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guillain barre syndrome, cfs???

justinreilly

Senior Member
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Hi Jewel,

Thanks for sharing that. I am sorry to have read about your mum. GB sounds very frightening indeed and I try to remember the same thing - that there are innumerable shades of awful. It helps.



Hi Heapsreal

Osler's Web is a great read isnt it? I think it should be mandatory reading for all ME and CFS advocates.

CFS is not recognised as a neuro immune disease, because it was never defined that way. The key feature of the definition that distinguishes it from other illnesses, is unremitting fatigue for 6 mths or more and that it a diagnosis of exclusion. ME however, is not a diagnosis of exclusion and is not a syndrome and is classified as a neurological illness because its key defining feature is Central Nervous System Dysfunction.

So the CDC's focus on the Lake Tahoe Co hort- was always the unremitting fatigue they found in the patients, and so they defined it that way.

I cant recall when Cheney et al showed the MRIs with UBO to the CDC, but if it was after the definition, then that response was to be expected.

If it was before, the response could have been predicted, because as I recall - Holmes went to Lake Tahoe with the view that the outbreak was mono and then appeared to only investigate mono. So the evidence brought back for the CDC to consider - was mono based and that gave rise to the CDC definition of CFS. I dont think they see UBOs in mono patients - so again, that is probably why the dismissed it. That is my recollection, but it has been some time since I have read it.

They knew or should definitely have known, i forget which, that it wasn't mono. Cheney and Peterson always said it wasn't. Mono goes away after a week or two. Every college kid knows that. James Jones wrote one of the first articles and even he said that. Holmes and Kaplan went out there for a ski trip, nothing more.
 

justinreilly

Senior Member
Messages
2,498
Location
NYC (& RI)
Jewel, I am sorry about your Mom's terrible illness. Guillain Barre certainly is a horrific disease. I would guess it's somehow related to your ME since it is similar.
 

justinreilly

Senior Member
Messages
2,498
Location
NYC (& RI)
I'm very sorry about your mom, Jewel.

I don't actually think anyone is envious of other diseases (i.e. wanting to have that instead of this), just desirous of being treated properly. And wondering if various diseases could be related because studying related conditions alongside one another or comparing findings, can sometimes help patients of both conditions.

I agree. It seems to me what we most envy of other diseases is adequate treatment, regard and support. I would much rather have HIV for that reason (though I would not rather have Guillain-Barre- it sounds horrible).

Also it's worth considering that maybe even some cases of ME/CFS might be milder or insidious onset or undiagnosed Guilliane-Barre; some ME patients are locked in and some have required respirators; there is a huge spectrum covered across ME/CFS and some is, and some slowly becomes, serious, life-threatening, and even mortal.

I agree. It was suggested in Osler's Web that the large rise in idiopathic encephalitis and comas that started in the 1980s was in fact undiagnosed ME.
 

justinreilly

Senior Member
Messages
2,498
Location
NYC (& RI)
Yes. These are excellent points Willow. It is uncanny that what is rather a banal (in medical terms) phenomenon (infectious illness followed by various deficits also seen in other diseases) has been turned into a 'phantom' and subject to the neo-Freudian explanations in the way it has.

I have to agree. If you glance at it driving by at 100 miles an hour ME may hint of vagueness or depression, but I expect doctors to examine and listen to patients and inquire into the disease, just like with any other condition. If they did so it would not appear more 'mysterious' or vague than any other infectious disease. What's non-specific and vague about PEM, a destroyed immune system, rampant infections, specific brain lesions, encephalitis, rare lymphomas, etc. etc??
 

WillowJ

คภภเє ɠรค๓թєl
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It seems strange to me that you object and attempt to silence my contribution on definitions and or their application to epidemics, on the basis of relevancy to this thread but have no qualms whatsoever in continuing to post your own views on the definitional aspects in this thread.

I'm sorry if that's what you understood me to be saying. I meant for you to carry on, but I wanted to check and see if the others on the thread (particularly the "owner" of the thread, heapsreal) felt this part was disruptive to the GB discussion, and if so, the continued conversation (including your part which I assumed you would continue also) could be moved. It appears from what you said that this conversation is pertinent to GB, however. Speaking of which, GB is associated with multiple sorts of infections and not only enterovirus. Why is that ok for GBS and not ok for ME?

You mentioned CFS in the "historical literature." Did you mean some disease other than ME, prior to the name of CFS being handed out? Or are you saying the Lake Tahoe cohort did not have enterovirus even though a number of experts have stated that they evidently had ME? I'm just trying to understand what you are telling me. I haven't been following the definition threads because I don't have the time/energy to be here at PR much right now (which also explains my delay in getting back to you; sorry about that).

I just don't see that CFS denotes any particular disease by any of the CFS definitions (not counting Canadian ME/CFS definition), and I don't know of any serious researcher who thinks any of these inclusions do, as written, denote any particular condition. I don't know what disease you mean by CFS that isn't ME, unless you mean any prolonged (as opposed to a normal case of monocucleosis or something like that) post/chronic infectious disease that's non-enteroviral.

Kerr's genomics subset studies do indicate good evidentiary support for subsets or different diseases if you prefer (my preference is to keep us all together, partly because we've been formed a cohesive group by reason of being mistreated together, but even more so because we seem to have the same NK cell dysfunction which would indicate same/similar disease by Klimas' studies and the same post-exercise dysfunction in terms of oxidative stress, cardiopulmonary dysfunction, ion channel dysfunction, etc.) but when it comes down to it, it's sort of sematics whether we have ME-I, ME-II, etc. or whether we have ME and two to twelve other diseases. It's also kind of sematics that there are a couple of different kinds of Lupus, diabetes, etc.
 

WillowJ

คภภเє ɠรค๓թєl
Messages
4,940
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WA, USA
They knew or should definitely have known, i forget which, that it wasn't mono. Cheney and Peterson always said it wasn't. Mono goes away after a week or two. Every college kid knows that. James Jones wrote one of the first articles and even he said that. Holmes and Kaplan went out there for a ski trip, nothing more.

mono can last several months. however I don't doubt any of the rest of that :)
 

justinreilly

Senior Member
Messages
2,498
Location
NYC (& RI)
mono can last several months. however I don't doubt any of the rest of that :)

mono can last years in immuno depressed patients like cfs, hiv etc, although isnt the cause but a sign of poor immune function.

I think we all essentially agree. My understanding is that if one has normal immunity mono will be 'self-limited' to a number of weeks at the outside, but if one has an immune disease (like ME or AIDS) it can persist longer because the body can't defeat it. The cut-off for Fukuda is 6 mos but I think that's somewhat arbitrary.
 

WillowJ

คภภเє ɠรค๓թєl
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WA, USA
I thought (from what I read yesterday) the 6 months for Fukuda was because mono could last 4 months or so in severe cases in "normal" people (taking "normal" with a grain of salt)... only I had actually thought mono could last 6-12 months in some cases, but I'm not finding any support for that beyond one anecdotal case I know of