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guillain barre syndrome, cfs???

Discussion in 'General ME/CFS News' started by heapsreal, Mar 31, 2011.

  1. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Guillian barre syndrome sounds alot like cfs with onset from viral infections and effects the nervous system, even symptoms sound the same, plus theres no real diagnostic test, i wonder if a certain retro virus maybe implicated.
    http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001704/
     
  2. Countrygirl

    Countrygirl ME is not MUS

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  3. WillowJ

    WillowJ คภภเє ɠรค๓թєl

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    Dr. Bryon Hyde:

    http://www.imet.ie/imet_documents/BYRON_HYDE_little_red_book.pdf
     
  4. ixchelkali

    ixchelkali Senior Member

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    Unlike ME/CFS which just makes you a bit tired, right? <<sigh>>
     
  5. WillowJ

    WillowJ คภภเє ɠรค๓թєl

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    well, in many cases it takes many years for ME/CFS to put one in ER, and in G-B this can happen right away... but yes, point taken... it's much too true that ME/CFS is not taken seriously enough at all
     
  6. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    i suppose its a neuro-immune disease but its recognised but cfs isnt even though there is no blood test for it. i just read an article explaining brain imagery in aids patients showing how damage to the brain cause different cognitive problems as well as psychological problems. dr goldstein and cheney years ago were showing these sort of studies in cfs and the cdc just basically said it was crap, but in other neuro immune disease its used as a diagnostic tool. Im turning into a cranky old man of late, lol. olsers web that im half through is really making me realise what a bunch of boof heads are in control of the health systems of the world.

    cheers!!!
     
  7. Ian

    Ian Senior Member

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    guillain barre syndrome is what happens if you have a swine flu vaccine, and are especially unlucky
     
  8. jewel

    jewel Senior Member

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    My mother died of sequelae from Guillain Barre... Basically, in Guillain Barre, there is some sort of autoimmune process (often after an infection or vaccine) whereby the myelin sheaf to the nerves is attacked causing pain, difficulty in coordination, and a rapid paralysis over a period of days. If the disease is diagnosed quickly enough, the patient can be treated with immunoglobulins and/or plasma pheresis. The rest is supportive care and rehabilitation. So, a patient who has progressively been paralyzed to the point that s/he can not breathe on his or her own, the patient will have to be on a ventilator. Slowly, the myelin recovers fully or partially, and as the skill increases, the support is withdrawn (e.g, as the patient recoups the ability to breathe without ventilation, he or she is weaned off the vent). However, this is a rare disease, so it is often not diagnosed quickly enough. People who reach a point of full paralysis have less positive prognosis. Patients may undertake months to years of rehabilitative therapy in order to recuperate the physical/adaptive skills that they lost. Many (most) people are left with some level of residual physical disability, some quite sever, and many fatigue easily, even when recovered. It is a truly terrifying illness, though perhaps there are low-grade versions of this illness that do not ever get diagnosed but cause the persons suffering with it a great deal of CFS-like symptoms. A "recovered" person who has had Guillain Barre may have their illness experience acknowledged, yet have the residuals dismissed. (They no longer look sick, they can walk again (or roll their wheelchair); numbness in extremities, periferal weakness, and exhaustion can't be seen, as we all know.)

    I'm sorry, but I don't think that being in an ICU for months not being able to move at all is somehow an enviable situation to be in, even if everyone does recognize that the patient is quite ill. "Locked-in" patients may be seen as ill, but they have difficulty communicating, so often their cognitive skills are doubted. Why must be we envious of people with other, hideous neuro-immune illnesses? The last few months of my mother's life were terrifyingly awful for her, and she had suffered from a range of other chronic health conditions for many years prior. Would it be worse to have had CFS for years? I don't know. What I do know: There are innumerable shades and shapes of awful...
     
  9. insearchof

    insearchof 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.
     
  10. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Yes they back us in a corner and there we stay. Olsers web is a good read but struth its a long book and its firing me up, i need to take a couple of valium when i read it, lol.
    Sorry Jewel i wasnt trying to belittle Guillain Barre syndrome but making a point of it being as serious as any other neuro-immune disease, especially when u read of all the cancer rates coming out of incline village that are way above the national average. Plus i was trying to indicate that there know known cause for GB and that xmrv maybe a candidate for it too.

    cheers!!!
     
  11. WillowJ

    WillowJ คภภเє ɠรค๓թєl

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    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.

    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.

    It's also true that Guillain Barre makes a great object lesson for physicians and others to point out that a disease with multiple triggering infections and no clear ultimate cause can be and is allowed as a true disease. However the only person I know who had GB has recovered and lives a normal life. I will certainly look at this disease in another light, after hearing your story and knowing of the people who do not recover.

    Myasthenia Gravis is another good candidate for atypical or undiagnosed cases represented among ME/CFS patients.

    that actually describes Oxford, not Holmes or any other official CDC criteria (the unofficial so-called Empirical criterion does approximate Oxford rather than the previous CDC criteria). The CDC definitions have made some (lame) attempt at describing an infectious disease, but they thought they were describing chronic mono (as you stated).

    And, of course, nothing in Oxford distinguishes persons with Oxford-CFS from other illnesses, and nothing required by Fukuda (or Holmes) distinguishes Fukuda-CFS (or Homes-CFS) from other illnesses.

    CDC actually only glanced at about 10 patients. They evidently decided ahead of time what to find and did not deviate from purpose. Which amounted to allowing the media to diagnose "Yuppie Flu" rather than allowing the physicians who actually examined and treated the patients, and the ME experts who offered their time and expertise (such as Drs. Shelokov and Parish), to diagnose ME or any other specific or well-described disease.
     
  12. Angela Kennedy

    Angela Kennedy

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    This is a very interesting phenomenon, that residual disability is subject to dismissal, and I would say very similar to what happens in ME/CFS.
     
  13. Angela Kennedy

    Angela Kennedy

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    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.
     
  14. insearchof

    insearchof Senior Member

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    Hi Willow

    [
    I think I expressed that poorly Willow and can understand your response in light of that. Sorry. I think your correct in terms of the body of the definition - reference to symptoms. What I was referring to - were key characteristics that distinguish CFS from other illnesses ie unremitting fatigue (for a defined period) as the key distinguishing feature.

    I am not referring to symptoms listed within the definitions or even symptom categories - I am speaking about the key criteria which is used to distinguish CFS across the board: unremitting fatigue (for a defined period) the cause of which is unknown - ie syndrome.

    THe key distinguishing feature of ME is CNS dysfunction and it is the key distinguishing features of the illnesses which lead to their classification in medicine.

    So CFS has never been classified (ie therefore regarded by the medical profession) as a neurological or immunological illness. It is also why, CFS does not have a classification under such neurological or immune chapters in the WHO ICDs.


    .

    I think I mentioned that (or it may have been on another thread? ) -they went with a pre conceived idea that the outbreak was mono and therefore, narrowly sought evidence of mono - instead of looking at other possibilities.

    I cannot recall whether Shelokov and Parish ever diagnosed any of the Lake Tahoe co hort - at that time, and prior to the CDC's formulation of the CFS definition. Do you know?

    I read Oslers Web too long ago to recall. What I do remember and have read elsewhere, that Shelokov and Parish were invited to assist the pannel of CDC experts to define this 'new' illness. Shelokov, Parish and Hyde went into this meeting, but walked out - because they felt very early in the proceedings that the group was not going to consider anything other than a mono interpretation of the illnesses. They felt it pointless staying - that they would not be heard. So they left and the CDC defined the lake tahoe group on the basis of the mono evidence they gathered on their attendance to Lake Tahoe. But the ME experts contributed nothing to that meeting at which the CDC formed the first definition of CFS.
     
  15. toddm1960

    toddm1960 Senior Member

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    Olsers Web should be required reading for all with this disease, those that fail to learn history are doomed to repeat it.
     
  16. *GG*

    *GG* Senior Member

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  17. August59

    August59 Daughters High School Graduation

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    Very interesting article. I had Meningococcemia when I was 8 years old and my parents always thought I got it from swimming in the river. I don't remember much about it except being in the hospital for 10 days and being quarantined for another week after I got home. I have granulomas that show up in different organs and the doctors always say they came from my having meningococcemia when I was young.
     
  18. WillowJ

    WillowJ คภภเє ɠรค๓թєl

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    first, I think this is off-topic to the current thread. If Heapsreal would prefer and if ISO is agreeable, could a mod please move the posts talking about definition to another thread? Perhaps it could be titled, "Lake Tahoe, the CDC, and the redefinition of a neuroimmune disease". Only I think some posts would have to be split up and I'm not sure of the technical feasability of this. Heapsreal, what's your preference?

    Hi, ISO.

    CFS is not listed in WHO at all, except in the index, where it is referred to PVFS and ME. You're correct that it hasn't (in USA convention) been formally classified as neurological or anything else--it remains listed as vague signs, symptoms, and ill-defined conditions. ICD-10-CM will continue to make provision for this listing, unfortunately.

    6 months unremitting fatigue is not a unique feature of anything. This cannot possibly describe a disease, because it describes so many diseases. That people diagnosed with CFS cannot be figured out as having anything else says more about the (lack of) persistence (and lack of education) of the physician (and that ME has been struck from ICD-9-CM, making it untaught and unavailable so doctors don't know to check for this neurological disease) than about the nature of the dieseas(es) of patients having CFS. (And it says a lot about the concept of medicalizing fatigue as a disease category in and of itself, rather than as a symptom/red flag requiring investigation.)

    CFS is purely a convention, and was originally meant to refer to the condition had by the persons at the Lake Tahoe outbreak, which was by the best expert assessments, ME. Therefore by my assessment, CFS is a dumb name and poor case definition for ME, which convention accidentally-on-purpose (and purposely, depending which group is using the convention) includes cases of other diseases.

    yes, the early non-CDC investigators had thought that it was mono; I'm not sure the CDC ever carefully investigated that... pretty sure their goal was to make sure no one panicked or overreacted. CDC is more a center of Crowd control than of Disease control. I didn't read Osler's Web, though, so I'm not sure if looking at EBV was included as a secondary goal. But on the OW website, I'm pretty sure the account there said they'd already decided to find nothing of importance. And that's what Dr. Bryon Hyde said, too.

    all I know is that Dr. Bryon Hyde said the same thing you said above. It's in his Little Red Book that I linked on the previous page.
     
  19. insearchof

    insearchof Senior Member

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    Willow

    CFS is not given a classification, ( ie is in the index ). Is precisely what I said.

    Given you object to my discussion on definitional aspects and their applications, I will wait for the Mods decision.

    On that point, the Mod might like to note: my view is that on current medical definitions CFS and ME are distinct illnesses. Historic medical litrature associates Enteroviral infection as the cause of ME. ME was associated with and once classified as non paralytic polio. GBS was also. It was regarded as "ascending polio". Therefore, the distinction between ME and CFS and the historic medical literature is relevant and important in order to put the pieces of the puzzle together.....which in turn leads into why GBS may be mistaken for ME.


    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.

    For what it's worth Willow et al I am not overly interested in discussing at length here or in another thread definitional distinctions.....there are two other threads running at the monument on the matter which I have been contributing to and my views known. Here: http://forums.phoenixrising.me/showthread.php?10447-IMEA-New-M.E.-Association. and here: http://forums.phoenixrising.me/showthread.php?10017-Diagnostic-Criteria-can-we-resolve-our-community-s-differences&p=169007#post169007.
     
  20. Snow Leopard

    Snow Leopard Hibernating

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    What is 'low-grade' Guillain Barre syndrome? I myself was investigated for this several months after a reaction to a vaccine that was later diagnosed as CFS.

    But I now have 'unusual' symptoms like mild upper eyelid ptosis, but this is enough to cause a prominent epicanthal fold on my left side as well as chronic pain in that area.

    It does make you wonder as to whether there are multiple pathologies for CFS-like clinical patterns. Something that is not well accounted for in the typical hypothesis, including that of XMRV.
     

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