Talk:Morgellons/Archive 4

message: I think that this statement should come out because it implies that the MRF is the only one who does not believe that Morgellons is an existing condition: "... and sources other than the MRF consider Morgellons to be a variety of different known ailments."  Pez1103 18:55, 9 August 2007 (UTC)
replies: text: The problem with the Mayo quote is that it is misleading.  It gives the impression that the health professionals who "believe that Morgellons disease is a specific condition likely to be confirmed by future research" is equal in number to those who "believe that signs and symptoms of Morgellons disease are caused by existing illnesses or psychological disorders.". (The original quote does not include the language on "most dermatologists", and says "mental illness" not "psychological disorders).  While the quote is technically correct, by using "some" in place of "most" and "a few" it creates a false impression of symmetry which is not borne out by the medical literature. Herd of Swine 19:25, 9 August 2007 (UTC)
replies: text: As a matter of style, the information conveyed in the Mayo quote belongs in the introduction. If it can be paraphrased or rewritten to satisfy undue weight that would be acceptable, if the wording could be agreed on. The "reportable" quote seems to have come from an outcry following a local TV special (during sweeps month it appears, FWIW) and is fine in context, I think. Thatcher131 19:29, 9 August 2007 (UTC)
replies: text: Revised again.  Have a think.  I removed "This disease is controversial" because that just sets up an expectation of bias; the differing views are laid out.  Removed the direct quote but included it as a citation and modified the wording.  Worth noting that the Mayo site is geared toward sick people looking for help so it probably uses gentler language (i.e use of the word "some" three times possibly implying equality). Thatcher131 19:37, 9 August 2007 (UTC)
replies: text:  But the disease IS controversial, how else could you put it?  I agree the divisions of opinion are important, and should be reported.  The Mayo quote accurately says what they are, but fails in a description of the ratio of the division.  You can't really do a neat three-way split, but you could accurately do a two-way split into: "some health professionals believe that Morgellons disease is a specific condition likely to be confirmed by future research, while most health professionals either believe that signs and symptoms of Morgellons disease are caused by another condition, often mental illness, or don't acknowledge Morgellons disease or are reserving judgment until more is known about the condition."  That preserves the text, but with that minor change it incorporates the findings of the medical literature and the investigative media reports. Herd of Swine 19:49, 9 August 2007 (UTC)

text: Saying "This is a controversy" is poor style, you show that disagreement exists by the facts you cite.  Anytime you see a biography or an article about a corporation with a big bold Crtiticism section you know that POV editors have been at work; such things should be integrated into the body and let readers judge for themselves.   I have rarely seen real controversy in the medical profession, maybe over the issue of hormone replacement therapy and a few others.  Doctors would not regard Morgellons as controversial, merely a new name for an old disease, with some misdiagnosis thrown in.  (Now, I could image that if someone publishes a peer-reviewed article about a possible cause, and readers of the journal hit the e-mail to complain about shoddy reviews and falsified data, then you would have a scientific controvery.)  Here the controversy comes from the advocacy of the MRF of people feeling sidelined, and from editors here trying to sway things one way or another, and I think it is better to present both sides of the argument without labeling it. Thatcher131 20:01, 9 August 2007 (UTC)
thread_title:  history 

message: I'm puzzled - just noticed "Morgellons disease" was not listed in intro as an alternative name. While I think it is POV to use the word "disease" within the body of the article (when not quoting), there is certainly nothing wrong with having the name listed in the intro - after all, "Morgellons disease" DOES redirect here. Dyanega 21:25, 9 August 2007 (UTC)
replies: text: I concur with this.  Also, the term "Morgellons disease" appears in many of the sources.  --Parsifal Hello 23:56, 9 August 2007 (UTC)
thread_title:  use of "Morgellons disease" 

message: Thatcher - I like the changes to these sections.  I think it is much more NPOV. Thanks!Pez1103 04:16, 10 August 2007 (UTC)
replies: text: Thanks. Thatcher131 04:19, 10 August 2007 (UTC)
thread_title:  Lead and history 

message: I would like to renew my proposal to replace the intro and history sections of the article with the sandbox version.  I have tried to be responsive to issues and concerns that were brought up.  I have tried to edit for a better style (it read like a collection of newspaper articles), and more focused content (on the role of the MRF in promoting the disease).  Please respond on the article talk page talk:Morgellons. Thanks. Thatcher131 04:22, 10 August 2007 (UTC)
thread_title:  Proposal to edit main article 

message: I'm not sure the symptons and causes section is quite done but I'm ready for comments.  I have found everyone's comments very useful in pointing out things I missed and alternative wordings and points of view.  You can go ahead and make changes, too. Thatcher131 04:39, 10 August 2007 (UTC)
replies: text: I have a couple of comments about this section.  I'm not sure why the neurological manifestations of the disease were not included -- they were noted by both the MRF and Dr. Casey.  The CDC does not mention them in their website, but if you read their RFQ, they are testing for neurological manifestations of the disease.  In the sentence : Disturbing sensations of insects crawling, stinging or biting on or under the skin - I would remove the words "of insects" -- this in not on the MRF or CDC site.  I think that itching is important too, since it is a big part of the disease.  Pez1103 13:32, 10 August 2007 (UTC)

text: there's a similar quote fro Savely and Leitao: "sensations of insects crawling on, stinging and biting their skin." ] Herd of Swine 14:23, 10 August 2007 (UTC)
replies: text:  Regardless, it is not in the MRF case defintion; it is not in the CDC definition.  The MRF website makes no mention of insects at all.  (I'm sure that you will respond with 80,001 cites that mention insects.)  The point is that this is a listing of the symptoms of the disease.  I think it should be consistent with the MRF case definition or the CDC defintion from the website or the RFQ.  I think it's more NPOV not to mention insects because there is a whole debate regarding what is causing the sensations.  But it is a minor point.  Whatever Thatcher decides, I'm fine with.  Pez1103 14:53, 10 August 2007 (UTC)
replies: text: See formication.  It is the sensation of, or as if, insects or worms were crawling on the skin.  Can be caused by diabetic neuropathy or herpes zoster for example.  Taking out "insects" leaves us with sensations of crawling what?  Beanie babies?  We should, however, make clear that this is a sensation that does not imply an actual parasitism. Thatcher131 14:58, 10 August 2007 (UTC)
replies: text:  Note I am mostly responsible for the formication article.  Previously it redirected to delusional parasitosis, which was plainly wrong, given the large number of physical conditions (like menopause), of which it is a common symptom.  The issue of "insects" is often debated within the Morgellons community, where they suggest that they should avoid the mention of insects, as it prejudices doctors against them.  This is very unfortunate, as it means they cannot accurately describe their symptoms.  Crawling what? - exactly.  This also spills over to the use of the word "formication", which is the correct word here, but has been edited out of the article as "Psychobabble", see diff:  Herd of Swine 15:50, 10 August 2007 (UTC)
replies: text: I, of course, have put it back in the sandbox version.  What I hope Morgellons advocates understand is that formication, as a symptom, can be caused by many things, including (hypothetically) a peripheral neuropathy associated with an unknown bacterial or fungal pathogen. Thatcher131 17:08, 10 August 2007 (UTC)
thread_title:  Comments on Symptoms and Causes 

message: I noticed Thatcher131 changed some text to "[the MRF] states that their database currently includes over 10,000 registered".  The MRF have actually stopped taking registration, and that's being handled by the OSU, who are not sharing the information.  That's just based on information at the MRF and OSU web sites though. Herd of Swine 21:15, 11 August 2007 (UTC)
replies: text: It is inaccurate to say that OSU is not sharing information from the database with the MRF.  The MRF has all the information from the database.  The MRF has decided to modify the registration page, so it is just down temporarily.  Pez1103 12:17, 12 August 2007 (UTC)
replies: text:  But the OSU web page  specifically states: "Information submitted to OSU will be kept in confidence and not shared with other organizations.", so they are legally obligated to not share it with the MRF.  The MRF has not had their own registration page for over a year. Herd of Swine 16:32, 12 August 2007 (UTC)
replies: text:  The MRF already has information regarding their 10636 registrants. I'm not sure why the OSU website says that.  Pez1103 19:46, 12 August 2007 (UTC)
replies: text: If OSU is developing a patient registry, that is under a protocol and conditions approved by their Institutional Review Board.  It is unlikely that the IRB would permit sharing patient information with an advocacy group whose adherence to HIPPA and OSU's privacy standards could not be guaranteed.  MRF could inform their list of the opportunity to register with OSU but can not be told how many did, or who they are, and OSU can not share the names of new registrants with MRF.  Similarly the CDC is trying to build a patient registry and it will be separate from both, unless patients voluntarily join all three on their own.  It seems fair to me to say that the MRF "claims to have" or "states they have" over 10,000 registered families since that is their claim at the moment.  No one said it was an accurate count of the number of people with the disease, as we say multiple times that no agreed-upon diagnostic criteria exists.  When and if the CDC or OSU make a formal announcement of how many patients they have enrolled, we can add it to the MRF note or replace the MRF note. Thatcher131
*How about removing the word "database" and saying "[the MRF] states that they have been contacted by over 10,000 families." Thatcher131 02:19, 15 August 2007 (UTC)
thread_title:  The MRF "database" 

message: Hi in the introduction I added to most physicians believes about morguellons "and believe any fibers found are from textiles such as clothing"  I think this is important as otherwise mention of the fibers at the start makes it sound as if everyone believes they are real/unique, plus we need to include how unbelievers can not believe in morguellons despite the appearance of fibers.  I think this will do.  
--Although I have doubts about how the fibers are handled in the intro in as much as, shouldn't it be 'perception' of fibers or something, as 'appearance of fibers coming out of/under the skin' or whatever the exact wording, suggests they will appear like that to every observer (when they don't, others just see a bit of cotton on top of a scab, if anything.)Merkinsmum 12:24, 13 August 2007 (UTC)
replies: text: That kind of illustrates a problem with phrasing.  The CDC says, essentially, "persons report threads on or beneath the skin".  What they are investigating is why people are reporting fibers, and not specifically why fibers are coming out the of the skin.  The distinction is that everyone agrees that people are reporting fibers, but there is significant disagreement as to if the fibers all come from inside the body or outside.  Unfortunately this is a too subtle distinction for the casual reader on this topic. Herd of Swine 14:43, 13 August 2007 (UTC)
replies: text: How's about 'sufferers report seeing fibers' in the lead?  The listing 'appearance of fibers' sort of implies they are real.  Even if the casual reader doesn't notice the implication immediately, it is still a bit misleading.  How about 'report what appear to them to be fibers' or something?Merkinsmum 16:17, 13 August 2007 (UTC)
replies: text:  I think they generally are fibers.  You see photos of fibers all the time, so 'report seeing fibers' is better.  What about 'sufferers report finding fibers on or under the skin'? - that tallies with most descriptions and is fairly neutral. Herd of Swine 17:46, 13 August 2007 (UTC)
replies: text: Yes that's good.:)Merkinsmum 18:59, 13 August 2007 (UTC)
thread_title: 'unbelievers' beliefs about the fibers

message: I would like to propose moving the Symptoms and Proposed Causes sections into the live article.  Please comment on Talk:Morgellons. Thanks. Thatcher131 02:39, 15 August 2007 (UTC)
thread_title:  Symptoms and Causes section ready to go live?