Advocacy Media Page

[government] [media] [stories from Morgellons Sufferers] 

Ways to get involved:

-         Send “thank you notes” in response to positive media coverage.

-         Send “educational letters” to in response to negative media coverage – let the source know in a respectful, professional way why their coverage did not reflect the reality of living with this disease.  

-         Reach out to national and local stations and newspapers to educate them about Morgellons Disease and request coverage.  

-         Volunteer to be interviewed by the media.  We periodically send emails to our registrants in a given area asking them to participate in this way.  

Sample letter to the media:

I am writing to ask you to help inform the public and health professionals about a newly emerging disease called Morgellons disease.  Thousands of people's lives have been affected by this serious and devastating disease, and I am asking you to please help raise awareness.

On August 1,2007, the CDC issued the following statement:  "Morgellons is an unexplained and debilitating condition that has emerged as a public health concern.  Recently, the Centers for Disease Control and Prevention (CDC) has received an increased number of inquiries from the public, health care providers, public health officials, Congress, and the media regarding this condition.   Persons who suffer from this condition report a range of coetaneous symptoms including crawling, biting and stinging sensations; granules, threads or black speck-like materials on or beneath the skin; and/or skin lesions (e.g., rashes or sores) and some sufferers also report systemic manifestations such as fatigue, mental confusion, short term memory loss, joint pain, and changes in vision.  Moreover, some who suffer from this condition appear to have substantial morbidity and social dysfunction, which can include decreased work productivity or job loss, total disability, familial estrangement, divorce, loss of child custody, home abandonment, and suicidal ideation."  The CDC further calls this disease an "emerging public health problem."

For information about the current CDC Morgellons investigation, please see the CDC media telebriefing:

CDC/Kaiser Permanente media telebriefing. 

It is difficult to understand the tremendous suffering caused by the disease.  Many people report feeling abandoned by the medical community as they experience increasingly bizarre, disfiguring and painful symptoms, while often being unable to receive medical treatment for their condition.  A large number of patients become financially devastated and without health insurance because they can no longer work.  Most people who suffer from Morgellons disease report feeling frightened and helpless. 

Sincerely,