Article from Stanford about ME/CFS 'Immune System Disruption'

[aimossy]

The article is about ME/CFS, Dr Mark Davis, Dr Jose Montoya and Dr Lipkin among others.
http://stanmed.stanford.edu/2014fall/immune-system-disruption.html

 

[Sasha]

Article is about ME/CFS Dr Mark Davis, Dr Jose Montoya and Dr Lipkin among others.
http://stanmed.stanford.edu/2014fall/immune-system-disruption.html

Thanks! Very interesting.

..."the primordial soup of creative disruption..."

And then there is the stigma associated with the condition; some NIH grant reviewers are reluctant to fund research because they believe that ME/CFS is a psychosomatic, “all in the head,” disorder. (To remedy this, the NIH recently created a special emphasis panel so that researchers familiar with the condition review grant applications.)

That's very welcome news - did we know this?

"There will be blood"

Seriously, this is an excellent article - very, very well written. And it looks as though it's in some kind of magazine for Stanford Medicine, so it will be going to a lot of people who we would like to influence.

 

[Bob]

To remedy this, the NIH recently created a special emphasis panel so that researchers familiar with the condition review grant applications.

That's very welcome news - did we know this?

It's news to me! Well spotted Sasha. Like you say, this is welcome news, if it works!

 

[Valentijn]

It's news to me! Well spotted Sasha. Like you say, this is welcome news, if it works!

Are they going to be inviting Ian Lipkin to resubmit his proposal for a grant, now that the psychobabblers are supposedly not running the review process anymore?

 

[Sidereal]

Great to see an article like this in a mainstream publication. I would just object to referring to POTS as a "fainting disorder". As far as I'm aware most patients with POTS have never fainted (except maybe on a tilt table). I actually think this is one of the main reasons it's so hard to recognise that we have autonomic disorder. To most docs that just means syncope, the rest is "anxiety".

He then reaches into another stack of paper and pulls out the Dec. 19, 2008, issue of Immunity. It is a poke-in-the-eye to fellow immunologists, an essay titled, “A Prescription for Human Immunology.”

In this oft-quoted paper, he describes immunology as a field known for its “impenetrable jargon, byzantine complexity and acrimonious disputes.”

LOL - so true.

 

[Sasha]

BTW, Mark M. Davis is a member of the Scientific Advisory Board for the new End ME/CFS Project:

https://www.facebook.com/OpenMedici...63974.309364692501292/592818214155937/?type=1

 

[aimossy]

Seems to me that we have some proven quality researchers wanting to work on me/cfs with some big projects now - really hope that people with the illness get backing them with donations and being very loud with NIH about getting them funded. They cant use the excuse now that no one wants to research this illness. We have some ammunition with all this happening.

 

[snowathlete]

It's news to me! Well spotted Sasha. Like you say, this is welcome news, if it works!

Interpretation may depend on your definition of 'researchers familiar with the condition' though - it getting a mention in this article suggests people with a biological outlook but does anyone know for sure? psychiatrists could fit this definition if you have certain viewpoints.

Would love to know more specifics.

 

[A.B.]

After watching some videos from the ME/CFS Symposion mentioned in the article, again I'm very impressed with Lipkin. At 17:52, he skipped a page about the differences between classical and atypical ME/CFS, saying that it was too complex. Does anyone know what the difference between classical and atypical ME/CFS is? Is it sudden infectious onset vs slow onset? Neurologic or non-neurologic symptoms?

This page here:

 

[Valentijn]

Does anyone know what the difference between classical and atypical ME/CFS is? Is it sudden infectious onset vs slow onset? Neurologic or non-neurologic symptoms?

According to the ICC I think ME can be "atypical" if there's no PEM at all, or if there is PEM but it isn't in response to physical exertion.

 

[Forbin]

My understanding is that:

ICC ME requires PENE and at least 7 other symptoms across 3 categories.

Compulsory Post-Exertional Neuroimmune Exhaustion
3 Neurological : 1 symptom from 3 symptom categories
3 Immune/gastro-intestinal/genitourinary : 1 symptom from 3 symptom categories
1 Energy metabolism/ion transportation : 1 symptom

ICC Atypical ME also requires PENE but (as I read it) only requires 5 other symptoms. [I'm not sure if you still need to have at least one symptom from the Energy metabolism/ion transportation category].

Atypical Myalgic Encephalomyelitis: meets criteria for PENE but has a limit of two less than required of
the remaining criterial symptoms. Pain or sleep disturbance may be absent in rare cases.

http://www.name-us.org/DefintionsPages/DefinitionsArticles/2012 ICC Primer Short Form.pdf

 

[Bob]

But we don't actually know what Prof Lipkin was referring to when he mentioned atypical ME, do we? He might have had something else specific in mind, other than the ICC. But i think it would be nice if he was referring to the ICC. It seems that he's had a lot of contact with Dr Montoya. Does Dr Montoya ever refer to atypical ME, or frequently use the ICC?

 

[Forbin]

It's true; we don't know what Prof. Lipkin was referring to. It could be his own "in-house" brand of atypical ME.

However, so far, the only other definition of "Atypical ME" that I've seen comes from the 2008 Pediatric Case Definition.

One subtype variation is Atypical ME/CFS, which is defined as 3 or more months of fatigue, but missing more than one classic ME/CFS symptoms.

This definition is only designed for those under 18 year of age.

http://www.la-press.com/a-case-defi...phalomyelitischronic-f-article-a1147-abstract

 

[A.B.]

Comparing adults and children to the same control group doesn't make sense so I doubt this refers to adult vs pediatric ME/CFS.

 

[Little Bluestem]

As researchers gain a better understanding of this system, he’d [Davis] like to develop a new set of metrics for immune system health that communicates more of a continuum of health rather than a black-and-white declaration.

Montoya’s chronic illness initiative is the largest project in the HIMC [Human Immune Monitoring Center] at this time, and the complexity of the task ahead is daunting.

 

[ahimsa]

I'm very slow but finally got around to reading this article (in fact, I'm only halfway through it).

It's really one of the better articles that I've seen. Thanks so much for posting the link!