 

[ash0787]

I particularly liked these speakers
Jonas Bergquist
Alan Light
Baldomero Olivera
Mario Capecchi
Mark Davis

The information that stood out to me as important was that there is a company trying to manufacture suramin for our purposes + autism treatment but it will take maybe a year or so ? and ron reminded me that it was effective in the impedance test so its not just something which is theorized to be helpful

 

[neweimear]

@ash0787 Do u know if that company is definitely onboard or if they are just in talks with the company about possibility of supplying suramin. I watched alot of youtube clips but did not see conversation about sourcing suramin..

 

[trishrhymes]

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 think he made it clear that they hadn't found viruses in the blood, but that there could be viruses in other tissues. In the case of enteroviruses I assume this would have to be looked for in the gut.

And I don't see that this raises a problem over epidemics, since the virus may be in other tissues, or may have been dealt with but leaving the patient with an ongoing autoimmune problem triggered by the virus.

 

[Learner1]

I really have no idea. My forays into (oestradiol) HRT didn't work... fwiw.

The discussion above seemed to indicate estriol was helpful, not estradiol.

Perhaps you could try estriol with bioidentical progesterone to balance it. Testosterone was also mentioned yesterday as helpful.

I met another patient yesterday who'd been ill for a few years, recovered for a few, then relapsed after a miscarriage. During pregnancy, estriol production is high, then returns to a lower state after the pregnancy.
.

 

[trishrhymes]

Thanks to everyone involved in the symposium. I was going to just watch the morning session (evening here in the UK) but ended up staying with it to the end at 1am.

I am shattered today, but am pleased I stayed. It was wonderful to feel included as part of the wider audience. Thank you for making us house and bed bound folk feel welcome.

I don't think I took in much of the detail, so am delighted to be able to watch again at my own pace on You Tube.

Memorable moments - the venomous marine snails and the amazing inventions in Ron's department and the lovely personal touches in Ron's introduction of each speaker.

Such a well organised and well chaired day. It will stay with me and comfort me for months and years to come.

Can you make it an annual event?

 

[AndyPR]

@AshleyHalcyoneH many thanks for your hard work on this.

@Stukindawski has really helpfully provided useable links (in this post http://forums.phoenixrising.me/inde...s-discussion-thread.53372/page-19#post-887485) to the starts of the different talks on Youtube, could this information be added to the video's description on Youtube? We are unable to add it ourselves as a comment as they are disabled.

 

[Manganus]

Thanks to everyone involved in the symposium. I was going to just watch the morning session (evening here in the UK) but ended up staying with it to the end at 1am.

Also I am quite shattered now, after having seen and listened to most of the eight hours.

Such a well organised and well chaired day. It will stay with me and comfort me for months and years to come.

Can you make it an annual event?

I see three quite different purposes

1. getting researchers to meet
2. giving patients and relatives hope
3. increasing funding by spreading the word

All three points are important.

 

[dangermouse]

I think that would make sense.

My ME has become very much worse with menopause.

I think this is really interesting. Since peri menopause started (7 years ago) my ME symptoms have gradually worsened. There's often cyclic patterns of symptom worsening too.

Recently my symptoms have really escalated and I'm almost certain it's to do with hormones.

 

[Mij]

bifidobacteria

Why bifo in particular? My levels when tested were in good normal range.

 

[Marco]

That was all very interesting but Mark Davis' claims re clonal expansion of T cells in ME/CFS patients seems to be so clear cut as to be irrefutable evidence of immune activation in response to 'something'.

Or is it not quite so simple?

 

[Stukindawski]

@AshleyHalcyoneH many thanks for your hard work on this.

@Stukindawski has really helpfully provided useable links (in this post http://forums.phoenixrising.me/inde...s-discussion-thread.53372/page-19#post-887485) to the starts of the different talks on Youtube, could this information be added to the video's description on Youtube? We are unable to add it ourselves as a comment as they are disabled.

Since someone asked, it's totally cool to share those times codes, I don't need credit or anything, I have the joy of making information for digestable for fellow PWME .

As far as YouTube goes, Youtube automatically processes the time codes without the need of creating links (provided they're written in the correct way). If someone is able to get the video hoster to post the following in the description or comments, it should work:-

Introduction & Welcome: Linda Tannenbaum and Ashley Haugen (10:18)
Opening Remarks: Ron Davis: (14:46)

Morning speakers:
Robert Naviaux: The metabolism of the cell danger response, healing, and ME/CFS (18:23)
Chris Armstrong: ME, metabolism and I (38:35)
Jonas Bergquist: In search of biomarkers revealing pathophysiology in a Swedish ME/CFS patient cohort (53:20)

Maureen Hanson: Probing metabolism in ME/CFS (1:46:50)
Neil McGregor: Genome-wide analysis & metabolome changes in ME/CFS (2:04:58)
Alan Light: Gene variants, mitochondria & autoimmunity in ME/CFS (2:21:44)
Panel discussion: Morning speakers (2:42:05)

Afternoon speakers:
Baldomero Olivera: A novel source of drugs: the biodiversity of oceans (4:37:57)
Mario Capecchi: The role of microglia in neuropsychiatric disorders (4:57:49)
Mark Davis: Is CFS/ME an autoimmune disease? (5:14:35)

Alain Moreau: New research strategies for decoding ME/CFS to improve diagnosis and treatment (6:06:30)
Wenzhong Xiao: Big data analysis of patient studies of ME/CFS (6:24:55)
Ron Davis: Establishing new mechanistic and diagnostic paradigms for ME/CFS (6:44:21)
Panel discussion: afternoon speakers (7:21:43)

Closing remarks: (8:02:43)


----

Lastly, if anyone wants the raw BBCode to put this somewhere else, just ask.

 

[liverock]

@Janet Dafoe (Rose49) @rose49

Could you share this study with Ron regarding pregnancy helping ME patients? There is a researcher using that hormone with MS patients

http://www.npr.org/sections/health-...ormone-may-reduce-multiple-sclerosis-symptoms

@Hip seemed to get some help using Estriol. I dont know if he is still using it.
http://forums.phoenixrising.me/inde...s-and-autoimmune-disorders.12295/#post-519359

 

[Manganus]

This maybe ought to be put in a thread of its own?
It's good question!

Why bifo in particular?

It's unknown - probably a "known unknown" - as far as I know
Analyzing the bacteria in the intestines is a huge work.



(I might add that Bifidobacteria-probiotics seem to have been of value for me.)

 

[BurnA]

That was all very interesting but Mark Davis' claims re clonal expansion of T cells in ME/CFS patients seems to be so clear cut as to be irrefutable evidence of immune activation in response to 'something'.

Or is it not quite so simple?

That's what it was thinking.

 

[MeSci]

friend who is at the conference today just asked naviaux during lunch if there is an herb that could be used instead of suramin, and he it is not yet known what herbs will work. and that he expects a cure in 5 yrs.

5 years is the conventional quote for time for maturity of results. It's not always accurate.

 

[lilpink]

The discussion above seemed to indicate estriol was helpful, not estradiol.

Perhaps you could try estriol with bioidentical progesterone to balance it. Testosterone was also mentioned yesterday as helpful.

Yes tbh it was me who made the point about the difference between the two types of oestrogen I have tried testosterone as part of another HRT trial (with a small 't') but it was tragically awful.

 

[Nickster]

@Ben Howell , @AshleyHalcyoneH , @Janet Dafoe (Rose49).
Thank you for this wonderful event! I am so grateful!
At the end Ron asked for any additional ideas to move forward. I beleive we need to get clinicians and physicians on board with these discussions because they see it on the front line dealing directly with the patients and may have pivotal input.

 

[user9876]

@ash0787 Do u know if that company is definitely onboard or if they are just in talks with the company about possibility of supplying suramin. I watched alot of youtube clips but did not see conversation about sourcing suramin..

I had thought that a company was interested in suramin not for ME but because it helped block some viruses like Ebola. There was talk of a phase 3 trials costing $20m and it not being obvious how this would happen for ME.

 

[user9876]

That was all very interesting but Mark Davis' claims re clonal expansion of T cells in ME/CFS patients seems to be so clear cut as to be irrefutable evidence of immune activation in response to 'something'.

Or is it not quite so simple?

I don't think it was done on many patients so there could be small sample size issues but it did seem very interesting.