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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Community Symposium on molecular basis of MECFS! DISCUSSION THREAD!

dancer

dancer

Senior Member
Messages
298
Location
Midwest, USA
My brain hurts, and I've had a mix of gratitude (so many brilliant minds who care, are doing good science, and are working on our behalf) and discouragement (still so little funding, no specific treatment directions, years of waiting still to go) as the day has gone on. I think Mark Davis' talk was the most interesting to me so far - had the most new ideas/info. I'm going to focus on the encouraging image of all those scientists gathered from around the world sharing ideas, and continue to hope there will be effective treatments in my lifetime.
 
M

Manders

Messages
21
I'd be curious to see the immune response test results from a healthy person compared to a CFS patient. As in, when a healthy person gets sick, how comparable are their immune responses? Are we just immunologically over-reactive? CFS occurs when we run out of metabolic "fuel" to fight infection? Seems like that would be a survival response if we are less healthy from conception. Naviaux's comment about this affecting very bright or talented people was perceptive, IMO. Are we just brighter because we are more susceptible to disease? Stereotype being the nerdy, asthmatic, weaker person....
 
neweimear

neweimear

Senior Member
Messages
215
dancer said:
My brain hurts, and I've had a mix of gratitude (so many brilliant minds who care, are doing good science, and are working on our behalf) and discouragement (still so little funding, no specific treatment directions, years of waiting still to go) as the day has gone on. I think Mark Davis' talk was the most interesting to me so far - had the most new ideas/info. I'm going to focus on the encouraging image of all those scientists gathered from around the world sharing ideas, and continue to hope there will be effective treatments in my lifetime.
Click to expand...
 
L

leela

Senior Member
Messages
3,290
dancer said:
My brain hurts, and I've had a mix of gratitude (so many brilliant minds who care, are doing good science, and are working on our behalf) and discouragement (still so little funding, no specific treatment directions, years of waiting still to go) as the day has gone on. I think Mark Davis' talk was the most interesting to me so far - had the most new ideas/info. I'm going to focus on the encouraging image of all those scientists gathered from around the world sharing ideas, and continue to hope there will be effective treatments in my lifetime.
Click to expand...
I've had this same roller coaster going on today, @dancer. Still, like you say, it's so encouraging and heartwarming to see so many fine minds and caring people
focus on this, and take time to include us as well.
 
W

Wonko

Senior Member
Messages
1,467
Location
The other side.
CFS is.....

something aggravates a cell, cell destroys it but because of genetic issues can't excrete the virus/rna/small poisonous snail fragments, gets annoyed and starts leaking ATP all over the place. Other cells detect this ATP and go into survival mode, mitos go into survival mode, energy production drops, a lot, whole cycle perpetuates coz cell still can't get rid of all the pesky snail fragments.

Meanwhile......the immune system is doing it's own crazy thing, which really helps the situation.
 
L

leela

Senior Member
Messages
3,290
Wonko said:
CFS is.....

something aggravates a cell, cell destroys it but because of genetic issues can't excrete the virus/rna/small poisonous snail fragments, gets annoyed and starts leaking ATP all over the place. Other cells detect this ATP and go into survival mode, mitos go into survival mode, energy production drops, a lot, whole cycle perpetuates coz cell still can't get rid of all the pesky snail fragments.

Meanwhile......the immune system is doing it's own crazy thing, which really helps the situation.
Click to expand...
Thanks, @Wonko, that's just awesome! :nerd::thumbsup:
 
Hutan

Hutan

Senior Member
Messages
1,099
Location
New Zealand
Manders said:
Naviaux's comment about this affecting very bright or talented people
Click to expand...
Manders said:
Stereotype being the nerdy, asthmatic, weaker person....
Click to expand...

I have as much of a problem with the characterisation of ME patients as having been high achievers as I do with the Ester Crawley type comment that we are poor, criminal drug takers. This illness affects high-level sports people at the peak of their fitness as well as the asthmatic nerds.

There just are not enough good epidemiological studies to make well founded statements.

It's highly likely that the ME patients that Naviaux sees are well educated, well resourced people who have the drive to try to understand their illness and get better. It's highly likely that the young poor woman who left school at 15 and is trying to deal with several children under 5 with little family support and then gets ME just doesn't cope, sinks into depression and maybe takes drugs to escape from a horrible reality. That woman is probably not going to be diagnosed with ME, much less be turning up to take part in a clinical trial.

The problem with characterising people with ME on the basis of their character and even intelligence (inevitably with the inference of perfectionism) is that it's then easy to blame the patient and to suggest that it's those morally inferior people over there that get sick.

If people are going to make statements about the personal characteristics of people with an illness, I think it is reasonable for them to back that up with rock-solid epidemiology. I haven't seen any such studies for ME yet. Probably it isn't possible until we can characterise patients with unequivocal biomarkers.
 
justy

justy

Donate Advocate Demonstrate
Messages
5,524
Location
U.K
Doh! M.E brain. I don't know how but I totally forgot this was on today and had been looking forward to it for ages. And ive been in bed all day with nothing to do.

Will catch it on Your tube later on...
 
Ben H

Ben H

OMF Volunteer Correspondent
Messages
1,131
Location
U.K.
Snow Leopard

Snow Leopard

Hibernating
Messages
5,902
Location
South Australia
All but one patient in Ron's severely ill study were negative for EBV, all but two were negative for HHV7! (same pattern as controls)

Likewise no difference in mitochondria number between patients and controls.

Does anyone have a high-resolution version of Ron Davis's slide showing a circular plot of cytokine levels? (I noticed TGF-Beta was proportional to severity..)
 
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