[bpsdb] Looking at the culture-bound syndrome Grisi Siknis recently, I was reminded of Morgellons - a subject I've been meaning to look at for many months. Sufferers report strange organic and artificial fibers erupting from lesions, sensations of bugs crawling under the skin, and tentacled "starfish" crawling inside flesh. The problem is that while sufferers insist they are suffering from some new and exotic disease, both the medical establishment and the weight of evidence so far suggest that the the condition is largely psychosomatic in nature.
In other words, while the condition is undoubtedly "real" in the sense that people are suffering from genuine discomfort; no physical trace or cause of the disease can be established, leaving most doctors to conclude that it is a result of the patient's mind - Morgellons sufferers are commonly diagnosed as having delusional parasitosis. Indeed, to dermatologists the signs are unmistakable, as Dr. Koblenzer describes [1]:
"The patients are virtual carbon copies, one of the other. The clinical picture is unmistakable. The patient is intensely anxious, is obsessively focused on his or her symptoms, brings ‘‘specimens’’ of the offending agent, or agents, and is unshakable in his or her belief as to the cause. Usually there will be a logical explanation of exactly howthe infection or infestation was contracted, and the patient will have resorted to the most extreme measures both to eradicate it and to prevent contagion."
[...]
"...the patient is not open to the idea of pathology in the mind, the nervous system, or the brain. It is also important for us to distinguish delusional beliefs from phobic concerns or obsessional worries, a distinction that caused some confusion in the past13 and that is important, because both the psychopathology and the treatment are different between the three."
Unfortunately, delusional parasitosis is understandably not a very popular diagnosis, and seems to have triggered something of a backlash among sufferers. At the extreme end of that, Morgellons has unfortunately attracted a "lunatic fringe" on the internet of conspiracy theorists positing everything from contrail poisoning to secret government tests to infection with aliens. These people with their ridiculous Youtube videos and assertions of nanotechnology are doing more than anyone to stop it being taken seriously.
Fortunately, there are more sensible support groups, but even here the attitude is strongly biased against the idea of a diagnosis of delusional parasitosis. The main reason for this seems to be a fear that somehow a diagnosis of DP means that doctors are saying that their condition is imaginary or not real - a perspective that probably has a lot to do with general public attitudes to mental illness. A good example of this appears in an excellent commentary by a Morgellons sufferer, published recently:
"Now, you can go up there and post all kinds of nasty comments and scream from the top of your lungs that this is real, but why bother."
Simon and Garfunkel once sang that "a man hears what he wants hear and disregards the rest", and this seems to be very much the case with these online communities - they have no rational reason or evidence to reject or refute the diagnosis of delusional parasitosis, but they continue to insist that it cannot be so, fearing that doctors are suggesting that their illness isn't "real". Sufferers take a diagnosis of delusional parasitosis as an offensive insult. And that's understandable - I woudn't particularly want to be called delusional either. As ever, PalMD at White Coat Underground puts it better than I can:
"...this false dichotomy of mind vs body is troubling, and the stigma of brain illnesses is very problematic."
The CDC have allocated some funds to study the disease at an epidemiological level - essentially collating the available reports to see if any pattern emergences. Some Morgellons groups have pinned hope on this study, but my gut feeling is that this can't provide them with an answer, for the simple reason that if the CDC produce the "wrong" result, it will be dismissed as conspiracy or incompetence.
So what can the medical establishment do about this? In my recent post on Grisi Siknis I noted that there were three basic possibilities: either the doctor genuinely shares the belief system of the patient; the doctor educates the patient to come around to his or her way of thinking; or the doctor pretends to believe the patient and plays along ("as it happens, anti-psychotics are very good for tackling skin parasites!"). The latter approach is seen as pretty unethical as it involves potentially deceiving patients, but some dermatologists are coming around to the idea. Murase et al present a particularly compelling account of this sort of thinking in a dermatology journal in 2006 [2]:
"[B]ecause the term 'Morgellons disease' does not have the word 'delusions' embedded in the term, it is a useful way to communicate with patients regarding their disease. As a case in point, I have established a close relationship with the patient described above by referring to her delusions of parasitosis as Morgellons disease. After taking cultures and a biopsy, I reassured her that there were no bacterial, fungal, or parasitic infections. I emphasized that I did not doubt the authenticity of the sensations she was experiencing, and I empathized with how disconcerting it must be to feel bugs crawling and stinging her skin. I explained that sometimes medications that psychiatrists use to calm nerve signals help patients with Morgellons disease. She is currently on the anti-psychotic risperidone, followed by both dermatology and psychiatry."
It's a very seductive approach, but it isn't without hazards and consequences as Accordino et al point out [3]:
"One wonders if using the term “Morgellons disease” in clinical practice may bring about a slippery slope of using patient-created diagnostic terms to describe conditions with no empiric support of their existence in the medical literature."
There are numerous dangers if this were to happen - for example, it's a very short step from patient-created diagnostic terms to patient-created cures, and the spread of terms like "Morgellons" could well lead to patients rejecting appropriate courses treatment. This is aside from the obvious objection that unless the doctor involved is very careful, they are essentially lying to their patients. What would be the ethical and legal implications of this?
The truth is that Morgellons probably isn't a new or novel disease, but simply delusional parasitosis mixed with an internet meme. That isn't to say that it's not a real condition - it absolutely is - but the unfortunate medical label clashes with the cultural beliefs and expectations of the patients. The question of how best to deal with this is unanswered, but with any luck perhaps the CDC study will stimulate the sharing of ideas between doctors, and help to establish a framework of understanding that benefits both doctor and patient.
- - - - - - - - - - - - - - - - - - - Find me on Twitter! @mjrobbins[1] KOBLENZER, C. (2006). The challenge of Morgellons disease Journal of the American Academy of Dermatology, 55 (5), 920-922 DOI: 10.1016/j.jaad.2006.04.043
[2]MURASE, J., WU, J., & KOO, J. (2006). Morgellons disease: A rapport-enhancing term for delusions of parasitosis Journal of the American Academy of Dermatology, 55 (5), 913-914 DOI: 10.1016/j.jaad.2006.04.042
[3] Accordino, R., Engler, D., Ginsburg, I., & Koo, J. (2008). Morgellons disease? Dermatologic Therapy, 21 (1), 8-12 DOI: 10.1111/j.1529-8019.2008.00164.x
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There is a growing concern that recently introduced GMO foods are causing yet-unknown allergic reactions in large mammals, such as morgellons.
I suspect that if you have patients that are "... intensely anxious [and] obsessively focused on his or her symptoms" then telling them they have Morgellons Disease may not help and might even do harm. For example, they almost certainly will go home and do internet research and find that many doctors see this as delusional. From this it is a short step to becoming paranoid about the doctor or dismissing him/her ("S/he just thinks it's in my mind. But it's real.")
Is there not another alternative? If possible, find out what the cause is and then be empathetic. ("I can see why this was worrying you. Tests have shown that ... and it can generally be cured or at least minimised by ..."). The actual treatment may be exactly the same (e.g. anti-psychotic drugs).
I think the danger is not being absolutely honest with people that are obsessive is that they will find you out! It may appear to take a little longer to follow the supportive and empathetic route but in the long run this may actually be quicker as the patient will be less likely to do the run around of doctors, seeking a "real" diagnosis.
It's OK MJR, you can homeopathic protection from Morgellons.
:)
Woo begets woo.
T
Dr*T, I clicked on your link, which is your blog which starts by disparaging a headline in the Daily Mail: I was reading the People's Journal of Science (PJS or Daily Mail as it's known) and how they even-handed and non-sensationally reported CHEMtrust's commissioned report on Male Reproductive Health Disorders and the Potential Role of Exposure to Environmental Chemicals (pdf). The Daily Mail screamed
Gender-bending chemical timebomb fear for boys' fertility
and followed it up with hardhitting quotes like
Exposure to environmental chemicals slightly increases the risks of undescended testes and hypospadia - malformed genitalia - in boys, the report found
'Slightly increased'? That's a world away from 'timebomb fear', no? Anyway, I haven't fully read the report and only laugh at the Daily Mail's reporting rather than the report itself.
It’s too bad you “haven’t fully read” the report. How about CHEMTrust’s 3 page press release, which states that the report “highlights the dangers of exposing pregnant women to hormone disrupting chemicals in consumer products”? I ask because you derisively mention hypospadia and undescended testicles, but fail to mention the press release's reference to decreasing sperm counts and testicular cancer, the most common cancer in young men, which has doubled in incidence in many western countries-~every 25 years over the past 60 years.
So you ridicule the Daily Mail for referring to environmental chemicals as a ticking time bomb while “conveniently” leaving out the very point (which I have bolded) to which this term would certainly apply. Why did you do that, Dr*T?
As for your deriding the woman (in the same blog) trying to get information on "chemtrails" (and I hold no position on them), while singing the praises of Freedom of Information legislation, do you really think that had I made FoI inquiries about the US Government's spraying a known carcinogen over Winnipeg, Manitoba at the time it was happening, I would have found anything out? What about all the other documented instances of government's secret experiments on its citizenry?
Reply to Anon @07:53 - Yes, I agree. Honesty and empathy are best in the long run, for the reasons you gave.
Hi Carl,
It's not great form to try and debate a blogpost on someone else's blog!
Nonetheless (apologies MJR), I specifically made the comment that I hadn't read the report. I was making a note about the Daily Mail - there is no way of knowing if any headline on the Daily Mail is true because it always sensationalises everything to the nth degree. That was the point, perhaps I didn't make it as clear as it needed to be.
T
Hi,
I don't see that there must be a dichotomy. A doctor could reasonably say something along the lines of "Ah yes, Morgellons, it makes you feel like you have bugs under your skin. The bugs aren't real but the feeling is. Take some Polymascotfoamaline and you'll feel better again." No lying to the patient involved, and no trivialising their condition either.
It might also be useful to draw an analogy to phantom limb syndrome. Nobody thinks that the sufferers are faking it or that they're crazy, just that their sensory system is misfiring.
-phil
Generally speaking, for somatising disorders like this you don't come right out and say that someone is delusional or that it is 'all in the mind' - a good therapeutic relationship is paramount and you generally frame things in terms of 'misfiring of nerves' and suchlike - which justifies the use of psychoactive meds.
There is also a spectrum so that some uses of psychoactive drugs like antidepressants for neuropathic pain seem to mainly be acting on the peripheral nervous system while people with more overtly somatising conditions will be treated with more of a central emphasis.
The problem generally comes when suggesting non-pharmacological therapies such as CBT - then issues about whether the condition is 'real' or not tend to come to the fore. Often you find that the more obviously 'physical' a condition seems the more a patient is prepared to accept non-pharamacological help - then you reach a weird singularity where a significant minority of people with conditions generally accepted to be 'psychological' (depression, anxiety, psychosis) then begin to have a resistance to their condition being considered 'physical' or to pharmacological treatment.
Reply to Dr*T @ 12:31
Actually, it’s poor form to use a reply to a post with nothing more -- for all intents and purposes -- than a link to promote your own blog on an entirely different subject. I mean, it’s no different in principle than spamming, is it?
As for your “point” about Daily Mail headlines, your position seems to be that because the Daily Mail always sensationalizes headlines (unlike other tabloids, apparently), you can mock a headline without having any idea what you’re talking about. Had you taken the time to have at least read CHEMTrust’s press release, you would have discovered that the Daily Mail’s headline was essentially in accord with it.
Anyway, I agree that this matter is indeed OT (apologies, Martin), so I won’t have anything more to say on it.
Carl,
I think that depends on whether or not Dr*T and Martin know each other through some other medium, the badscience forums perhaps, and thus feel it is ok to drive by with blog links.
Reply to RS - 23:30
Could be. Dr*T and Martin share a singular contempt for the Daily Mail, and in Martin's case anyway, all of its readers, too.
Wise men.
Blogs thrive on links, and if other bloggers have articles they want to share here, that's to be encouraged. And the post was relevant to Morgellons, so I don't really see the issue (not that there can be an issue, given that it's my site, and my rules!).
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Reply to Martin @ 01:54
The reference to Morgellons was buried so deep in Dr*T's article that I missed it upon first reading, so apologies to you both.
Reply to RS @ 01:20
My point is that the British tabloids are all bad, not just the Daily Mail. Their primary function is to bleed money from the working class while feeding them swill to keep them distracted and ignorant of the real issues.
Harping on about the shortcomings of the Daily Mail while ignoring the others is a bit like preaching about the dangers of measles without ever mentioning mumps, chicken pox, rubella, etc. (I know, I know, I'm OT again!)
Just to show that I can post on topic if I really, really try:
Martin, I think that your Morgellons article is well-reasoned and sensitive. It certainly is a troublesome issue with no obvious solution. I also think that the response by Anonymous @ 7:53 is excellent, and his last paragraph is bang on.
Damn! That was me @ 04:26!
Normally I never comment when I continuously see people calling Morgellons DOP but its getting very old now. Read the new research and you will see it has been determined to be a bacteria and a fungus. I have this horrific disease and wish it was DOP! I can say that I currently have a crawling biting sensation but can't say if it is or isn't from a parasitic infection. I know if I were an outsider reading some of these outlandish posts on some of these websites, I would totally say they are all nuts! I had to stop going to some because of the ridiculous theories! I am a well educated female with a BSN degree and a masters in psychology, and DOP is actually very rare. I only hope in the near future a cure is found or everyone will be touched by this disease!
Rainbo
Hi Rainbo,
Could you please direct me to where I can find this new research?
Thanks, and hang in there!
Carl
@Rainbo: "Read the new research and you will see it has been determined to be a bacteria and a fungus."
I have every sympathy for your situation, but to the best of my knowledge this simply isn't the case. If you can point to this research I'd be interested to see it.
@Carl: "My point is that the British tabloids are all bad, not just the Daily
Mail."
Totally, although I think there may be a case for saying that the Mail are particularly bad. The problem is that you can't really draw any conclusions from what I do or don't blog about - I just don't have the time to read all the papers every day. The Daily Mail are a useful example of the wider disease in journalism.
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Jings, didn't mean to stir the pot so!
Carl - I hadn't come across Morgellon's until a few days ago when the blog post I wrote referred to it. MJR then put up one about the same topic and thought they were mutually complementary articles.
As to the tabloids, The Sun and The Daily Mail have got a higher circulation than all the other papers put together.
Therefore it is reasonable to assume that when it comes to impact, stories in The Sun and The DM will reach more people in the UK and hence more important to counteract when the journalism is questionable.
The Sun is pure tabloid. News, Tits, arse, gossip, blether, some politics yadda yadda.
The DM sets itself up as the moral voice of the UK, looking down on the tabloids. It sees itself as the voice of the normal white 'umble subject to her Majesty, whose main concerns are the unbridled immigration, house prices, the awful state of our hospitals & schools, the backdoor invasion of Islam, the infiltration of power by gayers, the disruption to modern life caused by people richer than they are, poorer than they are, different religion than they are, different colour than they are, different [fill in your own one here] than they are.
Their readers love to hear about how any quack remedy will allow them to continue their misconceptions about doctors and NHS. Did you know honey can cure cancer, kill superbugs, fight heart disease, counter ageing and shorten colds? (couldn't resist).
That is why the DM is the subject of this and many other blogs about the state of UK journalism.
(Glad to get that out of the system)
Thanks for the explanation, Dr*T. Some articles in the Daily Mail are commendable, however, such as this one: http://www.dailymail.co.uk/sciencetech/article-1177123/The-European-Crea...
It's featured in Martin's blog of May 5/09, Daily Mail Readers in Revolt Over Black Ancestors
It's the very fact that this "downmarket, formerly-Nazi-supporting, BBC-Hating, ITN-shares-owning, misogynist, factually-inaccurate tabloid rag" informed its readers the likelihood that early Europeans were likely brown skinned with somewhat African features that triggered the furious responses by some of the more bigoted DM readers. IMO the DM should be commended for risking the wrath of many of its readers by trying to educate them about our common ancestry.
It seems to me as if Martin's hatred of the DM is so passionate that even something praiseworthy is transformed into something loathsome merely by appearing in the Daily Mail!
The article itself isn't really much to commend - they've just republished a BBC press release promoting a new series. There are two key points that justify attacking the Daily Mail for the views expressed by their readers on that page though.
The first is that it is far from coincidence that so many Mail readers have these attitudes - the Mail panders to bigotry at every opportunity, whether it's their misogynistic treatment of women; mocking of any celebrities that look or behave a bit differently from the size-0 airhead stereotype; fuelling racial tensions by writing needlessly inflammatory rhetoric about e.g. British Muslims, and so on.
The second is that the Daily Mail comments are moderated. Every comment on that website is (according to the site's editors at least) approved by a moderator before it is posted. The fact then that overtly racist comments are allowed to appear on the site (and some on a more recent version of this story are more shocking still) is a damning indictment of the site editors.
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Fair enough, though considering that they are "BBC-Hating" and "ITN-shares-owning", it was jolly decent of them to publish a press release advertising a programme by their hated competitor, wasn't it?
I don't agree with "moderating", which is arguably just another word for censorship, so the fact that the moderators allowed the racist remarks doesn't particularly move me, ugly as the remarks were. Anyway, I must say I'm glad you don't "moderate" my comments, Martin, because I am inclined to be a little immoderate on occasion :)
BTW, your article on Propaganda & Holocaust Science in N. Korea was absolutely appalling! Good work, and well worth the read for those who can stomach it. Why on Earth isn't this ongoing atrocity more widely known???
It isn't widely known because the Government has covered it up.I now have over 45,000 families reporting to me alone. This is absolutely Disgusting at the way these patients have been treated.
Many are dying and comitting suicide because of this.
This is at epidemic and pandemic states.
Trish Springstead RN, MS, Doctoral candidate
@Anonymous
That's brilliant! So presumably you've got a great big pile of data that you'd be willing to anonymise and release to the rest of us in the scientific community so that we can do a parallel investigating of the type that the CDC are doing? I'd be more than willing to host it here, and then it gives everybody a chance to tackle the problem once and for all.
My e-mail is layscience@googlemail.com
What do you say?
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Anyway, I must say I'm glad you don't "moderate" my comments, Martin, because I am inclined to be a little immoderate on occasion :)Computer Science school | Nursing school
Europeans were likely brown skinned with somewhat African features that triggered the furious responses by some of the more bigoted DM readers. Social work school |
IMO the DM should be commended for risking the wrath of many of its readers by trying to educate them about our common ancestry.Performing Arts school | Accounting degree
Europeans were likely brown skinned with somewhat African features that triggered the furious responses by some of the more bigoted DM readers. Social work school |
IMO the DM should be commended for risking the wrath of many of its readers by trying to educate them about our common ancestry.Performing Arts school | Accounting degree