LYME DISEASE ADVOCACY
Getting involved in Lyme disease advocacy is not difficult, but it is very important and empowering. Becoming an advocate gives patients a chance to speak out about their experiences with tick-borne illnesses. This section offers information that will help in Lyme disease advocacy efforts.
BACKGROUND INFO:
There has been a long-standing controversy in the medical community as to
whether or not Lyme disease is easily diagnosed, treated and cured. One
group states that diagnosis is easy and that Lyme disease is almost always
cured
with 4 weeks of antibiotics. The other side of the controversy is
supported by those who suffer from chronic Lyme symptoms and the
physicians
who treat them. They
contend that the persistence of Lyme disease symptoms beyond the 4 week
treatment is due to the persistence of the Lyme disease bacterial
infection and/or to the presence of co-infection. They attest to the fact
that they do much better when treated beyond those 4 weeks of antibiotic
treatment. This subjective experience is supported by a body of
peer-reviewed scientific research that shows that the Lyme bacterium can
survive this 'standard' treatment.
Because this controversy has given rise to medical licensing disputes, severe illness from delayed diagnoses and treatments, and insurance disputes, patients have recognized the importance of getting involved in order to protect their treatments. This section provides information on upcoming and past events, ongoing activities, and tools to assist in one's own efforts.
SUGGESTIONS:
The most fundamental way patients can
participate
is to
spread awareness about their disease. This can involve many things
such as: educating people about prevention
and diagnosis, distributing brochures and articles, bumper stickers,
writing to newspapers, writing to legislators, fundraising, etc.
At the very least, every Lyme patient should write to their legislators (local, state and federal) to educate them about this disease. Keep in mind that your personal words are valued more than a hundred form letters. Legislators listen to personal visits, phone calls and personal letters much more than they listen to form letters, post cards, and petitions.
Another simple way to spread correct information is by writing letters to editors. If you join the LymeInfo Email List you will receive daily news items. In many of the messages the editor's contact email is provided. You may choose to write a letter to the editor to either correct misinformation, encourage additional articles, or pursue another avenue. For more tips, see Advocacy Info.
NOTE: Because this website is a directory to Lyme disease advocacy resources on the web, many of the links will take you off the lymeinfo website. Therefore, please verify with individual sites the status of any ongoing activities in any situation where there is uncertainty.
MORE INFO:- History of Federal Lyme Legislation
- Blog: Lyme Policy Wonk
- Legislative Recap
- Brochures and Flyers
- How to get an article into your local paper
