3rd Annual Community Symposium on the Molecular Basis of ME/CFS at Stanford University, sponsored by OMF, 7th Sept 2019

Yes, I'm going to try some of that stuff! Hope I can tolerate it!

 

I took the potent Turkish nigella/black seed oil daily for 2 years with no results.

 

I took black seed oil and, like most of the things, it made me worse.

 

In the interest of fairness, I think that NIH has made a contribution to the forward motion with this disease. They haven’t done enough by a long shot, but Maureen Hanson heads one of the 3 cooperative research centers and others in that room have NIH funding as well. Dr. Younger wasn’t able to attend, but he was recently funded too.

What I wish is that every researcher in that room would flood NIH with research applications. The research community has to grow and I think that this conference, as well as the NIH young investigators conference earlier this year, are opportunities for stimulating that growth.

In my opinion, what we here in the US have to do is, first, to continue to push NIH for set-aside funding, and secondly, build up a strong relationship with Congress. I don’t believe that Congress will allocate funds for this disease until they see a research breakthrough. I hope that we will be ready for a major push when the breakthrough happens.

 

I'm glad these researchers are being honest and presenting negtive or mixed results and I'm glad they are organizing these conferences. Still many questions, most have been raised already, and no answers. And I'm humbled by how long I think it's going to take those answers to come.

I guess the most sobering thing is how are we still not sure if it's an infectious entity or not 40 years on. Those osler web's tweets are clearly written from an agenda/perspective, so I'll hold off until I can watch the videos or someone who was there can clarify.

For example, I'm finding the following hard to believe. What evidence? Why virus? Why/how is it endemic?

I'm also not sure about lumping. People get me/cfs gradually or rapidly. They get it in Africa and in urban Asia. We don't know is it a motorcylce, a car or an airplane that hit you.

Nonetheless, it takes a lot of courage and patience to research this illness and I'm grateful for everyone involved in the conference.

 

I agree politicians won't stick their necks out on me/cfs unless there is a breakthrough. They don't want to get mugged down in the psychosomatic and public perception about me/cfs. They need something to stand on.

 

I was at the Symposium and happened to read this, so I asked Maureen directly if she believed that the cause is a virus. She made a point of refusing to specify or state this at all. She said that what she thinks matters is what is happening/being done—the action rather than a presumed actor. She said that for instance, HIV was discovered after seeing what was going wrong with the immune system. The common cause, in other words, is what is being done. Whatever the agent itself might be seemed immaterial to her thinking, beside the point right now.

So, in my translation of what she communicated, the point is to look for the function that is going wrong, rather than to insist ahead of time that it has to be one type of agent or another. To insist that it has to be a particular kind of agent, ahead of time, could close down the best sort of research process.

 

Relieved to hear this explanation. Thank you @Sing

 

I'm so confused now. I have seen it reported that she said "we know we're dealing with a genius virus". Where is that quotation coming from?

 

Her talk, yesterday.

 

But @Sing just said that Hanson didn't say that at the Symposium. Or am I misunderstanding something? I'm so confused.

 

Am feeling confused now. Is the utube available yet to relisten to Dr Hanson? She was early in the day. I remember the virus statement too.

Were you able to discuss this with her @Sing?

Eta: I seem to remember Dr Davies saying something about how straightforwardly Dr Hanson spoke or something similar


Eta2: there is another thread on Dr Hanson’s talk https://www.s4me.info/threads/maureen-hanson-talk-at-omf-symposium-2019.11192/

 

I think the evidence strongly suggests its both a genetic predisposition and a virus or maybe many candidate viruses. Indeed this might mean its an otherwise unremarkable virus, and only those with the genetic risk have severe issues with it. 69 out of 70 with an IDO2 mutation is far too many for it to be by chance unless its an absolute fluke or a systemic bias in the testing.

 

Which really shows the damage the whole "fatigue" reframing has done. It ruined everything in heinous sabotage. And Wessely touts it as one of the biggest accomplishments of the last 3 decades. What a talentless hack.

 

I personally, took the “virus” Maureen Hanson was talking about for a methaphor?

 

I heard her saying it, it will probably be on a video when it's released.

I googled it and it seems she was either talking about a pop band, or what's probably a scifi book, so came to the conclusion that there is probably no such thing as a 'genius virus' that she must mean that it's just not as 'stupid' as most other viruses, in that it's hard to detect as it's symptoms make no sense to our current techniques.

Not that the virus, if there is one, which seems unlikely, is smart, just that our technology is too stupid to see it, again, if it exists.

 

The most stupid part of most technological devices is the person running the machine.

 

It was either misquoted or taken out of context. The point she was making (even brain fogged I think I got the main point correctly) was that it could be that ME/CFS was triggered by a "hit and run" virus, which messed up the immune system and then left no traces behind, so the virus is genius in that sense. She used the example of how poliovirus can cause a horrific disease like poliomyelitis for 1% of children, but for the rest 99% that catches it it will barely cause symptoms, and after you get poliomyelitis it's difficult or impossible to actually find the poliovirus in the body anymore. But anyway, at no point was there any suggestion made that they had found a new virus or any active infection in patients.

 

Thanks. So people on Twitter were overstating the point?

 

Without remembering the exact details and words in that part of the presentation, I think the idea was that if it is a virus, it is a « genius » virus vs a « dunce » virus. They were making a joke as well as a good point, while talking about the different history of our illness vs others like HIV, for which it was easy to discover the cause. With the current technology, she said that a virus like HIV would take almost no time at all to identify—She might have said, « a minute! »