Research links for GBS related fatigue
AnonymousJanuary 17, 2008 at 10:21 pm
Hmmm… I can’t delete this thread. Anyway, I encountered post word limits, so I had to create a better thread to deal with this limitation. Please let this thread fade and go to the following thread for the information, comment there if you like.
AnonymousJanuary 18, 2008 at 3:42 pm
gene if you have other related links please post them below! I omitted a few via GBSFI hoping other participants might find them and link below.
Here is a great article on Chronic fatigue. It really shows how difficult it is to define what CFS actually is, not to mention the etiology and treatment options.
Related to this article, I’d guess we have the CFS related to “Sudden onset cases” with Neurological/cognitive manifestations similar to that described by MS patients- the nerve damage to the parasympathetic system seems to be a key issue (GBS hit my immunological system after a flu in ’97, suggesting infectious etiology might be involved). What I find confusing is how others afflicted with seemingly greater nerve damage do not experience the severity of CFS as I do. Are there any related pathologies which might be indicative of CFS issues while the disease is active? Do treatment modalities impact outcomes in terms of this residual?
AnonymousJanuary 18, 2008 at 9:25 pm
Hi Rocker: I downloaded sometime from somewhere a phd dissertation written in the Netherlands on fatigue and GBS. Perhaps someone on this forum mentioned it but I just don’t remember. It is a few hundred pages long and reviews all the material you presented and also significantly concludes that the nerve conduction test does not relate to fatigue-people can have perfectly normal results and still suffer from residual fatigue. Jeff
AnonymousJanuary 18, 2008 at 10:21 pm
i have tons of gbs info poorly organized on my hard drive mostly w/o documentation as to where i got it. it’s that way cuz it was just info for me &, if i felt it was valid, i saved it. over the years i have referred to it for others. years ago i was thinking of desktop publishing a not-too-big manual abt gbs from the layman’s point of view. it was to include all phases of gbs from initial symptoms to residuals 20 yrs later, but now see it won’t happen. years ago an oriental gbser wanted to start a thread similar to what i had in mind so we did not have to repeat things over & over. it was nixed by the keepers of the keys. take care. be well.
gene gbs 8-99
in numbers there is strength
AnonymousJanuary 20, 2008 at 2:24 am
Drag, gene. This forum needs definative threads- updated regularly- concerning a variety of subjects. Perhaps we could host threads on differet key subjects and bump them from time to time, so the searcher might find links to data they might find significant. grrr
Not directly, Linda, although there are similarities. Honestly, since I am fortunate to just deal with the GBS residuals I have not researched fatigue and CIDP. However, if you do find any research links related to fatigue and CIDP please post them below!
Go do some digging, Jeff!
/me looks for links from that lazy Jethro 🙂
AnonymousJanuary 20, 2008 at 8:31 pm
-The vexed question of residuals in Guillain Barre Syndrome.”Steinberg also commented that patients might develop fatigue, particularly with sustained activity, and demonstrate poor endurance, even with normal muscle strength. This could lead to serious problems for those who worked long hours and/or had physically demanding jobs.”
See, now what I will do is visit this thread from time to time and update the lead post, which will then include articles posted below the lead post updated by participants, which makes it a “Definitive thread” on research links for GBS related to fatigue. That way the visitor does not have to read through the thread, justthe upper most post.
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