Jump to content

Talk:Morgellons: Difference between revisions

Page contents not supported in other languages.
From Wikipedia, the free encyclopedia
Browse history interactively
← Previous editNext edit →
Content deleted Content added
VisualWikitext
Line 395: Line 395:


I think it would be acceptable as an article according to wikipedia guidelines. And then you could link to it in the lede and that would, I think, also defuse a lot of the hositility of some of the posts in this talk page too. It shows that wikipedia is covering the topic, is not ignoring it, which I think is the main thing of concern by many of the posters here. And by making it clear that it is leading edge research and that this is an advocacy group - bypasses all the issues I think that you feel make it hard to cover it here. [[User:Robertinventor|Robert Walker]] ([[User talk:Robertinventor|talk]]) 12:51, 3 April 2015 (UTC)
I think it would be acceptable as an article according to wikipedia guidelines. And then you could link to it in the lede and that would, I think, also defuse a lot of the hositility of some of the posts in this talk page too. It shows that wikipedia is covering the topic, is not ignoring it, which I think is the main thing of concern by many of the posters here. And by making it clear that it is leading edge research and that this is an advocacy group - bypasses all the issues I think that you feel make it hard to cover it here. [[User:Robertinventor|Robert Walker]] ([[User talk:Robertinventor|talk]]) 12:51, 3 April 2015 (UTC)

:"Leading edge" is loaded and the MDF position has generally been ''rejected'' (rather than not yet accepted) by the medical profession. [[Special:Contributions/109.144.222.250|109.144.222.250]] ([[User talk:109.144.222.250|talk]]) 12:57, 3 April 2015 (UTC)

Revision as of 12:57, 3 April 2015

Archive
Archives

Middelveen (2015) BMC Dermatology paper

The whole artcle has to now be rewritten to include new published research on Feb. 12, 2015. http://www.biomedcentral.com/1471-5945/15/1 WildAppleLeaf (talk) 06:18, 7 March 2015 (UTC)[reply]

No it doesn't. Read WP:MEDRS: "All Wikipedia articles should be based on reliable, published secondary sources. Primary sources should generally not be used for health related content, because the primary biomedical literature is exploratory and not reliable - any given primary source may be contradicted by another, and the Wikipedia community relies on the guidance of expert reviews, and statements of major medical and scientific bodies, to provide guidance on any given issue." The study you cite is a primary source. AndyTheGrump (talk) 06:50, 7 March 2015 (UTC)[reply]

Corrections to existing page and additional information

This page on Morgellons is extremely biased, in my opinion, for the following reasons. I am not an experienced Wiki editor so someone who is will need to make the editing changes noted below.

1) This page should include reference to and comment on the following published and peer reviewed studies and books by qualified medical authors and scientists instead of all the references to magazines (Popular Mechanics) and newspaper stories (other valid but omitted studies are noted below):

Direct Link: Article Stable URL: http://www.jstor.org/stable/25010485 Collembola (Springtails) (Arthropoda: Hexapoda: Entognatha) Found in Scrapings from Individuals Diagnosed with Delusory Parasitosis Deborah Z. Altschuler, Michael Crutcher, Beth A. Cervantes, Cristina Terinte and Louis N. Sorkin Journal of the New York Entomological Society Vol. 112, No. 1 (Spring, 2004), pp. 87-95 Published by: New York Entomological Society

J. New York Entomol. Soc. 112(1):87–95, 2004 COLLEMBOLA (SPRINGTAILS) (ARTHROPODA: HEXAPODA: ENTOGNATHA) FOUND IN SCRAPINGS FROM INDIVIDUALS DIAGNOSED WITH DELUSORY PARASITOSIS DEBORAH Z. ALTSCHULER,1 MICHAEL CRUTCHER, MD, MPH, FACPM,2 NECULAI DULCEANU, DVM, PHD (DECEASED),3 BETH A. CERVANTES,1 CRISTINA TERINTE, MD, PHD4 AND LOUIS N. SORKIN, BCE5 1National Pediculosis Association, 50 Kearney Road, Needham, Massachusetts 02494; 2Commissioner of Health, Oklahoma State Department of Health, 1000 NE 10th Street, Oklahoma City, Oklahoma 73117; 3Department of Parasitology, University of Veterinary Medicine, Iasi, Romania; 4Department of Pathology, University of Medicine and Pharmacy, Iasi, Romania; and 5Division of Invertebrate Zoology, American Museum of Natural History, Central Park West at 79th Street, New York, New York 10024-5192

Abstract.—Twenty individuals diagnosed with delusory parasitosis participated in a single site clinical study under the auspices of the National Pediculosis Association (NPA) and the Oklahoma State Department of Health. The objective of this study was to determine if there were any common factors in skin scrapings collected from this population. These individuals, whose symptoms were originally attributed to lice or scabies, were part of a larger group reporting symptoms of stinging/biting and/or crawling to the NPA. Multiple skin scrapings from each person were microscopically examined. Any and all fields of view that appeared incongruous to normal human skin were digitally photographed. When the photographic images were initially evaluated, no common factor was identified. However, more extensive scrutiny using imaging software revealed evidence of Collembola in 18 of the 20 participants.

My comment: This study is far more objective than the CDC/Kaiser Study in that none of the authors had a stakeholder interest or previously stated opinion, most of the authors had advanced training specific to parasites, between 15-30 skin scrapings were taken for each subject, it contained controls, it described all processes to avoid contamination of the samples, two samples of Collembolla were found in each participant before a positive finding was considered, and all results were photographed and reviewed by an entomologist. There was no drug testing because all other causes of DP would have to be ruled out prior to considering DP as a diagnosis. Kaiser had already diagnosed thousands of its members with DP prior to the CDC Morgellons study, and would have been open to medical malpractice law suits had anything other than their previous diagnosis been confirmed. The CDC is widely quoted as saying Morgellons is an Internet meme, however the clinical phase of this study study was conducted in 2000, which was before Mary Leito had created the name Morgellons and the Morgellons Research Foundation was on the Internet in 2002. Thus both Kaiser and the CDC were acting as judge in a study where they were also the defendants of a DP diagnosis, where in this 2004 DP study none the authors had any reputation or credibility to uphold.

The official position of the CDC is not that Morgellons is an Internet meme but that it is an Unexplained Dermopathy- even after the Kaiser Study.

2) Further, the CDC released the following comment between the time the Kaiser study was completed and the completion of the peer review process: http://www.cdc.gov/unexplaineddermopathy/docs/external_peer_review.pd

Question #5 asks: 5. What findings can be communicated to the public, medical community, and stakeholder community?

Who is the stakeholder community referred to in #5? How could there be a stakeholder if Morgellons is considered to be delusional? Why are there some findings that can't be communicated to the public and medical community? How can the Kaiser CDC study on Morgellons be considered science when an unnamed stakeholder had editorial control over what study findings could be communicated?

3) The Kaiser CDC study on Morgellons included marijuana as a recreational drug, when in fact, California recognizes medical marijuana use for many of the medical conditions the subjects reported, and many of the subjects were probably using it under a doctor's direction. It also used hair analysis for the drug testing instead of urine analysis, when this is not an accepted drug testing method for employment and other uses. Because hair grows slowly and is easily contaminated from things put on the hair or things in the air, urine drug analysis is far more reliable. It also reports a high rate of opiates in the hair analysis, while also reporting that a significant number of the participants were taking prescription pain killers, which can contain opiates, but failed to adjust the recreational drug use percentages to exclude contamination by prescription pain killers for valid medical conditions. It talks about the high rate of prescription drug use in the study participants, but since there are no controls, we never learn that by the CDC's own estimate, http://www.cdc.gov/nchs/data/hus/hus13.pdf#fig20 in 2013, that 50% (more in the over 65 age group) of Americans take prescription drugs on a daily basis (the highest rate of prescription drug use in the world). The entire focus of the Kaiser study is emphasizing drug use and creating a case for somatic disorders. The criteria of diagnosis for somatic disorders is entirely subjective and includes things such as opposition to authority figures (like questioning doctors)- see Wikipedia Somatic Disorders. We get drug tests, IQ tests, personality tests, and psychological evaluations but no real identification on what was found in the skin. For DP to even be considered everything else needs to be ruled out first. Terms used in the study such as "probably" and "most likely" cotton and the 40+ proteins that were not named do not rule out all other possibilities. The spectra of cotton and the fiber sample were not an exact match at all, which was acknowledged in the study conclusion that further study was needed on this unexplained dermopathy. This wasn't reported on the Wikipedia page or the mainstream press when the study was released.

4) The Kaiser CDC Morgellons study notes that no clustering was apparent, however the map on the page of the Morgellons Research Foundation, http://www.morgellons.org/maps.htm, clearly shows that CA was very hard-hit and that the majority of California cases were located in the greater San Francisco Bay and Los Angeles Metropolitan areas. The CDC itself stated that Kaiser of Northern California was selected because of the high percentage of cases reported in that area. The Kaiser map may not be indicative of a neighborhood hand-to-hand infectious cluster by place of residence, but could be indicative of an aerial spraying operation, such as the CA Dept. of Forestry & Agriculture Light Brown Gypsy Moth operation, which sprayed 5 counties around the SF Bay area in CA with an unapproved pesticide, Check Mate, that contained a micro-encapsulated insect pheromone during the time frame of the Kaiser study (http://www.cal-ehi.org/Cal-ehi.org/LBAM_files/CareyHarderLBAMTWGArticleAE2013.pdf) The EPA had no restrictions on the use of nanotech in pesticides until 2012 (http://www.epa.gov/pesticides/regulating/nanotechnology.html), and even then it only required notice and testing when novel nano structures (nanotubes, quantum dots, fullerenes) were to be included in the pesticide. It basically grandfathered in all nano scale ingredients currently approved in pesticides at the bulk scale. So everything in Roundup can now be nanoscale, despite the fact the basis for nanotoxicology as a separate area of study is that things at the nano scale have different properties, and that even if the exact same molecule is used at the nano scale it will have a different toxicological profile due solely to the increased surface area created by the smaller size. Recent independent research in Oregon by a toxicologist who is pulling pesticides off the store shelves and testing them for nano ingredients, because the manufactures are very secretive about nano ingredients, is finding that 90% of them she has tested contain nanomaterials. (http://modernfarmer.com/2015/01/everything-need-know-nanopesticides/).

4) The Mayo Clinic study cited on this page did, in fact, find insects and included the following statement: "Of these 80 specimens, 10 (13%) contained insects. All but one of the insects were noninfesting varieties; 1 (1%) was a pubic louse." Thus they dismissed their own findings because they were "non-infesting," (or not previously known to infest people and not supposed to be there) and never named the species that were found. The Mayo study also stated: "20 of the 80 samples (25%) were submitted for pathologic evaluation." So only 20 samples from the 108 participants were sent for evaluation by a pathologist, yet it concludes that all 108 people have DP. The statement in this article that the Mayo study did not find insects needs to be corrected.

5) Another study written by medical professionals omitted by the author of this page: http://www.jmedicalcasereports.com/content/3/1/8243. Surely this has more credibility than a Popular Mechanics magazine story?

Case report Morgellons disease, illuminating an undefined illness: a case series

William T Harvey1*, Robert C Bransfield2, Dana E Mercer3, Andrew J Wright4, Rebecca M Ricchi5 and Mary M Leitao6 

   * Corresponding author: William T Harvey idmed99@aol.com

Author Affiliations

1 Preventive Medicine, Colorado Springs, CO 80949, USA

2 Psychiatry, Red Bank, NJ, 07701, USA

3 Veterinary Medicine, Fulton, TX, 78358, USA

4 General Practitioner, Bolton BL1 4QR, UK

5 Adult Medicine, USAFA, CO, 80840, USA

6 BS (Biology), Guilderland, NY 12084, USA

For all author emails, please log on.

Journal of Medical Case Reports 2009, 3:8243 doi:10.4076/1752-1947-3-8243

The electronic version of this article is the complete one and can be found online at: http://www.jmedicalcasereports.com/content/3/1/8243

Received: 28 November 2008 Accepted: 17 March 2009 Published: 1 July 2009

© 2009 licensee BioMed Central Ltd.

This is an Open Access article distributed under the terms of the Creative Commons Attribution License(http://creativecommons.org/licenses/by/3.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

concludes that:

Conclusion Proposed Characterization of Morgellons Disease

The authors conclude that Morgellons disease is a multi-systemic illness that has been presumed as a delusional phenomenon for decades as its most obvious and disconcerting manifestations resembled actual (but "unverified") parasite infestation as well as various psychopathologies. However, using recent technology and even a modicum of consistently obtained physical data supports that Morgellons manifest as a skin phenomenon, an immune deficiency state and a chronic inflammatory process. Since infectious agents can initiate and maintain chronic diseases, the behavioral and other CNS manifestations here are more likely effect than cause [18]. We suggest that the Morgellons label be considered to displace any label suggesting delusion as the primary cause of this phenomenon.

6) Another doctor (Integrative Medicine) and researcher on Morgellons, who was omitted on this page was Dr. Hildgarde Staninger (http://1cellonelight.com/), an industrial toxicologist specializing in nanotoxicology. She has treated hundreds of patients for this, which she calls Advanced Materials syndrome (basically nanotech). There are many research papers, videos and radio interviews on her websites and on the Internet regarding her work with what this page calls Morgellons.

The possibility of reactions to nanotech shouldn't be a surprise to dermatologists, who were among the first medical specialty to prescribe drugs containing nanotech in the 1990's with Retin A creams (they contain C20, a diminutive cousin of the C60 fullerenes (see Wiki Fullerenes & http://www.drugs.com/international/tretinoin.html) designed to reduce sun and other damage on the skin. The target market for these Retin A (tretinoin topical) creams was middle-aged Caucasian women, the same group that is disproportionately represented in the Kaiser Morgellons Study. Did anyone in the Kaiser study think to ask the middle-age white women in their study, all of whom we are told had sun damaged skin, if any of them had been prescribed Retin A?

A 2007 Consumer Reports study on sunscreens (http://www.virlab.virginia.edu/Nanoscience_class/lecture_notes/Nano_challenges_and_fears_Supporting_materials_files/Case%20Study%20-%20Nano%20sunscreen/No%20Nano%20Sunblocks%20-%20ConsumerReports.pdf), which dermatologists recommend to virtually everyone of any age, found nano scale ingredients in 4 out of 5 sunscreen products it tested that claimed not to use nanoparticles. Although dermatologists may not be aware of it, the same nano scale titanium dioxide and zinc oxide nano particles used in sunscreens are used in building trade applications as semi-conductors and photo-catalysts. The book Nanotechnology in Eco-efficent Buildings (edited by F. Pacheco, et al., Woodhead Publishing, Phil, PA, 2013) contains entire chapters on the use of nanoparticles of Titanium Dioxide and Zinc Oxide (both common in sunscreens) as semi-conductors and photo-catlaysts, and includes in Chapter 7 a very thoughtful and well documented evaluation of these substances with respect to human and environmental health.

So, doctors at Kaiser and around the country are recommending and prescribing nanotech items on a regular basis from the Dermatology Dept to the Oncology Dept. with very little training (other than the drug company reps) or knowledge in nanotech and their pathologists also may have no training in nanotech or could be using equipment unable to detect what the doctors are prescribing.

The propensity of carbon nanotubes to agglomerate into hard particles when in a wet environment (like our bodies) and to form fibers by aligning their electrical charge when in dry environments (like on the surface of our skin) is so well known and understood that the nanotoxicology research website is actually called www.particleandfibretoxicology.com. Nobody at Kaiser, the CDC or the NIH knows nanotubes create fibers? The best description I have read of this was in The Toxicology of Carbon Nanotubes edited by Ken Donaldson, et al, (Cambridge University Press, Cambridge, UK, 2012).

The microscopic hexagons widely reported and photographed by people with Morgellons (http://www.morgellonsexposed.com/plaques.htm, https://www.youtube.com/watch?v=qyMhUKOzO2I) are explained in the book Semi-conducting Nanocrystal Quantum Dots edited by Andrey L. Rogach (Springer Wien, NY, 2008) as one form of MEMS, or microelectrical mechanical systems. The book includes nice photos identical to those on the Morgellons webpages noted above including isometric drawings of their stacking.

Government Depts. such as Veteran’s Affairs, have repeatedly diagnosed people with somatic disorders including soldiers exposed to nuclear blast radiation, Vietnam vets exposed to Agent Orange, and Gulf War vets and attacked them and portrayed them publicly as whiners and malingers and denied them disability and treatment other than for mental disorders. But of course with decades of hindsight we now know otherwise, Lyme disease, chronic fatigue and multichemical sensitivities were also in the mental illness bucket. The official government policy is “plausible deniability” and all the above mentioned examples are this policy in action. Basically speaking truth to power involves first being ignored, then attacked (as crazy) and then finally accepted. Morgellons is a great example of this policy in action. Right now in Europe they are discussing how to treat people disabled with electromagnetic sensitivity. Sweeden now pays disability and provides special housing to these people. Guess what they are trying to say about that: it is an Internet meme and the people are mentally ill. Sound familiar? The US government has heavily invesedt in nanotech, and even K. Eric Drexler admits that the military will be the greatest user of nanotech research and applications. (Radical Abundance, Perseus Books, NY, NY. 2013). Nano was allowed in the USA food supply as a GRAS coloring agent in 2002 by the FDA, and is not even prohibited in organics. It is in our bright white toothpaste, food, pesticides, personal care products and supplements, prescription drugs, water filtration systems and clothing, and they are being very secretive about all this. I can document all this for you, but why bother?

I have read some of the edit requests on this page and it appears a few people are blocking pretty reasonable requests for revisions on really absurd technical grounds. I know you won’t actually change the page to include my editing, but I am leaving this info here for others to read. This is the worst and most biased Wikipedia article I have ever read.

2602:304:374F:DAC0:9C1D:1ECD:9641:22F0 (talk) 06:44, 9 March 2015 (UTC)[reply]

None of those references meet WP:MEDRS. (It is possible I have missed one, that is quite the wall of text). Dbrodbeck (talk) 11:42, 9 March 2015 (UTC)[reply]
People suffering from conditions caused by identifiable parasites or toxins are people suffering from conditions caused by identifiable parasites or toxins. People suffering from Morgellons have conditions for which there is no physical cause by definition. Like Joni Mitchell, they may even believe they are exuding material that "cannot be forensically identified as animal, vegetable or mineral." (Comment repeated below.) 109.144.222.250 (talk) 12:51, 3 April 2015 (UTC)[reply]

Morgellons is micro-myiasis by small fly larvae

Please correct the article on morgellons to include the following very important points and reference!

Astonishingly, many practicians actually read no other reference besides Wikipedia. Patients are being left without treatment because of such texts.

Everyone who is a patient or a health professional or a family member ought to read the following piece of research: http://www.morgellonsuk.org.uk/micromyiasis.htm Cite error: There are <ref> tags on this page without content in them (see the help page). It explains how small flies' larvae live in the skin. This is a great relief after all those supernatural explanations. Tourists catch it from sand flies on African beaches. It ought to be thought of as a returning travellers' illness with routine check ups and ivermectin injections.

It is useful to know that some balls of filaments are likely fly frass. Also that other longer filaments are most likely from clothes, transported into the skin by larvae when they enter the skin[1].

It is useful to know that freezing will not help, but that hot temperatures do help, for clothing and other materials. Regular hot sauna bathing will help as well, but infrared sauna will not.

Psychological effects of the illness are most likely due to being afraid of being contagious. Once the nature of the illness is elicited, the fear of contagion should subside a little.188.238.143.199 (talk) 23:00, 20 March 2015 (UTC)[reply]

References

  1. ^ http://www.morgellonsuk.org.uk/micromyiasis.htm
See Wikipedia:Identifying reliable sources (medicine). We do not base article content on partisan websites. AndyTheGrump (talk) 23:41, 20 March 2015 (UTC)[reply]

Pronunciation?

Rothorpe (talk) 00:25, 2 April 2015 (UTC)[reply]

  • UK /mɔː(ɹ)ˈdʒɛlənz/
  • US /mɔɹˈdʒɛlənz/

has now appeared at Wiktionary, 'MorJELLons'. Rothorpe (talk) 17:53, 2 April 2015 (UTC)[reply]

Is this article WP:POV?

I came to this article to find out more about Morgellon's disease after the reports about Joni Mitchell. Anyway - I was surprised to see it say definitively that this is delusional, when the news stories were says things such as

"Morgellons is a controversial condition and is not recognised by mainstream medical authorities. Sufferers say it is characterised by crawling and stinging sensations under the skin but many in the medical community believe it is a psychiatric disorder." from BBC news report: Joni Mitchell in 'intensive care' in Los Angeles hospital

It's one thing to say, as the BBC did in their report, that "Many in the medical community believe it is a psychiatric disorder." It's another thing altogether to say as the lede of this article says, that "Morgellons (also called Morgellons disease or Morgellons syndrome) is a condition whose sufferers have the delusional belief that they are infested with disease-causing agents described as things like insects, parasites, hairs or fibers, while in reality no such things are present.". That is to present this view as a "fact", as a "view from nowhere".

"The NPOV policy says nothing about objectivity. In particular, the policy does not say that there is such a thing as objectivity in a philosophical sense—a "view from nowhere" (to use Thomas Nagel's phrase), such that articles written from that viewpoint are consequently objectively true. That is not the policy, and it is not our aim! Rather, to be neutral is to describe debates rather than engage in them. In other words, when discussing a subject, we should report what people have said about it rather than what is so. "

See Wikipedia:Neutral_point_of_view/FAQ

Anyway so I did a google scholar search, to find out more, and there are several articles saying that it is possibly non delusional, in several different peer reviewed clinical journals.

I was also interested to see that the most recent in the google scholar search results, published in March 2015 12 February 2015, comes to the definite conclusion that "Our study using multiple detection methods confirms that MD is a true somatic illness associated with Borrelia spirochetes that cause Lyme disease. Further studies are needed to determine the optimal treatment for this spirochete-associated dermopathy."

Details

Here is the first article I found from 2010: Morgellons disease: Analysis of a population with clinically confirmed microscopic subcutaneous fibers of unknown etiology, Virginia R Savely and Raphael B Stricker, Clin Cosmet Investig Dermatol. 2010; 3: 67–78.

Amongst other points, it mentions a high level of association with Lyme disease - 97% of those reporting it had Lyme disease. It reports a far higher level of smoking than the general population (smoking reduces immune response). It confirms presence of the fibres below the skin, including in places that can't be reached by patients such as the middle of their backs. It says that they were hard subcutaneous micro-fibres, so difficult to analyse.

And it makes this point:

"The prevalence of delusional disorder in the US is estimated to be about 0.03%, and a similarly low prevalence is found in other societies. A review of the backgrounds of 3,000 self-reported cases of Morgellons disease found pre-existing delusional disorders to be no more prevalent than would be expected in the general population. Nevertheless, patients with symptoms of Morgellons disease are routinely dismissed as delusional. The present study reinforces the fact that Morgellons patients appear to be distinct from patients with delusional disorders in terms of demographics and symptomatology."

Other articles on the same topic (2006):

"Morgellons disease is a mysterious skin disorder that was first described more than 300 years ago. The disease is characterized by fiber-like strands extruding from the skin in conjunction with various dermatologic and neuropsychiatric symptoms. In this respect, Morgellons disease resembles and may be confused with delusional parasitosis. The association with Lyme disease and the apparent response to antibacterial therapy suggest that Morgellons disease may be linked to an undefined infectious process. Further clinical and molecular research is needed to unlock the mystery of Morgellons disease." The Mystery of Morgellons Disease, Virginia R. Savely, Mary M. Leitao, Dr Raphael B. Stricker, American Journal of Clinical Dermatology February 2006, Volume 7, Issue 1, pp 1-5

Also (2009):


This one is based on a case study combine with a review of 251 previous citations:

"These data suggest Morgellons disease can be characterized as a physical human illness with an often-related delusional component in adults. All medical histories support that behavioral aberrancies onset only after physical symptoms. The identified abnormalities include both immune deficiency and chronic inflammatory markers that correlate strongly with immune cytokine excess. The review of 251 current NLM DP references leads us to the possibility that Morgellons disease and DP are grossly truncated labels of the same illness but with the reversal of the cause-effect order. Further, the patients’ data suggest that both illnesses have an infectious origin."

"Proposed Characterization of Morgellons Disease The authors conclude that Morgellons disease is a multisystemic illness that has been presumed as a delusional phenomenon for decades as its most obvious and disconcerting manifestations resembled actual (but “unverified”) parasite infestation as well as various psychopathologies. However, using recent technology and even a modicum of consistently obtained physical data supports that Morgellons manifest as a skin phenomenon, an immune deficiency state and a chronic inflammatory process. Since infectious agents can initiate and maintain chronic diseases, the behavioral and other CNS manifestations here are more likely effect than cause. We suggest that the Morgellons label be considered to displace any label suggesting delusion as the primary cause of this phenomenon." Morgellons disease, illuminating an undefined illness: a case series William T Harvey, Robert C Bransfield, Dana E Mercer, Andrew J Wright, Rebecca M Ricchi, Mary M Leitao Journal of Medical Case Reports July 2009

Also (2013) - this is in F1000 research - so article submitted before review, with open process of peer review, has several "approve" reviews at the end by experts.

"Like BDD [a similar disease of cattle], MD filaments are produced by epithelial cells and stem from the stratum basale and from the root sheath of hair follicles, thus providing evidence that the filaments are cellular in origin 3, 4. Furthermore, immunohistochemical and histological staining has demonstrated that these filaments have a collagen as well as a keratin component. Like cattle with BDD, patients with MD also produce antibodies reactive to Borrelia burgdorferi antigens 18. Multisystemic symptoms resembling Lyme disease also imply a possible spirochetal etiology for MD 1– 3, 18, 19. The frequent clinical diagnosis of Lyme disease and coinfecting tick-borne pathogens in MD patients suggests a multifactorial etiology and possible vectoring by ticks" Association of spirochetal infection with Morgellons disease Marianne J Middelveen, Divya Burugu, Akhila Poruri, Jennie Burke, Peter J Mayne, Eva Sapi, Douglas G Kahn, and Raphael B Strickera, F1000Res, 2013 Jan 28. doi: 10.12688/f1000research.2-25.v1

Also (2015):

"Our study using multiple detection methods confirms that MD is a true somatic illness associated with Borrelia spirochetes that cause Lyme disease. Further studies are needed to determine the optimal treatment for this spirochete-associated dermopathy.".

..."We undertook a detailed microscopic and molecular study of North American MD patients to investigate the presence of borrelial spirochetes systemically and in dermatological specimens. Based on culture, histology, immunohistochemistry, electron microscopy and molecular testing, we present extensive evidence for spirochetal infection in MD patients. Our study confirms that MD is a true somatic illness associated with Lyme disease. The proposed clinical classification scheme for MD should aid in the diagnosis and treatment of this complex illness." Exploring the association between Morgellons disease and Lyme disease: identification of Borrelia burgdorferi in Morgellons disease patients Marianne J Middelveen, Cheryl Bandoski, Jennie Burke, Eva Sapi, Katherine R Filush, Yean Wang, Agustin Franco, Peter J Mayne1 and Raphael B Stricker, BMC Dermatology 2015, 15:1 doi:10.1186/s12895-015-0023-0

That last is a recent article, published 12 February 2015, and comes to the definite conclusion that "Our study confirms that MD is a true somatic illness associated with Lyme disease.".

Mayo Clinic is a reliable source

And they say it's real: http://www.mayoclinic.org/morgellons-disease/art-20044996 98.118.62.140 (talk) 00:43, 3 April 2015 (UTC)[reply]

Special responsibilities for WP:NPOV in articles on medical topics in Wikipedia

As someone else said, nowadays often even doctors go to Wikipedia, and may not always be aware of the issues of WP:POV of some articles. So we have a special responsibility, I think, to be rigorously WP:NPOV, especially so in medical articles. So anyway - this is to suggest editors with a medical background might like to review this cite, and possibly update the article as needed.

About BMC Dermatology for the most recent 2015 cite:

BMC Dermatology is an open access, peer-reviewed journal that considers articles on all aspects of the prevention, diagnosis and management of skin disorders, as well as related molecular genetics, pathophysiology, and epidemiology.

It surely satisfies all the qualifications for reliable citations in wikipedia?

Robert Walker (talk) 11:56, 2 April 2015 (UTC)[reply]

See WP:MEDRS for Wikipedia's standards for reliable medical sourcing, and then evaluate the sourcing based on those criteria. Zad68 12:17, 2 April 2015 (UTC)[reply]
I have a general science background and am not a medical expert. So don't plan to edit the article myself. I'm just posting this for the attention of medical experts who would be able to evaluate the sources properly and also would be able to summarize them accurately in the article. I think the cites I found are probably enough to show that there is at least a diversity of views on the matter in the medical community, but as I'm no expert, am just suggesting that those with a medical background might care to review the cites and edit the article if necessary. Thanks! Robert Walker (talk) 13:18, 2 April 2015 (UTC)[reply]
Have read the replies to other posts on this talk page now. I can understand that the 2015 paper is recent on-going research and can understand the point that papers need to be presented in an overall review paper rather than in possibly controversial individual studies. That makes sense especially for medicine, as the subject is noted for the prevalence of articles based on limited case studies that suggest that something is a cure for a disease, followed by other articles with more patients that disprove those first ones.
So there is bound to be a lag between the first new leading edge results in medical journals, and those results gaining acceptance to the level where they can be reported in Wikipedia.
However, at the very least, the lede should surely say something like the BBC news story, that "many in the medical community (but not all) think that it is a condition whose sufferers have the delusional belief..." rather than just say "it is a condition whose sufferers have the delusional belief...".
And - I'd have thought it was also okay to use these cites as sources to show that there are members of the medical community who do not consider it to be a delusional belief? After all the authors of these papers clearly don't think it is a delusional belief.
I can see that what is needed are text books, or review articles or other good secondary sources citing these primary sources. I'll see if I can come up with anything more. Robert Walker (talk) 14:02, 2 April 2015 (UTC)[reply]
Did a short search, to try to find a recent survey article of Morgellon's disease in a recognized non fringe and peer reviewed medical journal, or a recently published text book on the subject. But have't found anything. Just lots of individual papers - have added another couple to the list section above. Interestingly, none of the recent articles I found on it in Google scholar proposed that it is delusional in origin though some said that it can have delusional beliefs associated that manifest later on after onset of the first physical symptoms.
Nearest to an overview was this one, but it is in a book about mental health - still it may be of some interest as it is quite detailed and takes a hstorical approach to the subject: Beyond Mental Illness: Transform the Labels Transform a Life By David Moyer, LCSW. Anyway that's probably the best I can do for now. Suggest that it needs attention though and that the lede at least should be changed to say something like "many in the medical community (but not all) think that it is a condition whose sufferers have the delusional belief..." for now. Robert Walker (talk) 14:38, 2 April 2015 (UTC)[reply]
Zad68 is correct about MEDRS. We never publish leading edge research. We wait for duplication and confirmation in other studies and then use reviews of the existing research. There are other problems. The open source journal aspect is just one. There is little control, and BMC has just been involved in a huge scandal and withdrawn a bunch of their articles because of peer review fraud. I don't know if this has been included in the BMC and peer review articles yet because the story is still developing. I don't know that any of the ones above are involved, but it shows that their standards are far too lax. The authors are also problematic. Virginia R Savely and Raphael B Stricker are nearly always behind any research claiming this is anything but a psychosomatic condition. They have been involved from the very beginning and nearly own the diagnosis, so we're very reluctant to use them. Also how news reports word things does not guide how we word things. So far we're just following the lead of content from reviews. -- BullRangifer (talk) 14:57, 2 April 2015 (UTC)[reply]
Okay I can understand all that, it makes sense.
As far as I can see your only objection to citing Virginia R Savely and Raphael B Stricker is that they have been the leading researchers in the field - not any evidence of wrong doing or assessment of fringe by other researchers. But I can understand that wikipedia has to wait until it is confirmed and then reviewed.
As for the lede, how about using something like the approach of this quote instead (better model than a news article of course)?
"Proponents of Morgellons disease define it as illness in which thread-like fibers under the skin cause crawling sensations, skin changes, fatigue, pain, and “brain fog.” The term is not widely accepted by the medical community; it is mostly believed that it is a form of delusional infestation or somatic symptom disorder. " - from The Morgellon's Debate, in Practical Psychodermatology (book). (Of course not those exact words unless in quotes would be WP:COPYVIO but a similar statement).
The main issue I have with the lead is that it says quite definitively that it is psychosomatic, as a "view from nowhere", without attributing that statement to anyone. The cites I found wouldn't seem to support such a definitive statement as that, and it seems that at least some medical researchers would choose to disagree with that view. So, seems not quite to accord with the guidelines on WP:NPOV in the FAQ.
While saying soemthing like " it is mostly believed that it is a form of delusional infestation or somatic symptom disorder." as that chapter intro says would seem to be supported by the cites - bearing in mind this understandable guideline about not including leading edge medical research. Robert Walker (talk) 17:16, 2 April 2015 (UTC)[reply]
We can save some time by noting that that book chapter was discussed previously on this talk page; see Talk:Morgellons/Archive 11#Medical Textbook with Chapter on Morgellons. TenOfAllTrades(talk) 17:41, 2 April 2015 (UTC)[reply]
Indeed. That plus WP:MEDRS together say that nothing needs to change. It's never been hard to find individual books providing (generally false) balance between scientific consensus and pseudoscientific drivel, as anyone familiar with the popular literature on quackery will know. Guy (Help!) 18:48, 2 April 2015 (UTC)[reply]
I found a lot of pseudo science yes. But the ones I cited were ones that were published in clinical journals. I didn't realize that this had been discussed so extensively, I've read some of the archives, now, seems it comes up often. It doesn't seem to me, as someone new to all this, that there is a consensus in favour of presenting the lede in its present form. Nor did I find the arguments in favour of keeping it in its present form compelling, didn't seem to be a knock down case for this in the debates - and there were several alternative ledes presented some of which seemed better to me. Have you tried an RfC on it?
As for your remarks about the cites I gave - that they are primary sources - seems to me that many of the cites used by the article in favour of the delusional beliefs hypothesis, e.g. in the lede, would fail the same criteria. For instance, http://link.springer.com/article/10.1007%2Fs11920-011-0188-0 just to take an example, but most of the first few cites in the article are of that nature. I'm not saying that the existing cites are invalid. Just that some at least seem to be equally leading edge primary research to the ones you've left out.
That is unless you have some stronger reason for believing the ones by Virginia R Savely and Raphael B Stricker are fringe than just that they publish frequently on this topic and have many papers on it. Because that is often the mark of a good scientist leading his or her field, as much as a bad one with a fringe hypothesis. In an area I know something about for instance, there are many articles by Nilton Renno on water on Mars - that's because he is a leading expert on this topic and often writes and co-authors. Similarly Chris McKay co-authors an astonishingly large number of articles on astrobiology - he is recognized as an expert in that topic area also. And their 2006 article is cited by 74 later articles which seems a respectable level of citations to me. [1]. I don't see any of the obvious signs of fringe science here at least. Robert Walker (talk) 19:27, 2 April 2015 (UTC)[reply]
Of course there are others that are clearly fringe, I came across those also, but the ones listed above, these don't seem to be at all. At least not obviously so on a first look. And published in several different sources, different medical journals. Just my 2cts :). On what is clearly a long running debate on this talk page which I didn't realize. Robert Walker (talk) 19:27, 2 April 2015 (UTC)[reply]
Well, Stricker actually has a finding of research misconduct against him [2]; he fudged data to get an NEJM paper that was retracted by his three co-authors when they found out what he did: [3]. As a consequence, was barred by the ORI from receiving or applying for federal grants for three years in the 1990s. So he's previously gotten into serious trouble for throwing out data that doesn't fit his preferred hypothesis.
In recent years, his publications seem to be almost exclusively low-impact papers, opinion bits, and letters related to Morgellons and the related dubious diagnosis of chronic Lyme disease. I suppose it's possible that he might be "leading his field", but if so it's taking an awfully long time for anyone to start following. It's looking much more like he's just wandering in the wilderness.
And the advent of the "open-peer-review" journals (where the journal publicly posts the identities and sometimes the comments of peer reviewers) opens a window on at least some mild shenanigans regarding reviewer selection in some of his recent papers. This 2013 F1000 paper has a publisher's note about an undisclosed conflict of interest, where one of the reviewers was co-authoring another manuscript with the paper's authors while reviewing the F1000 paper. And one of the reviewers of the current paper (BMC Dermatology, 2015) was Robert Bransfield [4], who is actually acknowledged in the paper (!) ([5]) for his contributions. This sort of thing has a couple of likely explanations—Stricker (et al.) are deliberately pointing journal editors at very friendly peer reviewers (and these mostly-crappy, low-impact journals don't do much due diligence), potential conflicts of interest be damned; or these papers are so far out on the fringe that it's very difficult for journal editors to find anyone who is willing to waste time on reviewing manuscripts on these topics, so they're relaxed about their reviewer standards; or both. TenOfAllTrades(talk) 00:27, 3 April 2015 (UTC)[reply]
Okay I see, thanks for explaining. Yes I agree, especially that it doesn't look good at all that he was found to have fudged data in the past. That would be a red flag for me also when choosing citations for an article. I understand better now why you are cautious about citing his research. And I can understand, so your point is - that you want to be able to include another WP:POV if it is valid and supported - but haven't yet been able to find any papers that meets up to the standards needed for citation. It does seem to be a field that attracts a lot of low quality research alongside the good stuff and hard to be able to know which are the good cites to use. Robert Walker (talk) 01:38, 3 April 2015 (UTC)[reply]
I can see the point, still I feel the lede is still overstating the case by saying that it "is a condition whose sufferers have the delusional belief" - you have to say "says who" - I don't think you could say it's been proved definitively. And there are many obviously who think that it is not originated in delusion. So, I think it has to be qualified, I'd say, by saying who it is who says they have a delusional belief. Because it is a matter of conflict, and debate, even if the controversy may be largely between mainstream medical researchers, and other researchers whose status may be less established, and the patients themselves, and various support organizations. I think that should be reflected somehow in the lede. Maybe then you'd get less of these objections on the talk page also.

After all the guidance on the lede is that it should be like a shorter version of the article itself. And later in the article it says "Most dermatologists, psychiatrists, and other medical professionals view Morgellons as a new name for a well established condition, delusional parasitosis" then "This explanation is, however, "unpopular among individuals identifying themselves as having Morgellons disease"" - that's much better than the lede because it attributes everything said to a source and shows that there is controversy here.

Also the article doesn't mention the Charles Holman Foundation. It seems quite a major organization. The thing is that wikipedia should present any significant, noteworthy POV. For instance, it presents the views of climate skeptics. It says clearly in those articles that the main stream scientific view is of climate change - but then presents the views of climate skeptics just as they understand it. So - I think it should present the views of the patients - and the researchers who agree with them, and the Holman foundation - in some form or another. Even if it is currently regarded as fringe (which I don't know if it is) - it should I think be presented in some form or other.

Even if it was views of medical researchers all on one side, and views of alternative medicine and fringe on the other side, if it is a significant widely held POV then it needs to be covered I think appropriately labelled, e.g. as fringe, or as alternative medicine if that is what it is, or as minority mainstream if that is what it is. Also - I see that the Holman foundation has an article about this very article, saying that they regard it as biased because it leaves out peer reviewed citations of views not covered in the article. See Anonymous Editing on Wikipedia Keeps Morgellons Sufferers in the Dark. It's an article from 2013. So details probably not up to date.

They hosted a conference in 2015, with many speakers on Morgellon's disease, eleven speakers on the page here: 8th Annual Medical Scientific Conference on Morgellons Disease. With a diversity of views but quite a few presenting the possiblity that infectious agents are involved in causing the disease.

Also, what you say about Saveley having in the past falsified data doesn't prevent the possibility that his more recent research he has turned a leaf and is doing good research now, and with seems quite a few other researchers following similar lines also it would seem.

Anyway - I think that the lede has to somehow present a diversity of views - that it is not just delusional as the only view. The main thing then being how to characterize the other views. Which again are surely not just patients also and not just internet self diagnosis as the article claims at present. But quite a large body of people who have this WP:POV and are academically trained and so forth. Wikipedia, if I understand the guidelines on WP:POV then this view has to be presented somehow in this article, and also given a fair bit of space, difficult though it may be to decide how to present it and I think it would need somehow to be reflected in the lede also. The big question would be whether the diversity of views should bes presented as main stream vs fringe and alternative medicine, or a diversity of views amongst medical professionals, or perhaps some of both. I don't think it is accurately presenting the current situation not to mention this diversity of WP:POV at all any more than it would be accurate to have an article on climate change that doesn't present the views of climate skeptics at all. Robert Walker (talk) 02:13, 3 April 2015 (UTC)[reply]

Stricker, not Savely, is co-author of the disputed paper. Mistaken attribution above (both are among many 'LLMD' practitioners.) — Preceding unsigned comment added by 66.108.88.29 (talk) 10:32, 3 April 2015 (UTC)[reply]

Yes you are right: Exploring the association between Morgellons disease and Lyme disease: identification of Borrelia burgdorferi in Morgellons disease patients Marianne J Middelveen, Cheryl Bandoski, Jennie Burke, Eva Sapi, Katherine R Filush, Yean Wang, Agustin Franco, Peter J Mayne1 and Raphael B Stricker, BMC Dermatology 2015, 15:1 doi:10.1186/s12895-015-0023-0
Also the introduction to that article says

"Morgellons disease (MD) is a complex skin disorder characterized by ulcerating lesions that have protruding or embedded filaments. Many clinicians refer to this condition as delusional parasitosis or delusional infestation and consider the filaments to be introduced textile fibers. In contrast, recent studies indicate that MD is a true somatic illness associated with tickborne infection, that the filaments are keratin and collagen in composition and that they result from proliferation and activation of keratinocytes and fibroblasts in the skin. Previously, spirochetes have been detected in the dermatological specimens from four MD patients, thus providing evidence of an infectious process."

Which I'd have thought fulfills the requirements of being a review of previous research rather than leading edge new research, and so capable of being cited in this article. And Savely is not an author. And one of the co-authors is Marianne J. Middelveen, a Veterinary Microbiologist, which makes sense with the Bovine disease connection - the results of that article, that they found similar fibres, also analysed to be a mixture of keratin and cellulose, in a disease of cattle.
And this is her abstract for the conference, says much the same.

Abstract: Morgellons disease is a controversial topic in medicine. There are two polarized views regarding Morgellons disease: one, that it is a somatic illness and that it has an infectious etiology and two, that it is a psychiatric illness. Those that maintain it has an infectious etiology argue that the lesions are primary and result from an infection. Those that believe it is psychogenic in origin argue that there are no primary lesions and that lesions are secondary to psychiatric illness, the result of self-excoriation. The evidence supporting these two hypotheses will be examined.

If you look at the conference listing, seems a wide range of authors.
Two are from the Center for the Investigation of Morgellons Disease at Oklahoma University.
They say in the page for the center, on the Oklahama University website:
  • "Morgellons is a multi-system disease of unknown etiology
  • Morgellons disease is discounted as psychiatric illness or other skin condition by many public health officials and physicians
  • Physical and neurological symptoms are often dismissed or ignored
  • Sufferers are labeled with delusions of parasites or neurotic excoriations from obsessively picking at the skin
  • OSU-CHS physicians/researchers have physical evidence of Morgellons Disease
  • Morgellons is not psychiatric in origin
  • Morgellons is an emergent disease
  • Tangible fibers are found in Morgellons lesions"
Director Randy Wymore, Research associate Carol Saylor-Hefley
If you look at the list of presenters to the conference and click through to find out more about the presenters, some of them have impressive backgrounds.
It doesn't have the tell-tales of fringe for me at all. Seems more like a medical controversy, and not just a couple but many authors who have this alternative WP:POV. Many of them clearly notable. And not credible at all, seems to me, that they are all falsifying this data.
I feel that it has to be covered just on basis of notability, that they publish many papers, that they have a foundation, and several organizations and centers devoted to the research and so on. And it's not the place of wkipedia to say that they are wrong in their views.
Also another relevant thing, this is how the United States National Library of Medicine characterizes it as:
Morgellons Disease "An unexplained illness which is characterized by skin manifestations including non-healing lesions, itching, and the appearance of fibers. There appears to be a strong association with LYME DISEASE."
The Mayo Clinic summary says
  • "Some health professionals believe that Morgellons disease is a specific condition that needs to be confirmed by research.
  • Some health professionals believe that signs and symptoms of Morgellons disease are caused by another condition, often mental illness.
  • Other health professionals don't acknowledge Morgellons disease or are reserving judgment until more is known about the condition."

Suggestion: new article on the Morgellons Disease Foundation

One other thought I had, I could do a stub article on the Morgellons Disease Foundation. It is easily notable enough to have a page on wikipedia, according to the guidelines, seems to me. Any organization that organizes an annual conference with many academic speakers, and which is linked to by universities and the likes of the Mayo clinic, seems to me, easily fulfills the Wikipedia guidelines for notability.

Then that might help defuse the situation here a bit perhaps. You could link to that page in the lede, and then because it is an article about an organization rather than a medical condition, may then be easier to present the material in a WP:NPOV way as it is no longer bound by the wikipedia guidelines on articles about medical conditions. Then I could include the material just given now, seems to me all that would be appropriate in an article about the Morgellons disease foundation, whatever your thoughts about whether to include it here. Not fork. If you feel that it is an alternative medicine group (doesn't seem to me that it is, but if you decided that it is), then still deserve an article like the way we have articles on the Bach flower remedies or Homeopathy.

There is a very short summary of the foundation here, in the press release for the 2014 conference

"The Charles E. Holman Morgellons Disease Foundation, based in Austin, TX, is a 501(c)3 nonprofit organization committed to advocacy and philanthropy in the battle against Morgellons Disease. The foundation was named for Charles E. Holman, a pioneer in the fight against Morgellons Disease, and is led by Director Cindy Casey-Holman, "

which could be a starting point for the new article, as well as including some of the other material here. I can try a draft over the weekend in user space first. Robert Walker (talk) 11:38, 3 April 2015 (UTC)[reply]

Morgellons is a real physical disease:

The info. here is totally misleading to the public. All research should be considered before submitting a claim that truly sick and suffering people are delusional. This false claim is criminally abusive to all those who suffer from this physical disease. Already desperate for human support and understanding, you've made that struggle much more difficult. Please refer to the research being conducted and supported by The Charles E Holman Foundation. Go to their website and see the latest research published in peer reviewed outlets. There is an infectious component to this disease. It is real. The victims need your support, not your ignorant distortion of the facts. Please, please, please educated yourselves respectively. The information presented here is wrong. Glenda95 (talk) 01:25, 3 April 2015 (UTC)[reply]

Please please please bring a WP:MEDRS compliant source. Dbrodbeck (talk) 01:26, 3 April 2015 (UTC)[reply]
Mental illnesses are real physical diseases. Encouraging people to think otherwise is what really shows a lack of human support and understanding, by further stigmatizing people who are already suffering. TenOfAllTrades(talk) 02:05, 3 April 2015 (UTC)[reply]
People suffering from conditions caused by identifiable parasites or toxins are people suffering from conditions caused by identifiable parasites or toxins. People suffering from Morgellons have conditions for which there is no physical cause by definition. Like Joni Mitchell, they may even believe they are exuding material that "cannot be forensically identified as animal, vegetable or mineral." (Comment repeated from above.) 109.144.222.250 (talk) 12:53, 3 April 2015 (UTC)[reply]

Well done, Wikipedia

Curiosity piqued by the Joni Mitchell story, I came here expecting nutjobbery or, at best, false balance, only to find that WP has for once had the courage to accurately reflect the scientific consensus. Kudos to all the editors involved. 31.55.6.67 (talk) 11:51, 3 April 2015 (UTC)[reply]

User Space Draft for new article on the Morgellons Disease Foundation

Here is my draft in user space: Morgellons Disease Foundation.

What do you all think? Shall I submit this as a new article? I've been careful to be WP:NPOV and make it clear also that they are an advocacy group. And end with the conclusion, "Note, that all this is leading edge research, and has not reached the stage where it is generally accepted by the medical profession.".

I think it would be acceptable as an article according to wikipedia guidelines. And then you could link to it in the lede and that would, I think, also defuse a lot of the hositility of some of the posts in this talk page too. It shows that wikipedia is covering the topic, is not ignoring it, which I think is the main thing of concern by many of the posters here. And by making it clear that it is leading edge research and that this is an advocacy group - bypasses all the issues I think that you feel make it hard to cover it here. Robert Walker (talk) 12:51, 3 April 2015 (UTC)[reply]

"Leading edge" is loaded and the MDF position has generally been rejected (rather than not yet accepted) by the medical profession. 109.144.222.250 (talk) 12:57, 3 April 2015 (UTC)[reply]
Retrieved from "https://en.wikipedia.org/w/index.php?title=Talk:Morgellons&oldid=654772426"