Talk:Morgellons/Archive4

The following discussion is archived. Please do not modify it. Subsequent comments should be made in a new section.

history

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)

I think that this paragraph stating its not a reportable disease should come out. The information is already contained in the Dr Stone quote below it. As you know, "reportable diseases" are those that must be reported to the health department by doctors. If the disease isn't recognized, it makes sense that it wouldn't be reportable. Pez1103 18:55, 9 August 2007 (UTC)

I think that the quote from the Mayo Clinic website is important and should be included in this section. "Morgellons disease is not a widely recognized medical diagnosis, and medical professionals' opinions about Morgellons disease are divided. Some health professionals believe that Morgellons disease is a specific condition likely to be confirmed by future research. Some health professionals, including most dermatologists, believe that signs and symptoms of Morgellons disease are caused by existing illnesses or psychological disorders. Other health professionals don't acknowledge Morgellons disease or are reserving judgment until more is known about the condition."

I think it's important because the reality is that most people have never heard of morgellons disease, nor have they made up their minds one way or another. (If you decide to include it, I have to make sure that I got that quote right -- it's been played around with so many times.)

Pez1103 18:55, 9 August 2007 (UTC)

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)

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)

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)

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)

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)

MRF in lead

The removal of the statement that the MRF is an advocacy organization is unacceptable, as far as I'm concerned. I would have opposed moving the MRF out of the article, if it hadn't been suggested (for the first time) and performed within a 24 hour period. — Arthur Rubin | (talk) 19:46, 9 August 2007 (UTC)

How about, The Morgellons Research Foundation, a non-profit advocacy organization, believes that it is a new infectious disease...

My sandbox version still notes how the MRF was founded, the problem is that focusing on the problems of the MRF is a back-door way of deprecating the disease itself. Thatcher131 19:52, 9 August 2007 (UTC)

Is it not more like the history of the way the disease was discovered? Compare with Lyme_disease#History. If anything I'd say it needs more information - how did Leitao go from finding fibers in her son's lip (which she still finds, BTW, so it's still relevant), to the current situation? Herd of Swine 20:01, 9 August 2007 (UTC)

Well let's split two issues. The stuff about the financial conflilct within the MRF is what I really object to. The role of the MRF in publicizing Morgellons is an appropriate topic for this article. For now, the history of lyme disease section is about as long as the history of Morgellons section, even though the lyme disease advocates have been a lot noisier for a lot longer period of time. I would say that if you want to add info about the role of the MRF in promoting Morgellons (press conferences, did they make a video, how did they get on dateline), for example this

In May 2006, the MRF was featured in a number of local TV news segments coordinated by the MRF's director of communications, who began volunteering at the foundation when he became aware of the suffering caused by the disease.[2] This was followed in June and July by segments on CNN, ABC's Good Morning America, and NBC's The Today Show. In August 2006 a large segment of the ABC show Medical Mysteries was devoted to the subject of Morgellons. This resulted in a significant rise in the public awareness of the term Morgellons during 2006.

then I would like to see some of the other quotes go to keep the topic focused. I think it would be reasonable to write a history section that follows the thread (no pun intended) from Mary L., to the web site, to the foundation, to increased awareness, to the CDC investigation. But it needs to be focused and not get into sidetracks. Thatcher131 20:09, 9 August 2007 (UTC)

• By the way, I don't mind if people make reasonable changes to the intro and history sections to see how they are received by others. I just don't want this to turn into another free-for-all like the original page apparently was. Since this is my space, I can delete this and take my time and energy elsewhere if forced to. Thatcher131 19:50, 9 August 2007 (UTC)

• OK, I made another change, that DoP is one of the possible diagnoses, rather than the predominant diagosis. (Some "Morgellons" sufferers have real parasites; or should I say that some sufferers from known parasites think they have Morgellons.) If you think this is inappropriate, please revert. — Arthur Rubin | (talk) 20:06, 9 August 2007 (UTC)

you're right, and that will be tricky to handle in the disease section. Thatcher131 20:10, 9 August 2007 (UTC)

Actually, I don't believe this is appropriate; I have yet to see a single report in the literature where a Morgellons patient was found to have any real parasites. Without a citation to such evidence, I urge treating the quotes from the Atlas and the AJP article as indicative of mainstream opinion; DoP is the predominant diagnosis, and even Randy Wymore has stated this. What is crucial is pointing out that it is not the ONLY diagnosis. But the alternatives do not include - at this point - real parasites; they are stated as (e.g.) other common skin disorders, which should not be taken to imply the presence of parasites. Dyanega 20:36, 9 August 2007 (UTC)

I think it's fine to mention other diagnoses. But DoP is generally the one mentioned most in the literature. Regarding parasites - scabies are parasites, so it's certainly a diagnosis they might get - and anecdotal evidence suggests it's a common one. DoP actually is frequently triggered by a real infestation, so they might get scabies, get diagnosed and treated, but be convinced they still have it, when they don't. Herd of Swine 20:51, 9 August 2007 (UTC)

I'm not disagreeing that this COULD be happening - and I'm personally certain it must be - my point is that there are no reliable sources which state this; just, as you said, anecdotal evidence, and this article should not be about anecdotal evidence. Please note that I said "at this point", and that's exactly WHY I used that phrase, because it seems likely that eventually someone who claims to have Morgellons but proves to have scabies will be documented. Until then, we should avoid making such predictions or discussing "likelihoods", either implicitly or explicitly, within the article itself. I also just noticed the comment regarding "the lyme disease advocates have been a lot noisier for a lot longer period of time" - notable in that the Lyme advocates and Morgellons advocates are actually partially overlapping categories. Two of the foremost advocates of chronic lyme disease are Raphael Stricker and Ginger Savely, the co-authors of the paper originally describing Morgellons, and board members of the MRF. They are thus advocates for TWO controversial medical conditions, and involved in non-profit advocacy groups for both (MRF and ILADS; Stricker is the president of ILADS). Dyanega 21:11, 9 August 2007 (UTC)

Non-profit advocacy of Lyme and Morgellons, but for-profit treatment of Lyme and Morgellons. [1] Most of the other medical board members are fans of infectious late-stage lyme as well. One (Bransfield) even treats mental illnesses like social phobias and bipolar disorders with antibiotics [2].

Sorry, a bit OT/OR I know, but perhaps useful perspective. Herd of Swine 21:29, 9 August 2007 (UTC)

"majority of health professionals"

"A majority of health professionals, including most dermatologists, regard Morgellons as manifestations of other known medical conditions, including delusional parasitosis" I don't agree that "the majority of health professionals" believe this. The cites listed only include opinions from dermatologists. The CDC doesn't believe that it is; nor do the health departments that contacted the CDC; nor do the health care practitioners who contacted the CDC urging them to do the study (per the RFQ); nor do the doctors who contacted the MRF asking for treatment advice. The California Health department specifically stated that they don't believe Morgellons symptoms match any known diseases. I'm OK with saying that most derms believe it, but I just don't think that the begining of the sentence is true. Pez1103 21:55, 9 August 2007 (UTC)

Yes it is, here are six references: [3], "Most doctors do not recognize Morgellons as a disease", [4] "Most doctors don't even believe it exists because the symptoms don’t fit anything listed in medical textbooks" (which explains the California Health Department problem you mentioned), [5] "most doctors don't acknowledge it as a real disease", [6],"most doctors believe the painful illness, called Morgellons Disease, is psychological", [7] "Most doctors interviewed dismiss alleged evidence that medical science has overlooked what patients are calling “Morgellons’ disease” and insist that the patients are delusional", [8] "most doctors believe Morgellons is not in the skin, but in the head." Herd of Swine 22:18, 9 August 2007 (UTC)

Pez, this is a perfect example of what most of the rest of us are objecting to about your editing, and why it is POV. You say "The CDC doesn't believe that it is" - that is YOUR OPINION. The CDC's actual written statement makes no such claim, and the CDC's own official spokesman has said that your theory is a "remote possibility"! You say "nor do the health departments that contacted the CDC" - that is YOUR OPINION. There is no documentation of what those health departments BELIEVE, only what they SAY, and they say no such thing. You say "nor do the health care practitioners who contacted the CDC urging them to do the study" - and yet again, that is your personal and unsupportable OPINION. Can you provide a supporting citation from a single health care practitioner who is not affiliated with the MRF, and who was not contacted by you or other MRF volunteers and asked to contact the CDC? You say "nor do the doctors who contacted the MRF asking for treatment advice" - and that, too, is your opinion, without any evidence to back it up. As for the CDHS statement, I have already explained to you that your interpretation of their statement is completely different from the way they intended it (which I admit I cannot prove without resorting to private communications or appeals to common sense), and from the way other people interpret it; their saying the symptoms don't match any known disease refers to ALL of the symptoms on the MRF's website taken together - and it should not be taken to imply (as you have taken it) that any one of those symptoms or a subset thereof is not perfectly consistent with any one of a number of known conditions. If they had instead phrased it "There is no known disease which exhibits all of these symptoms" would you have interpreted it the same way? So, ultimately, what you have done here is to insist on an alteration to the article using argumentation which is absolutely in violation of NPOV policy, as well as "reliable sources" policy. You have received advice from several administrators and editors regarding this sort of thing now; you need to learn why your present approach to editing is NOT acceptable, and this one's a good example. Editing has nothing to do with what you think, or even what is "true", and it most certainly does not involve putting words in people's mouths by claiming what you think THEY think. Dyanega 23:12, 9 August 2007 (UTC)

Relax. Certainly, the fact that the CDC is undertaking an investigation does not presuppose the outcome. For the time being, it is the majority opinion of the medical profession that Morgellons is not a new disease entity, but a combination of other things (formication, DP, etc). Thatcher131 23:27, 9 August 2007 (UTC)

I am so tired of being personally attacked. If the CDC was convinced that it was a known disease, I doubt that they would conduct an investigation, I doubt that they would call it an emerging public health concern. I'm not saying that they believe that is a new disease, just that they aren't convinced that it is not. Dan Rutz did not say that he did not believe that it was a new disease, he said that he didn't think it was an infectious disease. It could be an autoimmune disease or a genetic disease. I believe that you are misinterpreting was the California State Health Department said in their letter. How could you possible know their intent? Why would health departments and health care practitioners contact the CDC and ask them to investigate Morgellons disease if they were convinced that it was an existing disease? It doesn't make sense. I didn't realize wiki rules prevented me from expressing my opninion on a talk page and the basis for my opinion without being repeatedly attacked and accused of violating rules. Are you capable of just saying that you disagree and why, without attacking me personally? Pez1103 23:57, 9 August 2007 (UTC)

(1) Telling an editor "Your edits are unacceptable according to WP policy, please learn how to edit within policy" or "Your arguments commonly include fallacies and fabrications, please stop arguing that way" is not a personal attack. (2) "Public health" covers more than just physical diseases. (3) The MRF's official and explicit opinion, and that of its affiliates (e.g., Randy Wymore) is that Morgellons is an infectious disease; that is the theory that Dan Rutz is saying the CDC considers a remote possibility. No one but you, personally, just now, has ever suggested that it's "an autoimmune disease or a genetic disease". That's another fabrication. Please stop arguing that way. (4) Given that there is evidently more than one way to interpret the CDHS letter, NPOV dictates that it simply be quoted, and not paraphrased. (5) When you ask me "How could you possible know their intent?" why am I not allowed to ask you the exact same question without being accused of a personal attack? (6) It has nothing to do with whether I agree or disagree with YOU, it has to do with whether I feel your edits are appropriate or not. If your opinions are the basis for your edits, then you ARE violating NPOV. Dyanega 00:24, 10 August 2007 (UTC)

Pez, normally a CDC investigation would convey more weight, but that would be because the CDC had based their investigation on actual evidence. You quote Dan Rutz selectivly, when explaining why there was an investigation, he said: "More typically we get a very credible indication of an emerging problem from an official source. This was driven by lay people and some clinicians who are frustrated and not sure what to do with these folks." [9] You ask not to be attacked. It is not you being attacked, but the quality of your edits. However, it is difficult to get around the fact that you personally are a major player in all of this. You personally are responsible in some part, for the CDC being forced into this investigation, which lacks any credible indication of an emerging problem. This creates a conflict of interest, and clearly affects your POV. You have continually been active on the MRF's unofficial message board, Lymebusters, supplying phone numbers, encouraging people to repeatedly call their senators and local health officials, supplying form letters to send to congress, phoning the the media, suppling contact information to the media, you even encourage people to write on Wikipedia:

(Oct 27, 2006) My congressman wrote me back today and made some very anti-Morgellon comments (he basically called me delusional). Then I realized that he was quoting Wikipedia - which is one of the first things that shows up when a person googles Morgellons. Then I discovered that anyone can make entries into Wikipedia and the person that made all the biased, anti-Morg comments on Wikipedia is our very own Morgellonswatch dude. Lots of people search for information on Morgellons and find Wikipedia and get a page full of biased slander that basically says we are all nutz. I changed it, but he keeps changing it back. If you notice a lot of anti-morg stuff on Wikipedia -- go ahead and change it. It's just not right. [10]

I've been blocked from making changes since I violated Wikipedia rules somehow. Anyway, if you are a computer person and want to look into this .... please see if you can figure out if you can change his article for good -- to make it less biased -- or add stuff about preliminary research findings, or something.

There are hundreds of posts [11] where you exhort people to write and call the CDC, write and call their Senators and Congressmen to have them presssure the CDC, writing the the media, complaining to publications that publish unfavorable articles. Such as:

If you are a doctor or nurse or you know a doctor or nurse that supports our cause, please ask him or her to write these two journals in response to the four recently published articles. They need to let the journals know that Morgellons is NOT DOP and that they articles should be amended or retracted. The information that they need is listed below. Thanks [12]

You called NY's US Senator's office for TWO MONTHS, until they finally contacted the CDC.

After two months of phone calls, I finally got NY's US senators to write the CDC and ask them to expedite the research. I encourage anyone else to also please write their US Senators and ask the same. If you don't know who your senators are, check it out on the MRF website. The best bet is to FAX their Washington offices and follow up with a phone call (or several). Here is a sample letter you can use. Note that I do not identify myself as someone with Morgellons. [13]

For the past month, all day, every day, I've been phoning senators and congressmen's offices beggging them to intervene on our behalf with the CDC to urge them to expedite their research. They are pretty much sick of hearing from me and want to hear from their own constituents. Please write your senators and congressmen. [14]

I keep calling senators offices every day. The more of us that do, the better. ... If we all call, they will be forced to write letters. [15]

Do you know how we got that letter from Clinton? I wrote and then I followed with a phone call to the legislative aide several times a week. She got so sick of all my calls, she screamed at me one day, but heck, she wrote the letter. And I still contact her to this day and she follows up with the CDC. [16]

I did not wish to bring up this material. But there are serious issues involved here. You continually make the case that the CDC's investigation is highly indicative of Morgellons being an infectious disease, when in reality the CDC is investigating because of YOU, pez1103. You got Hillary Clinton to write that letter [17], you organized letter writing and phone campaigns. You personally played a huge role in forcing the CDC to investigate. Herd of Swine 00:47, 10 August 2007 (UTC)

Thank you, Herd. I'm flattered that you think that I had a huge role in the CDC investigation. The reality is that I was responsible for one letter. They received over 40 letters from Congress, many before I got involved. The reality is that I never mentioned letters from Congress in my comments earlier -- I specifically said that the CDC was being contacted by health departments and health care practitioners. I did this deliberately because I know that congress responds to the public -- they aren't physicians. I volunteer for the MRF. The MRF does do advocacy. The fact that I encourage people to contact Congress is hardly earth shattering. The fact that I don't believe that Morgellons is DOP is hardly earth shattering either. I don't say that the fact that the CDC is investigating is highly indicative that they think that it is an infectious disease -- I say that it is indicative that they do not believe it is an existing condition. Pez1103 01:19, 10 August 2007 (UTC)

Wait a minute, please: CDC issue aside for a moment, you are not denying the quote above where you personally encouraged people to sign in to Wikipedia specifically to edit the article? Dyanega 01:25, 10 August 2007 (UTC)

Please note that the sort of outside advocacy described here is specifically frowned upon. Thatcher131 01:43, 10 August 2007 (UTC)

If you notice, the 10/06 comment I made about wiki was the first day I ever realized that wiki existed and I was unaware of any of the rules surrounding wiki, in particular the 3 revert rule, which is why I got blocked for a day. I did ask people to help me make the article less biased, but no one was willing to help. People told me that they had tried editing the article, but the experience was so unpleasant, that they were personally attacked, that their was so much hostility directed towards them, that it was so difficult to make the article less biased, that they eventually gave up, or they were blocked and gave up. Maybe I'll end up being blocked too. Maybe one day the people who oversee wiki will look at the history of this article and see a pattern, a pattern with the article and a pattern with the people who try to edit it and give up. Editing wiki should be a positive collaborate effort, but everyone who I have spoken to who has tried to contribute to this article who believed that Morgellons could possibly be a new disease has not found this to be the case. I've said this so many times already, but as someone else noted, he has never seen such unjustified, unprovoked hostility and bias directed at anyone in wiki as he has seen directed towards people who try to edit the Morgellons article to make it less biased. (Actually, it's pretty presumptious for me to assume that I was responsible for the Clinton letter. The LA did get mad at me once, but in general, she was very nice.) Pez1103 02:32, 10 August 2007 (UTC)

The whole point of the policy Don't bite the newbies is that nearly everyone can figure out how to work within the system, given a chance. Thatcher131 03:13, 10 August 2007 (UTC)

The CDC did assign the Morgellons disease investigation to one of their infectious disease centers. I believe that this was done after his interview, but I am not positive. I think it is their vector borne, zoonotic division of infectious disease. Pez1103 04:04, 10 August 2007 (UTC)

use of "Morgellons disease"

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)

I concur with this. Also, the term "Morgellons disease" appears in many of the sources. --Parsifal _Hello 23:56, 9 August 2007 (UTC)

Lead and history

Thatcher - I like the changes to these sections. I think it is much more NPOV. Thanks!Pez1103 04:16, 10 August 2007 (UTC)

Thanks. Thatcher131 04:19, 10 August 2007 (UTC)

The above discussion is preserved as an archive. Please do not modify it. Subsequent comments should be made in a new section.

The following discussion is archived. Please do not modify it. Subsequent comments should be made in a new section.

Comments on Symptoms and Causes

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)

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)

there's a similar quote fro Savely and Leitao: "sensations of insects crawling on, stinging and biting their skin." [24]] Herd of Swine 14:23, 10 August 2007 (UTC)

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)

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)

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: [25] Herd of Swine 15:50, 10 August 2007 (UTC)

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)

personal attacks

It is rather discouraging to keep reading personal attacks made by other members about me. The comment above by Herd that I engaged in a 20 minute edit war with Fyslee and don't make comments in the discussion page is completely untrue. I added something from a letter to the editor. Fyslee took it out. I asked about the other letters. Fyslee took those out and THANKED me for mentioning it. No war. I realize that Fyslee has far more editing experience than I do and respected his input. Why am I continously a topic of discussion? Pez1103 11:14, 10 August 2007 (UTC)

Perhaps "war" was a a bit strong, but there was rapid tit-for-tat mutual deletions. Herd of Swine 13:57, 10 August 2007 (UTC)

I don't think that this is an accurate characterization either. I find your and Dayenga (sp?) constant commentary regarding me to be rather disturbing. Pez1103 14:45, 10 August 2007 (UTC)

I have no wish to engage in personal attacks. I have commented on your personal involvement in the issues (for example, you claiming personal responsibility for State Senators like Clinton contacting the CDC), only where it directly impacts claims you are making (such as: the CDC must hold certain beliefs, otherwise it would not be investigating). This simply raises COI and POV issues which cannot be ignored. I appreciate you try to avoid COI in your edits, but you do seem to favor only material that supports the position of your organization, the MRF. Herd of Swine 16:07, 10 August 2007 (UTC)

I think that the fact that both of us may have COI has been discussed on the COI page. Pez1103 20:58, 10 August 2007 (UTC)

The following is an excerpt from the Morgellon's discussion page. Parsifal was kind enough to intervene when people started comparing people who believe in Morgellons with people who believe in UFO's and people were making disparaging comments about me personally. "Editors continuing to work on this article need to follow WP:CIVIL and WP:NPA as usual, and avoid making comments about an editor who is not able to respond in their own defense. There is no need to discuss editors as people; focus on the content of the article. Also, your comparison of this situation to UFOs is throwing me off. I showed up here after noticing the editing conflicts reported on multiple noticeboards, and as an impartial third party have been reviewing the sources and trying to make sense of the situation. All references used in any article should be based on reliable sources, so if an MRF reference is used, it's reasonable to review it and make sure it is based on a reliable source as well. If it's not, there could be grounds to remove it. But there are at least some PhDs and MDs quoted on that website and it's not automatic that they should be discounted just because of the website that quotes them. The research needs to be done to vet the source. I'm sure you can make your point more effectively if you leave out the UFO comparisons. I'm not saying that the MRF is correct - I am not making a judgment about that at all. But your UFO analogy could be somewhat insulting to the suffering people who have the Morgellons Syndrome (per CDC terminology). Whether the condition is physical or psychological, the pain and fear are real either way. I respectfully request that you find a different way to express your concerns about the article so that you don't make their suffering worse by appearing to make fun of them, even though that was not your intention. A good place to start would be to re-edit the header to this section to remove the word UFO that shows up large. I know you will edit the article according to NPOV and Verifiability, and a dose of compassion would be a welcome addition. --Parsifal Hello Pez1103 11:22, 10 August 2007 (UTC)

It was never my intention that Morgellons sufferers should be compared to believers in UFOs. My use of the analogy was only to illustrate that we are dealing with an "Unidentified" condition, in the same sense as UFOs are by definition "unidentified." If someone misunderstood what was clearly written, take it up with them. -- Fyslee/talk 21:38, 10 August 2007 (UTC)

I thought we had already resolved the UFO issue a while ago. Everyone agreed that no offense was intended. Why is it being discussed again?

Let's all just focus on the article and not on the editors. --Parsifal _Hello 21:54, 10 August 2007 (UTC)

Precisely. Thanks. The heading could have been better worded too. -- Fyslee/talk 22:02, 10 August 2007 (UTC)

Tulsa Police

I would like to mention something and I do not want to be attacked personally because I do not have proof. I want to ask what I would need for proof. Last week I spoke to the director of the forensics division of the NYS Police Department. I told him about the findings of the Tulsa police. I thought that the findings were odd too. He told me that the findings were were consistent with something that is produced by the body. He said that if the fibers were textile they would have burned or melted. Skin tissue for example does not burn or melt, it blackens. If I got an email from him, assuming that he would bother to do this for me, would this suffice? The cellulose findings were very preliminary and the cite specifically says that more testing would be needed to confirm the findings. The reality is that no one really knows what the fibers are made of because it has never been conclusively proven in a lab. I think that the tulsa police findings are very important because they show that the fibers are not textile. Pez1103 11:34, 10 August 2007 (UTC)

There is definitely something hinky about the Psych Today article's description of the Tulsa investigation. For one thing, gas chromatography does not work by measuring the boiling point of samples, and since 1400 deg F is nearly the temperature at which human bodies are cremated the report that the fibers only blackened slightly is not credible. It is true that synthetic fibers (nylon, rayon, etc) will melt or take flame at lower temperature than organic fibers (cotton, wool, etc.), and I found a comment via google that animal fibers are more fire-resistant than plant fibers. So the problem with the Psych Today description may be more a problem of communication and reporting of what was done rather than the analysis itself. I would be fine with adding to the "Investigating the fibers" section a comment that Wymore gave a sample to the TPD lab which was unable to identify it as a known textile fiber. (The extended description previously used is, I think, hinky, and not a good style choice anyway.) Thatcher131 12:09, 10 August 2007 (UTC)

That's reasonable. Thank you. Pez1103 13:17, 10 August 2007 (UTC)

That also lends the report too much credence; as you yourself noted earlier, this report is in direct contradiction to the MRF's two most prominent hypotheses, that the fibers are bacterial cellulose, or fungal hyphae, AS IS the report by Haverty. The Tulsa Police's database of 8,000 organic compounds contains both cellulose and chitin (two of the most common organic compounds on the planet; and neither can withstand 1400F), and - most significantly, the fiber descriptions of Haverty (who admits to being a Morgellons sufferer herself) are of multiple types of fibers, of 5 different colors (red, blue, black, brown, and clear), which is also entirely inconsistent with bacteria or fungi, each of which - if they produce fibers at all - produce fibers of only one color. Both cellulose and chitin autofluoresce, as well, and only a subset of the fibers Haverty analyzed showed autofluorescence (and of a different color than the autofluorescence characteristic of cellulose and chitin). I earlier stated, back on the Morgellons talk page, that if all of these conflicting fiber reports are to be included, they should be contrasted with one another, to highlight the incompatible conclusions and observations. I do not believe that this constitutes OR. Dyanega 16:27, 10 August 2007 (UTC)

I don't believe that Haverty has the disease. I thought that Herd said a relative of hers did. Why can't we just state what the preliminary findings are and NOT draw conclusions -- such as this is incompatible, therefore it must be thrown out, or this discredits all of the other preliminary findings. If Morgellons sufferers really have fibers growing from their skin, it makes sense that it would be unlike anything ever seen before. I doubt it would be pure cellulose, if it does contain cellulose, because it is being produced by a human, not a plant. The preliminary findings indicate that it may contain cellulose. Maybe it also contains organic matter that would make it resistant to burning. Who knows? Wouldn't NPOV suggest that we just list the preliminary findings as is and let future research determine which were correct? Do we have any basis to say that the Tulsa police findings are wrong? They are fiber experts and test fibers for a living. I think it's relevant because doctors are dismissing the fibers as common household fibers and the Tulsa police did not find them to be so -- they couldn't identify them at all. Pez1103 17:35, 10 August 2007 (UTC)

I have previously requested Pez to produce some evidence for the claims she makes above by using the words "growing" and "produced". I don't recall getting any response. Where is the evidence that these fibers are "growing" or "produced" by the body? Why not that they are appearing under and exiting through the skin? That is not the same as "growing" or being "produced" by the body. So far the descriptions (especially the high temperature) makes me think of asbestos fibers, which can be colored and are very resistant to high temperatures, and can also be inhaled or ingested and then wander through the body and later emerge unscathed. -- Fyslee/talk 21:51, 10 August 2007 (UTC)

Haverty says her adult daughter has it [26]. Her findings are rather odd as she lists a huge range of sizes, shapes, colors, fluorescence, opacity, and other variable, and then concludes: "The fibers ... are so similar to each other that the causative agent may be epidemiologically the same." It's very weak, but it's really the only "published" study of the fibers, so maybe deserves some reference?

The Tulsa PD was unable to identify some fibers. This was reported in the press. I agree with Pez that we should not draw conclusions from this. Them not identifying fibers tells us nothing - perhaps there was some mistake in the process, of the fibers were some contaminant they were unfamiliar with, like blue asbestos, or fiberglass? There is no way of knowing, and we should not speculate in the article. Regarding the fiber the did not melt at 1400F, this seems very anecdotal, and not in keeping with other finding. Perhaps something along the lines of "The MRF had some fibers tested by the Tulsa Police forensics lab, but they were unable to determine the composition of the fibers"?

Herd of Swine 18:18, 10 August 2007 (UTC)

I think that is about right. I am somewhat sympathetic to the idea of specifically pointing out the contradictions (unidentifiable/cellulose/fungal) but on the other hand, the contradictions are there for anyone to read, and we are talking about hypotheses and preliminary data. Thatcher131 18:29, 10 August 2007 (UTC)

I think that what Thatcher originally stated was more accurate: "TPD lab which was unable to identify it as a known textile fiber." I was reading the quote again: "This isn't lint. This is not a commercial fiber. It's not." The lab's director, Mark Boese, says the fibers are "consistent with something that the body may be producing." He adds, "These fibers cannot be manmade and do not come from a plant. This could be a byproduct of a biological organism." Herds quote makes it sound like they couldn't reach any conclusions. This isn't accurate. They did reach conclusions -- that it wasn't manmade or from a plant. That is very significant. Pez1103 18:34, 10 August 2007 (UTC)

Apologies - I had forgotten that Haverty had been referring to her daughter - the point remains that she is not an unbiased observer. The point also remains that if the Police could not ID the fibers, then they were neither plant, bacterial, nor fungal (cellulose and chitin would be among the very first compounds tested for - they wouldn't have to be "pure" to be detectable), and that point SHOULD be included if the Police analysis is being treated as RS. That does remind me, however: the statement "from Agrobacterium, a potentially pathogenic species which is known to produce cellulose fibers at infection sites within host tissues." is misleading; other than Citovsky's unpublished study, the only "host tissues" Agrobacterium is known to infect is PLANT tissue, and it is only been demonstrated as "potentially pathogenic" in THAT context. Citovsky himself states in the report "it would be the first example of a plant-infecting bacterium playing a role in human disease". WP policy says, "Exceptional claims require exceptional sources". If the claim is to be included, I feel it is essential that readers be informed in some way that it is exceptional. The phrase "potentially pathogenic" should be omitted, and the end of the sentence rewritten to "infection sites within plant tissues; Agrobacterium has never been found infecting humans by other researchers." Dyanega 18:43, 10 August 2007 (UTC)

Hmm. On a side note, the Citovsky abstract was presented at a lyme disease society meeting and published in J. Invest. Med. That's not the same as a peer-reviewed research article of course but it gives us something to cite besides Morgellons.org. Thatcher131 18:49, 10 August 2007 (UTC)

Plus, Citovsky may be the senior author--he appears to be an Agrobacterium researcher--but the first two authors are Stricker and Savely. Thatcher131 19:00, 10 August 2007 (UTC)

On a sider note, Agrobacterium has been known for some time to infect humans, but it apparently infects opportunistically, meaning it infects people with weakened immune symptoms [27]. Interesting stuff, but at best simply indicates that those people tested had weakened immune systems. There is no indication as to the health of the people from which the tested samples were taken. As Citovsky says, Agrobacterium has never played a causative role. I feel the MRF is playing up this study somewhat. Herd of Swine 19:02, 10 August 2007 (UTC)

The lyme disease society it was present at was ILADS, of which Stricker is President. Herd of Swine 19:09, 10 August 2007 (UTC)

I wasn't aware of these outside studies, and it's interesting that Citovsky would not have mentioned them. Certainly if there is independent verification of Agrobacterium in humans, that changes things, altough I could still quibble over the wording regarding causation. The article herd cites indicates that humans get infections of this bacterium when they have open wounds and - rather obviously - Morgellons sufferers have many chronic lesions. This raises a considerable and reasonable doubt regarding the cause/effect association, and the wording should probably reflect this. Can I offer the following suggested text:

Dr. Citovsky, MRF board member from the State University of New York at Stony Brook reported in January, 2007 that Morgellons skin fibers appear to contain cellulose. He tested five skin samples of Morgellons patients, and found evidence of DNA from Agrobacterium, a plant-infecting organism which is known to produce cellulose fibers at infection sites within plant host tissues.^[1] Agrobacterium infections have been recorded previously as occurring opportunistically in humans with weakened immune systems, and entering the body through open wounds.[28]

Would that be acceptable? Dyanega 20:30, 10 August 2007 (UTC)

Pretty good. I have a better ref for opportunistic infections, though. Thatcher131 01:31, 15 August 2007 (UTC)

Y Done

• Regarding the Tulsa PD's characterization of the fibers, I think the only thing we can do is directly quote someone from the crime lab, as stating "they would have seen this if it was that is opinion and/or original research. The Psych Today article quotes Wymore as saying what TPD told him but ABC Primetime article quotes two people from the TPD. I think we have to use the direct words of named people, for which they are already on record and accountable for. Thatcher131 01:42, 15 August 2007 (UTC)

Y Done

'Investigation of the fibers' makes these items sound more scientifically-confirmed than they are

Most of the material in the 'Investigation of the fibers' subsection comes from the MRF site, and except possibly for one abstract, contains nothing that has been scientifically published. I would prefer that this material given a general text summary saying that MRF-associated people have informally reported certain observations, rather than us presenting this in very scientific-looking style, with footnotes that just run down to essentially self-published material. Remember these are fiber investigations, but no micrographs are offered, there is no naming system for the samples, the samples have not been offered for study by other investigators, etc., so it is super-super preliminary, and here we are talking as though it were real data. EdJohnston 14:39, 11 August 2007 (UTC)

The "fiber research" is highly variable. For example, here's a "paper" presented at a "conference", that says:

Morgellons - A disease in which individuals have the growth of fibers from their skin that burn at 1,700 degrees F and do not melt. (20) A private study to determine the chemical and biological composition of these fibers has shown that the fibers' outer casing is made up of high density polyethylene fiber (HDPE). The fiber material is used commonly in the manufacture of fiber optics. [29]

And a similarly unusual one [30]. (not worth quoting)

And another problem with the fiber studies (as with many fields, unfortunately), is that there is tendency not to publish results that do not agree with your theory. Thus the fibers have actually been analyzed MANY times by various labs, and nothing unusual was found. Rhonda Casey said:

"If you send a fiber sample to lab, the report will often come back saying textile contaminant," [31].

Or this

Testing of the filaments brought no results, according to Dr. Uppal: "I've seen [it]; sent it to the lab. They can't identify it. They'll say 'They're nothing.'" [32]

Individuals have tested their own fibers, see [33].

Wymore ignores negatives:

You see, we do indeed find environmental contaminants in samples from Morgellons sufferers. Definitely cotton, likely from bandages and cellulose fibers, probably from tissue. But, we are not interested in the contaminants that are everywhere. We take the time to sort through the known fibers to examine in more detail the ones that look unusual. [34] (email to me)

As for cellulose - probably more that half of the fibers you find in household dust are cellulose, since that's what paper and cotton (and linen, ramie, rayon, tencel and lyocell) are made of.

At BEST you could say "preliminary tests of fibers are inconclusive", but that's being generous.

Herd of Swine 20:50, 11 August 2007 (UTC)

I think that we have to apply a consistent standard. When I objected to the treatment section because there is no known treatment for Morgellons, just doctors who assume that it is DOP and try to treat it accordingly, and doctors who test morgellons patients for lyme and if they test positive for lyme, treat the lyme and see a remission in morgellons symptoms -- no one agreed that it should be excluded. The three letters to the editor supporting anti psychotics are hardly peer reviewed, clinical studies. If you read them, they are discussing a very limited number of patients, some who don't appear to have morgellons at all, and they are based on a lot of assumptions and what I consider "bad medicine" -- ie, tell your patient that you believe that they have morgellons when you really don't and give them anti psychotics. (I think at BEST you can say no one knows how to treat morgellons, but I was overruled.) However, the fiber studies are being held to a much higher standard. Why? Why not just list the preliminary findings and leave it at that. Say that they are preliminary findings. (BTW, many morgellons patients see lyme doctors that are unaffiliated with the MRF.) The Tulsa police tested the fibers and found that they were none of the things that are mentioned above. They are forensic scientists unaffiliated with the MRF. Why can't we accept their findings? Would it be worth it to reach out to them to get clarification? Pez1103 00:29, 12 August 2007 (UTC)

Actually, you could say that the three dermatologists that suggest treating Morgellons with anti-psychotics aren't treating Morgellons at all. By their own admission, they are treating DOP and just calling it Morgellons. There is no way of knowing whether patients who respond to anti psychotics ever had morgellons at all, or if they just had DOP, since there is no test for Morgellons.

Morgellons is a list of symptoms, like CFS. The cause might be DoP, or it might be Lyme, or something else. But, just like with CFS, there are both mainstream and fringe treatments for this list of symptoms. Some assume one cause, some another, but they are both treatments that are applied to the same list of symptoms.

Regarding any "double standard" - all disease articles have a "treatment" section. None have a "fiber analysis" section. That would be like having a "tooth root analysis" section in CFS (since tooth root infection is one proposed cause).

What we have here is a list of symptoms, generally it is treated on an individual basis as common skin conditions, often in conjunction with DOP. A very small number of doctors treat is as some specific unidentified infection that is related to fibers in the skin, and apply speculative treatments. The majority treatments have a place in the article. The minority - less so, but they are part of the Morgellons story, and should be included for perspective.

Herd of Swine 03:21, 12 August 2007 (UTC)

DOP treatment does not address systemic symptoms, such as loss of vision. DOP cannot cause Morgellons, as it has been defined by the MRF. It cannot cause the systemic symptoms or the lab abnormalities. Pez1103 13:10, 12 August 2007 (UTC)

I don't think anyone would dispute that, but lots of other conditions could cause that list of symptoms and lab results. That is why the intro says "[most doctors] regard Morgellons as manifestations of other known medical conditions, including delusional parasitosis". Note is says "conditions". It's quite possible to be ill with more than one things at once. If 9.5% of the population has a major depressive disorder, 5% have eczema, and 1.36% have fibromyalgia, then about 20,000 people will have all three. Herd of Swine 15:45, 12 August 2007 (UTC)

The quote from Dr Casey is incomplete. Dr Casey says that the reports state that the fibers are textile based on only a visual examination and that she does not agree. Pez1103 13:13, 12 August 2007 (UTC)

The full quote is:

"If you send a fiber sample to lab, the report will often come back saying textile contaminant," says Casey. But she watched one laboratorian label a fiber by simply looking under a microscope. "I said, 'How can you tell?' And he said, 'I'm looking at it.' And that's how it's done in every lab across the country." That's why she asked forensic fiber experts to take a look. [35]

Casey's anecdote about watching one particular laboratorian, and then extrapolating it to every lab in the US is perhaps indicative of her scientific technique, but is nonetheless wrong. The important information here is in the first part of the quote. Fiber analysis is a complex process of which visual analysis is only a part. For example, several morgellons fibers have been tested at McCrone Associates [36] who use Polarized Light Microscopy, Fourier Transform Infrared Spectroscopy, and Thermomicroscopy, the results came back as normal fibers, wool, cotton, etc. Casey does not trust those results, so instead used the Tulsa PD, who were unable to identify the fiber.

So, we have, on the one hand, MULTIPLE results from fiber analysis labs that say "textile contaminant", and ONE from a police forensics lab that says "unidentified". Herd of Swine 15:38, 12 August 2007 (UTC)

Who sent fibers to McCrone? Were they samples taken by a doctor? Did McCrone publish their findings? Was this just one individual who took fibers and sent them in? 00:29, 13 August 2007 (UTC)

It's from this Lymebusters thread [37] three people discuss expensive lab tests that indicated normal fibers. Two used McCrone. This is obviously not suitable material for inclusion, and I'm not suggesting we do. It's just regarding how notable the Tulsa material is, and how much should be in there. It's way too much now. All we have from Casey is that she teased SOME fibers from SOME patients, and then the Tulsa PD was unable to identify them. She also said she'd sent fibers off to a lab, and they WERE able to identify them, but she does not believe they had done a good job, because once she saw a different guy ID some fibers by looking at them.

The Tulsa tests are widely but lightly reported, and contradictory. One the one hand we have the lab director (Boese) saying the fibers are "consistent with something that the body may be producing", and then we hear they won't melt at 1400F. Those two facts are NOT consistent. There were really NO results from the Tulsa tests, there is no detail as to what tests were done (Polarized Light Microscopy?). Just a failure to identify, and speculation. I share EdJohnston's concern.

Herd of Swine 01:11, 13 August 2007 (UTC)

I thought that you were saying that Dr Casey sent the fibers to McCrone, but she did not. Based on what you said, a few people collected their own fibers and sent them to McCrone. That still means the vast majority of fibers that are dismissed as textile contanaments are done so in a pathology lab based on a visual examination, just as Dr Casey said. A visual examination of Morgellons fibers is pretty meaningless. Red, blue, black and clear fibers are going to naturally dismissed as textile since the idea of colored fibers being produced by the body is pretty unheard of -- except to those patients and doctors who have seen it. I think that we should ask for clarification from Tulsa. They were very specific about the tests they performed. Teh forensic expert I spoke to didn't think that any of it was questionable... just very interesting and consistent with something the body would produce. 02:11, 13 August 2007 (UTC)

I read the lymebuster post -- it said that McCrone used polarized light microscopy to test the sample that they received. It didn't mention that they used the other tests at all. Just for clarification, Lymebusters is a support board for people who suffer from Morgellons disease. It sounds like the tests performed by Tulsa were much more specific to determine composition. Pez1103 03:11, 13 August 2007 (UTC)

What tests did they use at Tulsa? The tried chromatography, but could not get the sample to melt. What else? What did he mean by "consistent with something the body would produce?" What does that even mean? Hair? Herd of Swine 04:57, 13 August 2007 (UTC)

Obviously if they were hair, the scientists at Tulsa would have identified them. Pez1103 11:51, 13 August 2007 (UTC)

• The fibers are the second most common symptom, according to Savely, Leitao and Stricker (2006) and will be the thing that many readers will be thinking of when they look for this article, so I think it is fair to give the fibers a subsection in the "other theories" section. Perhaps it could be given a less authoritative-sounding title. The issue of diagnosticians ignoring textile contaminants is an important source of potential bias but it is one that we can not discuss because no one has reported it. Actually, I have thought of a rather nifty experiment to determine whether or not the fibers are produced internally, if the MRF wants to give me a grant... Thatcher131 02:06, 15 August 2007 (UTC)

• • I'm also removing the Haverty findings as she is (1) not a recognized fiber expert, (2) is only published on the MRF web site and does not even meet the minimal standard of being a published abstract. Thatcher131 02:17, 15 August 2007 (UTC)

The MRF "database"

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)

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)

But the OSU web page [38] 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)

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)

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)

CDC Investigation

"We're not ready to concede there's a new disease, but the volume of concern has stepped up because a lot of people are writing or calling their congressmen about it because they're frustrated that there's been no organized way to deal with their suffering."

I think that this quote from Rutz trivializes the disease and the investigation. The RFQ which was issued subsequent to this statement says that they have received an increased number of inquiries from the public, health care providers, public health officials, Congress, and the media regarding this condition. Pez1103 12:17, 12 August 2007 (UTC)

I don't think the formal statement of the RFQ invalidates Rutz's earlier statement. The RFQ does not state "there's a new disease...." — Arthur Rubin | (talk) 12:43, 12 August 2007 (UTC)

I agree, but it does say that the CDC was not just contacted by the public and congressmen. It specifically mentions public health officials adn health care providers - Rutz's quote does not Pez1103 12:50, 12 August 2007 (UTC)

But they don't state WHY the public health officials and health care providers are contacting them, nor how many. Perhaps the public health officials had been lobbied by the same people who lobbied congress? Just look at the MRF government advocacy page, which explicitly requests this lobbying [39]. More recently Rutz said that there is NOT "a very credible indication of an emerging problem from an official source", but the RFQ quote makes it sound like there is such an indication, so it's somewhat misleading in isolation. Rutz's comments more clearly explain why there is an investigation. Herd of Swine 16:48, 12 August 2007 (UTC)

they don't state WHY the public health officials and health care providers are contacting them, nor how many -- precisely! They don't state it, so we don't report it. We report what the CDC is doing and a summary of what they said. They did not say they are investigating because they've been lobbied, that's just a guess, so unless you have a quote from someone at the CDC saying it, we have to omit it. There's plenty of clarity in their quotes that they are not assuming it's a new disease, they're just checking it out, so there is no undue weight. --Parsifal _Hello 19:32, 12 August 2007 (UTC)

The problem is the normally a CDC investigation is based on "a very credible indication of an emerging problem from an official source" and this is not - according the the CDC [40]

The debate has grown so heated that, recently, the federal Centers for Disease Control and Prevention got involved, and not because they wanted to. They were inundated with calls from irate people who say they have this disorder and want answers. "More typically we get a very credible indication of an emerging problem from an official source," says Dan Rutz, spokesperson for the CDC. "This was driven by lay people and some clinicians who are frustrated and not sure what to do with these folks."

See also NPR: "A vigorous online lobbying campaign has made it a CDC priority." [41]. And from the show linked there:

CDC officials say the agency has been hearing about this problems for years now, but clearly, people going on the Internet has made things happen faster. Leitao’s Web site called on patients to write their members of Congress. Members of Congress wrote the CDC and the CDC started an investigation. CDC officials say the Internet is a double-edged sword, offering some good information, but a lot that’s simply not credible. (NPR, December 27, 2006, Day to Day, report by Patty Neighmond)

Herd of Swine 20:20, 12 August 2007 (UTC)

This is giving undue weight to unclear reports that have been discussed here extensively. The CDC has not made a statement that it is basing its investigation on lobbying. It has said it's doing it based on increased reports of problems. Even the spokesperson speaking informally did not say it was driven by the MRF, he said it was driven by lay people plus some clinicians. And the NPR, while usually could be considered reliable, in this story made an unsupported synthesis of the information. Just because the MRF told their members to write congress does not have enough weight to prove that's what caused the representatives to contact the CDC or that the CDC responded to those calls. We don't know that people weren't writing to their representatives anyway. Connecting the CDCs investigation directly to the MRF is original research.

Besides, the article is about Morgellons syndrome, not about the MRF and their lobbying efforts, or whether or not the CDC is being manipulated. That was the whole point of separating that section out of the article, to keep this focused on the condition, not the MRF.

In keeping with your personal bias, that you strongly believe (and have written many times) this is not a new disease but a combination of DP and/or other known skin conditions, you want to reduce the impact that the CDC is investigating the condition, by trying to show that the CDC is investigating only because they've been forced to against their better judgment. That's original research at this time, and it's not relevant to this article anyway.

Whatever the reasons that brought the CDC to do the investigation, they are doing it, and the investigation is relevant. When it's completed, we will either know that it is not a separate disease, or that it is, or that they were not able to figure it out and more research is needed. --Parsifal _Hello 21:59, 12 August 2007 (UTC)

I'm not saying the article should be changed, quite the opposite. I'm speaking in defense of the quote from Time Magazine that's in there now, as part of Thatcher's rewrite, and one that Pez is objecting to. I'm just supplying additional background that supports the use of that quote. I'm fine with the way the CDC section reads now. Herd of Swine 22:58, 12 August 2007 (UTC)

Thanks for clarifying that you are not suggesting adding the part about MRF lobbying. --Parsifal _Hello 23:43, 12 August 2007 (UTC)

Yes, I think the current Rutz quote is fairly neutral, and allows the reader to draw their own conclusions. Herd of Swine 23:52, 12 August 2007 (UTC)

• There are two Rutz quotes, the one that Pez objects to about "Congressmen" and the one about they don't know about the fibers but are "keeping an open mind." The fact that the CDC investigation was prompted by public complaint and not a medical review of the situation is an important part of the history of this condtion. (I doubt the CDC waited for phone calls from congressmen before investigating the first outbreak of Legionellosis in 1976.) I'd say keep both quote or lose them both. For now it's pretty balanced, I think. Thatcher131 02:26, 15 August 2007 (UTC)

'unbelievers' beliefs about the fibers

Hi in the introduction I added to most physicians believes about morguellons "and believe any fibers found are from textiles such as clothing"[42] 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)

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)

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)

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)

Yes that's good.:)Merkinsmum 18:59, 13 August 2007 (UTC)

Y Done

The above discussion is preserved as an archive. Please do not modify it. Subsequent comments should be made in a new section.