Talk:Guillain–Barré syndrome

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Treatment[edit]

"These two treatments are equally effective"

 No problem with this

"and a combination of the two is not significantly better than either alone."

 Big problem with this

I had Guillain-Barre (and 100% recovery, thank goodness) and received both treatments. It is very important to realize that the two treatments are completely incompatible. That is, they absolutely cannot be administered simultaneously, but if administered consecutively, the end result can be superior to just using one of them (or not). With intravenous immunoglobulins (aka IVIG) you are getting other people's white blood cells, in the hope that it makes your own white blood cells behave themselves, as opposed to what they are doing (destroying your peripheral nervous system's myelin sheath). With plasmapheresis, on the other hand, (almost) all of your white blood cells are being removed from your blood, in the hope that the new white blood cells generated by your system (bone marrow) will behave themselves. Stay with me here, either you are getting a whole bunch of extra white blood cells, or you are losing a whole bunch of the white blood cells you already have. You cannot do both at the same time, don't you agree? The idea is to (a) use IVIG to shock the system into some kind of stability, although it is not a cure then (b) once stability but not cure is achieved, to use plasmapheresis to effect a cure. At least, that is what my doctors told me they were doing. And it worked. So my experience is that IVIG, followed by plasmapheresis, *is* significantly better than either alone. Not too sure what to do about providing a reference. IVIG is extremely expensive, so may not be an option in every health-care context. Plasmapheresis is, essentially, just a form of dialysis, so it is not that expensive and should be generally available. — Preceding unsigned comment added by Gsa703 (talkcontribs) 19:09, 7 October 2013 (UTC)

Prognosis[edit]

This section does not appear to have rigorous references.

"Recovery usually starts after the fourth week.."

I had Guillain-Barre. My experience with my doctors was that my recovery time was a direct reflection of my time-to-diagnosis. That is, the sooner I was diagnosed, the less my recovery time. In my case, I was diagnosed in about 50 hours and had a recovery time of about 50 weeks. So one week for every hour until diagnosis (and treatment).

That said, let's talk about when recovery starts. Presumably that means when things start stabilizing. Again, I suggest that it totally depends upon how fast the patient gets to a knowledgeable physician. In my case, I think my recovery started after the second week, but that is not a reflection of Guillain-Barre, nor of the physician, but solely of how fast I noticed that I had a problem, and did something about it.

"About 80% of patients have a complete recovery.."

Where does this come from? My doctors said that 98% of patients have a recovery in which there are no long-term disabilities, such as having to use a cane, or a walker, or take medication, etc. Aside from the fact that I should probably not donate blood, I have zero effects upon my well-being from having had Guillain-Barre. — Preceding unsigned comment added by Gsa703 (talkcontribs) 19:39, 7 October 2013 (UTC)

Distinguishing between Gilbert and Guillain–Barré Syndromes[edit]

I feel that it would be a good idea to add a "not to be confused with" label at the top of the page to distinguish between Gilbert's and Guillain–Barré syndromes. The latter is often pronounced like "gillie-bear" while Gilbert's is sometimes pronounced "jill-bear" (apologies for the bad formatting), opening up the possibility of people looking at the incorrect article, so I'm going to add a

Not to be confused with [[:{{{1}}}]].

tag to both articles. I leave this section open to discussion of the topic as both can be confusing to spell given their non-English etymologies. Zedtwitz (talk) 02:32, 18 February 2014 (UTC)

I really doubt that anyone will make the confusion, because Gilbert is one name, and "Guillain-Barré" is always used together. Wikipedia:Hatnote describes the guidance. JFW | T@lk 14:25, 20 February 2014 (UTC)

Why are the H1N1 vaccine cases not included in the cause section?[edit]

I recently added info and links from a 2009 study of H1N1 influenza vaccines and had it removed citing a link supposedly 'fisking' the ones I provided. Why are recent studies not included in this article? It's currently dated to be archaic (1977?, really?). Editing is still new to me, so please help modify the cause section to include recent info.

I removed the sources because they did not meet the criteria outlined in WP:MEDRS; we prefer secondary sources in high-quality publications. I am particularly worried by the reference to MCT lawyers - this is a no-win no-fee outfit, and their content is not peer reviewed. JFW | T@lk 19:26, 30 June 2014 (UTC)


Guillain-Barre Syndrome Notable Cases[edit]

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If the article was authored by the subject of the article and the references take us to the website of said author, is it considered a Primary Source? Regards,  Aloha27 talk  17:44, 20 October 2014 (UTC)

Aloha27, yes. If the link went to the original publication of the article (in this case the Medical Post), it would still be a primary source, but at least it would be from a secondary website. Primefac (talk) 18:02, 20 October 2014 (UTC)
Thank you for that. Regards,  Aloha27 talk  18:44, 20 October 2014 (UTC)

This is an encyclopedia, not People magazine. We should not restrict ourselves to celebrities – Hollywood actors, sports stars, musicians, TV anchors, a few politicians – which at present comprise all the Guillain-Barre case reports on Wiki. The only case of real, enduring interest in that list is US President Roosevelt. Your list satisfies a longing to worship celebrities, but that is not enough. After all, we are working under the heading "Notable Cases," not "Notable People."

"Notable Cases" should include case reports that actually teach something about the disease – information not found elsewhere – and case reports that illuminate how the rare nature of this disease creates an unforseen struggle within the health-care system. This would serve the public interest. Medical Rights (talk) 04:35, 19 October 2014 (UTC)

Re Ms. Sil's Guillain-Barre Reference[edit]

■  Ms. Sil – Primary reference: The article in question was published in The Medical Post, issue 29(5):32. This journal "gives priority to doctors"; it is their stated mandate. The Medical Post doesn't typically accept patient accounts. That type of writing is left to home-style magazines and media reports; note such consumer sources have a blunting similarity with respect to GBS accounts; all sound the same apart from a change of name, job, and city. By contrast, The Medical Post accepts only articles of interest to doctors, which means that article must teach something new, even to doctors.

■  Ms. Sil – Secondary reference #1: The Saskatoon Star Phoenix newspaper reprinted Ms. Sil's entire article. Reference: What to Do When Doctor Doesn't Know Best, Star Phoenix, Lifestyle cover story, 24 September 1994.

■  Ms. Sil – Secondary reference #2: In the same edition of the Star Phoenix, in-depth editor Katheryn Warden devoted her entire column to discussing that piece. Reference: Informed Patients Involved in Medical Decisions, Star Phoenix, page C9, 24 September 1994.

■  Shortly, these secondary references will be available online. For independent verification visit a University Library, or any large Public Library, and consult their newspapers stored on micro-fiche.

■  Academic Qualifications: Ms. Sil earned an M.Sc. from the University of British Columbia in the field of Physics (Lasers and Nonlinear Optics).

■  Peer Review: The Medical Post – before publication as it does for any article – vetted at length the medical information from Ms. Sil. As did the journalist Ms. Sil collaborated with at the Star Phoenix.

■  The notable concept in Ms. Sil's article is the role reversal between doctor and patient. Many patients struggle to get diagnosed, but very few do the work themselves, with no medical training. Ms Sil applied for and obtained her own medical chart while she was in the hospital and used that chart to work alongside her doctors. She wrote notes to correct errors in her chart; these were accepted. This had the full blessing of Hospital Administration.

■  Ms. has, on her website Tuum Est, her diagnostic results for Guillain-Barre. Not just word reports, but graphs of Nerve-Conduction Velocity (EMG) tests. There are two sets of graphs, for tests done 3 weeks apart, giving a very clear picture of how the peripheral nerves demyelinate. Since the disease is rare, this would interest doctors (and med students), perhaps most in less advanced countries of the world. Medical Rights (talk) 04:35, 19 October 2014 (UTC)


Hold Wikipedia to an Academic Standard[edit]

(1) Wikipedia is an encyclopedia, and the standard should be academic. On the Guillain-Barre page, the focus should be "Notable Cases" – the section's actual title. The title is not "Notable People." Whether a person is a rock star, football coach, or politician has little to do with whether readers will absorb anything of value from the reference. Stars likely receive better medical care during the acute stage of their disease, because then MDs and nurses are under a media magnifying lens, and don't want to be skewered for mistakes or neglect. Thus media reports of "star" cases may not mirror the average patient's experience. Later on when the media report becomes a simple reference, know this: Doctors are not star-struck and neither are most people searching for medical information. An "interesting case" refers to medical interest; doctors care not a jot about the glamor level of a patient's life.

(2) Perhaps there could be three lists: / Notable Cases (Academic) / Notable People (Stars) / GBS Patients Who Published Books /

(3) JDWolff removed Ms. Sil's reference from the Guillain-Barre page on Wiki. On his personal page, JDWolff says he is a “doctor of acute medicine.” If that is true (and I assume it is), then that places JDWolff in a conflict-of-interest position. Physicians as a group have a reputation for being highly sensitive to criticism – any criticism – of other doctors, of clinical skills, of hospitals. I expect JDWolff is no different. JDWolff should not be allowed to remove items that criticize health care, without a backup opinion from an objective administrator at Wiki (objective = someone not connected with health care).

(4) Recently, B.C. doctors began a campaign to increase the medical worth and accuracy of Wiki. Source: Wikipedia’s Medical Errors and One Doctor’s Fight to Correct Them (CBC News, 21 August 2014) at http://www.cbc.ca/news/canada/british-columbia/wikipedia-s-medical-errors-and-one-doctor-s-fight-to-correct-them-1.2743268 That news report says: "Studies have shown that, on average, at least 50 per cent (or more) of doctors use Wikipedia in their practice. Heilman says the website is an easy way for physicians to jog their memories. For medical students, Wikipedia is their second most used information source." Therefore, in the public interest Wiki has a duty on medical pages not to be star-struck, or to simplify the topic to pablum. Post updated. Medical Rights (talk) 04:35, 19 October 2014 (UTC)


Tuum Est Follows Own Motto: It Is Up To You[edit]

Tuum Est has no time for edit wars. Yesterday Tuum Est began its own list of Notable Cases with sub-titles such as: Doctors Stricken with GBS, Nurses Stricken with GBS, and Other Notable Cases. The sources are personal accounts published in peer-reviewed medical journals. Physicians, nurses, and other technical people are objective observers during the acute stage of GBS. Such people make incisive observations about symptoms, and about the journey through the health system. Physicians hold such personal accounts in esteem, saying they are highly instructive because the disease is rare. Tuum Est will include only Notable People whose disease has one or more features of medical interest. Roosevelt would be an example. Medical Rights (talk) 04:35, 19 October 2014 (UTC)

  • I would ask an admin to review Ms.Sil's entry here. I think it violates WP:MEDRS as I read it. Regards,  Aloha27 talk  13:18, 19 October 2014 (UTC)
Firstly, Medical Rights please reduce the volume of your comments. The immediate response to the above, for many editors, is WP:TLDR.
Secondly, I agree that lists of patients are very close indeed to WP:TRIVIA and in many cases they are removed from articles and placed in a separate article; this has happened on epilepsy and List of people with epilepsy. This article hasn't gone through that process yet, probably to a large extent because Guillain-Barré syndrome usually occurs acutely and doesn't have a chronic form (unless you count the resulting neurodisability).
Thirdly, we generally only add mention of people who are otherwise notable. I cannot find much evidence that Georgina Sil otherwise meets the general notability guideline. My personal view is that people should only be mentioned in these lists if there is evidence through secondary sources of a lasting impact on the general perception of a medical condition (and Michael J. Fox and Muhammad Ali would be some of the very few names on Parkinson's disease).
For now I would not encourage the addition of Georgina Sil to the list of prominent cases of GBS. JFW | T@lk 15:24, 19 October 2014 (UTC)
I concur with JFW. The answer to an overabundance of celebrity cases is not to add non-celebrity cases, too, and neither the primary nor the secondary sources for the Sil case give an indication of particular significance. If there were a peer-reviewed scholarly paper on notable cases of Guillain-Barré, or on patient-doctor relationships, discussing this case, it might be worth inclusion. But all we have are her own account and a local newspaper. Huon (talk) 15:46, 19 October 2014 (UTC)

Secondary Sources are Now Online[edit]

Ms. Sil's case of Guillain-Barre is supported by secondary sources. We produce these sources which Wiki instructs are important. Tuum Est scanned the original newspaper pages to form electronic JPG or PNG images. Our small scanner size meant we had to separately scan the top and bottom half of each newspaper page. Then we had to make a single document from the two halves. The methods we tried: (a) Concatenate the images in Apple Automator and output the result as a PDF. The result, however, looked very grainy for these old newspaper pages. (b) Then we tried an HTML webpage as a container; the code has a header plus two <img> tags to vertically align the two halves of the newspaper page on a white background. This worked well. You can obtain the individual images by clicking the image on the webpage and choosing "Save As". Medical Rights (talk) 12:29, 20 October 2014 (UTC)

Here are the links to the secondary sources, plus the original Medical Post publication:

http://tuum-est.com/autoimmune/guillain-barre/georgena-sil/star-phoenix/informed-patients-involved-in-medical-decisions-newsclip.html

http://tuum-est.com/autoimmune/guillain-barre/georgena-sil/star-phoenix/what-to-do-when-doctor-doesnt-know-best-newsclip.html

http://tuum-est.com/autoimmune/guillain-barre/georgena-sil/star-phoenix/what-to-do-when-doctor-doesnt-know-best-proquest-citation.pdf

http://tuum-est.com/autoimmune/guillain-barre/georgena-sil/medical-post/coming-to-grips-with-guillain-barre-syndrome-newsclip.html


Message to Aloha27: Place your comments either on the Guillain-Barre Talk Page, or on your own Talk Page. Tuum Est prefers an academic tone; thus we have begun compiling our own lists of Notable Cases, as stated quite definitley above. I suppose you could say Tuum Est has outgrown Wikipedia. Medical Rights (talk) 12:36, 20 October 2014 (UTC)

And all of these "secondary sources" (all authored by you) take us to your website. Am I missing something or misinterpreting :the "Primary Source" portion of the program? (I may be wrong, but not all the time.) I'll ask for help again. BTW... Thank You to JFW and Huon for their assistance. Regards,  Aloha27 talk  17:09, 20 October 2014 (UTC)
Well, if Tuum Est has outgrown Wikipedia, we're clearly done here. There's one secondary source in all this, a Star Phoenix article not written by Sil herself. The others are all the same article written by Sil herself and re-published in various places. That's no better amount of coverage than for the celebrities Medical Rights objected to. Huon (talk) 17:56, 20 October 2014 (UTC)
I thought we were done here as well when Medical Rights (talk) stated on their talk page that they no longer had interest in this article. An hour and six minutes later, the talk page here was edited. Thanks Huon and sorry to have had to ask again. Regards,  Aloha27 talk  18:37, 20 October 2014 (UTC)
I still see no evidence that Ms Sil (who I'm presuming is the same as Medical Rights) has independent notability. Not everyone is sufficiently famous to get mentioned on Wikipedia. JFW | T@lk 23:14, 20 October 2014 (UTC)