• Ζαμπόνι, ΧΕΝΦΑ και ΣΚΠ - Zamboni, CCSVI and MS

  • Η πάθηση της Χρόνιας Εγκεφαλονωτιαίας Φλεβικής Ανεπάρκειας, η θεωρία της και η θεραπεία της.
Η πάθηση της Χρόνιας Εγκεφαλονωτιαίας Φλεβικής Ανεπάρκειας, η θεωρία της και η θεραπεία της.
 #78963  από swt
 Δευ Οκτ 08, 2012 9:26 am
Σας ευχαριστώ κι εγώ για τα καλά σας λόγια, αλλά ας αλλάξουμε σελίδα (κυριολεκτικά και μεταφορικά).
Δεν πρέπει να ξεχνάμε ότι η αιτία της ΠΣ παραμένει άγνωστη (η ΧΕΝΦΑ όπως και η αυτοανοσία είναι απλώς θεωρίες που δεν έχουν ακόμη αποδειχθεί). Πρόκειται πιθανότατα για πολυπαραγοντική νόσο, επομένως κάτι που βοηθάει κάποιον δεν είναι απαραίτητο ότι τους βοηθά όλους, όπως και κάτι που δεν βοηθά κάποιον δεν αποκλείεται να βοηθά κάποιον άλλο. Έχοντας αυτά κατά νου, δεν μπορείς να είσαι απόλυτος.

Μια μελέτη που έπεσε στη αντίληψή μου και βλέπει την ΠΣ από μια συστημική σκοπιά είναι η ακόλουθη. Προσπαθεί να συνδυάσει τις διάφορες θεωρίες και να ανακαλύψει τα αίτια της νόσου. Νομίζω έχει αρκετό ενδιαφέρον:

Investigating the root causes of multiple sclerosis using systems analysis and dynamics, developing an integrated treatment strategy

Thomas Ragnar Wood (1), Ulrik Sverdrup (2), Kristín Vala Ragnarsdóttir (3), Harald U. Sverdrup (4)
(1) Guy's Hospital and St Thomas' Hospital, Great Maze Pond, London SE1 9RT, Great Britain
(2) Physics Engineering, LTH, Lund University, SE-221 00 Lund, Sweden,
(3) Earth Sciences, University of Iceland, 101 ISReykjavik, Iceland,
(4) Chemical Engineering, Lund University, Box 124, SE-221 00 Lund, Sweden
 #78965  από Vasoula
 Δευ Οκτ 08, 2012 9:55 am
Το διαβαζα χθες στο thisisms και μπορω να πω οτι ειναι η πιο απλη και καλη προσεγγιση που εχω δει σχετικα με την σκληρυνση σαν διαφορετικες παθησεις κατω απο την ιδια ομπρελα, συμφωνω απολυτα σε αυτο που λες οτι - πρεπει - να ειναι πολυπαραγοντικη νοσος απλα δεν ειδα (η μηπως δεν προσεξα γιατι δεν το διαβασα λεπτομερως;) να αναφερεται σε καποια γονιδια τα οποια ειναι συνυπευθυνα καποιοι να αναπτυσουν τη νοσο ενω αλλοι οχι οντας βρισκομενοι στις ιδιες σχετικα συνθηκες!
Επισης ειναι ενδιαφερουσα η αναφορα του στην peroxynitrite (και στη σχεση της με το χαμηλο ουρικο οξυ στη ΣΚΠ) στο νιτρικο οξυ αλλα και στη σημασια των συμπληρωματων για τα οποια καναμε μεγαλη συζητηση αν και γιατι πρεπει να παιρνονται με πολλους να το αμφισβητουν.

ΥΣ: να μην γραψω κι εγω μπραβο γιατι ειναι κοινοτοπο αλλα αξιζουν πραγματi τετοια αρθρα αφου ειναι οπως λενε οι αγγλοι "eye openers"
 #78970  από swt
 Δευ Οκτ 08, 2012 1:45 pm
Vasoula έγραψε:[[...] απλα δεν ειδα (η μηπως δεν προσεξα γιατι δεν το διαβασα λεπτομερως;) να αναφερεται σε καποια γονιδια τα οποια ειναι συνυπευθυνα καποιοι να αναπτυσουν τη νοσο ενω αλλοι οχι οντας βρισκομενοι στις ιδιες σχετικα συνθηκες!
[...]
Κάνει μόνο μια μάλλον έμμεση αναφορά στα γονίδια, όταν λέει ότι η διάρρηξη του αιματοεγκεφαλικού φραγμού οδηγεί σε ΠΣ τα επιρρεπή άτομα (susceptible individuals).
 #79268  από billios
 Κυρ Οκτ 14, 2012 11:18 am
LYON, France -- The largest study to date testing the venous-obstruction theory of multiple sclerosis failed to support it, leading the Italian Multiple Sclerosis Society to declare the theory dead.
Reported here by leaders of the group, known by its Italian abbreviation AISM, the study of nearly 2,000 individuals with blinded central imaging analysis found the condition in only about 3% of MS patients and in only slightly fewer healthy controls or patients with other neurological conditions.
Key data were released at a press briefing by principal investigator Giancarlo Comi, MD, of the University of Milan, and other study leaders in advance of Comi's formal presentation, scheduled for Saturday at the annual meeting of the European Committee for Treatment and Research in Multiple Sclerosis.
They characterized the study as the largest yet conducted on the so-called chronic cerebrospinal venous insufficiency theory (CCSVI), advanced in 2009 by Paolo Zamboni, MD, of the University of Ferrara in Italy.
The CCSVI theory quickly took the MS community by storm, leading many patients to seek venous angioplasty and stenting procedures in hope of obtaining relief or even a cure, as Zamboni and some other vascular surgeons claimed was possible.
But the theory also drew substantial criticism, especially after numerous other researchers were unable to reproduce Zamboni's original findings of 100% presence of CCSVI in MS patients and 0% in non-MS controls. Some groups were unable to detect CCSVI in more than a small fraction of patients, while others found that it was relatively common but without specificity for MS.
In the new study, sponsored by AISM and called CoSMo, ultrasound analyses were performed on 1,874 individuals at 35 clinics throughout Italy. A total of 107 were subsequently excluded because of technical problems with the images or because participants were found not to meet the specified inclusion criteria (such as age or disease duration).
The analysis included 1,165 patients with MS (including 104 with clinically isolated syndrome), 376 healthy controls, and 226 patients with other neurological diseases.
All participants were evaluated for MS under standard diagnostic criteria.
Initial diagnoses of CCSVI or its absence were made by the sonographers at each clinic, who had received special training in cerebral venous imaging. Some of them had previously trained in Zamboni's clinic. The local sonographers were blinded to participants' diagnoses.
The local clinic diagnoses were then reviewed by one of three blinded central imaging experts: Erwin Stolz, MD, of Justus-Liebig University in Giessen, Germany; Massimo Del Sette, MD, chairman of the Italian Society of Neurosonology and Cerebral Hemodynamics; and Giovanni Malferrari, MD, chairman of the Italian Interdisciplinary Neurovascular Society.
When there was disagreement between the local and central readers, all three of the central readers reviewed the images, with the opinion shared by two counted as the final diagnosis. Analyses in the two-year study were completed last month.
The prevalence of CCSVI as determined under this process was as follows in the three groups of participants:
MS patients: 3.26% (95% CI 2.38% to 4.45%)
Healthy controls: 2.13% (95% CI 1.10% to 4.14%)
Other neurological disorders: 3.10% (95% CI 1.58% to 6.44%)
On the basis of these small values, and the lack of significant (P<0.05) differences between them, the AISM issued a statement declaring that "CCSVI is not a disease connected to multiple sclerosis."
Moreover, it continued, "for people affected by MS, there is no need to carry out additional tests to diagnose CCSVI, nor is vein surgery required."
The AISM is the first national MS society to make such a conclusive determination. In the U.S. and Canada, research on CCSVI commissioned by the major organizations in those countries is still under way, and no similar declaration is likely until those studies are completed.
Comi said that Zamboni had been invited to participate in CoSMo, and did for a time. But he quit before all the sonographers had been trained, objecting to multiple aspects of the study design that he believed would bias the results against finding a relationship between CCSVI and MS.
Stolz said that the sonographers were not trained specifically in Zamboni's method, but that he and others who had conducted the training had extensive experience in cerebrovascular ultrasound imaging.
He noted that this had also been the case with other groups that failed to replicate Zamboni's findings, despite having been trained in his clinic. Stolz added that a diagnostic procedure is only meaningful if it can be taught and used reliably by other experienced practitioners.
"If it is not repeatable, it has no value," he said.
Comi said that other researchers would be permitted to conduct their own evaluations of sonograms collected during the study, as long as the blinding to clinical diagnosis was maintained.
Initial diagnosis of CCSVI in the individual clinics in fact varied widely, Comi said. At one clinic, the condition was found in 60% of participants; in two others, the prevalence was 0%.
Overall, the detection rate at the initial step was considerably higher than after central review: 15.9% among MS patients, 12% in healthy controls, and 15% in patients with non-MS neurological disorders. Comi noted that even at these higher prevalences, there was still no meaningful difference between MS patients and other participants.
He also indicated that central reviewers rarely overruled the local clinic sonographers on negative diagnoses. In only 3% of cases in which the local sonographer found no CCSVI did the central reviewers say it was present.
Agreement was poorer for positive diagnoses. Central reviewers overturned 89% of the CCSVI diagnoses made by local sonographers.
Stolz attributed the lack of concordance on positive findings to the fact that "local sonographers are not on the moon." He suggested that seeing participants, and noting any physical or mental impairments, could have biased them toward diagnosing CCSVI.
Gianluigi Mancardi, MD, head of the AISM's scientific committee and co-principal investigator on the study with Comi, said he hoped the study would put the CCSVI theory permanently to rest.
"In our opinion, this is the final answer," he said.
Noting that the AISM had spent some $2 million to conduct the CoSMo study, he said the group now hoped to direct its attention to more fruitful areas of research in MS and its treatments.
The study was funded by the Italian Multiple Sclerosis Society.
Comi reported consulting fees for participating on advisory boards from Novartis, Teva, sanofi-aventis, Merck Serono, and Bayer Schering; lecture fees from Novartis, Teva, sanofi-aventis, Merck Serono, Biogen Dompè, Bayer Schering, and Serono Symposia International Foundation. Mancardi reported honoraria for lecturing, travel expenses for attending meetings, and financial support for research from Bayer Schering, Biogen Idec, sanofi-aventis, Novartis, and Merck Serono.
Stolz declared that he had no relevant financial interests.
http://www.medpagetoday.com/MeetingCove ... RIMS/35292


Πηγη ccsvi lokator
 #79275  από Στάθης
 Κυρ Οκτ 14, 2012 12:37 pm
"Comi said that Zamboni had been invited to participate in CoSMo, and did for a time. But he quit before all the sonographers had been trained, objecting to multiple aspects of the study design that he believed would bias the results against finding a relationship between CCSVI and MS."

"The study was funded by the Italian Multiple Sclerosis Society."

No comment.....
http://www.thisisms.com/forum/chronic-c ... 19894.html
 #79283  από Στάθης
 Κυρ Οκτ 14, 2012 2:47 pm
billios έγραψε:Σα να εχει παρει ολιγα νερα η βαρκα παντως...
Η αλήθεια είναι .... από βάρκα που μπάζει λίγα νερά....μετά την επέμβαση έγινα ταχύπλοο που μπάζει ολίγα νερά.

Έχω ένα κουβά παραδίπλα σαν καλό καπετάνιος να βγάζω τα ολίγα νερά.... και προσπαθώ να γεύομαι με χαμόγελο & δυναμικά την γλυκιά πλεύση του ταχύπλοου σε θάλασσες με μποφόρ ή χωρίς :-D

Εν μέρη δηλαδή έχεις δίκιο... γιατί χρειάζομαι έναν "κουβά" αλλά

δοκίμασέ το bill ... και μετά μπορούμε να το συζητήσουμε την διαφορά βάρκας.... ταχύπλοου :handgestures-thumbupright:
 #79286  από swt
 Κυρ Οκτ 14, 2012 4:37 pm
Ας περιμένουμε να δούμε κάποια επίσημη θέση από τον καθ. Ζαμπόνι. Είναι πάντως γνωστό ότι ο ίδιος είχε αποχωρήσει από τη συγκεκριμένη μελέτη, διότι θεωρούσε πως οι υπερηχολόγοι δεν είχαν εκπαιδευτεί σωστά. Μάλιστα ευρήματα που αυτός θεωρούσε παθολογικά, διδάσκονταν στους υπερηχολόγους ως φυσιολογικά.
Βλ. για παράδειγμα το ακόλουθο μήνυμά μου στο TIMS (thisisms):
http://www.thisisms.com/forum/chronic-c ... ml#p141205
Καλύτερα όμως να δει κάποιος όλα τα σχετικά μηνύματα για να αποκτήσει συνολική εικόνα.

ΥΓ. Η θέση του καθ. Ζαμπόνι σχετικά με τη μελέτη αυτή, μπορεί να βρεθεί εδώ: http://ccsvitalk.gr/blog/?p=4937
 #79292  από Vasoula
 Κυρ Οκτ 14, 2012 9:23 pm
Και λιγη προσοχη στα ψιλα γραμματα:
-Note that this study was published as an abstract and presented at a conference. These data and conclusions should be considered to be preliminary until published in a peer-reviewed journal.
-Explain that investigators in the CoSmo study found chronic cerebrospinal venous insufficiency (CCSVI) was uncommon in multiple sclerosis patients.
-Note that this double-blinded study also failed to find a diagnosis of CCSVI discriminated among patients with MS, normal controls, and those with other neurological conditions.
(δεν αναφερει με ποια κριτηρια εξαγαγαν τα συμπερασματα δεδομενου οτι ενας απλος αγγειολογος μπορει να αποφανθει οτι καποιος πασχων δεν εχει προβλημα αν δεν ακολουθησει το συγκεκριμενο πρωτοκολλο διαγνωσης)

Επισης:
The study was funded by the Italian Multiple Sclerosis Society.
Comi reported consulting fees for participating on advisory boards from Novartis, Teva, sanofi-aventis, Merck Serono, and Bayer Schering; lecture fees from Novartis, Teva, sanofi-aventis, Merck Serono, Biogen Dompè, Bayer Schering, and Serono Symposia International Foundation. Mancardi reported honoraria for lecturing, travel expenses for attending meetings, and financial support for research from Bayer Schering, Biogen Idec, sanofi-aventis, Novartis, and Merck Serono.
Stolz declared that he had no relevant financial interests..


No comments για το τελευταιο, οποιος εχει αποψη πως γινονται οι ερευνες κατανοει, αλλωστε δεν μας απαντα εφοσον ειναι μονο 3+% το ποσοστο αυτων με στενωση και ΣΚΠ πως ειναι δυνατον το ποσοστο οσων κανουν επεμβαση και βελτιωνονται απο λιγο εως δραματικα να ειναι τραγικα μεγαλυτερο, δεν ξερουν αυτοι αν λειτουργουν νοιωθουν αισθανονται καλυτερα η ζουν ψευδαισθηση;


Δε νομιζω οτι περιμενει κανεις μια ερευνα να του πει αν ειδε βελτιωση (παροτι προηγουμενη ερευνα διαπιστωσε το αντιθετο ακολουθωντας το πρωτοκολλο Zamboni για τη διαγνωση) ας κανουμε στο φορουμ μια ερευνα αναμεσα σε οσους καναν επεμβαση ΧΕΝΦΑ να δουμε ποσοι ειδαν βελτιωση και να βγαλουμε τα δικα μας συμπερασματα αν και υπαρχει σχετικη σελιδα χρηστων CCSVI με στατιστικα αποτελεσματα οπου ειναι διαθεσιμα ολα τα στοιχεια των συμμετεχοντων οπως e-mails κλπ αρα δεν ειναι μη υπαρκτα προσωπα, αλλωστε η σελιδα εγινε με πρωτοβουλια καποιων γνωστων στο thisisms μελων οπως ειναι η "cheerleader" που γνωρισα η ιδια προσωπικα: http://www.ccsvi-tracking.com/index.php
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