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Mady Hornig: tea-time at Simmaron and some early gut findings

Scarecrow

Revolting Peasant
Messages
1,904
Location
Scotland
Fascinating comment about Dr Peterson's perceptive subtyping of his patients into classic and atypical.

Also of interest to the gut enthusiasts who have been Resistant Starching or taking C. butyricum:

They’re finding evidence of significant changes in the gut flora of ME/CFS patients vs healthy controls. For one, altered levels of butyrate producing bacteria have been found in the ME/CFS patients. Noting that similar differences have been found in autoimmune diseases, Dr. Hornig proposed that an autoimmune process may be fueling the symptoms in a subset of patients.
 

Kyla

ᴀɴɴɪᴇ ɢꜱᴀᴍᴩᴇʟ
Messages
721
Location
Canada
Is there a video or audio of this presentation (Simmaron tea?) available anywhere online?
 

snowathlete

Senior Member
Messages
5,374
Location
UK
several interesting things there, worth the read and encouraging. Seems they are steaming ahead with their wor, which is great given our current situation.
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
That nice concurrence between immune findings in the spinal fluid and in the blood was encouraging, and the group is digging deeper into those CSF samples. Thus far a factor called cortisol binding globulin (CBG) has popped up in protein analyses.
 

SOC

Senior Member
Messages
7,849
oThe first cerebrospinal fluid study using Dr. Peterson’s carefully collated samples found a similar pattern of immune system down regulation. That study (supported by CFI and Evans Foundation) included only longer duration patients. These two studies – the first to find similar issues in these two different compartments of the body – suggested that the immune system had taken a system wide punch to the gut.

What could cause this kind of immune exhaustion? Dr. Hornig stated it’s usually associated with chronic infections.
Noting that similar differences have been found in autoimmune diseases, Dr. Hornig proposed that an autoimmune process may be fueling the symptoms in a subset of patients.
[my bolding]

How does this fit with the strongly held belief of some members that ME is only an autoimmune disease, and that immune down-regulation and chronic infections do not exist in ME?

Virtually all the immune factors tested were higher in the complex atypical vs the classical patients.
I don't quite follow this sentence. Is @Cort saying that classical patients have more immune down-regulation while complex atypical patients have higher (more normal?) levels of the measured immune factors? Or that complex atypical patients have immune up-regulation? Or something else entirely? :confused:

Here's another sentence I'm having trouble following:
Similarly, without excluding Peterson’s subset of atypical patients, the cerebral spinal fluid study findings would have been insignificant.
How so? Does this mean the the immune dysregulation in atypical patients is less clear, or nonexistent, or in the opposite direction to the immune dysregulation in classical patients?

Does this suggest that the group Dr. Peterson is calling complex atypical may have an autoimmune disease, while those he calls classical have chronic infection leading to immune down-regulation? Two subsets, or even two entirely separate diseases? It seems like it's looking less like different stages of the same illness, although that's not entirely clear to me based on this article.
 
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Simon

Senior Member
Messages
3,789
Location
Monmouth, UK
..very much looking forward to what the next few years will bring. She said she was cautiously optimistic that the IOM and P2P reports, the positive immune study, plus the signs that the National Institute of Neurological Disorders and Stroke (NINDS) may be interested in taking ME/CFS on, indicate that a turnaround for ME/CFS funding is in store. - See more at: http://simmaronresearch.com/2015/09...w-gut-findings-in-mecfs/#sthash.b4pbN8xI.dpuf
Wow, hadn't heard that before.
 

Helen

Senior Member
Messages
2,243
"That nice concurrence between immune findings in the spinal fluid and in the blood was encouraging, and the group is digging deeper into those CSF samples. Thus far a factor called cortisol binding globulin (CBG) has popped up in protein analyses. "

Like @Bob I found this interesting. Did it "pop up" as a high or low value? As the CBG has to do with the distribution of cortisol in blood and so many of us seem to have cortisol disturbances with great impact on health it would be interesting to know if it might be of genetic reasons the CBG value isn´t normal in PWME. @Valentijn, can you possibly see anything odd in your n=50 material from 23andme?

https://en.wikipedia.org/wiki/Transcortin
 
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jimells

Senior Member
Messages
2,009
Location
northern Maine
the signs that the National Institute of Neurological Disorders and Stroke (NINDS) may be interested in taking ME/CFS on, indicate that a turnaround for ME/CFS funding is in store.

This sounds like happy-talk based on hand waving at the recent CFSAC meeting. Some people watching the meeting thought the NIH rep was sympathetic, while she was mindlessly repeating the party line about lazy researchers won't repeatedly resubmit grant applications and the ones that do are too stupid to fill out the forms properly.
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
This sounds like happy-talk based on hand waving at the recent CFSAC meeting. Some people watching the meeting thought the NIH rep was sympathetic, while she was mindlessly repeating the party line about lazy researchers won't repeatedly resubmit grant applications and the ones that do are too stupid to fill out the forms properly.
I thought she was sympathetic and constructive and relatively well-informed. I thought we'd do well to have ME moved to her department. (Can't remember her name.)

Edit: There were more than one reps from HHS present, and we may be talking about different people. I wasn't impressed with another rep who I remember talking about a lack of applications etc.

Edit 2: The rep I liked was Dr. Vicky Whittemore from the National Institute of Neurological Diseases and Stroke.
 
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Bob

Senior Member
Messages
16,455
Location
England (south coast)
"That nice concurrence between immune findings in the spinal fluid and in the blood was encouraging, and the group is digging deeper into those CSF samples. Thus far a factor called cortisol binding globulin (CBG) has popped up in protein analyses. "

Like @Bob I found this interesting. Did it "pop up" as a high or low value? As the CBG has to do with the distribution of cortisol in blood and so many of us seem to have cortisol disturbances with great impact on health it would be interesting to know if it might be of genetic reasons the CBG value isn´t normal in PWME.
Perhaps it fits the recent autoantibody research too? i.e. adrenergic receptors. (But I don't know how adrenergic receptors would interact with CBG.)
 
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adreno

PR activist
Messages
4,841

Sasha

Fine, thank you
Messages
17,863
Location
UK
I thought she was sympathetic and constructive and relatively well-informed. I thought we'd do well to have ME moved to her department. (Can't remember her name.)

I think there were two NIH reps - one who favourably impressed me and one who didn't.