Jul 012007
 

Here’s an interesting article that illustrates some of what I was discussing in the previous post.

http://www.hometownannapolis.com/cgi-bin/read/2007/07_01-25/COL

The problem is, McSweegan makes no mention of underlying physical conditions, which again sweeps the whole situation into the false dichotomy of “delusion or disease”.

A patient is quoted as saying “I was feeling things moving under my skin”, and then the gist of the article is that they were imagining it. When actually formication is a real physical symptom triggered by various physical circumstances from Meth to Menopause.

So while McSweegan characterizes the circumstances of Morgellons fairly well, he’s not telling the whole story, and he is reinforcing a polarization that inhibits communication.

  24 Responses to “Pathogens & People”

  1. I hope the NMO puts Dr. McSweegan on their website. Maybe his animation will be as good as mine. ;)

  2. Seems like he’s already had the treatment:

    http://www.actionlyme.org/McSweegan.htm

  3. “The charity later sued McSweegan for slander, but lost. McSweegan won his counter-suit against them.” http://www.cbsnews.com/stories/2003/06/26/eveningnews/main560528.shtml

    Yikes. The webpage was hard to read…. and I wasn’t sure what Rosie O’Donnell has to do with chronic lyme.

    McSweegan doesn’t seem to be a popular guy with this crowd.

  4. Michael–

    I applaud you for exploring this somewhat subtle point – i.e. clearly those with Morgellons are not “lying” about having symptoms or abnormal appearing skin.

    Here’s how I put it together — and there are two parts:

    1) I think Morgellons (and its many allied conditions) begin with a heightened sensitivity to normal sensory input, a pathologic sensitivity. Every normal person experiences innumerable little twitches and glitches that pass without notice because of a neurological buffer between sensation and consciousness. I believe that this buffer/filter becomes porous in those with Morgellons. The KEY point is that these patients REALLY do experience these sensations. Its not made up.

    2) The next step is the creation of an inappropriate cognitive linkage between these sensations and the belief that some external force is causing them. This next step/linkage does not always occur, and when it doesn’t, the manifestations are diagnoses such as “Chronic Pain Syndrome,” “hypochondriasis” and “fibromyalgia.” Once this cognitive link to a perception of infestation has been established, it becomes hardwired from a neurologic standpoint. Its this aspect that has the flavor of psychosis. I had a close acquaintance who developed schizophrenia, and once spent several hours trying to point out the flaws in the logic that lead him to believe that he could control the weather.

    Why so many patients from different cultures have historically made the cognitive leap to believing they suffer from an infestation is actually a fascinating question. Looking at it from an evolutionary standpoint, one might speculate that at one point in human evolution there was a survival advantage in the ability to detect an infestation and rid oneself of it.

    3) Unique to skin conditions is the propensity to self-perpetuation. It is well established that continual (often subconscious) manipulation of a lesion will cause it to become chronic. Obviously some Morgellons patients suffer from an “actual” skin condition such as psoriasis, but many fall into this self-propagating classification.

    So, in summary, I think that Morgellons (and fibromyalgia, Gulf War Syndrome, Multiple Chemical Sensitivity etc.) are indeed real diseases, and cause untold suffering. Its my belief however that they are Central Nervous System disorders and that is where research ought to be focused.

  5. Rowley, that’s a very interesting point regarding the “buffer” between sensation and consciousness. I think many people (including myself) will have had the experience of simply watching something like swarming ants, or a close call with a spider, and having the sensation of insects crawling somewhere on their body, and the need to scratch. I know I felt quite uncomfortable in the theater while watching the movie ‘Arachnophobia’ (Check IMDB comments: “it made my skin crawl”, “makes you shiver”, “it makes me itch whenever I watch it”, “Your skin will crawl!”, etc.) It’s a hard wired response that you have no control over.

    So imagine if you actually DO have an infestation at one time. Many people actually had an infestation of lice or scabies, and they had serious itching and crawling sensations. They then had it treated, it cleared up, but because they have been mentally sensitized (their mental “buffer” has been all but destroyed), they continue to feel the sensations, even though the cause is gone. They insist they must still be infested, yet the doctor finds nothing. So it begins.

  6. I’ve read this blog and other Morgellons sites with interest over the past couple of weeks, after I first heard the term from someone who claimed to be suffering from it. Perhaps out of my ignorance, I took the “Morgellon’s challenge” (met with, examined, and at one point hugged) a claimed sufferer on two occasions. It should be noted that I am not a medical professional, meaning that my examination was purely visual supplemented with questioning. My interest in the matter was a speculative professional/financial one that would only exist if Morgellons was a recognized disease.

    The first person to contact me was very distressed, and complained of “spines” coming out of lesions, as well as bugs, spiders, and other matter. I tend to be skeptical but know enough not to believe I always know the answers. I asked this person if others could see these insects and spines, and she told me that her family could, and that some doctors could but refused to do anything. She also said she hadn’t heard the term Morgellons until recently even though she had been suffering for over seven years. I decided, as Michael has indicated, that many of her symptoms were common but that the “spines” would be novel and presumably easy to see. However, when I met with her I simply could not see any evidence of these spines, even though she indicated that they were clearly visible to her at that time. Interviews with her husband made me feel that although he had told his wife that he could see the spines and insects, and half convinced himself, that he had never actually seen anything. His descriptions were different from hers apart from the words spines and spiders. I convinced myself that this was simply a delusional woman, but because she had told me that she was diagnosed with Morgellons by an actual doctor, I started to research it.

    I began with Wikipedia, as any lazy internet researcher would. The entry on Wikipedia makes Morgellons sound very much like a real and accepted emerging disease. A close reading does reveal that it probably isn’t widely accepted yet. I went on to the NMO site, the MRF site, and this site, which I began to read from the earliest post. I also took a call and subsequently received a visit from another person claiming to suffer from this disease(coincidence? a conspiracy? from never having heard of it two two calls in two weeks?). This person was much more convincing and lucid than the first. In many ways, she presented herself like Ms. Koch or the person posting as Aherah on this site have in their best moments. This led me to revisit my feeling that Morgellons was simply the production of a crazy mind. Meeting with this second person, as well as her son and husband, was unfortunately unproductive. She attempted to show me how she could “grow” fibers using a lotion product. However, the fibers simply looked like dead skin in an admittedly large amount. I produced a similar effect on myself with the lotion (I rarely exfoliate) but the woman who was suffering did not see the similarity. It should be noted that the examination was purely visual with no seeing aid (other than my contacts), and I am not in any way a trained medical professional. She became somewhat upset that I did not see her fibers as extremely unusual. She did say that she often produced much more alarming fiber samples that her husband and son had seen. An interview with her husband confirmed this on his part; however, an interview with the son revealed that he had never seen anything unusual in her samples and that he had essentially been lying to his parents because it was easier than arguing (this assumes, of course, that he was being truthful with me).

    Now these two experiences of mine prove…nothing, as Michael has pointed out on this blog. In my lay opinion, the first subject was suffering from DOP and had attached to the concept of “Morgellons” because an MD from a different state (I was too new too the concept to think to ask for a name so I’m unsure who the MD was) was willing to offer that as a diagnosis when every other doctor diagnosed DOP. I’m convinced that the second subject had some skin and other unexplained health problems and had become fixated on normal skin debris as the explanation. These are two possibilities, and those who suffer should constantly strive to accept that they could fall into one of these categories. Obviously that’s a difficult if not impossible task for any person, no matter how smart, educated, or sane they are. It also makes me skeptical of claims over the internet that any sufferer could produce in person evidence that would make a believer out of me. Both subjects I’ve met claimed that. But that doesn’t mean it couldn’t happen.

    The CDC will have, in my mind, the final say on this. Even if a novel new disease is determined to be the cause, it will be difficult to parse out those who actually have it from those who are refusing to recognize other physical or mental problems.

    Anyhow, I know that none of this is overly probative, but I wanted to share my experiences with the readers here and with Michael. I tend to believe that those who are truly delusional will comprise the majority of those who are ever diagnosed with Morgellons, but only time will tell.

    Wisco

  7. Wisco, thank you for sharing your experiences, that was very interesting.

    I imagine the doctor who “diagnosed” Morgellons was either a quack, or was someone use the word “Morgellons” as a rapport-enhancing term for delusions of parasitosis. (Alternatively, the patient could simply have misunderstood what the doctor was saying).

    Sloughing skin is something that has been mentioned before. The use of lotions to “produce” the fibers seems quite common. Some people use flour and water on a daily basis to get the fibers “out”, when it seems fairly clear they are just rolling up dead skin and lotion (or creating little fiber-like rolls of dough). I got some similar “fibers” from by own skin after a sunburn, as I’m sure everyone has. See the third photo here:
    http://morgellonswatch.com/2006/08/08/abc-morgellons-medical-mystery/

    Sadly your experience, novel and interesting though it may be, is probably repeated on a near daily basis for thousands of dermatologists across the country.

  8. Wisco–

    You missed your true calling. I actually am a primary care physician, and although I have never seen a patient stating they have Morgellons, there have been seen in my clinic who would if they spent 10 minutes on Lymebusters. One person claimed that her skin lesions produced shard like crystals and spines. Given your screen name, its remotely possible its the same person. Another person would bring in stool samples claiming that it contained large worms that “any fool” could see.

    Perhaps the most interesting case was someone with self-described “Multiple Chemical Sensitivity Disorder” — which I would call Delusion of Contamination. Her presentation was very, very similar to a Morgie, except that instead of misconstruing skin sensations and debris, she did the same with odors. At one clinic visit, she and her husband were attempting to construct a lawsuit against a neighbor who used a ChemLawn service several years prior. There was a staunch belief that subtle traces of those chemicals remained in her home and were the cause of her myriad ailments. She never left the house without a cloth wrapped over her nose and mouth. What’s interesting about that — and similar to Morgies — is that they will use treatments and barriers that are really more like symbolic talismans. In the case of my patient, she was aware at some level that the cloth could not filter out the molecules that frightened her, but its presence offered her some mental respite.

    Interestingly, in both cases the spouse was not afflicted, but was actively enabling the situation.

  9. MCS has been brought up a few times, it is very similar in nature to Morgellons, and has about 95% overlap on the symptoms with a slightly lower emphasis on skin symptoms.

    I mentioned it in the Controversial Diseases post.

    Interesting stuff, related concepts are Medically unexplained physical symptoms, and Culture-bound syndrome

    Engel’s paper on contested causation is particularly interesting.

  10. As Morgellons is now formally recognized
    as a “program” in the CDC, expect Lyme denialists like
    McSweegan to start to propagandize against it for a variety of reasons
    including (1) Coverup of scientific fraud regarding Lyme testing and OSP-based
    Lyme vaccines (e.g. LymeRix); (2) Violations of Geneva
    Conventions regarding use of bioweapons; (3) Controlling costs at HMO
    and insurance by preventing testing and treatment of chronic lyme sufferers,
    whose incidence in the general population may be many orders of magnitude
    greater than the bogus CDC surveillance data on Lyme.

    Lyme denialists have been practicing what Morgellons-Watch does for the last decade or more — claiming that chronic lyme doesn’t exist and that patients complaints are “all in the head.” One of the fruits of their disinformation campaign is the IDSA Lyme treatment recommendations, which was so corrupt as it is now the subject of an antitrust suit by the Connecticut Attorney General’s office: http://www.the-scientist.com/news/display/49605/

    Morgellons is these Lyme denialists nightmare… The title of the Lyme documentary “Under our Skin” ( http://lymediseasefilm.com ) refers to the
    issue that many chronic lyme patients “look fine” to their doctors and because of the odd-array of symptoms Lyme presents — treated as hypochondriacs and headcases by their doctors. So what happens when Lyme disease is no longer “under our skin” but is visible as non-healing lesions containing fibers and granules??

    I guess that’s where you Morgellons-Watch people come in. To help ensure
    that even when these chronic lyme patients present with clear dermal manifestations of infection, these patients will also be dismissed
    as “head cases” or “delusional” and therefore any underlying infective
    etiology will not even be considered or tested for. I guess we should
    thank Morg-watch for their “service” because they’re helping keep down
    insurance costs by ensuring that nothing is done for these patients,
    despite an epidemic-like ramp-up in infections from this disease.

    Why stop at denying Morgellons or Lyme? Why not also claim that people suffering from tertiary syphillis (another spirochete causing lesions) are also DOP? And let’s not forget bouttoneuse fever ( http://cchs-dl.slis.ua.edu/clinical/infectious/byorganism/rickettsial/mediterranean.htm
    )… or Bejel ( http://en.wikipedia.org/wiki/Bejel ).

    Your “denialism” is simply a cynical short-term move until the CDC (or other “authority”)actually finds a parasitic or infective etiology behind morgellons.
    It is simply good business for people like McSweegan and you Morgellons-Watch
    toadies to propagandize that Morgellons is “all in the head” too. I wonder
    if you folks are getting big-pharma kickbacks to spread propaganda
    to add “Morgellons” as a new and lucrative “off label” market for their
    still on-patent drugs like Zyprexa and Risperdal. After all, “off label” use is
    anecdotal and opinion-based… it is certainly not part of “evidence based
    medicine” because if idiots like Dr. Koo, Murase, Koblenzer actually did
    a proper scientific study on giving people with an infection Orap, Zyprexa
    or Risperdal… you’d simply find a bunch of chemically lobotomized people
    who still had Morgellons skin lesions… (I’m one of Dr. Koo’s “failures”
    as I didn’t get at all better from his quackery… giving me psychotropics
    when I had an infection). Three years after Dr. Koo’s malpractice on me, Morgellons.org made me aware of Lyme disease and ultimately put me in touch with handfuls of patients, all seen by Dr. Koo, all told “i know all about the skin and the things you describe and the sensations you are feeling, simply cannot happen” and all chemically lobotomized, and all suffering from Lyme disease, and
    all finding significant health improvements from Lyme treatment with antibiotics and not psychotropics.)

    McSweegan has had a long and disreputable past. It is incomprehensible how people
    take seriously the health advice from someone that worked on biowarfare (anthrax) and in particular, has been involved in weaponizing Lyme — it’s like
    getting getting health tips from Dr. Joseph Mengele! (or rather Dr. Erich Traub,
    who is the “Werner von Braun” of bioweapons… a nazi war criminal imported
    into the united states to continue his bioweapons work, which included
    Lyme disease and using ticks as a disease vector). http://lyme-rage.info/bwsept06.html )
    “By the late 1980’s it was realised that Lyme disease was rapidly spreading out of control. Cases were reported across America, Europe and Asia. Federal health agencies launched a major propaganda effort to limit diagnosis and so artificially “contain” the epidemic. The National Institute of Health (NIH) appointed biowarfare expert Edward McSweegan as Lyme Program officer. [xxv] Under his leadership the diagnostic criteria was skewed to exclude most sufferers, especially those with chronic neurological illness. McSweegan’s successor at NIH, Dr Phil Baker, is an anthrax expert [xxvi], and has continued his policies.”

    McSweegan’s vendetta against Lyme sufferers (and now Morgellons, since
    Morgellons is being recognized as a symptom or coinfection of Chronic Lyme)
    began because Lyme activists ‘got him in trouble at work’, or rather
    exposed his inappropriate “lyme denialist” activism while funded by the american taxpayer:

    http://www.newsmax.com/archives/articles/2003/7/30/191652.shtml
    “Earlier this month, the committee launched an investigation into the case
    of Edward McSweegan, a scientist at the NIH with a salary of $100,000 who
    claims to have been given no true tasks or responsibilities for the past
    eight years. McSweegan said he was demoted from his position as program
    officer for Lyme disease in 1995 for criticizing a Lyme disease support
    group and since then has been relegated to menial tasks such as preparing
    coffee and forwarding messages.”

    ‘sarahbionedunn’ continues her compulsive lying behavior on this issue
    as well. The reason why the NMO has a picture of her with a forked tongue is because she’s ethically challenged and “speaks with a forked tongue.”
    My understanding is that the Forschner’s WON their case against
    McSweegan and the NIH. ( http://pacer.ca4.uscourts.gov/opinion.pdf/991615.U.pdf )
    This is what resulted in McSweegan’s demotion and is ultimately the reason why he spends so much time hating on Lyme patients
    and harassing Lyme patients online as “Chuck P Adams”
    http://www.disease-information.com/archive/index.php/t-1798.html


    Karen and Tom blame a recent drop in contributions on Edward
    McSweegan, a microbiologist and former Lyme disease program officer at
    the National Institutes of Health. He has used the Internet, his Ph.D.
    and his government title to tell anyone who will listen that the
    Forschners have used their political clout to intimidate the government
    into promoting bad science.

    McSweegan has been suspended for two weeks without pay for, among other
    offenses, sending e-mail messages from his home and work computers
    raising questions about the Lyme Disease Foundation. One message
    contained a skull-and-crossbones and referred to the foundation as
    “whacko.”

    Karen and Tom asked the NIH to compensate them for McSweegan’s
    actions by giving them an award and allowing them to hold this year’s
    three-day Lyme conference on the NIH campus in Bethesda, Md. They got
    both.

    John R. LaMontagne, director of the division of microbiology and
    infectious diseases at the National Institute of Allergy and Infectious
    Disease, of the NIH, and McSweegan’s boss, downplayed the significance
    of the award. “It’s just a stupid lucite plaque,” LaMontagne told The
    Washington Post. “It’s not like we’re giving her $250,000.”

    But McSweegan and others said a seal of approval from the National
    Institutes of Health is far more valuable than the plastic it’s printed
    on. It gives the group credibility. The same thing happens when the
    Forschners drop the names of U.S. congressmen and senators in their
    conversations with agency bosses, McSweegan said.

    “Part of the reason they instill fear is they wave [U.S. Sen.] Joe
    Lieberman’s name and picture around the NIH,” McSweegan said. “His
    name is a loaded gun at the NIH.”

  11. Niels, your post did not show up immediately, as because of the large number of links it was marked as spam, and I had to approve it manually, sorry about that.

    Your theory about McSweegan and myself being involved in a government level conspiracy to cover up Chronic Lyme and Morgellons is not credible. If you notice in the above post I was actually criticizing McSweegan for ignoring the real physical contributing condition in people who self diagnose with Morgellons.

    I am on the side of the patients. I want people to get better, and I feel that continuing to focus on an unproven diagnosis of “Morgellons” is not helpful when their symptoms are far better explained by a range of other conditions.

  12. Niels,

    I am curious about what you mean by this: “As Morgellons is now formally recognized as a “program” in the CDC….”

    I don’t know if that makes sense. A program? The CDC is currently involved in a project, investigating whether or not Morgellons exists at all. If Morgellons is a distinct medical condition, I’m confused about how that could be a program? Do you mean, the investigation is like a program?

    Could you explain more about what you mean by this?

  13. Can I place my bet, now?

  14. Hello Wisco,

    I’m from Mich myself. I can believe that the two people that you met were more spastic than credible. Yes, there is a great deal of paranoia surrounding “the disease” that can play additional tricks on ones mind. I’ve had this fiber-producing condition off/on (off now) since 92. I never considered the bug theory, it never even crossed my mind until I found lymebusters. I don’t know if I have bugs–I don’t see bugs. If I did, I might be much more spastic. I do know that I have had the sensation of bugs, as have my children without any (and you’ll have to take my word on this) suggestion by me. I don’t collect things; I don’t examine things; I do my best to ignore things because it appears as if this is just going to be my life. I don’t manage to keep my cool about the situation when my children are suffering though. Then, I panic, not unlike the two people you met. I do believe that people can be influenced by other people, sometimes incorrectly. Nobody on lymebusters had the ability to influence me in 1992–I was alone. I believe that there is a real fiber-in-skin producing disease that people have termed “Morgellons.” I think the evidence is sutle and difficult to encapsulate. I don’t know if the stuff people collect as evidence is the actual evidence or just the products of related problems. I don’t think it is at its core a mental problem, but I do believe that it can turn into one either through the progression of an untreated disease (like syphilis), or through the mental trama of feeling as if you are being eaten alive and nobody will help/believe you. Personally, I feel quite helpless about the situation. I just hope that whatever I am doing keeps it at bay for all of my family.

    In your little experiment, you might consider that two people who return your call are not a representative or realistic sample (I would have never called you). Consider that there may be credible people with a collection of symptoms resembling Morgellons that do not seek out someone to share their horror. You might also consider that people who knows their bodies, and know when something odd is happening to their bodies, might not be able to convey their experiences through the language of words. All they have to show for what they feel is the odd little things they find. They know these things are unusual because they know their bodies don’t normally produce them. These things don’t cause the same type of panic in the viewer (you) as they do in the experiencer because you have to live an exerience to “get it.” For example, I’ve never been able to fully convey in words my experience of giving birth. No matter how hard I try, you won’t be able to “get it.”

    How strange it is that whatever is going on is so very real to the people experiencing it though, eh? For me, there just came a point when I could not deny that something was going on. I’ve speculated about what it may be in the past, but I’ve found that to be like a dog chasing her tail. I’m trying to hang on to my sainity despite Morgellons. It’s there, but I try to minimize it as much as possible. In the meantime, I pretend that my doctors will figure out the other weird stuff, and they pretend that they can. I do not speak of Morgellons anymore.

    Aherah

  15. Michael: Those were the three options that I had arrived at as well considering the diagnosis. Based on her story of “hunting” for a diagnosis I was leaning towards the quack explanation.

    Rowley: The behavior of the family in my two encounters was perhaps the most disturbing part.

    Aherah: My experiences are simply case studies; two subjects are obviously not a large enough sample to draw any real conclusions other than the obvious, that not ALL people who claim to have Morgellons actually do (assuming my observations are true and accurate). That is true even ignoring that fact that, as you point out, people who are seeking help in the legal community may not be representative of the group as a whole in other ways.

    One thing you bring up is the concept of “taking your word,” which I generally never do. Not because you or anyone else is inherently untrustworthy or likely to lie, but because what people “perceive” to be truth is always at least a little, and often very, different from the “objective” truth. Whenever two unbiased people tell their true story about an event, what a video camera would have recorded never completely matches either. When parties have an interest or a preconceived notion, the differences become even more marked even when both sides are trying to tell the truth, the whole truth, and nothing but the truth. In your case, I believe that you didn’t verbally suggest to your kids that they had bugs on them, but they may have picked up non-verbal cues such as scratching, or heard you mention the feeling while listening at a keyhole or to a phone conversation. Or they may have had no input from you at all; it’s simply impossible for an outsider like me to determine the Truth, and only somewhat easier for you. If that makes any sense.

    I’d also like to point out that, at least to me, a psychiatric problem is every bit as real and as frightening as a parasitic infection. A college roommate of mine “went” schizophrenic and became extremely paranoid. He claimed I was stealing his mail and refused to believe it was on his desk even when a third party physically took my roommate’s hand and placed it on the pile of mail. I also lost a brother-in-law to suicide, despite the fact that he had a nearly perfect life in my eyes. I don’t doubt that despite the “objective” reality, he felt in his depressed state that life was not worth living. Even if every case of Morgellons is a “new” form of DOP, that does not in any way diminish the fact that people are suffering and that they must be helped and treated with compassion like any other person with any other medical problem. The brain is organic and in my mind mental problems ARE physical problems.

    You also point out the difficulty in communicating symptoms to those who haven’t experienced them. A good point and one I hadn’t considered. A “middle of the road” explanation would be that (assuming for the sake of argument that Morgellons is a distinct disease) Morgellons sufferers develop a form of DOP wherein they believe that their fibers or insects are much more visible than they actually are because they don’t realize that what feels so unnatural to them appears to be commonplace to an outside observer. I hope I made it clear that my opinion, that Morgellons is primarily a mental problem that often accompanies previously identified physical problems, is simply an opinion based on the facts that I have at my disposal. In an infinite universe, all things are possible. My opinion just seizes on the explanation that I find most likely. Medical researchers will have to have the last word.

    I do think that this blog serves a useful purpose even though there is still research to be done. It’s clear to me that at least SOME people who feel that they have or may have Morgellons have DOP or other conditions. This site can be useful to people who need to be reminded that other possibilities may exist and that the best course is generally to listen to your doctor.

    Whatever you have Aherah, I hope you beat it.

    Wisco

  16. O.K. Wisco,

    I appreciate your respectful tone, at the very least (rare on this blog). As far as my kids are concerned, they began experiencing what you term “DOP” (i.e. feeling bugs popping out of their skin) when I had been free and clear of the fibers for years (no scratching, no rashes, etc). The whole thing started up with them again in Sept 2003. I had not known that there was a Morgellons group at the time; at 11 months, 3 and 6 years of age, I’m sure that they did not know that there was a Morgellons group either. After my 3 year-old stopped eating, had horrible ongoing diarrhea, and began producing fibery-rashes, I found the MRF. Today, knock on wood, we’re all doing well.

    I do not beleive I suffer from a mental problem. I do believe that I have a fiber-producing issue. I do not know if it is parasites; I just don’t know what it is. Like Michael and I, we’ll have to agree to disagree. Yes, I too hope that the researchers are able to get to the bottom of this, but I’m not holding my breath.

    It’s true, there is no objective reality. Even what we think we know or do not know is subject to question.

    I have to get back to work.

    Take Care all,

    Aherah

  17. This is my last post folks.

    I am a very strong girl, but I am wearing down, whatever Morgellons actually is it is VERY REAL and extremely painful, torture, I can not find enough words to describe.

    I do hope there is a heaven coz I really need something to look forward to, my beautiful baby boy so innocent – he is my life, my love. No one is helping me and antipsychotic injections in my arse is not the answer.

    I’ve said it before and I will said it again Morgellons is CRIMINAL.

    I wish all the real “Morgellons” suffers peace and freedom, if you find both of these can you please let me know and show me the way. I can not deal with the system any further as they are dealing with me.

    Imprisoned in my home.

    I guess we can call this our “new Mental Health reform”

  18. Wisco,

    Having more thoroughly read your post I apologize for not addressing the very thoughtful manner you handled your concern about other’s mental states, as you experienced with your own friends and family. Although I’d have to say that suicide doesn’t necessarily result from a mental disorder as much as mental anguish. Yes, one could say that many in the Morgellons community suffer from intense mental anguish that sometimes does lead to suicide. Whether you buy into their subjective experience or not doesn’t really matter if it is real to them. The strange part is, those who have sought counseling and anti-psychotic mediations didn’t seem to find any relief from their ongoing subjective experience of Morgellons, and their mental anguish.

    Do you think your experiences put you in a position to determine who in the world does or does not suffer from a mental disorder? Are you a physiatrist or someone working in such a field? It’s just that you seem to have looked at these two people and made some sweeping generalizations about all who claim to have similar symptoms (common on this blog).

    Thanks,
    Aherah

  19. The basis of this unprecedented patient movement is non-compliance with medical treatment. Many of them are in serious need of health care advocates and/or proxies to help them navigate the health care system. Lacking the foresight to see that scrutiny would be applied to their having gone so public about this type of illness has further proven that simple problem solving is foreign, and completely unacceptable, to so many of them. The patients’ negative sentiments are meant to accomplish making those who aren’t afflicted either shut up, or agree. As people in many of their daily lives have, no doubt, discovered, going along with them is a lot easier, but it not only leaves each individual right back they started, they’ve fallen, even further, as prey to this thing that they all see as a new plague. It’s great business for quacks, but what they’re doing to these people is utterly unconscionable.

  20. Aherah,

    My brother in law had been diagnosed with clinical depression, something I wasn’t aware of until after his death. Whether or not that’s technically a mental “disorder,” it certainly involved a great deal of mental anguish on his part.

    It’s difficult to tell whether psychiatric treatment is beneficial to Morgellons sufferers. At least one report I’ve read on here seems to indicate that anti-psychotics are successful, which implies that at least some of the time, the problem is mental. This fits with my own observations that at least some cases of Morgellons are psychiatric in nature. However, other sufferers report that such treatment is ineffective. At least some of these (based on their resistance to a psychiatric diagnosis) are unlikely to take anti-psychotic medication or cooperate with counseling, which would lead to its failure. However, that still leaves the portion of sufferers who do cooperate but do not find any relief. I don’t know enough about the success rates of psychiatric treatments in general to know what that means. My field is legal rather than medical.

    In my previous post I said “My experiences are simply case studies; two subjects are obviously not a large enough sample to draw any real conclusions other than the obvious, that not ALL people who claim to have Morgellons actually do (assuming my observations are true and accurate).” What I was trying to say there and in other parts of my posts is that my experiences have caused me to develop a personal opinion, but one that I know is not informed enough to be much better than an educated guess. That’s why the CDC will have the final say in my mind, and my opinion will line up with their findings. Very little can be learned unless a well defined and statistically significant sample is used. Case studies like mine or even autobiographical stories like yours and other sufferers just aren’t probative of much.

    Any generalizations I make are simply my opinions as to where my observations logically lead in my mind. Anyone who reads them and the information that they are based on will hopefully know not to take them too seriously given the small sample size, but hopefully they add at least a little to the discussion given the fact that the vast majority of all Morgellons information at this point is of a similar nature.

    Wisco

  21. Please pardon my interruption.

    * From the MRF’s June 2007 newsletter…

    1.
    Promising Research Opportunity :
    One of the country’s most renowned biomedical research institutes has submitted a research proposal to the MRF. The research would focus on uncovering the differences in the blood of people with Morgellons and those who do not have the disease. The short term goal of the research is to identify markers that would allow us to diagnose Morgellons disease. The long term goal is aimed at using these markers to understand the cause of the disorder itself. The cost of this research project would be $233,000 for one year.

    This research is extremely important. This research institution has the most advanced technology available in the world and some of the country’s leading researchers. We are very fortunate that they have taken an interest in Morgellons disease. This would be the first Morgellons research project that focuses on the blood of patients. Unfortunately, this type of research is very expensive.

    Please donate to this and other research projects if you are able, and ask your friends and family to also join in the effort. If you wish for your donation to be used for scientific/medical research only, please designate in the memo portion of your check, or on paypal, that funds are for the “MRF Research Campaign.” 100 percent of these funds will go towards research.

    I think the name of that renowned biomedical research institute should be presented to the patients. Here is that newsletter in its entirety:

    http://morgellons.org/newsletters.htm

    * From April 11, 2007′s MRF newsletter to all registrants (which I don’t have a link to, having seen it on a message board)…

    7. We would like to welcome the newest member of the Morgellons Research Foundation’s Scientific Advisory Board, Ahmed Kilani, Ph.D., MT(ASCP) Dr. Kilani is a microbiologist who is doing his personal best to help us find answers to this confusing and tragic situation.

    Ahmed Kilani, Ph.D., MT(ASCP) is the President & Laboratory Director of Clongen Labs

    http://www.clongen.com/morgellons_disease.php

    * Back in February was when I’d first heard of this lab’s involvement, when a “morgellons disease” patient posted comments saying that they were listening to her and setting up an assay for her theory. Last month, she’d posted what appears to be email correspondence from them on the lionsgate “Bug” forum.

    RE: Topic: What R These? / Why R Experts Blind to Them?!

    | | | Inbox
    _________,

    Would it be possible for you to send me stool and skin s****ing (or scab)
    samples? I would like to test your theory. So far, we have three targets
    we are investigating including ////////. Keep in mind that what we are
    doing is very preliminary investigation and being able to draw a connection
    between a parasite and Morgellons will make it a little easier to receive
    government funding and move faster towards finding an answer.

    Best regards,

    ////////

    ~~~~~~~~~~~~~~~~~~~

    I am happy to hear that you are excited about the test for ////////. Keep
    in mind this is an investigation and a new assay that we are setting up so
    it will take a few weeks and it is not diagnostic but if it turns out
    positive, it would be worthwhile testing a larger group of Morgellons
    patients.

    ~~~~~~~~~~~~~~~~~

    Thank you for your e-mail and information on the isolate you described. I
    am going to setup the assay with no control just to test your hypothesis.
    As you know, if you do not use a positive control and the results turn out
    negative, you would have no confidence in the test but I will do it as soon
    as possible. I will be in touch with you as soon as I have any results that
    are significant.

    ~~~~~~~~~~~~~~~~~~
    ________,

    To show you that //////// has been neglected as a pathogen in terms of assay
    development, there is one article only in pubmed citing a molecular assay
    for detection of the ribosomal RNA. I will work on it and run the assay on
    several samples with no positive control (no one sells it).

    Best regards,

  22. Gillian Says:
    July 10th, 2007 at 5:11 am
    This is my last post folks.

    “The Last Post” -

    For those who are unfamiliar with the antipsychotic drug Risperidone

    Risperidone
    http://en.wikipedia.org/wiki/Risperidone

    Risperidone Side Effects
    http://www.ncbi.nlm.nih.gov/sites/entrez?cmd=Retrieve&db=PubMed&list_uids=10811239&dopt=Abstract

    About Your Medication
    http://wch.org.au/pharmacy/media/medinfo/risperidone.pdf
    http://www.medicinenet.com/risperidone-oral/article.htm

    RisperdalSide Effects & Drug Interactions
    http://www.rxlist.com/cgi/generic/risperid_ad.htm

    RISPERDAL CONSTA – INJECTION
    http://www.risperdalconsta.com/html/ric2a/pd_consumer.xml?article=faqs.jspf

    This letter was left for me in the psychiatric ward, delievered to me from one of the other inpatients. She was a lovely girl, my heart broke over her story too. Without disclosing any of this young woman’s details I would like to share a little about her story. I will call her “Monk Angel”.

    Monk Angel was involved in a tragic car accident 10 years ago. She went onto say that her accident was almost identical to that of the late Princesss Dianne of Wales (aka The “Queen of Hearts”). Monk Angel has also endured a terrible journey. I don’t know how the poor girl is still standing and looking so beautiful. “You are a natural beauty ////” is what I would say to her. 17 operations on her leg sustained from the car accident would be enough for any human being to throw a hissy fit over. She is now suffering from Post Traumatic Stress Disorder.

    ………………………………………………………………….

    Dear Gillian

    You are one amazing women, from what you’ve told me about your life you have been thru hell and back and I’m sure that’s not even 1/3 of the story.

    Your positive attitude towards life inspires alot of people in here and you may not know it but they listen to you and take on board what advice you give.

    I have no doubt that you will fight for what you want and all I can say is “Go Get Em”.

    If you would like to catch up give your details to ///// we are all going to the ///// for a good night out. Your spirit is so bright you light up the room everytime you enter.

    You have been a fantastic addition to “our group” and I wish you well with everything you have your heart set on.

    Take care of yourself

    Love() ////
    ………………………………………………………………..

    I never spoke of the “Morgellons” to any of the inpatients during my recent stay. I know better, those people would have fallen like a house of cards.

    Unfortunately I had to speak of the “Morgellons” to the doctors which I was very reluctant to do. Reliving “Morgellons” was not what I wanted. One doctor did ask for me to write down for him in my own words what “Morgellons” was. The thought of that sent my head spinning. Then I said “nope – enough is enough!! – stick with your siimpleton mind girl”!

    I wrote this for the doctor -

    M-O-R-G-E-L-L-O-N-S by Gillian //////////

    M = Misdiagnosis

    O = Ostracized

    R = Research

    G = Genesis

    E = Endangered

    L = Laughed at

    L = Lied to

    O = Oxymoron

    N = Negligance

    S = Sick/suicide

    I think I kinda worried the docs a little by writing suicide. The suicide was an adenmendum, it took me 5 minutes literally to write my theory and someone made me angry later on that day so I added suicide. I couldn’t help but think about poor Travis Wilson who killed himself last year, he suffered Morgellons too. Morgellons can induce suicidal ideation, it all depends on who you are, and what ya made of. Me is me, I have Rickettsia, my genetics and most importantly share the same world with billions and trillions of people.

    Bing Bang Bong!! – that’s the “Morgellons”.
    Have a great day all.

    Gillian.

  23. Anyone still out there? Looks like last post was July 11. I found this site because a friend who has been mysteriously sick and absent from work told me she may have this condition. I googled and came upon the MRF site and at first I was very concerned–Should I not be near this person, as this weird new disease may be contagious?

    Then I found you guys and now I feel a little better about her return to work, where she sits near me as well a several other people. I guess my question is, if someone says they think they have Morgellons, do you think there’s anything to worry about as far as sitting near them, sharing the occasional plate of cookies, using the same restrooms and work fridge, etc? You guys are really that certain there’s nothing here that’s contagious? I guess I’m looking for reasssurance of some kind that what she has is definitely not a “real” contagious disease…

  24. am glad I found your site. My travels with this monster began approx 1 yr ago after finding a woodtick on my neck. Shortly after that I began developing “bites” some of which were surrounded with bruises. At about the same, I found that I was having trouble with my memory. After trying to explain what I was going through (memory,blurred vision, vomiting and diarrhea to mention a few)she put me on an anti-depressant and ordered labs all of which were within normal limits. She concluded there wasn’t anything wrong and suggested we have an exterminator come to the house. We took “matchbox” samples in to several well-known companies and was told that were not insects, couldn’t determine what the samples were and therefore would not know what chemicals to use. I went to a dermatologist who had never heard of Morgellons, wasn’t interested in looking at the sample, and did not want to read the article my daughter had found on the internet. He did a biopsy of one of the bites that had a bruise around it. The results came back negative and he felt it was idiopathic purpera. By now my family thouht that I was crazy. I wouldn’t go to peoples home for fear of giving them the “critters” that nobody but me could see. I have been hospitalized twice due to vomiting and diarrhea again the CT’s and for the most part labs were normal. I am still finding white round-shaped things all over me at different places; some need to be pulled out and quite frequenty there are “fibers” which I called hairs; most of the time I take a bath when the itching starts and I can get various things squeezed out and there are very tiny round things in the water that will morph into white worm-like things when I put some of the water into a covered container. Please keep the info flowing..there will always be non-believers, but having this is not fun and I am not crazy..though I will admit to suicide ideations..I am an RN and believe me I have never wallowed in self pity. If anybody can suggest comfort measures, I would really appreciate. I can’t sleep for any length of time as I usually am up bathing, changing bedding and night clothes.

    Thank you for letting bend your ear.

    Karol

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