Investigating Morgellons Syndrome
Lyme Disease
Lyme is a tick borne infection which has a number of different symptoms. Often those infected will develop a characteristic ‘bulls-eye’ skin rash - erythema chronicum migrans (EM) - and flu like symptoms, but other symptoms include joint pain and heart palpitations.
Chronic symptoms, where the infection has gone untreated, are extremely serious and include arthritis, muscle-twitching, swelling of the brain and psychological disorders such as sleep disruption, memory loss and mood swings. With an incubation period of just 1-2 days or sometimes as long as months or even years, Lyme disease has been difficult to identify as a unique and specific condition.
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However, it was far from inevitable that LD would end up classed as a new, distinct disease and it is possible to speculate that if the dermatologists involved early on had been solely responsible for the investigation it is likely that they would not have given the same attention to the arthritic element and ‘newness’ of the ailment.
One of the problems in diagnosing chronic LD is that the use of antibiotics has made it difficult to know how the disease presents in its later stages, this is further complicated by its non-specific symptoms and the propensity of chronic infection to follow an unpredictable course.
Other problems include the fact that there is no perfect test for infection, that antibiotics can mask positive blood tests and therefore even those infected can show a negative result, that the disease is often only definable by its symptoms and that when a test is employed a positive result indicates exposure but not necessarily infection.
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increasingly viewed as an elusive clinical entity, despite its straightforward textbook description.
It is notable that media coverage and commercial exploitation of tests and treatments consistently masks the scientific complexity and uncertainty surrounding the disease. The fact that it is recognized at all seems as much down to social factors as scientific ones and much of the initial impetus was the result of fascination with the idea of a new disease.
Disease Construction
It is clear then, that ‘diseases’ are constructed ‘socially’ as much as ‘medically’. CFS needed an early link with EBV to give it legitimacy. When that link was subsequently disproved the idea of CFS had become sufficiently strong to survive and then prosper with a vigourous, organized and politicized advocacy.
When the possibility of Lyme Disease emerged, as a result of ecological and demographic pressures – expanding suburbs causing rural farmland to be transformed into woodland that is home to the deer that carry the infectious ticks - it offered something for all stakeholders; scientists (new disease entity), doctors (new diagnosis possibilities), patients (treatment possibilities) and media (new stories).
Implications for Morgellons
The emergence of Morgellons has much in common with the way in which both CFS and Lyme have emerged. The link with Lyme (most Morgellons patients have tested positive for Lyme Disease) is reminiscent of the way CFS was linked with EBV and offers some form of medical authenticity. There is also a growing advocacy for Morgellons, primarily from sufferers, but also, significantly, within the medical establishment itself.
However, in order to gain credibility and recognition by the medical establishment Morgellons will need to be much more narrowly defined and offer a more specific diagnosis.