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חדשות ועדכונים לקבוצה

מפגש של קבוצת התמיכה יתקיים ביום ראשון, 17 ספטמבר 2017, בין השעות 17:00-19:00 במשרדי חברת PERIGGO - רחוב הלח"י 21 בני ברק (סמוך לקניון איילון ברמת-גן).

יש לעבור דרך השומר שיושב בכניסה לבניין או להגיע למעלית מהצד הימני של המבנה (צמוד לקמחי תאורה).


17:00-17:30 - התכנסות ​

17:30 - פתיחה - חן רוזנברג

17:40 - הרצאתו של אלדד גרפונקל, חולה CIDP, איש שיווק, יזם ויועץ אסטרטגי על ניהול המחלה.

18:30 - שאלות ושיח פתוח

19:30 - סיום

בכל שאלה או צורך ניתן לפנות לחן, קובי או תמר או באמצעות הפורומים - פרטים באתר.



הרשמה לניוזלטר

אבקש לקבל מחקרים, מאמרים ועדכונים אודות המחלה

סרט וידאו: המסע של קית'

סרט מתאר את ההחלמה והשיקום של קית' מארצות הברית. לצפייה במסך גדול לחץ כאן

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עייפות מתמשכת לאחר החלמה מגיליאן בארה



Gareth J. Parry Professor of Neurology

University of Minnesota.

GBS is a disorder whose excellent prognosis is invariably emphasized.  It is widely accepted that Guillain-Barre syndrome has an excellent prognosis with 75%-85% of patients making a complete recovery.  However, many of my patients have complained to me of persistent symptoms that continue for years after the initial paralytic event and that significantly detract from the quality of life.  The most prominent of these symptoms is fatigue.  I have made no systematic study of the proportion of patients with residual fatigue but it is certainly more than the 15%-25% that the figures in the literature suggest.  Most studies of the ultimate outcome in GBS are based on telephone interviews or retrospective chart reviews and seemingly minor complaints may have been missed or disregarded. 

For example, patients are often asked if they have returned to their previous work or other previous activities but they may not have been asked whether they have more difficulty performing their former activities.  Very few studies have focused on residual effects.  In one small study from Australia, Dr J. McLeod and his colleagues (J. Neurol Sci 1976; 27:438-443) examined 18 recovered GBS patients and found that half of them had objective residual neurological abnormalities.  Even then these residual abnormalities were considered to be significant in only four patients. 

Fatigue in this group of patients was not mentioned.  In another study Burrows and Cuetter (1990) reported on four patients who had made an apparently complete recovery in terms of muscle strength and yet had longstanding residual loss of stamina.  They were all armed forces personnel who had been assessed using the Army Physical Fitness Test (APFT), a quantitative measure of neuromuscular endurance, prior to their illness.  Each suffered from GBS of moderate severity and each was judged to have made a full recovery in terms of muscle strength assessed during neurological examination.

 However, the APFT had not returned to the former level 1.2-4 years after the acute illness.  A recent important paper from Dr. I.S.J. Merkies and colleagues in Holland (Neurology 1999; 53:1648-1654) has established that residual effects from GBS are much more common than has been generally reported and that seemingly minor neurologic abnormalities may still result in annoying disabilities.  The study used a validated index of fatigue severity to assess residual disability.  It included 83 patients who had suffered from GBS an average of five years previously.  About 80% of these patients experienced fatigue that was considered severe enough to interfere with their life despite the fact that the majority had normal strength or only minor weakness.  They noted also that the fatigue did not seem to improve over time; the fatigue index score was the same in patients in whom many years had elapsed as it was in patients whose acute illness had occurred only 6-12 months previously.  

This paper provides sound scientific support for the validity of the observations of my patients who regularly complain of fatigue even when they have returned to all or most of their former activities and who are working full time at their former jobs.  Although their strength may be normal when

they are examined in the doctor’s office they are clearly unable to sustain

the same level of physical activity that they had performed prior to their GBS.  This research validates the complaints of so many GBS patients that although their strength may return to normal, fatigue continues to be a problem for many years and sometimes permanently.  More research is needed to understand the basis for this fatigue and to find a treatment.


ברוכים הבאים

הגעתם לאתר  הרשמי של קבוצת התמיכה בישראל לחולי GBS ו CIDP. האתר מהווה מענה לאלו שאובחנו כסובלים מתסמיני המחלה, לחולים ועבור משפחות התומכות בחולים.

הערה חשובה: המידע באתר ו/או המענה דרך הפורום אינו מחליף בדיקה רפואית מוסמכת ואינו מהווה "אבחנה רפואית" אלא מהווה מקום להתייעצות, החלפת דעות, שיתוף במידע וקבלת סיוע ומשוב מגולשים בעלי עניין זהה במחלה והשלכותיה.

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