ONLINE TALK with Prof Ron Davis: Progress and Challenges for a ME/CFS Diagnostic

[jaybee00]

https://www.facebook.com/video.php?v=312497314016247

Sheffield ME & Fibro Group

 

[maple]

What is the date on this talk?

 

[ljimbo423]

What is the date on this talk?

It must be new, it was just posted on YouTube today.

 

[jaybee00]

From yesterday.

 

[SNT Gatchaman]

That story at the beginning of the graduate student who recovered from being bed-bound for some (<5) years.

"The crash restarts the disease."

I really believe this too and I think anything we can do to stop the crashes of over-exertion and reduce the positive feedback loops of neuroinflammation is key to fixing the derangement. This could explain why some spontaneously recover, but others are going to need a central anti-inflammatory therapeutic.

Neuro-imaging is likely to become important for initial diagnostic and monitoring of treatment response.

 

[Rufous McKinney]

Pondering the Point: can massive rest lead to remission or full remission? maybe, but not in my case....

I am very close to having just spent the entire last year entirely resting. That may not mean not crashing.
But I have not crashed badly- during that time frame.

Further detail if your interested.

***
I do think bad crashes are not helpful and should be avoided to the maximum extent feasible.

However, Im alot older than the presumed Graduate Student. Maybe its just far more complicated when your body has been trapped here for so very long.

I am lucky I was mild for a long time, and did not experience classic PEM per se (then, and now I do).

I did get very ill, AGAIN, while having never left my apartment. This was the final "Proof" that whatever causes this severe gastropersis event I seem to get, is NOT a germ I caught someplace, or food I ate. So that was more weeks, but frankly it did clear more quickly than prior bouts which lasted for months.

(I am still somehow convinced if I can just rest enough, this will fall away. )

 

[Rufous McKinney]

That story at the beginning

I got abrupt exhaustion set in around minute 14, so this will take me a while to wade thru.

 

[SNT Gatchaman]

Pondering the Point: can massive rest lead to remission or full remission? maybe, but not in my case....

Yes, maybe we have a spectrum from those that recover spontaneously with only modest life changes, those that will recover in 1-5 years with significant rest and those that deteriorate or stay bad. Maybe the first group are what have been called "post-viral fatigue syndrome". Maybe the third group had a second or third hit that wiped out more systems and pathways.

 

[keepontruckin]

I am so frustrated with lack of governments funding. I hope they are held accountable some day the way that history always does. I remember rumours decades ago that a person at the top said some people were going to do without. Well they sure held steadfast to that.

 

[Rufous McKinney]

Maybe the third group had a second or third hit that wiped out more systems and pathways.

I may never really understand what happened, but I got much much worse over a period of (drumroll) six months.

I went from mild for decades, capable of working full time, even hiking all day.

These severe gastro events occurred. I think either I picked up a NEW virus capable of Carrying this On, OR I just got much worse, and my gastro events in theory produced Nitrous oxide increases which I then theorized worsened my Metabolic Trap.

 

[seamyb]

I only have post-exertional issues when I'm in a crash. Try working that one out.

 

[Jessie 107]

I can't watch the video, can anyone do a summary?😊

 

[bensmith]

Ty for posting. Did they mention if they fixed the robot yet? Or do they have the money yet?

 

[Breagjam]

Someone asked a question in the Q & A about the robots but it wasn’t answered sadly.

 

[SlamDancin]

Very interesting.
@Jessie 107 Sorry this will be very short but the new info I got from this was that in the severe patients they have been finding:

-High phenylalanine
-Low BH4
-Suspected low dopamine
-Nitrogen metabolism problems

BH4 is necessary to metabolize phenylalanine into tyrosine and then tyrosine into l-dopa, which may lead to low dopamine. I’m going to see if adding Vitamin C/Folate to help increase BH4 might give some benefit.

 

[SlamDancin]

I wonder if a low phenylalanine diet may be helpful. I think that would involve protein restriction

 

[SlamDancin]

BH4 is also necessary to synthesize serotonin but Ron said that Whitney appears to have high serotonin

 

[wabi-sabi]

Yes, maybe we have a spectrum from those that recover spontaneously with only modest life changes, those that will recover in 1-5 years with significant rest and those that deteriorate or stay bad. Maybe the first group are what have been called "post-viral fatigue syndrome". Maybe the third group had a second or third hit that wiped out more systems and pathways.

I'm always both hopeful and frustrated by thinking about it like this. I can't help crashing since I live alone and thinking I'm making my illness worse by doing what I need to stay alive isn't heartening. I guess you do what you can, right?

On the other had, I feel like I've gotten worse with time, even without crashing. It's just hard to sort out causes sometimes.

 

[bensmith]

@Breagjam Ty. How in the heck has this not been sorted yet : /. 8k ffs. Such a low some. I wonder if something happened so they dont plan on doing this now. Could they really not find the 8k somewhere?

 

[Canned]

That story at the beginning of the graduate student who recovered from being bed-bound for some (<5) years.

"The crash restarts the disease."

Maybe the graduate student did not crash BECAUSE he/she was getting better and not the other way round. At least that is my experience.. I don’t get better from not crashing.

Anyway, I like the part when Ron says, that there is no permanent damage because there are pwmes who recover completely.. I really hope this is true