Talk:Morgellons

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CDC Section

I was wondering, in light of the recent announcement regarding the investigation, whether the following paragraph still has any relevance and whether it should be included. It doesn't help or hurt either "side" -- it is just outdated:

"Earlier, prior to June of 2005, "Sens. Dianne Feinstein and Dick Durbin contacted the Centers for Disease Control and Prevention (CDC), asking whether the organization had investigated the illness. The answer was no. "Our laboratories are available," said CDC spokeswoman Jennifer Morcone. "But we need a clinically appropriate sample." So far, she said, they've only received samples sent in by patients."[15] This statement is at odds with a 2006 report in Time Magazine from Greg Smith, a physician with Morgellons, and former Medical Director of the MRF, who attempted to send samples from his own body to the CDC, but stated that the agency "blew it off." The MRF also attempted to share the findings of their OSU research team with the CDC, but the CDC said "it would conduct its own research first, then vet the findings with outside scientists".[16] Pez1103 17:08, 9 August 2007 (UTC)"

I agree, the paragraph is outdated, and adds nothing. Herd of Swine 17:13, 9 August 2007 (UTC)

Sandbox

I am working on a revision at User:Thatcher131/Sandbox2. For now, I would appreciate other editors not changing the text, but comments on the talk page are welcome. I have identified a number of (what I consider to be) deficiences and problems with the article:

1. "In the news" section duplicates the references, should go.
2. The over quoting of the CDC RFQ seems to be an effort to get more acknowledgments of the reality of the disease in the back door.
3. Generally, extensive back and forth quoting it exists...it doesn't exist is a sign of weak writing, or maybe just a result of accretion of stuff with an overhaul due.
4. To much speculation based on unpublished research; some mention of this, yes, but there is an awful lot here.

I have to stop soon for the day but will get back to my sandbox tonight. Thatcher131 17:30, 9 August 2007 (UTC)

There is extensive parallel discussion at User talk:Thatcher131/Sandbox2. Thatcher131 23:27, 9 August 2007 (UTC)

Treatment section

Given there seems to be a movement to restructure the article as more of a description of a disease, perhaps there should be a section on Morgellons treatments, since we have one on symptoms and diagnosis.

There seems to be three primary forms of treatment offered. Most psychiatris and dermatologists treat Morgellons by treating any underly dermatological condition as the condition dictates, and treating other symptoms with antipsychotic medications. See, Psychiatric Arsenal Has Weapons Against Morgellons Disease [1], OCD Patients May Seek Help From Dermatologists [2] and Pimozide at Least as Safe and Perhaps More Effective Than Olanzapine for Treatment of Morgellons Disease,[3]. Other doctors have suggested Cognitive Behavior Therapy, see Cure found for Morgellons disease? [4].

Doctors and nurses in the MRF treat Morgellons very similarly to the controversial late-stage infectious Lyme disease ([5] "Most Morgellons patients, if found positive for Chlamydophila pneumonia, a Babesia species or a Borrelia species pathogenic to humans...and given appropriate antibiotics long enough, resolve most symptoms.") , with long term intravenous antibiotics. [6]. One of the authors of the two original papers on Morgellons has said the rife machine helps in 30% of cases. [7]

There is also a significant amount of self-treatment, with many web retailers offering various treatments. [8], and various of these are mentioned on the NMO's (ex-MRF board members) site [9] Herd of Swine 17:42, 9 August 2007 (UTC)

Good point. I'll work on it in my sandbox. Thatcher131 17:46, 9 August 2007 (UTC)

I think that a treatment section could be potentially harmful since no one knows what causes this disease. It may encourage sufferers to engage in self medication. I doubt that wiki wants to encourage that. Pez1103 17:49, 9 August 2007 (UTC)

I think you'll find that all disease articles have treatment sections. Thatcher131 17:53, 9 August 2007 (UTC)

The article won't encourage a specific treatment, but rather simply report what treatments are used. See: Wikipedia makes no claim of validity and does not give medial advice. Sancho 18:04, 9 August 2007 (UTC)

Yes but most wikipedia articles do have a list of noteable treatments used for most diseases or even controversial diagnoses. If it lists an anti-psychotic, therapy, and the methods used by the MRF, none of these would encourage people to self-treat as people with morguellons don't tend to want an anti-psychotic or therapy, and the machines etc the MRF uses are quite large and specialised, and equipment most people wouldn't easily be able to obtain. We could include any other treatments if they're as noteable as these. You could check out the article on Fibromyalgia to see how this could be managed. It lists the possible medical treatments quite fully (we wouldn't need as much as this as there are less different treatment options for morguellons). Then it offers one sentence about supplements such as folic acid. Then it has a section which includes a therapy which has no evidence that it works for Fibro, so the article says so. And the discussion of treatments there doesn't seem too long. We already say in this article I think, that they're usually offered antipsychotics (but will probably refuse them.) Of course the treatment of the minor skin ailments would be hard to outline as they may be different in individual cases, but we can see what sources we can find associated with Morguellons, that probably include treating the skin complaints with hydrocortisone or whatever.Merkinsmum 10:34, 10 August 2007 (UTC)

Proposal to revise introduction and history sections

The current intro section, while an improvement over some previous versions suggesting that medical opinion was equally divided over the legitimacy of the Morgellons diagnosis, is still misleading.

It is not merely a "majority" of medical professionals that are unconvinced that Morgellons is a defined medical condition, it is a _vast_, overwhelming majority. Only a very few have bought into the theory that it is a novel infectious disease. I realize that people who believe they have this condition are eager to project the idea that the medical and research community agrees with them - but whether or not research ultimately vindicates the idea, _currently, in the absence of evidence, there is NO significant acceptance of Morgellons. If Wikipedia wants to be taken seriously on this score, it will have to permanently protect its article from editing designed to create a false reality. EL

I have rewritten the introduction and history section for length, clarity and style, as well as for other issues discussed here. Please see User:Thatcher131/Sandbox2. (The other sections are not ready.) Please indicate if you agree, disagree, or have other comments. If all sides agree or if no one objects after, say, 24 hours, I propose to replace the section. Thatcher131 18:01, 9 August 2007 (UTC)

Aside from one thing, I'm okay with the intro/history sections as they stand as of this[10] edit. The one thing I would like to suggest is to move the large block quote from the Atlas of Human Parasitology that is in the DP section back into the history section (where it had been shortly before the page was locked); the quote specifies that conditions other than DP are considered to be involved, and is thus significant support for the statement "sources other than the MRF consider Morgellons to be a variety of different known ailments". This quote is of considerable value in establishing the precise nature of mainstream opinion, and should not remain "buried" in the DP section. Dyanega 23:39, 9 August 2007 (UTC)

I would tend to put that in the Symptoms section, actually. Thatcher131 23:49, 9 August 2007 (UTC)

Updated proposal to revise the intro and history. There has been extensive editing at User:Thatcher131/Sandbox2 and discussion at User talk:Thatcher131/Sandbox2. I propose to replace the current intro, history and CDC section with the sandbox version. I have tried to be responsive to issues and concerns that were brought up. I have tried to edit for a better style (it read like a collection of newspaper articles), and more focused content (on the role of the MRF in promoting the disease). Please respond here rather than the sandbox talk page. Thatcher131 04:29, 10 August 2007 (UTC)

These sections look fine to me, and it's great to see things getting trimmed of bloat. I am a little confused as to why the AJP quote was removed in the recent edits; even though the topic of the paper was not Morgellons, the inclusion of the material discussing medical opinion of Morgellons within a peer-reviewed article in a prominent journal would certainly seem to fit the WP:RS criteria, as well as being directly relevant to the WP article, even if its relevance to the journal article itself seems a little iffy. I'm assuming you read the entire journal article, as I did, and I would have thought that despite the context in which the quote appeared, that it was still entirely appropriate for inclusion here. Dyanega 07:49, 10 August 2007 (UTC)

I share Dyanega's concern. Such RS should be used. -- Fyslee/talk 09:07, 10 August 2007 (UTC)

It's a matter of deciding how and where to use it, and that Wikipedia's style seems to be to state or rephrase things and use citations, rather than direct quotes of large blocks of text. In this case, there is only a single paragraph about Morgellons in the article. It briefly describes the symptoms, indicates that it is largely regarded as DP despite the efforts of the MRF to promote an infectious disease theory, and states that neuroleptics are effective treatments (which are things the article already says). The reference is still footnote 3 and is cited in the references introduction and proposed casuses section of the sandbox and I certainly intend to also cite it in the treatment section. Thatcher131 11:20, 10 August 2007 (UTC)

I agree with Thatcher131 here, the material (and other similar lengthy quotes) should be summarized where appropriate, and referenced. The old article relied far too much on quotes. Herd of Swine 15:12, 10 August 2007 (UTC)

I'm pleased to support the new version, thanks for your work on this. I suggest modifying one phrase just above the CDC sub-section: currently claims over 10,000 registered families. Per WP:AVOID, I wonder if it might be better to omit the word "claims" by using something like: states that their database currently includes over 10,000 registered families. Just a suggestion, not a big deal. Either way, I welcome you to proceed. --Parsifal _Hello 08:22, 10 August 2007 (UTC)

The ticker on the morgellons.org site is around 10,300 today. If no one objects, we can simply say the MRF "has registered over 10,000 families" as a fact, on the grounds that an organization's own web site can be used for citations of non-controversial information about themselves. I suppose "states" has a slightly more neutral connotation than "claims" so that is certainly a fair middle ground. Thatcher131 11:20, 10 August 2007 (UTC)

Either of those options would be fine with me. I've just gotten sensitive to the word "claims" because I've had to remove it so many times from my own writing, now I notice it everywhere...  :) --Parsifal _Hello 17:32, 10 August 2007 (UTC)

I move for using "states", as I don't trust their wording at all. It is an incredible leap of faith to assume that they have fact checked every contact to ensure that it represents a totally different family, without any overlapping. It is more likely 10,636 contacts, representing who-knows-how-many individual families (maybe 3,000?, just to illustrate, as I have no way of knowing). I don't think we can AGF with the MRF as it bears far too many similarities to quack and activist organizations who tend to exaggerate. We are possibly on the fringes of future (*) alternative medicine here (or at least an area that opportunistic alt medders will exploit), and only time will tell if they move in that direction. If so we can then be justified in assuming bad faith on their part, even if they are merely misguided. Information-wise the effect is the same - their information will be tainted and untrustworthy. Right now I'm just wary and we need to be careful that Wikipedia doesn't naively become the bearer of their message without any qualifications. I've studied this kind of thing for years now, and with my rather large experience in these matters I've learned to be very cautious.

(*) "Future" because such groups who meet rejection from mainstream science and medicine tend to reject the warnings and then go their own way, inventing their own facts, ways of thinking, conspiracy theories, anti-medical propaganda, and quack methods of treatment as mentioned above: "One of the authors [Savely] of the two original papers on Morgellons has said the rife machine helps in 30% of cases. [11]" The temptation to avoid losing face is great, and the money to be made is enormous, so human nature being what it is leads to the creation of a new branch of alternative medicine, where the common uniting factors are (a) lack of evidence, (b) conspiracy theories, (c) persecution complexes, and (d) rebellion against the mainstream. -- Fyslee/talk 20:57, 10 August 2007 (UTC)

Regarding Thatcher131's removal of the AJP quote, I support that approach. I know that WP policy tends to frown on lengthy quotes (though I'd like to know the policy reference, so I can look it up). A lengthy quote gives the impression of something that can't possibly be summarized. But that's what WP does everywhere, we summarize things. We just need to maintain neutrality when we do so. EdJohnston 14:38, 10 August 2007 (UTC)

I have no burden for using the actual quote, as long as it is summarized and referenced. That's the important part. -- Fyslee/talk 20:29, 10 August 2007 (UTC)

Here's the page: Wikipedia:Quotations, though the guideline leaves a lot of leeway for local consensus to decide. --Parsifal _Hello 17:32, 10 August 2007 (UTC)

10,636 - no doubt getting a boost because of the CBS11 TV news report. Note that the MRF site no longer has a link to register [12] - it's been gone for a couple of weeks (It was the link directly above "Grant Program", and linked to the OSU site). They did add a simple email "sign up" box. Not sure what's going on there. Herd of Swine 15:20, 10 August 2007 (UTC)

{{edit protected}} Based on the general agreement here and the discussion and agreement at user talk:Thatcher131/Sandbox2, please replace the introduction, history and CDC section with the introduction and history section from user:thatcher131/Sandbox2. Thanks. Thatcher131 20:44, 11 August 2007 (UTC)

done. — Carl (CBM · talk) 22:11, 11 August 2007 (UTC)

Proposal to remove "In the news" and "videos"

The Videos link should be moved into the regular external link section. The "In the news" links should be deleted. Wikipedia is not a news aggregator such as Google News; many significant news stories are already in the citation list. Thatcher131 18:01, 9 August 2007 (UTC)

Actually, have you clicked on the "videos" link? I believe you'll find it entirely inappropriate for inclusion. Basically the only reason it's there is that the owner of the site kept inserting numerous links and folks got tired of re-deleting them all - that one escaped. Dyanega 23:26, 9 August 2007 (UTC)

{{edit protected}} Per my rationale above, the comment from Dyanega, and the lack of objections, please delete the In the news collection of external links and the videos external link. Thanks. Thatcher131 04:31, 10 August 2007 (UTC)

While I agree that that list of external links should be cut, I think it is better to wait for protection to be lifted, since the page was just protected due to edit warring. — Carl (CBM · talk) 17:41, 10 August 2007 (UTC)

That is true, however I started editing the article after the protection and editors from both sides of the dispute have been working reasonably well both on this talk page and on User talk:thatcher131/Sandbox2 where we are discussion revisions to the article. There seems to be no objections to cleaning up the links section. If after a second review you still decline, then we can wait (sigh). Thatcher131 17:46, 10 August 2007 (UTC)

Thatcher is a very experienced administrator who can be trusted in this matter. -- Fyslee/talk 20:59, 10 August 2007 (UTC)

done. — Carl (CBM · talk) 23:35, 10 August 2007 (UTC)

Request for revision of lead to include "name given...."

I request that the emphasized words included in the following phrase be restored to the first sentence of the lead:

• "...a name given by biologist Mary Leitao to a condition ..." (Emphasis Fyslee)

It would then read:

• Morgellons (also called Morgellons disease or Morgellons syndrome) is a name given by biologist Mary Leitao to a condition characterized by a range of cutaneous (skin) symptoms.....

Readers need to immediately be alerted to this fact before reading any further. -- Fyslee/talk 11:35, 12 August 2007 (UTC)

I don't fully understand what this is meant to achieve. I suspect the goal is to somehow imply that the term is not legitimate since it is a recent invention. The MRF has a couple of dozen health professionals associated with it, and I think it would be really inappropriate to suggest that they are all quacks, delusional or out to exploit people. The term was used without any qualifications by Koblenzer, who is definitely not part of the MRF axis. (She does make a convncing case that Morgellons has been around in the literature for at least 75 years without the name.) This could be explored in the history section, but I don't see that personalizing the intro (or any excessive personalization) is wise. Thatcher131 11:57, 12 August 2007 (UTC)

I think you are reading something "between the lines" that is not there nor is intended. I am only asking for this fact to be included in the beginning. People need to know that the term was (in modern times and in this situation) coined by a private, unofficial, and non-medical person. Even the CDC states that they (who are certainly qualified to coin names for new diseases) don't recognize it as a disease yet.

To illustrate my reasoning for why this fact is important, I will try to describe a possible situation (I don't know how realistic it is). If a professional business analyst had the job of studying the accounts of various corporations and then making important decisions based on the information gleaned from those accounts, that person would be extremely upset if - after studying an account and reading the recommendations - was then informed that unlike 100% of all other accounts studied, this one had not been made by a CPA and the recommendations hadn't been made by a CPA. In fact it was made by someone not even educated in financial matters at all. The business analyst would be extremely upset and demand: "Why on earth didn't you let me know this when you gave me this account to read? I should have known this right from the beginning." Readers (especially medically educated readers like myself) should know from the beginning which "glasses" to wear when reading about this condition. It is quite significant that the diagnosis was made by someone not trained or qualified to make medical diagnoses, in contrast to diagnoses and naming conventions for 100% of other illnesses. This is a big exception that violates all kinds of rules, and here in Denmark is illegal. -- Fyslee/talk 12:25, 12 August 2007 (UTC)

I fear the slippery slope. Although this has never been spoken as far as I can tell, I have a sense and a concern, that ultimately the goal is to say that Morgellons is a name made up by crazy people to avoid dealing with the fact that they are crazy. Individually, your suggestion is fine, and I would even add the year

• • Morgellons (also called Morgellons disease or Morgellons syndrome) is a name given in 2002 by biologist Mary Leitao to a condition characterized by a range of cutaneous (skin) symptoms.....

Then there is the request to include the Muchausen's information in the history. To the extent that Mary L. has promoted this herself (I need to check articles where she is quoted to confirm this) it would probably be appropriate to say something like,

• She took her son to see at least eight different doctors, who were unable to find any disease, allergy, or other explanation for the symptoms.(ref) The last doctor she visited suggested by might be manufacturing the symptoms herself.(ref) Convinced that her son was suffering a real, but unknown disease, she started a web site to find and communicate with others suffering the same symptoms. She named the disease Morgellons after a...

While Morgellons does not need to be taken seriously in other articles (for example, the article on Delusional parasitosis should only mention it, not say that it is an important misdiagnosis, and the article on Agrobacterium should not mention it at all unless Citovsky actually publishes a full report on his alleged findings) we do need to take Morgellons seriously in this article and give it a fair shake from both directions. My concern is that the article will gradually devolve into, "Morgellons is a name for DP adopted by crazy people who won't accept the truth." Thatcher131 19:57, 13 August 2007 (UTC)

Thatcher, I concur with your concerns. Also, the information about Mary Leitao does appear, just below the lead in the History section, which is the perfect place for that info because it is historical. It seems most appropriate to omit from the initial introduction anything to bias the information that follows. It's not as if the lead as it is now supports any particular view. The lead already includes two strong sentences showing that there is wide doubt about the existence of the condition:

• A majority of health professionals, including most dermatologists, regard Morgellons as manifestations of other known medical conditions, including delusional parasitosis.
• "Other health professionals don't acknowledge Morgellons disease or are reserving judgment until more is known about the condition."

Adding the information about who named the condition and why seems better placed in the history section, so as to avoid undue weight to that particular point. Ultimately, the name of the condition doesn't matter to the researchers who will perform the science and find the result. People reading this article should be able to see a balanced report of what we know about the topic without getting sidetracked into the story of an individual. --Parsifal _Hello 20:38, 13 August 2007 (UTC)

Thatcher wrote: "I have a sense and a concern, that ultimately the goal is to say that Morgellons is a name made up by crazy people to avoid dealing with the fact that they are crazy", but that is definitely not anyone's "goal" here; the goal is to state what opinion is (both mainstream and alternatives, clearly indicated as such), using reliable sources. Mainstream opinion is that SOME of the people who have diagnosed themselves with Morgellons are DP sufferers in denial (and seeking ANY diagnosis that will permit them to believe their problem is not a matter of psychiatry), and that the OTHER people have a variety of diagnosable, known conditions that - for whatever reason - have not been properly diagnosed, or involving diagnoses that were not accepted by the patients. The actual heart of the controversy is mostly around what the actual percentages are that represent those "some" and those "other", and what those "other" cases are actually suffering from. BOTH sides in the controversy agree that there are people who claim to have Morgellons who are in fact suffering from DP, but they differ considerably in their perception of the relative frequency; one side feels it is the majority, the other feels it is the minority. The fringe viewpoint further includes the explicit belief that some of the non-DP sufferers are victims of something new and unknown (and which involves fibers), which mainstream opinon denies due to lack of evidence or precedent. That's about as close to a "capsule" description as I can come, if I had to summarize the situation for someone entirely unfamiliar with the controversy. I don't see how or why it would be any editor's goal to say anything substantially different from this; in theory, it should be mostly a matter of filling in the details from there. As I've said before, portraying the mainstream view as "Morgellons is a name for DP adopted by crazy people who won't accept the truth" is a straw man; it is a caricature of mainstream opinion, and has no place here. Dyanega 20:49, 13 August 2007 (UTC)

Thatcher, I understand your concern, but I am not worried that it will happen. As long as we abide by Wiki policies and guidelines we will be safe. They are amazingly wisely made! That means we will always be "behind the curve" and stick to reporting already existing opinions from V & RS, presenting all notable opinions and not taking sides through inclusions of editorial biases. We are living people with our own knowledge bases, experiences, professional educations, etc., but we keep our biases to ourselves and the talk page, and out of the article. We must follow NPOV by ensuring that opposing (to our own) POV are included as long as they are properly sourced. Your suggestions sound good. Go for it.

My request for inclusion of Mary's role in the naming right at the beginning, is because of the exceptional (100% against all rules and some laws in certain countries) nature of this case. Readers need to be given the opportunity (those who are accustomed to do so) to put on the right glasses (determined by themselves, not by us) right at the beginning, before reading another word. Otherwise they may start with false expectations and interpretations of what they are reading, simply because we have withheld key information from them until later in the article. It does indeed belong in the History section, but the lead should mention this fact because of its importance, just as the lead should mention very shortly all significant aspects of the article. Since many readers never read any further than the lead, they should go away from that reading with the knowledge that this is a condition named by a non-medical individual, and that the condition is not currently recognized by the medical community. If that ever happens, then we can include that information. As it is now, they begin reading for some time, thinking that this is a recognized condition named (as always) by properly educated MDs and/or researchers, who are the only ones qualified to legally make a diagnosis and then name what they have uncovered through the diagnostic process. Such a reading must be prevented. -- Fyslee/talk 21:29, 13 August 2007 (UTC)

I tend to agree with the idea of mentioning the recent date of the naming in the intro, and I will cautiously support using Mary L.'s name as well for the time being. Dyanega, I know that my explanation of my concern was a caricature, it represents a worst case scenario, if you will, but one that I have seen played out in other articles. I believe in the good intent of editors here and am cautiously optimistic. Thatcher131 23:14, 13 August 2007 (UTC)

{{edit protected}} Per above discussion and agreement, please add the words "in 2002 by biologist Mary Leitao" to the introductory sentence.

Morgellons (also called Morgellons disease or Morgellons syndrome) is a name given in 2002 by biologist Mary Leitao to a condition characterized by a range of cutaneous (skin) symptoms.....

Thanks. Thatcher131 23:19, 13 August 2007 (UTC)

Done. Cheers. --MZMcBride 02:45, 14 August 2007 (UTC)

Fix reference

{{edit protected}} In recent edits, a reference was lost. After the sentence "Delusional parasitosis is one of the most common diagnoses used for Morgellons patients, and it is the primary source of controversy." at the begining of the Delusional parasitosis section replace the reference mark with the text below.

<ref name="ILADS">[http://www.ilads.org/morgellons.html Delusions of Parasitosis versus Morgellons Disease: Are They One and the Same?] Ginger Savely, RN, FNP-C and Mary Leitao, Director of the Morgellons Foundation, ADVANCE for Nurse Practitioners,Vol. 13, Issue 5, Page 16 (5/1/2005)</ref>

This is a technical change only. Thanks. Thatcher131 23:32, 13 August 2007 (UTC)

Done. Cheers. --MZMcBride 02:45, 14 August 2007 (UTC)

Edit requests

{{edit protected}} We have been working on a sandbox version at User:Thatcher131/Sandbox2. Per the discussion at User talk:Thatcher131/Sandbox2 please change the opening sentence to read

Morgellons (also called Morgellons disease or Morgellons syndrome) is a name given to a condition characterized by a range of cutaneous (skin) symptoms. Sufferers report crawling, biting, and stinging sensations; finding fibers on or under the skin; and persistent skin lesions (e.g. rashes or sores).

Also, please change the last two sentences of the "History" section to read

The first scientific article to discuss Morgellons was co-authored by Leitao and R. B. Stricker, a member of the MRF's Medical Advisory Board and was published in July, 2006..

The MRF has since received reports of Morgellons from all 50 US states and 15 nations, including Canada, the UK, Australia, and the Netherlands, and states that they have been contacted by over 10,000 families.

The reference change fixes an omission of two authors names on the study; the change in description of the MRF's registry is consensus at the sandbox talk page. Thanks. Thatcher131 03:08, 15 August 2007 (UTC)

I've disabled the editprotected request. When the new version is ready, feel free to re-enable it. Cheers. --MZMcBride 03:25, 15 August 2007 (UTC)

Symptoms and Causes ready to go live?

How do you feel about moving the Symptoms and Proposed causes sections from User:Thatcher131/Sandbox2 to the live article? I have tried to respond to all concerns. Thatcher131 02:41, 15 August 2007 (UTC)

I support moving the current sandbox version to the article page. --Parsifal _Hello 02:48, 15 August 2007 (UTC)

I agree. Herd of Swine 04:40, 15 August 2007 (UTC)

Sorry to be late on this but I have a few comments.

• Disturbing sensations of insects crawling, stinging or biting on or under the skin The cite for this text and also in Unexplained Dermopathy at the CDC does not mention insects at all. In Morgellons disease: Managing a mysterious skin condition the Mayo Clinic states, "often compared to insects moving, stinging or biting." This is a small distinction but since the symptom is similar but slightly different to DP I believe the article should be careful about being accurate to the cite.

• Fiber-like filaments, granules or crystals that appear on or under the skin or that can be extracted from lesions The cite and other reports of fibers seen by researchers associated with the MRF state, "fiber size is near microscopic, and good clinical visualization requires 10-30 X." This is an important detail that should be stated considering other articles allege that inadequate examinations lead to an inaccurate diagnosis of DP.

• Chronic fatigue is not accurate to the cite which states "Most patients meet the Fukuda Criteria for Chronic Fatigue Syndrome." Chronic Fatigue Syndrome is much more than Chronic fatigue.

• Many Morgellons patients have symptoms that are also consistent with Chronic Fatigue Syndrome, depression, obsessive-compulsive disorder, and attention deficit disorder.[20] The cite states this text is based on 2006 information from MRF[13] The newest text from the MRF states,"Emotional effects are present in most patients. Character typically includes loss or limitation of boundary control (as in bipolar illness) and intermittent obsessional state. Degree varies greatly from virtually absent to seriously life altering." I believe it would be better if the newer text is reworked and used, or if the older text used, it cite the primary source.Ward20 06:28, 15 August 2007 (UTC)

• The CDC does not have a definition of Morgellons, the purpose of the RFQ is to develop a set of symptoms and diagnostic criteria that can distinguish Morgellons from other conditions (regardless of what the "unexplained dermopathy" page says. I believe the 4 best sources for Morgellons in the medical literature are

1. Savely, Leitao and Stricker, "The mystery of Morgellons disease." Am J Clin Dermatol 2006 7:1-5.
2. Savely and Leitao, " Skin lesions and crawling sensations: disease or delusion? Adv Nurse Pract. 2005 May;13(5):16-7.
3. Koblenzer, The challenge of Morgellons disease. J Am Acad Dermatol 2006 55:920-922
4. Paquette, Morgellons: Disease or delusions? Perspect Pysch Care 2007. 43:67-68.

Two of these were written by the MRF and two are independent; 3 out of the 4 specifically mention sensations of insects. These sources also mention chronic fatigue, but do not mention the "Fukuda criteria." This is something developed by the MRF that has not yet been published in any form. The fact that a particular type of observation is required ("10-30X magnification) is also not published. Likewise, the editorial by Paquette ("Disease or delusions") describes certain symptoms, the MRF's "revisions" to these symptoms are only on their web site. Publication in a journal implies at least some level of editorial oversight, although how much is debateable. For instance, the title of Savely and Leitao's paper in ADVANCE for nursing was changed from "Morgellons" in the draft version posted on ILADS to "Skin lesions and crawling sensations: disease or delusion?" in the final published version (PMID 15898309). Because of the very limited nature of information on Morgellons it is important to rely as little as possible on information published only by the MRF, which has a strong conflict of interest in the matter. For example, I have removed the Haverty findings as she is (1) not a recognized fiber expert, (2) is only published on the MRF web site; I have (or will) replace the citations of published work which is posted on the Morgellons web site with citations to the original source.

I will be quite happy to mention these 4 sources for the symptoms in place of the MRF, but I do not intend to quote the MRF directly when it is the only source, especially when it disagrees with published descriptions. Thatcher131 07:08, 15 August 2007 (UTC)

With the cites you are using rather than the MRF case definition then that addresses most of my comments. I believed the 10-30x magnification was published elsewhere than the MRF case definition, but only found Wymore used 60x to view fibers under the skin[14], 30x was mentioned for viewing fibers in patient's animals[15] and Dr. Rhonda Casey, examined many patients skin via a dermatoscope. The white ones, she says, are hard to see. A dermatologist who either didn't look at all, or didn't use a dermatoscope, might not see them under the skin. [16] I still believe there is a conflict between listing Chronic fatigue as a symptom and then saying afterward, "Many Morgellons patients have symptoms that are also consistent with Chronic Fatigue Syndrome." People use the two terms interchangeably but they are medically very different illnesses. The two MRF papers talk about "debilitating" fatigue along with other debilitating symptoms which are included in the diagnosis of Chronic Fatigue Syndrome. Perhaps Chronic fatigue should be replaced by Debilitating fatigue? Ward20 09:52, 15 August 2007 (UTC)

Debilitating fatigue is a good choice for the bulleted list. The problem with stating a magnification for the fibers is that it seems to be a common experience among most Morgellons patients that they claim be able to see and pluck out fibers with the naked eye; Wymore's claim is that under 60x magnification, fibers can be seen underneath unbroken skin that is distant from any lesions. That seems to me to require a higher standard of source. (And of course, it has been pointed out at User talk:Thatcher131/Sandbox2 that some of the claims about the fibers are mutually contradictory.) I would love for their to be a definitive statement in a peer-reviewed study as opposed to a letter to the editor. Thatcher131 10:56, 15 August 2007 (UTC)

Actually, all the points you make about fibers are covered in the section User:Thatcher131/Sandbox2#Theories_about_the_fibers. Thatcher131 11:09, 15 August 2007 (UTC)

{{edit protected}} Per consensus here and at user talk:Thatcher131/Sandbox2, please replace the entire contents of this article (except for the categories, of course) with the contents of User:Thatcher131/Sandbox2 except for the treatment section which is unfinished. The intro and history contain only typos and cosemetic fixes from the present version; we have reached consensus on the symptoms and theories sections. Thanks. Thatcher131 12:30, 15 August 2007 (UTC)

If the dispute is settled wouldn't it be better to request the page unprotection, so that you (all) take care of that yourselve? - Nabla 02:19, 16 August 2007 (UTC)

Reply to admin: I think protection has helped to force editors to work together. We still have one contentious section about treatments to work through. Thatcher131 16:43, 16 August 2007 (UTC)

I agree strongly; if protection is lifted from this article, I suspect that it will VERY quickly revert back to edit-warring. My inclination, in fact, would be to keep protection in place until and unless new information becomes available that justifies an update. Dyanega 18:18, 16 August 2007 (UTC)

OK. Done. I hope I got it right. Please check. - Nabla 17:58, 16 August 2007 (UTC)

Proposal to remove the disputed and current event tags

Since we have reached a significant amount of consensus on the article content, I propose removing the disputed tag. Also, since the article has been re-written to de-emphasize the use of newspaper articles as sources and is written more like other disease articles, I propose removing the current event tag. Comments? Thatcher131 12:33, 15 August 2007 (UTC)

As long as there aren't any particularly important "current events" developing on the subject right now, fine by me. John Carter 14:45, 15 August 2007 (UTC)

I think the current event tag was put there during the announcement of the CDC investigation. That spurred some media interest (still ongoing), but I don't feel it now warrants the tag. I also concur with removing disputed, at least until somebody disputes something. Herd of Swine 16:10, 15 August 2007 (UTC)

I request the disputed tag stay on for a while longer. I believe there are still factual errors that need to be corrected and wording reworked to achieve NPOV on the article. I apologize for not being around to input the last few weeks when it was wise to bring a third party in to mediate.

Here is one example of an error: The opinion article authored by members of the MRF and published in American Journal of Clinical Dermatology is indeed peer reviewed.[17]

I would like to submit wording similar to this in the treatment section vs what is there now that is similar because this source is a stronger peer reviewed article. The article hypothesizes, "Morgellons disease may be linked to an undefined infectious process", and states that antibiotics are effective treatments. "Many patients with Morgellons disease have positive Western blots for Borrelia burgdorferi, the causative agent of Lyme disease." and, "When these patients are treated with antibacterials for their Lyme disease, remission of Morgellons symptoms is seen in most (Patients)."[20]Ward20 16:26, 15 August 2007 (UTC)

I added the current event tag because of frequent confusing interpretations of the announcement of the CDC investigation. I think we're fine, now, although I don't think {{disputed}} should be removed while the article is protected. If it's not disputed, it wouldn't need protection. (This was written before I say the previous error (um, reported error) above, but that makes it more clear.) — Arthur Rubin | (talk) 16:29, 15 August 2007 (UTC)

I'm OK with removing the Disputed and Current Events tags. It seems reasonable to drop the 'disputed' when a carefully-vetted and widely-studied draft is available, even though we still have the formality that article protection is still in place. I don't agree with Ward20's proposed changes, above, and I'm content with the current wording of the Treatment section. EdJohnston 16:42, 15 August 2007 (UTC)

The treatment section of the sandbox draft is not done yet. Thatcher131 16:50, 15 August 2007 (UTC)

Comment on Ward20's sugestion that the Leitao/Saverly/Stricker article [18] be given more weigh. Peer review has no bearing on the validity of the statements made in an opinion article. If Savely says that the patients tested positive for Lyme, then that's her claim, which seems quite reasonable, and there is no way that would not pass peer review. Those claims are based on an earlier article by Savely and Leitao [19] from 2004, and many more articles of equal or greater authority have been published since then, with opposing points of view. (and of course Leitao/Saverly & Stricker are founders and board members of the MRF) Herd of Swine 18:08, 15 August 2007 (UTC)

Sigh, please don't remove the disputed tag just yet. I would like to use and cite peer reviewed material published in a medical journal in 2006 to replace website material and newspaper material saying something very similar. I also request this statement be changed. "To date, none of these studies has been published in the peer-reviewed medical literature".Ward20 18:58, 15 August 2007 (UTC)

• But the findings have not been published. There are vast differences between reviews, letters, case reports, and full research studies. When Dr. Harvey writes that Morgellons patients have elevated inflammatory markers and serological markers for 3 unusual strains of bacteria, I believe him as I would believe a doctor telling me about his clinical experience over coffee. I do not think he would deliberately lie, but the statement does not have the weight of a research article. To state definitively that Morgellons patients have elevated laboratory findings, one would have to study enough patients to have a statistically significant result. One would have to show the results from control groups, such as healthy individuals, and patients with other skin lesion-type diseases. (If patients with psoriasis also had the same elevated blood work, it could indicate that the blood markers are a result from widespread inflammation and not related to the cause of the inflammation.) And one would have to have a non-biased menthod of assessing the outcome, such as by a different doctor who does not know how the patients were treated.
• Case reports are less definitive than research studies, but are still more powerful than letters. You may not have access to these journals, but if you do you should compare the level of detail reported here to the letters and reviews you wish to cite.

• Mercan S, et al. Atypical antipsychotic drugs in the treatment of delusional parasitosis. Int J Psychiatry Med. 2007;37(1):29-37. PMID 17645196
• Meehan et al. Successful Treatment of Delusions of Parasitosis With Olanzapine. Arch Dermatol. 2006;142:352-355. PMID 16549712

• The case reports give detailed treatment records, blood values before and after, evaluation of the symptoms, and detailed followup. None of these things is present in any published paper by a Morgellons researcher. That does not mean they have no value. Certainly they have value regarding symptoms and how the MRF views the condition. But to say that Stricker's or Harvey's statements about lyme and antibiotics or fibers should carry the same weight as a double-blind clinical trial or even a case report is to ignore how scientific publishing operates. Claims have been made but "results of studies" have not been published. Thatcher131 19:23, 15 August 2007 (UTC)

Ward20, you might want to try for a smidge more consistency in your treatment of letters. Thatcher131 19:43, 15 August 2007 (UTC)

Thank you for pointing out the article vs study. I think I had a brain freeze, my request to change, "To date, none of these studies has been published in the peer-reviewed medical literature" was completely wrong.

I did not delete the text in the Morgellons article because it was a letter.[20][21] I deleted the text because it called the letter a study and the content of the text could not be verified by the content of the letter. The statements, "Morgellons has been successfully treated with the antipsychotic medication Pimozide" and "though one study published in the American Academy of Dermatology has demonstrated that patients can be cured using Pimozide, reinforcing the contention that the condition is synonymous with delusional parasitosis, which is treated with the same drug", were just not supported by the cited letter. When the article text was changed to accurately represent the content in the letter[22] "though one letter published in the American Academy of Dermatology has suggested that patients can be cured using Pimozide, as it is the same drug used to treat delusional parasitosis", it was fine.Ward20 00:31, 16 August 2007 (UTC)

That raising an interesting point. If Morgellons is exactly the same as DP, then you could just say that is is treated the same as DP, and hence could cite countless sources including double blind clinical studies. But according to several sources, the difference in treatment of Morgellons patients is in both handling and using the patients strong belief that they have Morgellons. This involves establishing a rapport with the patient, partly by performing extensive physical tests and examining the fibers, and in part by using the term "Morgellons" to refer to the individual's condition. See Morgellons disease: A rapport-enhancing term for delusions of parasitosis and Psychiatric Arsenal Has Weapons Against Morgellons Disease.

The question is if some description of rapport building has a place in the treatment section. It might be argued not, as it seems to presuppose Morgellons is essentially DP, but really this is no different from the other "treatments", which all presuppose some particular cause (like Borreliosis). I feel the rapport building should have a mention. Herd of Swine 00:55, 16 August 2007 (UTC)

Naming rapport-building as a treatment is a way of implying that the condition is not a disease. One of the two references you listed is a letter from physicians who state they do not believe it's a disease, though they do not have evidence for that, and that they carefully manipulate their patients by the use of that term. That's not a treatment protocol, it's disingenuous. The other reference you listed does not even mention the word "rapport", but it does include a quote from one of the psych docs that clearly states they don't know what it is:" "You know, it is a difficult topic because we have no absolute proof of what is going on."

Rapport-building should not be listed in the treatment section because it's not a treatment, it's just a way for a doctor to communicate with a patient and even as that, does not have strong references. --Parsifal _Hello 01:15, 16 August 2007 (UTC)

But treating with antibiotics implies the condition is caused by bacteria. How is this different? It's a treatment that doctors have used. Some might find it insulting, or even simply bad medicine, but why is that a reason to exclude it? Herd of Swine 02:02, 16 August 2007 (UTC)

If treating with antibiotics is well-sourced, it should be included, whatever it implies. And if it is not supported by references, it should not be included. On the other hand, "Rapport-building" is not a form of treatment of anything, it's just a way for a doc to relate to the patient. And, it's not supported by reliable sources anyway. If you have a reliable source that states "rapport-building is an effective treatment for Morgellons", please show us that reference. The letter referenced above just says that they use rapport-building to avoid scaring away their patients. That's not a treatment, and it's not a reference about a treatment, so how could it possibly be included? --Parsifal _Hello 07:38, 16 August 2007 (UTC)

There are no sources that say antibiotics are an effective treatment for Morgellons. Their inclusion in the article suggests that Morgellons is caused by bacteria. I'm not trying to be difficult here, but there is a need for balance. The article "rapport enhancing term" seems an important turning point in Morgellons history. I'll get more refs later. Herd of Swine 14:30, 16 August 2007 (UTC)

Since we're being picky about letters vs articles, "rapport" is a letter, but I believe it is a useful inclusion. There seems to be two modes of treatment; (1) as DP (with the caveat that organic causes must be excluded first), in which case antipsychotics and topicals for symptomatic relief seems to be the main treatment, and there is indeed lots of literature on this; or (2) as a novel entity (the MRF view) for which the only treatments that are close to being reliable are antibiotics, which are mentioned in several of the MRF references. Thatcher131 16:50, 16 August 2007 (UTC)

Rapport may not be a treatment in itself, but as that letter says it is away of encouraging patients to accept treatment- for what the doctor in that case considers to be DP. A similar method of treatment is used for M.E. suffers to accept help for that which they are usually previously diagnosed (whether you think it's a different illness or not, the treatments are identical to those for depression.)

We could simply say that one doctor who believes morgellons is at least in part DP, encourages Morgellons sufferers to accept treatment for what he considers to be Morgellons, in this way. (or something)Merkinsmum 20:41, 16 August 2007 (UTC)

Trying to get familiar with the present edit I found what I believe is small error. "Raphael Stricker, President of the International Lyme and Associated Diseases Society (ILADS)[31] and a member of the MRF Medical Advisory Board, has written a review article on Morgellons". Review should be Current opinion. The American Journal of Clinical Dermatology states, "Current opinion articles providing an overview of contentious or emerging areas and key regulatory and ethical issues" Ward20 08:41, 17 August 2007 (UTC)

I think just plain "Article" is sufficient as we don't need to get into a discussion of what a "current opinion" article means as opposed to other kinds of articles--this is not an article on medical journalism. Harvey was already cited and I removed the newspaper article because I couldn't figure out what in the article was being referred to in the edit. Also, it is the normal style when referring to scientific publications to say "The authors reported..." rather than "The article said..." Thatcher131 02:04, 26 August 2007 (UTC)

treatment

I request the immediate removal of, "One of the authors of the two original papers on Morgellons has said the rife machine helps in 30% of cases. [7]"[23] This appears to be a subtle attempt to discredit a living person by poorly sourced contentious material. WP:LIVING

This material is sourced from a newspaper blog and this person was asked the question: Did doctors ever think of using the Advanced Rife wellness Technology (bio-Active Frequency). I know FDA does not approve of this machine but it does work.

Answer: Yes, Rife machines are sometimes used and in approximately 30 percent of cases it helps.

The person never said they used it, approved of it, and the answer indicated response was no better than the Placebo effect[24] so there is no reason to include what is in the article except to possibly try to discredit the person by a contentious association with an unapproved treatment machine.

Definition of Placebo response Placebo response: A positive medical response to taking a placebo, a sham medication as if it were an active medication. Up to one-third of patients given a placebo may respond with a reduction in symptoms, depending on the condition. This phenomena is often laid to patients believing their symptoms have improved when in fact they have not. Evidence is beginning to emerge that actual physiological changes can result from believing that one is receiving medical treatment. Thanks Ward20 07:06, 16 August 2007 (UTC)Ward20 07:40, 16 August 2007 (UTC)

That's just a rough draft in the sandbox. I don't intend to mention the rife machine at all for the reason you suggest. Thatcher131 16:46, 16 August 2007 (UTC)

Interestingly, UV light is an approved treatment for psoriasis (I forget the mechanism). It is not impossible that some form of intensive light therapy might also relieve the symptoms of other skin conditions. Of course, such things have not been properly described so I agree with leaving it out for the reason you suggest. Thatcher131 16:52, 16 August 2007 (UTC)

The "person" said it helps in 30% of cases [25] was Ginger Savely, primary author of the seminal papers on Morgellons. I felt it's interesting that she said this. Perhaps the antibiotics also work as a placebo effect, as has been suggested by several doctors, example Medical community skeptical: Doctor attributes Morgellons' 'cures' to the placebo effect "When told of Dr. Bill Harvey’s successful treatment with antibiotics of Morgellons’ patients in Houston, Dr. Peter Lynch of the University of California, Davis said the “cures” are easily explained by the placebo effect.".

Admittedly though, the Rife Machine reference is an isolated mention, so perhaps should not be given coverage in the article. There are, however, a huge range of alternative treatments advertised specifically for Morgellons, of which Rife (and similar "zappers") is one. This wide range of self-treatment seems to be a significant factor which deserves a mention. Herd of Swine 17:04, 16 August 2007 (UTC)

I am sure many Morgellons sufferers are using UV light and a whole lot more. Self treatment is very common in a serious illness where people perceive (note I said perceive to cover the bases) conventional medical treatment has little to offer. Early AIDS is a good example, my favorite is the story of Augusto and Michaela Odone. I think a reliable source would have to show a compellingly different or proven effective treatment vs other self treatment of illness in order to include it much (if any) space in the Morgellons article.Ward20 19:49, 16 August 2007 (UTC)

The question is: how should the self-treatment be addressed in the article? Dr Greg Smith, former Medical Director of the MRF says: [26] Many [Morgellons sufferers] have lost faith in our medical care system and have turned to alternative medical care or self treatment. Descriptions of their self treatments are frightening. The treatments have included not just topical application but oral ingestion of insect sprays! Some have been victimized by unscrupulous alternative health care providers. - It's a little frustrating that this is such a huge part of the story, yet little has been written about it. It's a fairly neutral aspect - you could say they are driven to self treatment by the failings of the medical system, of by their rejection of the medical system, either way it's happening. —The preceding unsigned comment was added by Herd of Swine (talk • contribs). 20:15, 16 August 2007 (UTC)

I am publishing this as a talking point. If you don't agree with the details please politely state why with appropriate citations.

I have been trying to write for a treatment section and the following are problems I am running into. I can find citations stating the cohort of Morgellons parents treated with antibiotics, anti-parasitic, antifungal drugs, herbal supplements and even light therapy as if they had an infectious disease is around 280.[27][28][29]. The two practitioners treating these patients have published specific findings and arguments[30] "Morgellons disease" and [31] "The Mystery of Morgellons Disease" why they believe Morgellons is not delusional parasitosis. The cited articles state efficacy qualitatively, "resolve most symptoms" and "symptoms subside", without case histories, or study results.

Sources for a proposed treatment section treating Morgellons as Delusional parasitosis have worse problems in my opinion. "Cognitive Behavior Therapy, a Cure for Morgellons disease?"[32] is WP:SPS, and no Morgellons patients are claimed to have been treated with Cognitive Behavior Therapy in the article references, nor by the author. "Pimozide at Least as Safe and Perhaps More Effective Than Olanzapine for Treatment of Morgellons Disease"[33], sounds like a good title until you read the text of the letter. The letter discusses that 3 delusional parasitosis patients have been successfully treated with the antipsychotic medication Olanzapine, and then claims an alternative drug Pimozide, to be at least as safe and perhaps more effective for treatment of Morgellons disease, which the author considered to be a form of delusional parasitosis. But, no Morgellons patients are claimed to have been treated in the article cited, nor any by the author. "OCD Patients May Seek Help From Dermatologists"[34], infers possible Morgellons treatment, "Self-diagnosed Morgellons disease is a relatively new phenomenon in the dermatologist's office, she said, fueled by media reports and the Internet. People who believe they have this disorder commonly report crawling, stinging, and biting sensations. Some claim that fibers emerge from intact skin (Psychiatric News, December 15, 2006). While all symptoms demand a careful workup, Kestenbaum said, "patients with such complaints whom I have seen appeared to have a delusional parasitosis." No numbers nor results of treatment of Morgellons patients by the author are discussed. "Psychiatric Arsenal Has Weapons Against Morgellons Disease"[35], is better. Four Dermatologists respond to the hypothetical question, "What would you do to help a patient who tells you he or she has Morgellons disease?" Three of the last four dermatologists respond in a hypothetical way and did not say that they had seen Morgellons patients, and that the symptoms could suggest to them delusional parasitosis and they would treat accordingly. The first dermatologist discussed in the article, Caroline Koblenzer is different, she states she treated, "several dozen Morgellons patients during the past six months" and "we do have medications [that can help]." The efficacy is qualitative, without case histories, or study results. "Morgellons disease?"[36]talks about, "three individuals who felt that they had “Morgellons disease.” After thorough evaluation and examination, all three individuals were diagnosed with delusions of parasitosis. They were appropriately counseled. There are some discussion of case histories and why the doctors diagnosed them with delusions of parasitosis, but little treatment detail, and no discussion or treatment effectiveness. "Morgellons disease: A rapport-enhancing term for delusions of parasitosis",[37] details one patient who was anxious to see a doctor that had heard of Morgellons disease. "After taking cultures and a biopsy, I reassured her that there were no bacterial, fungal, or parasitic infections. ...She is currently on the anti-psychotic risperidone, followed by both dermatology and psychiatry.", there is no mention of treatment effectiveness. A news article, "Nasty disease -- or is it delusion?",[38] describes a fairly good case history of one patient. "Almost every doctor he saw diagnosed him with delusional parasitosis....Miller agreed to take anti-psychotic medication for a few months, but it didn't help,...To prove that I wasn't crazy, I had to go into a psychological program. A psychiatrist and several therapists all agreed that I wasn't crazy, that I did have a physical disease,...he's been taking the antibiotics and anti-parasitic and anti-fungal drugs, and he said his health has improved."

A Morgellons article treatment section about specific drug therapies with sources talking about 280 patients on one side, and several dozen on the other side with sketchy results seems extremely preliminary. Ward20 23:11, 25 August 2007 (UTC)

Please don't chop up my discussion, instead respond below with comments or quotes.Ward20 23:21, 25 August 2007 (UTC)

Ward, I suspect you will not find any reports of treatment of "Morgellons" because most physicians do not (at this time) accept Morgellons as a diagnosis that is distinct from DP. They would argue that patients who present with self-identified Morgellons actually have DP and would treat them accordingly. So I think what we should say is that the conventional treatment for Morgellons is to rule out organic causes (I h ave refs for this) and then to treat it as if it was DP. Because that's what actually happens in most doctors' offices. There is also anecdotal evidence for antibiotics (nothing proven) and some pretty nasty home treatments. Thatcher131 23:44, 25 August 2007 (UTC)

CDC Updates

The CDC recently (Aug 17) updated their Unexplained Dermopathy (aka "Morgellons")], which might merit some changes or additions. They seem to be somewhat more equivocal, like: "CDC has received an increased number of calls regarding this condition; however, this may represent an increase in the awareness of this condition rather than an actual increase in the number of persons with this condition.". Herd of Swine 04:54, 18 August 2007 (UTC)

Your comment reads like you're wearing your "this is not a disease" goggles.

The added material on the CDC site shows that they have not changed any of the words they used before, and the statement you referred to above was a reply to a specific question in their FAQ section. Here is the complete text:

"Does CDC have evidence that this is a new condition?

We do not know the cause of this condition or whether this condition is new. CDC has received an increased number of inquires from persons who report similar symptoms; therefore, we are conducting an investigation to learn more about this unexplained dermopathy.

"Does CDC have evidence that this condition is increasing?

CDC has received an increased number of calls regarding this condition; however, this may represent an increase in the awareness of this condition rather than an actual increase in the number of persons with this condition."

The above text is in addition to their prior text, not in place of it.

Also, they have added a second page of information where now the previously difficult to find material is now formatted for the public, at this link: CDC investigation, where the following text appears in the summary at the top of the page:

"The suffering that many people associate with this condition is best addressed by a careful, objective scientific analysis. Considering the complexity of this condition, we believe that a measured and thorough approach offers the best chance for finding useful answers."

I don't know if the article needs to be changed to include any of this. But when you tell us about changes in what the CDC says, it would be better without the POV filter of comments like " They seem to be somewhat more equivocal," when the fact is, they have not changed anything at all about their statement other than to provide additional information about progress towards the start of the investigation. --Parsifal _Hello 05:37, 18 August 2007 (UTC)

I was just letting people know about the changes to their site, it was one page before, they have added an intro page, some extra material to the original page, and a page on the investigation, mostly covering Kaiser.

I did not mean to imply they had some radical change of position, and I do not think they have. It seemed to me that the additional material was interesting in that they were obviously attempting to clarify their position to indicate there is uncertainty, where before there might have been some implied certainty - in this case that Morgellons was spreading. Hence, equivocal - open to more than one interpretation. These things are interesting should we ever attempt to accurately characterize in the article WHY the CDC is investigating in the way it is.

Herd of Swine 06:03, 18 August 2007 (UTC)

Think about the situation with Austism/Aspergers, where the number of diagnosed patients has increased dramatically and there is some dispute over how much this is due to an expanded definition or increased awareness and how much is due to an actual increase in disease. I think the CDC is noting that a larger number of self-identified patients probably does not mean an absolute increase in illness but rather other factors. I'm don't see any change needed in the wording, though. Thatcher131 23:22, 25 August 2007 (UTC)

page protection for ever?:)

Hi I was wondering, when is the page going to be editable normally again?Merkinsmum 19:45, 25 August 2007 (UTC)

Actually, the protection expired this morning. Everyone please play nice, now. Thatcher131 23:18, 25 August 2007 (UTC)

Treatment section

I have started the treatment section along the format I have been thinking about. Every fact tag I added I believe can be replaced by a citation or news story that I have copied and printed out, but I don't have time to do it at this instant. I will get to it soon. Some of these will be known to you so add them if you want. Thatcher131 23:40, 25 August 2007 (UTC)

It doesn't appear that any of Ward's comments above were addressed. Even Dr. Stone, the president of the Derm assoc. said that anti psychotics don't always work. Where are the controlled studies which show that they are effective treatment for Morgellons? Pez1103 23:59, 25 August 2007 (UTC)

There aren't any, of course, because the majority of doctors believe that Morgellons is another name for DP. There are controlled studies on antipsychotics for DP, which I will be happy to cite. As I have written it, it makes clear that current medical consensus is to treat for DP. Caveats such as side effects, or that it doesn't always work, may of course be added. Thatcher131 00:35, 26 August 2007 (UTC)

The article still does not address the fact that anti psychotics are not always an effective treatment for Morgellons, as Dr. Stone stated. It also does not include the article that Ward cites above, "Nasty disease -- or is it delusion?",[39] describes a fairly good case history of one patient. "Almost every doctor he saw diagnosed him with delusional parasitosis....Miller agreed to take anti-psychotic medication for a few months, but it didn't help,...To prove that I wasn't crazy, I had to go into a psychological program. A psychiatrist and several therapists all agreed that I wasn't crazy, that I did have a physical disease,...he's been taking the antibiotics and anti-parasitic and anti-fungal drugs, and he said his health has improved." Pez1103 00:39, 26 August 2007 (UTC)

I'd rather not describe individual case stories in the article. I could for example cite the poor guy who died (I have his article but not with me) who believed he had Morgellons and was giving himself all kinds of dangerous self-treatments but also was a heroin user (drug abusers frequently suffer from formication). It seems reasonable to say that antipsychotics do not work for all patients, and to say that some patients report improvement on antibiotics and antifungals. Thatcher131 00:45, 26 August 2007 (UTC)

Antipsychotics don't always work for schizophrenia either, this does not imply anything other than the drugs don't always work. A broad based approach is often used for psychosis. Herd of Swine 00:46, 26 August 2007 (UTC)

Is the line "However, pimozide may have side-effects in some people." really needed? All antipsychotics (and actually, nearly all drugs) have sometime nasty side effects - if this is to remain it needs some context. I'd delete it. Herd of Swine 01:04, 26 August 2007 (UTC)

Well, there is the letter about one doctor preferring pimozide because of it;s antipruritic effect, and there is a cite that says Olanzapine is better than pimozide because it has fewer caridac side effects and does not require as much routine monitoring, so I thought that would make an interesting counterpoint. I'll flesh it out. Thatcher131 01:41, 26 August 2007 (UTC)

Bacterial hypothesis

Corrected that more than one person wrote this article and the article asserted things not Stricker for better NPOV. Added dates to establish time line. Took out however which may inject some expectation while it is not needed. Added that Dr harvey has reported these findings. I will correct the references when I have time. On the topic of references. a lot of references are available to link to at legitimate medical information servers. Links to PubMed only give abstracts. Is there any reason not to link to the full text if it is available from a legitimate source?Ward20 02:12, 26 August 2007 (UTC)

If it's really a legitimate source and not a copyright violation, then leave the cite and the PMID as they are but add a link to the full text. (You need to keep the full cite in case the text link someday goes dead.) Thatcher131 02:35, 26 August 2007 (UTC)

Ward20 was referring to this [40], which is actually the Journal of the American Academy of Dermatology's web site, which is certainly the preferred link here. There are a few full-text articles on there [41], [42], and this note about the Harvey letter:[43]. Herd of Swine 04:00, 26 August 2007 (UTC)

treatment section

I still have concerns about this section. It seems to imply that antipsychotics are effective treatment for Morgellons, but this has never been shown scientifically. It's just based on the assumption that Morgellons and DP are the same, which has never been proven. If you read the CDC and MRF definition of Morgellons -- the belief that one is infested with parasites is never even mentioned as a symptom. I appreciate Thatcher's suggestion that we add the statement that antipsychotics do not work for all patients, and that some patients report improvement on antibiotics and antifungals. I also have concerns about this language: "However, it is also characteristic that sufferers will reject the diagnosis of delusional parasitosis by medical professionals, and very few are willing to be treated, despite demonstrable efficacy of treatment. It has been suggested that the term Morgellons should be adopted by dermatologists to enhance their rapport with their patients, allowing them to overcome this resistence" I believe that the following would be more NPOV: "However, since Morgellons patients do not believe that they have DP, very few are willing to be treated with antipsychotics. It has been suggested by a few dermatologists to enhance their rapport with their patients that they tell patients that they are treating them for Morgellons, when in fact, they are treating them for DP." Pez1103 09:41, 26 August 2007 (UTC)