Talk:Morgellons Research Foundation

Fork

I forked this from Morgellons because I think the organizational problems of the Foundation could be used as a distraction from the disease itself. Please be aware that information about living people involved in the Foundation, especially negative information, is subject to the policy on Biographies of living persons. Thatcher131 16:35, 9 August 2007 (UTC)

excerpt from WP:BLP

Unsourced or poorly sourced contentious material — whether negative, positive, or just questionable — about living persons should be removed immediately and without discussion from Wikipedia articles,[2] talk pages, user pages, and project space.

An important rule of thumb when writing biographical material about living persons is "do no harm". Wikipedia is an encyclopedia, not a tabloid; it is not our job to be sensationalist, or to be the primary vehicle for the spread of titillating claims about people's lives. Biographies of living persons (BLP)s must be written conservatively, with regard for the subject's privacy. Pez1103 18:14, 9 August 2007 (UTC)

Is there something that is unsourced or poorly sourced? Herd of Swine 19:54, 9 August 2007 (UTC)

Indeed. If something contentious is "unsourced or poorly sourced" it should be removed immediately. If not - and especially if the subject attempts to manipulate and force Wikipedia to change material - then the material should remain. Such attempts to manipulate Wikipedia should not be accepted at all, but should be rebuffed firmly and with consequences so no more manipulation is attempted.

So if there is such contentious material, please provide the precise quotes here. -- Fyslee/talk 08:40, 10 August 2007 (UTC)

reads as a boost to MRF

Hi I don't think this was the editors intention, but to me the first half or 2/3 of this is a rave about the science and wonderful mission of the MRF. Then it mentions the internal schisms. That's not the editor's fault though, as his concern was to quickly fork it. But I do think at least one cite and sentence saying the different view people who are unbelievers in morguellons have about the MRF and their 'mission,' should be included. And the quote about their mission here is a bit long.

I'm hungover or I'd fix it myself lol, maybe later.:)Merkinsmum 12:32, 12 August 2007 (UTC)

as is the case

The article currently states:

The MRF acknowledges the diagnosis of Morgellons disease is not yet recognized by the medical community, and argues that, as in the case of many emerging diseases, patients' symptoms are often dismissed as psychological by health care practitioners.

and The MRF site (referenced) says:

"Because the disease is not yet recognized by the medical community, as in the case of most newly emerging diseases, patients' symptoms are often dismissed as psychological by health care practitioners."

The MRF version reads like "most newly emerging diseases are not recognized by the medical community, because Morgellons is not recognized, patients symptoms are often dismissed as psychological"

The Wiki version reads like: "With Morgellons, as in the case of many emerging disease, symptoms are often dismissed as psychological".

The problem is that it implies that many emerging disease are "dismissed as psycholgical" - either implying this is so (without citation) or implying the MRF believes this is true for MOST newly emerging disease. The whole sentence reads like a rationalization of the MRFs basic position, so I'd suggest we just use:

The MRF acknowledges the diagnosis of Morgellons disease is not yet recognized by the medical community, and argues that this leads to patients' symptoms being dismissed as psychological by health care practitioners.

?Herd of Swine 02:09, 15 November 2007 (UTC)

The MRF web page(3) states, "as in the case of most newly emerging diseases, patients' symptoms are often dismissed as psychological..." The MRF links Morgellons disease with emerging diseases both in this sentence "Because the disease is not yet recognized by the medical community, as in the case of most newly emerging diseases, patients' symptoms are often dismissed as psychological...", and in a sentence in the same paragraph just above, "...a newly emerging infectious disease, which we refer to as Morgellons disease." The present Wiki version is very similar, "The MRF acknowledges the diagnosis of Morgellons disease is not yet recognized by the medical community, and argues that, as in the case of many emerging diseases, patients' symptoms are often dismissed as psychological by health care practitioners."

Is it only "most" vs "many" that is being objected to? "Implying the MRF believes this is true for MOST newly emerging disease". Or "it implies that many emerging disease are "dismissed as psychological" - either implying this is so (without citation)." But the citation is there(4) [1]"It's hard to say yet which pattern the Morgellons phenomenon will follow. Will it be the next Lyme disease, validated by the medical community? Or will its victims reside in diagnostic purgatory forevermore? Medicine is full of phenomena that sounded like psychological ailments when first proposed but are now linked to invasive pathogens. Ulcers are caused by spirochetes, not stress. Syphilis is a bacterial infection that reaches the brain, not a kind of insanity. Tuberculosis is another infectious disease, not the psychosomatic illness it was first thought to be."

The intent of the statement by the MRF is clear, and the present Wiki version is not a rationalization of the MRF's position, it simply states the position of the MRF with citations (3)(4) to support that. "As in the case of many emerging diseases" should stay, or be changed to "as in the case of most newly emerging diseases", if it is felt the former is not close enough. The argument is an important part of the MRF statement and should not be omitted. Ward20 07:55, 15 November 2007 (UTC)

• I'm not sure we can allow this comment by MRF anyway - there are so few newly emerging diseases that no real generalisation can be made, I would say. Guy (Help!) 12:44, 15 November 2007 (UTC)

I think they were referring to diseases that WERE "newly emerging" in the past, like AIDS and LYME (Neither of which were dismissed as psychological, AFAIK). But since the MRF is not clear here, we need to either clarify it or remove it. Currently it's just a modified quote from their web site, with unclear meaning. Ward20, your comment regarding Ulcers, Syphilis and Tuberculosis are interesting, but not relevant to a page on the MRF. We want to describe what the MRF is about, not argue their case for them. Herd of Swine 16:31, 15 November 2007 (UTC)

Even there it does not hold up, because it was the medical community that identified the diseases. Can anyone think of a recent example of a disease identified by non-specialists, not accepted by the medical fraternity, but subsequently shown to be a real and distinct disease? Guy (Help!) 16:37, 15 November 2007 (UTC)

Those diseases (Ulcers, Syphilis and Tuberculosis) were actually described hundreds or thousands of years ago (Hippocrates is though to have described Syphilis in 400BC). What was new was that someone identified the cause. Morgellons has not even got to the first stage yet (establishing that there is a disease). There's also a vast difference between symptoms being imagined and symptoms being caused by stress, as was thought about ulcers. There's no real comparison there, but the MRF likes to make one. I've got no problem with reporting what the MRF believes, so long as it is clear that is what is being reported, and not some accepted fact. Herd of Swine 16:54, 15 November 2007 (UTC)

Here is the CDC page of issue Volume 13, Number 11–November 2007 of Emerging Infectious Diseases, quite a few. This link discusses how Polly Murray, her family, and others with the illness in Old Lyme CT had to fight to get Lyme accepted by the medical community in the 60s and 70s. Doctors tried to diagnose her with psychiatric illness and treat her with antidepressants. Polly Murray documents her story in the book “The Widening Circle". The site also discusses how it is still difficult for some people to be diagnosed after a tick bite and Lyme symptoms. Google searches will come up with many other illnesses that were first termed psychological. CFS, endometriosis, menstrual cramps, fibromyalgia, mitral valve prolapse, microvascular angina, vulvodynia, irritable bowel syndrome, interstitial cystitis are a few.

The MRF states what they state, and the word, "argues" put before "as in the case of many emerging diseases", is a word WP:AVOID suggests "is neutral and useful to paraphrase how someone has promoted a view or idea."

The comment on the talk page on "Medicine is full of phenomena that sounded like psychological ailments when first proposed but are now linked to invasive pathogens", and Ulcers, Syphilis and Tuberculosis was due to the assertion there were no cites to support, "implies that many emerging disease are "dismissed as psycholgical" - either implying this is so (without citation)". It is a cite showing the MRF's position is independently supported in an article about Morgellons.

The suggestion the MRF's position should be altered or removed because an editor believes their position is not clear or wrong is not NPOV. The WP suggested way of handling this is with assertions from RS disputing whatever part of, "The MRF acknowledges the diagnosis of Morgellons disease is not yet recognized by the medical community, and argues that, as in the case of many emerging diseases, patients' symptoms are often dismissed as psychological by health care practitioners" is objectionable. Ward20 22:46, 15 November 2007 (UTC)Ward20 23:24, 15 November 2007 (UTC)

• The "emerging diseases" on that list are mainly variants on known diseases, by the look of it, and all recognised by medical science. The only thing that's even vaguely similar is Lyme, and even that is not so very similar since the proposed diagnosis for "Morgellons" encompasses so many common disorders. Guy (Help!) 20:46, 16 November 2007 (UTC)

Paragraph with statements I have not seen in RS, and with no cites

The paragraph, "The principal challenge currently faced by MRF is that the medical establishment does not accept the existence of Morgellons, considering instead that sufferers, all of whom are necessarily self-diagnosed, exhibit a range of symptoms from other known conditions. The proposed diagnostic tests for Morgellons are broad and encompass symptoms of a number of conditions including menopause and delusional parasitosis." has no citations. AFAIK there are no RS that state or argue "The principal challenge currently faced by MRF," or "sufferers, all of whom are necessarily self-diagnosed," or there are "proposed diagnostic tests for Morgellons", or that a RS links the symptoms of menopause and Morgellons. If there are please cite. Thanks. Ward20 23:16, 15 November 2007 (UTC)

At least a few of the sources for the Morgellons article would appear to qualify as pertinent to those passages. If you'd prefer a quote from an RS to a paraphrase, perhaps the following would be considered acceptable as indicating the medical community's position, with specific reference to the MRF:

"Morgellons’s disease is largely regarded in the dermatology literature as a manifestation of delusions of parasitosis (and potentially a means of promoting patient rapport through destigmatization), despite the efforts of the Morgellons Research Foundation to promulgate an infectious rather than a neuropsychiatric etiology."

That would certainly appear to be evidence of the challenge the MRF faces, and perhaps all one needs to do is eliminate the phrase "The principal" and replace it with "A significant". I'll see about inserting those other refs. Dyanega 23:37, 15 November 2007 (UTC)

Ref (9) mentions menopause but not Morgellons as it is a DP article. Using that cite, the argument fails WP:NOR because the sentence is WP:SYN.

Instead of, "are broad and encompass symptoms of a number of conditions including menopause and delusional parasitosis."(9), I propose: "are broad and encompass symptoms appearing in various recognized conditions, including attention-deficit disorder, chronic fatigue syndrome, Lyme disease, obsessive-compulsive disorder, and delusional parasitosis." [2] Ward20 02:22, 16 November 2007 (UTC)Ward20 02:29, 16 November 2007 (UTC)

Both the cited reference and the MRF symptom list include "formication" - formication is a well-known symptom of menopause, and a well-known symptom of Morgellons. Thus the present phrasing is quite accurate: the symptom list for Morgellons DOES include at least one of the symptoms of menopause. Dyanega 04:08, 16 November 2007 (UTC)

Well, the MRF symptom list does not mention "formication". Moving, stinging or biting sensations are mentioned. Other articles do discuss sensations of insect-like crawling, stinging or biting. But the argument is still WP:SYN, "that precise analysis must have been published by a reliable source in relation to the topic". So a RS Morgellons article must specifically argue Morgellons and menopause share symptom(s) in common. Otherwise thousands, perhaps hundreds of thousands of other conditions would be just as valid to compare. Using the criteria of Morgellons sharing at least one well-known symptom with another condition would include such things as brain tumors and mosquito bites. Ward20 05:39, 16 November 2007 (UTC)

You are NOT being particularly cooperative or reasonable about this. The medical community says many (or most) cases of Morgellons = DP, one line of evidence being because it shares many of the symptoms - as far as the medical community is concerned, the causes of DP, such as menopause, *are* explicitly in relation to the topic (nonsense about brain tumors and mosquito bites aside)! This again sounds like an attempt to give undue weight to the MRF's arguments versus those of the medical community. Your argument for disallowing discussion of DP's symptoms and causes as relevant echoes the MRF's argument that Morgellons is not DP - but if you are willing to cite the MRF's opinions in that regard at face value (i.e., that Morgellons and DP are unrelated, and here's why they think that), then you must also be willing to cite the medical community's opinions in that regard at face value (i.e., that Morgellons and DP are related, and here's why THEY think that). The source IS reliable, authoritative, on the topic, and cited appropriately. Besides which, we can reduce this to its basic elements: if you state that "Dr. #1 says A and B share many symptoms" but Dr. #1 does not list the symptoms explicitly, then follow it up with "Dr. #2 says the symptoms of B include X, Y, and Z, all of which are indeed shared by A" this is NOT a novel synthesis or OR - it's supplying a citation that explicitly gives the list of symptoms that Dr #1 did NOT and therefore could not be cited for. Dr. #1 says there is a list but doesn't specify it, Dr. #2 gives that list. It's SIMPLE. And we've been over this nitpick about "sensations of insect-like crawling, stinging or biting" and your objections to referring to it as formication. That is the definition of formication! That's like arguing that if one person refers to a "massive, luminous stellar body around which our planet orbits" that we cannot assume that a different person referring to "the sun" is talking about the same thing. There is a boundary where worthwhile discussions of phrasing turn into passive-aggressive semantic debates intended solely to antagonize. Let's not go there, okay? Dyanega 08:06, 16 November 2007 (UTC)

• Yes. It is the medical term for that particular sensation, and the sources are valid for the content. It is entirely reasonable that the lead of an article makes plain the fact that, while MRF claims to support sufferers of a "newly emerging disease", there is no objective proof that this disease exists. This does not mean people are not suffering symptoms, just that the disorder proposed to explain those symptoms is not proven to exist. There is no serological or other objective diagnostic test, and no recognised definition. Guy (Help!) 20:51, 16 November 2007 (UTC)

POV

This looks biased toward the research foundation. Looks like it's pursuing people to help the foundation. _contribsSTYROFOAM☭1994^TALK 22:11, 21 February 2008 (UTC)

While I agree, that doesn't necessarily make it a POV problem (a POV issue would be editors selectively citing only favorable sources); the problem is that some reliable sources need to exist that criticize the MRF before WP can include criticisms of the MRF. Editors' opinions can't be cited. If you can find some reliable sources, then they might be included to help rectify the apparent bias. Realistically, I think the POV tag is not the best choice, but what it needs instead is a "more reliable sources needed" tag. Dyanega (talk) 00:59, 22 February 2008 (UTC)

The fundamental problem is that MRF has no scientific credibility and is mentioned only as an organisation advocating diagnosis of its supposed disease - there are no proper sources discussing it dispassionately. Guy (Help!) 09:08, 22 February 2008 (UTC)

Missing the Point?

I think that the controversial nature of this subject is causing us to lose sight of the purpose of this article. This entry should discuss the MRF, its history and mission. While it would be appropriate to discuss controversies within the organization, or misdeeds on the MRF's part (with proper citation), flagging and flogging this articles as has been done here seems to be based on disagreements about the existence of the phenomenon or its causes. These issues should be dealt with under the article relating to Morgellons itself.

In this context, this article needs only minor editing. I would disagree that the information about the rift between BOD members should be removed, but I do think that going into the financial specifics here is unwarranted, and a link to a source would suffice. I will edit later, if someone doesn't beat me to it. Ninja housewife (talk) 14:06, 6 August 2008 (UTC)

The controversies in the org were added last summer by a person that was or is at the org see [3]. But your right I don't know why the dollar amount Leitao gave in 2004 should be here. RetroS1mone talk 01:22, 8 August 2008 (UTC)

You should fix this....

I think this should be fixed: "but the medical community disagrees, noting that the described symptoms of Morgellons are associated with a psychotic disorder known as delusional parasitosis or Ekbom's syndrome."

Who is this medical community? This is practically Subjective... By medical community I'm sure then you by no means are referring to the CDC because the CDC's investigation is STILL ongoing and they are inconclusive.... No one besides a few doctors interviewed in the recorded Morgellons Media have suggested this is parasitosis.

Quote from the CDC:

"What is the current status of the investigation?

Study recruitment, collection of survey data and the clinical examinations have been completed. Testing of blood and other samples is underway and data analysis will follow. No study results are available at this time."..... Yeah the "medical community" sounds very solid and conclusive....

"Is this condition contagious?

The factors associated with acquiring this condition are unknown. At this time, there is insufficient information to determine whether or not this condition is contagious."

Please check my references (CDC) if you like. These were taken from the FAQ

http://www.cdc.gov/search.do?queryText=morgellons&action=search

http://www.cdc.gov/unexplaineddermopathy/ (aka morgellons)

Wiki Quote: "The Foundation considers Morgellons to be a newly emerging infectious disease, but the medical community disagrees, noting that the described symptoms of Morgellons are associated with a psychotic disorder known as delusional parasitosis or Ekbom's syndrome"

.... I suggest this needs to be fixed or at least add more information. Who is writing these articles and what exactly is going on in wikipedia? The CDC has no idea in hell what is going with this potential disease and they are studying things under microscopes as we speak while making limited public statements. Yet CDC isn't mentioned once here. You merely state in so many words: "The foundation attempts to make awareness for people who say they have a fibergrowing disease that they refer to as morgellons but everyone in the medical industry says no its in their heads".

Thats not acceptable. I can link you an article discussing the CDC begining its investigation in 2006 and the CDC information I provided for you is taken from today.... this is not a debate section but for information purposes.... I would have to ask, it takes more than 3 years for these people to say "Hey these are just hair and fabric parts!" ?? You're quoted "Medical Community" currently has no idea and no suggestions to explain this situation.

When I write about this phenomenon in suggestions boxes like this they tend to get deleted. So I will save this on a document and discuss it elsewhere if wiki's "community" is not interested. No I don't have this disease, and I don't know anyone that does before you suggest that I am infected with the "delusions". I just prefer to pay attention —Preceding unsigned comment added by 68.37.40.139 (talk) 06:06, 17 April 2009 (UTC)

It was discussed at Morgellons alot, pls look up the discussion. The article is from reliable sources. RetroS1mone talk 12:41, 17 April 2009 (UTC)

Hopefully this works

Minor edit:

The Foundation considers Morgellons to be a newly emerging infectious disease, but the majority medical community disagrees, noting that the described symptoms of Morgellons are most likely associated with a psychotic disorder known as delusional parasitosis or Ekbom's syndrome. Center for Disease Control (CDC) is currently conducting a study of self diagnosed Morgellons patients.

If wikipedia considers accurate information important than this minor change should be acceptable. This is not subjectivity, this is information (reference provided). If the added information is disliked for this page then deletion of the entire sentence "The Foundation considers Morgellons to be a newly emerging infectious disease, but the medical community disagrees, noting that the described symptoms of Morgellons are associated with a psychotic disorder known as delusional parasitosis or Ekbom's syndrome", should be (deletion) suggested if confronted with the possible argument of one feeling that validation or invalidation of this particular disease/syndrome does not belong in the Morgellons Research Foundation introduction of this page although this does not appear to be the case. If this is dismissed I fear subjectivity may in fact be a prime factor in wikipedia's Morgellons text. Under the scenario of an unwillingness to alter this particular document because it was possibly provided in its entirety from a reliable source, in the world of wikipedia that would be considered ridiculous.

http://www.cdc.gov/unexplaineddermopathy/ http://www.cdc.gov/search.do?queryText=morgellons&action=search —Preceding unsigned comment added by 68.37.40.139 (talk) 20:30, 18 April 2009 (UTC)