Learning from Morgellons
Harry Quinn Schone.
History and Philosophy of Science.
Department of Science and Technology Studies.
15,000 words.
1
Contents
I - Introduction 3
II - Failure 12
III - Community 25
IV - In Defence of Medicine 31
V - Conclusion and Discussion 35
Appendix 37
Bibliography 39
2
I - Introduction
Morgellons disease is both chronic and contested. Neither of these qualities are
particularly straightforward. ‘Chronic’ refers to the persistence or recurrence of
symptoms over a significant period of time. Whilst health organisations and medical
textbooks describe chronic diseases as noncommunicable conditions that are generally
incurable and last longer than three months, the significance here is social.
1
Does the
persistence of your illness affect your job? - your relationships? - your sense of self ?
Then it is chronic.
Many diseases are contested.
2
Arguments about precise aetiology, measurement of
symptoms, proper treatment all occur frequently in even the most established of
conditions. The ‘contested’ element in Morgellons is more fundamental; it is about
the legitimacy of the disease itself. This delegitimisation is a composite of
controversies regarding Morgellons’ aetiology, diagnosis, symptoms, prevalence,
treatment and history. This means that Morgellons ‘has no general medical
acceptance as a disease entity’.
3
Its almost totally disputed nature places it alongside
conditions such as Chronic Fatigue Syndrome (CFS), Gulf War Syndrome and
Chronic Lyme Disease.
4
It shares many features with these illnesses, most notably a
lack of clinical consensus regarding its aetiology, friction between patient and doctors’
conceptualisation of the disease and a highly politicised lay community. Because of
this, looking at Morgellons can offer valuable insights into how similar conditions
operate.
In this essay I will discuss how the vague and non-specific symptomatic features of
Morgellons leads to a conflict between doctors and patients over different aspects of
disease and what meanings we should attach to them. It is an informative example of
how disease advocacy groups organise and politicise themselves, utilising the internet
and more traditional networks to further their aims. This condition also represents a
failure of the biomedical model to adequately address the concerns of those suffering
from chronic illnesses of this type. A breakdown in trust has taken place, with serious
consequences for those involved and medicine more widely. As such, I will ask and
answer the following questions:
3
1
World Health Organisation:
http://www.who.int/topics/noncommunicable_diseases/en/
visited
21/08/14; The Center for Managing Chronic Disease:
http://cmcd.sph.umich.edu/what-is-chronic-
disease.html
visited 21/08/14
2
For an overview of ‘contested diseases’ as a concept see Rosenberg, C. E. ‘Contested boundaries: psychiatry,
disease, and diagnosis’ in Perspectives in Biology and Medicine, 2006, Vol. 49, No. 3, pp. 407-24; for a more in
depth exploration see Teghtsoonian, K. A. & Moss, P. (eds.) Contesting Illness: Processes and Practices, 2008,
University of Toronto Press, Canada
3
Mayne, P., English, J. S., Kilbane, E. J, Burke, J. M., Middelveen, M. J. & Stricker, R. ‘Morgellons: a novel
dermatological perspective as the multisystem infective disease borreliosis’ in F1000Research, 2013, Vol. 2, No.
118, doi:
10.12688/f1000research.2-118.v1
4
Note the many similarities these diseases have with the contested status of Morgellons: Swoboda, D. A.
‘The social construction of contested illness legitimacy: a grounded theory analysis’ in Qualitative Research in
Psychology, 2006, Vol. 3. pp. 233-251
- In what ways does Morgellons represent ‘failure’?
- How does the Morgellons ‘community’ operate and what does this tell us about
contested illness patient groups?
- How can we improve outcomes for individuals who suffer chronic, contested
illnesses?
My methodology is deliberately holistic, though it may seem at times to be slipshod.
Rare is it to find a subject small enough to be able to adopt this kind of approach, and
Morgellons presents one such an opportunity. I have looked extensively at the
majority of published literature on Morgellons, as well as developed a solid
understanding of the delusional infestation research which has obvious and
sometimes explicit crossovers. I have explored chronic illness narratives, looked at
patients’ experiences of pain and delved into contested disease debates. From the
social sciences I have appropriated work on oppositional consciousness and advocacy
groups. What I have also done is tried as far as possible to recognise the many
platforms where this disease expresses itself. This means using advocacy websites,
patient blogs, doctor’s guidance sites, video clips and radio shows. It also means
looking at newspaper reports, science blogs and discussion forums. These non-
traditional sources do present their own problems, notably varying accuracy and
partisanship, but it was important that I used them. They are where the disease lives
and breathes. I feel strongly that their influence, their feedback into people’s
perceptions, is as important to understanding the social existence of this disease as
any journal article.
Below is a brief introduction to ‘Morgellons’. This section is not intended to be
exhaustive, and many points will be returned to later. It is my intent that this section
will establish a clear and understandable basis from which to proceed, because it is
impossible to discuss what Morgellons is without first knowing its basic pathology,
controversial aspects and interested groups.
A short history of Morgellons
Morgellons sufferers report a diverse range of physiological complaints. The various
symptomatic constellations that are formed from different sources give a strong
impression of what might constitute Morgellons, but diagnostic uncertainty persists
due to the variety of sufficient but unnecessary symptoms. This ambiguity has led to
Morgellons patients being described as ‘a complicated and multidisciplinary
challenge’.
5
The primary locus of the disease is on, in, or under the skin, where patients report
painful and frustrating sensations of stinging, crawling and itching, accompanied by
raw cutaneous lesions which do not heal. It is argued by patients that these feelings
and sores are caused by the ‘distinguishing feature’ of the condition, the existence of
4
5
Accordino, R. E., Engler, D., Ginsburg, I. H. & Koo, J. ‘Morgellons Disease?’ in Dermatologic Therapy, 2006,
Vol. 21, No. 1, p. 8
protruding material from the skin.
6
Often described as ‘fibres’ or ‘filaments’, these
‘protruding’ items can normally only be viewed through a microscope.
7
Patients have
reported these fibres as being of varying length, colour and transparency.
8
There is a high incidence of related conditions that Morgellons patients also suffer
from including chronic fatigue, depression, OCD, ADHD, fibromyalgia, joint pain,
sleep problems, hair loss and neurological disorders as well as anxiety and substance
abuse/dependence.
9
The number of patients who suffer from comorbid psychological
conditions has been reported as high as 75%.
10
The direction of the causal link
between these co-morbid features and Morgellons is disputed. Most doctors believe
that the relationship with other conditions is correlative, not that they are
symptomatic of Morgellons, which is often the patient’s view.
11
In clinical settings, Morgellons sufferers have largely been diagnosed as having
delusions of parasitosis, a psychological condition where patients believe there to be
insects or unidentifiable objects about their person which cause considerable
discomfort.
12
Under the delusional interpretation of Morgellons favoured by doctors,
the open wounds are self-inflicted by patients attempting to relieve their symptoms,
the fibres are extracts of clothing and the co-morbidity with other conditions
indicates a predisposition towards mental rather than physical illness.
13
The frequency of this condition across populations is unknown, with the few
estimates that do exist putting the number in the tens of thousands. It is important to
recognise though that all Morgellons organisations maintain that the condition is
under-diagnosed to a large extent. The majority of reported cases come from the
western world, and women are more likely to suffer.
14
5
6
http://www.thecehf.org/about.html
visited 19/08/14
7
http://morgellonsdiseaseawareness.com/morgellons_photo_galleries/morgellons_fibers_in_skin
visited
20/08/14
8
Savely, V. R., Leitao, M. M. & Stricker, R. B. ‘The Mystery of Morgellons Disease: Infection or Delusion?’
in American Journal of Clinical Dermatology, 2006, Vol. 7, Iss. 1, p. 2
9
Savely, V. R., Leitao, M. M. & Stricker, R. B., 2006, p. 2; Ahmad, K. & Ramsay, B. ‘Delusional Parasitosis:
Lessons Learnt’ in Acta Dermato-Venereologica, 2009, Vol. 89., p. 167; Hylwa, S. A., Foster, A. A., Bury, J. E.,
Davis, M. D., Pittelkow, M. R. & Bostwick, J. M. ‘Delusional infestation is typically comorbid with other
psychiatric diagnoses: review of 54 patients receiving psychiatric evaluation at Mayo Clinic in Psychosomatics,
2012, Vol. 53, Iss. 3, pp. 258-65
10
Ibid., p. 264
11
Ibid., (Authors treat delusional infestation and Morgellons as synonymous)
12
Delusions of parasitosis can be called delusional infestation, delusions of infestation and is also known as
Ekbom syndrome.
13
Hylwa, S. A., Foster, A. A., Bury, J. E., Davis, M. D., Pittelkow, M. R. & Bostwick, J. M., 2012, pp. 258-65;
Pearson, M. L., Selby, J. V., Cantrell, V., Braden, C.R., et al ‘Clinical, Epidemiologic, Histopathologic and
Molecular Features of an Unexplained Dermopathy’ in PLoS ONE 7(1): e29908. doi:10.1371/journal.pone.
0029908
14
Ibid.
Much has been written chronicling the development and progress of Morgellons over
the last decade or so. To say that a ‘history’ has been established would be false; a
series of contentious points have been raised and in turn disputed, sometimes
vehemently, across a variety of mediums by a diverse set of contributors. Establishing
a clear narrative in this claustrophobic environment is a difficult task. This is made all
the harder because one section of those involved is as keen to establish Morgellons as
a historical and distinct condition as the other is to deny this. Those who wish to
discredit a Morgellons ‘history’ are normally those from the medical community who
believe it to be or probably be a spurious illness that is simply delusions of parasitosis
under a new moniker.
However, some sense can be made of what has happened. To make this as clear as
possible I will split the narrative between what occurred in the first decade or so of
this millennia and the claims made by some that Morgellons should be considered a
long-standing condition.
The first strand of the Morgellons story begins in 2001 when Mary Leitao, a biologist
from Pennsylvania, became concerned about a sore on her two year old son’s lip,
which was apparently struggling to heal. Treatment from healthcare professionals
proved ineffective, and she began to notice that fibres appeared to be coming from the
wound. After examining her son under a microscope, she became convinced that this
was the case, though in her effort to convince her doctors likewise she was diagnosed
with Munchausen by proxy.
15
In 2002 she founded and became executive director of
the Morgellons Research Foundation (MRF), which would become the primary
patient advocate group for Morgellons sufferers throughout the 2000s. Utilising the
internet and publicity campaigns on television and in the press, membership of the
research foundation grew to the point where the MRF claimed it had over 10,000
‘registered families’.
16
It is largely as a result of such efforts that a research community
was assembled around (and against) Morgellons, and journal articles began appearing
from 2005. The internal developments of this require closer attention and are
examined in the next section and in later chapters.
Other patient support organisations around the world formed in the latter part of the
decade, alongside numerous blogs and online comment pieces devoted to the topic
and university departments specialising in Morgellons research.
17
Although the MRF
has now ceased to exist, other organisations have filled the void, such as the Charles
6
15
Munchausen by proxy is a mental illness where a parent or caregiver exaggerates or fabricates medical
complaints on behalf of their children. See:
http://kidshealth.org/parent/general/sick/munchausen.html
visited 22/08/14
16
Freudenmann, R. W. & Lepping, P. ‘Delusional Infestation’ in Clin. Microbiol. Rev. 2009, Vol. 22, Issue 4, p.
708; Today the website of the defunct MRF claims there are 14,720 registered families
http://
www.morgellons.org
visited 15/08/14; The troublesome nature of counting ‘families’ rather than individuals
makes estimating actual numbers of self-registered patients difficult.
17
Oklahoma State University’s Center for Health Sciences is committed to furthering Morgellons research
under Dr. Randy Wymore
http://www.healthsciences.okstate.edu/morgellons/index.cfm
visited 24/07/14
E. Holman Morgellons Disease Foundation (CEHF), which funds research, galvanises
patients and organises annual conferences and events.
18
The second aspect of a Morgellons ‘history’ that must be considered is its novelty, or
lack thereof. The appellation ‘Morgellons’ was chosen by Leitao because of the
similarity of her son’s symptoms to those described in a 17th century work by Sir
Thomas Browne. It was intended to be a short-term solution, in her words a
‘placeholder’.
19
The many thousands who would assemble themselves under that
placeholder did not always see it that way however.
Some writers have traced the disease further beyond the Browne piece to Leonellus
Faventinus de Victoriis, writing in 1544, and argued that it continued under various
monikers until the first half of the 20th century, where it was last described in 1935.
20
This schema, which assumes that Morgellons is a rare, under-diagnosed condition
that has been misdiagnosed or ignored in the past is a difficult one to swallow, given
the troublesome nature of retrospective diagnosis and the lack of modern medical
continuity. Even the now famous Browne letter, where Leitao got her appellation,
does not strictly describe something we would recognise as ‘Morgellons’.
It also controverts claims that Morgellons is a new, emerging disease with a potential
environmental cause.
21
Proponents of this ‘novel’ view maintain that the condition is
a modern phenomenon, which is why it is important that further research is
conducted in order to explain exactly how this disease came to appear. Many of the
research papers also describe Morgellons as an ‘emerging condition’, but it is unclear
precisely what is meant by this.
22
Put simply, it cannot be both centuries old and also a
new condition.
Some patients appear to hold both views simultaneously. This may be most clearly
understood by saying that many feel like they suffered with Morgellons for years
before being able to reconcile their symptoms under a new label and fashion an
identity therewith. In this sense then, Morgellons, or the Morgellons label, is ‘new’.
But because they had suffered in silence and ignorance, they consider this condition to
have had a much longer dormant existence. The confusion and contradiction in this
exposition serves to underline what is a constant in any Morgellons narrative:
uncertain assertions in the face of the unknown.
7
18
See
http://www.thecehf.org
visited 23/07/14
19
She found it through reading Kellett, C.E. ‘Sir Thomas Browne and the disease called the Morgellons’ in
Ann Med Hist. 1935; 7: 467–79, though the only print copy of the reference I can find is Browne, T. ‘Religio
Medici, Hydriotaphia, and the Letter to a Friend’, Sampson Low, Son, and Marston, London 1869 p. 172;
Mary Leitao quoted in Molyneux, J. ‘AJN Reports: AKA ‘Morgellons’ in American Journal of Nursing, 2008,
Vol. 108, No. 5, p. 26
20
Accordino, R. E., Engler, D., Ginsburg, I. H., Koo, J., 2006, p. 9
21
Sometimes the historical and novel line are followed in the same article, see Dovigi, A. J., ‘Intraoral
Morgellons Disease or Delusional Parasitosis: A First Case Report’ in The American Journal of Dermatopathology,
2010, Vol. 32, No. 6, pp. 603-604
22
For example: Middelveen, M. J., Burugu, D., Poruri, A., Burke, J., Mayne, P. J., Sapi, E., Kahn, D. G. &
Stricker, R. B, ‘Association of spirochetal infection with Morgellons disease’ in F1000 Research, 2013, Vol 2,
No. 25 (doi:
10.12688/f1000research.2-25.v1
)
Research
Considering the short time period and limited incidence of the disease, there is a
fairly large amount of research that has been conducted. Still, peer-reviewed journal
research on Morgellons that collects data on significant numbers of patients is rare. A
PubMed search returns 48 results, which includes one literature review and one
medical ethics piece.
23
As Hylwa et al note, few of the pieces focus on physical biopsy
specimens or on artifacts obtained through patients themselves.
24
The result of this is
that on the whole, studies rely on case reports and short reviews of literature, offering
comment on symptoms, diagnosis and best practice.
These tend to assume epistemic diagnostic authority and normally state that to a
certain or absolute degree the authors believe Morgellons to be delusional.
25
They
believe that claims of fibres causing distress are spurious or likely to be spurious. The
effects of and reaction to this conviction will form an important point of discussion in
later chapters.
The Centre for Disease Control and Prevention (the CDC) is the only body that has
conducted large-scale research on Morgellons. In 2012, after four years of work, they
published a project which was described by the authors as ‘the most
comprehensive...study of persons who have symptoms consistent with the
unexplained dermopathy referred to as Morgellons’.
26
Whilst inconclusive, the
research eliminated environmental causes, and purported that there was no evidence
of a contagious component to the disease.
27
The overriding thrust of the report was
to suggest that Morgellons may be a modern incarnation of delusional infestation,
‘with which it shares a number of clinical and epidemiological features’.
28
However, it
could not be conclusively linked.
This does not encompass all of the work that has been done on Morgellons. There is
research that has been published which from the outset is committed to the somatic
‘reality’ of the condition. In these instances the causality of the disease has so far
proved elusive and potential treatment solutions are ‘rarer and less consistent’.
29
The
8
23
Retrieved 29/08/14
24
Hylwa, S. A., Foster, A. A., Bury, J. E., Davis, M. D., Pittelkow, M. R. & Bostwick, J. M. ‘Delusional
Infestation, Including Delusions of Parasitosis: Results of Histologic Examination of Skin Biopsy and
Patient-Provided Skin Specimens’ in The Archives of Dermatology, 2011, Vol. 147, Iss. 9, p. 1041 doi: 10.1001/
archdermatol.2011.114
25
Söderfeldt, Y. & Grob, D. ‘Information, Consent and Treatment of Patients with Morgellons Disease: An
Ethical Perspective’ in The American Journal of Clinical Dermatology, 2014, Vol. 15, p. 72
26
Pearson, M. L., Selby, J. V., Cantrell, V., Braden, C.R., et al ‘Clinical, Epidemiologic, Histopathologic and
Molecular Features of an Unexplained Dermopathy’ in PLoS ONE 7(1): e29908. doi:10.1371/journal.pone.
0029908
27
Ibid.
28
Ibid.
29
Söderfeldt, Y. & Grob, D., 2014, p. 73
number of scientists publishing papers of this ilk is quite small, often calling for larger
and more in-depth studies to be carried out. Of the speculative findings, there is some
suggestion that a connection with chronic Lyme disease might hold the key, meaning
that Morgellons can potentially be considered a contagious disease.
30
Chronic Lyme
disease itself is not free from disputation, which makes this link somewhat
troublesome. Other research has identified myiasis as a potential cause, which again
suggests a contagious element to Morgellons.
31
This is in direct contrast to what the
CDC report concludes.
Overall, a quite clear split can be discerned in the research conducted. One camp
assumes an ontological position of skepticism towards the legitimacy of Morgellons.
By casting doubt on the disease concept, their work serves to discredit or reframe the
symptoms as the patient’s would like them to be understood. Those conducting this
research have undertaken better funded, larger scale projects than the ‘other side’ and
I would argue that their findings represent the views of the majority of the medical
profession. Clashing with this work, implicitly but sometimes directly, is that which
takes Morgellons as an unexplained but fundamentally biological condition. They
remain determined to further their research agenda, spark debate about aetiology and
as a result discover possible treatments on the basis of somatic rather than
psychological discord.
The various papers published have been discussed in frank terms, both in and outside
of the normally formal and at least prima facie reverent sphere of journal politics.
Little love has been lost between sufferers, researchers, journalists and other observers
of developments in Morgellons. Almost all research that has been conducted which
does not point towards a somatic origin for this condition, that labels sufferers as
delusional or that considers Morgellons a phenomenon best dealt with through
psychiatry, meets fierce resistance from patient groups and research advocates. For
example the CDC report was criticised heavily upon publication by this faction. The
choice of health maintenance organisation, Kaiser Permanente, was said to be an
inappropriate choice which in many ways pre-determined the outcome of the study.
32
Both the methodology and the interpretation of results have also been queried by
prominent members of Morgellons advocacy groups, with the feeling that their long
campaigned for ‘big study’ amounted to the end rather than the beginning of debate.
It must be noted that these ringing condemnations straddle various publications,
opinion pieces and internet forums. Assessing their credibility and disinterestedness is
a difficult task. The level of personal investment in the topic from most of the
commentators is high.
9
30
Savely, V. R. & Stricker, R. B. ‘Morgellons disease: Analysis of a population with clinically confirmed
microscopic subcutaneous fibres of unknown etiology’ in Clinical, Cosmetic and Investigational Dermatology 2010,
Vol. 3, pp. 67-78; Middelveen, M. J., Stricker, R. B. et al ‘Association of spirochetal infection with Morgellons
disease’ [v1; ref status: indexed,
http://f1000r.es/8g
]
F1000Research 2013, Vol.
2, Iss.
25 (doi:
10.12688/
f1000research.2-25.v1
)
31
http://www.morgellonsuk.org.uk/micromyiasis.htm
32
Some felt that the CDC ignored existing (pro)Morgellons research and should not have chosen an health
insurance provider to assist the study:
http://www.rense.com/general80/fraudf.htm
On the other side of the divide, the research which has been conducted that
presupposes a somatic, discoverable cause for Morgellons has been dismissed as
‘dangerous pseudoscience’ by those in the medical establishment.
33
It has been noted
that the research being done on Morgellons from this stand-point emanates from the
same small group of researchers, whose credentials and personal integrity has been
questioned (see Chapter IV).
34
This criticism varies. There are those who believe the Morgellons infrastructure, with
its advocacy groups, forums and researchers to be an extension of their delusional
physical selves, who suffer from ‘Morgellons Syndrome, a disease that was invented in
2002’ [my emphasis].
35
A more empathetic strain of critics are those who are
committed to improving patient’s lives and view any research that feeds their beliefs to
be a barrier to effective treatment.
36
It is worth observing that there is a significant
professional imbalance between those who believe Morgellons to be psychological in
origin and those who don’t, the medical community vastly falling in the former camp.
The greater amount of research being conducted with a psychological cause in mind
has led to fairly predictable clinical guidance. The advice given to dermatologists and
physicians on the whole is to regard Morgellons as a psychological issue and a
potential by-word for delusional infestation. The disparity described above between
researchers who believe Morgellons to be psychological and those who subscribe to a
potentially somatic cause has been compared to the proportion of scientists who do
not believe in Darwinian evolution.
37
It has been suggested that journalists both
favouring an ‘underdog’ medical story and papers wanting bizarre human interest
features have fueled a misrepresentation of the totality of scientific certainty on the
topic.
38
As this short overview of some of the research conducted into Morgellons so far
demonstrates, nothing is straightforward, and consensus, if such a thing can be
achieved, is possible only amongst certain groups. To borrow terminology employed
by the Contested Illness Research Group at Brown University, what the variety of
research and social action surrounding Morgellons shows quite clearly is how
‘contestation amongst various actors’ interacts to shape the ‘dominant
10
33
Steven Salzberg, McKusick-Nathans Institute of Genetic Medicine, John Hopkins University School of
Medicine, USA responding to Middelveen, M. J., Stricker, R. B. et al, 2013
34
Mnookin, S. The Panic Virus: The True Story Behind the Vaccine-Autism Controversy, 2012, Simon & Schuster,
USA, p. 90; or for a more informal attack see
http://scienceblogs.com/whitecoatunderground/
2010/05/13/bad-science-done-badly-its-bad/
35
Ibid, p. 88
36
For example, Morgellons is described as ‘a fashionable self-diagnosis, propagated via the website of the
idiosyncratic ‘Morgellons Research Foundation’’ in Freudenmann, R. W., Kölle, M., Schönfeldt-Lecuona, C.,
Dieckmann, S., Harth, W. & Lepping, P., ‘Delusional Parasitosis and the Matchbox Sign Revisited: The
International Perspective’ in Acta Derm Venereol, 2010, Vol. 90, Issue 5, p. 518
37
Mnookin, S., 2012, p. 92
38
Ibid, pp. 92-95
epidemiological paradigm’.
39
This is described as ‘an embedded set of institutional
structures, beliefs and actions of academia, government, industry, nonprofit
organisations, health voluntaries and the media’.
40
Though it stretches the traditional
definition of ‘epidemiology’, it does so in a useful, social way, encompassing the
factors which contribute to the complex meanings behind beliefs about diseases, their
causes, and diagnostic strategies. In this case, despite outcry and consternation from
numerous sources, the established opinion on Morgellons, that which is disseminated
throughout those with diagnostic authority, repeated in the media and played out
regularly in local clinical settings is one of skepticism and concern for the
psychological rather than the somatic aspects of this condition. The struggle by
patients to change that outlook and to temper its consequences will form a large part
of my piece.
11
39
Brown, P., Morello-Frosch, R. & Zavestoski, S. Contested Illnesses: Citizens, Science, and Health Social Movements,
2012, University of California Press, USA, p. 84
40
Brown, P., McCormick, S., Mayer, B., Zavestoski, S., Morello-Frosch, R., Altman, R. G. & Senier, L. ‘A
Lab of Our Own’: Environmental Causation of Breast Cancer and Challenges to the Dominant
Epidemiological Paradigm’ in Science, Technology & Human Values, 2006, Vol. 31, No. 5, p. 500
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