Lyme Disease Awareness 2015 ~ Five Things You Can Do
Lyme Disease, caused by the bacteria Borrelia burgdorferi (and related strains of bacterial spirochetes), is an unbelievably complicated disease. It is complicated to diagnose, complicated to treat, complicated to understand, and complicated to live with. It mimics numerous other complicated illnesses and it is especially difficult to treat if not diagnosed and treated right away.
And this...is just the short-list of issues. The CDC announced in late 2013 that they have revised their estimate of new annual cases in the U.S. from 30,000 per year to 300,000 new cases per year.
Most of these cases will not be diagnosed during the acute phase of the illness, and most of the percentages and statements you will commonly read and hear about the effectiveness of Lyme Disease treatment apply only to the small minority of cases (less than 10% by most estimates) diagnosed during the acute phase. Delayed treatment is an entirely different situation.
To make matters worse, there are numerous myths and outdated facts misleading doctors and patients. These incorrect notions, paired with a highly problematic testing strategy, further complicate early and later diagnosis, meaning most patients will remain ill for years, rather than weeks (as might be the case if diagnosed early).
As much as this may seem to over-states the case, it sadly does not come close to adequately describing the complexity of this now-global epidemic.
Patients desperately need better awareness, support, diagnosis, and care.
1. Support a Lyme Disease Awareness U.S. Postage Stamp.
Writing a letter of interest the Citizens' Stamp Advisory Board will help demonstrate national interest in this idea, which could help it become reality.
This can be a simple letter of your own creation, or you can use a template devised by Lyme Disease patients to express your interest.
Patients and advocates that have written letters so far have been receiving responses and have been told that national interest is a factor in their decision.
This could become a reality with your help!
Although patients have begun writing letters, we need much higher numbers to make this happen. With updated CDC estimates of 300,000 or more new cases per year (compared to the previous estimate of 30,000 cases a year), this is an issue truly deserving of improving national awareness in any and all possible ways.
What to Do
By following this link, you can:
- Read about the evolution of this idea;
- Read about the groups working on it;
- Read and or use the template provided;
- Find links to further information and efforts.
If you know right now what you'd like to say or prefer to fly solo, send your thoughts to the following address:
Citizens’ Stamp Advisory Committee
475 L’Enfant Plaza SW, Room 3300
Washington, DC 20260-3501
If you write a letter, the patients working on this would benefit from knowing about it so they can have an idea of how many people have written in support. If you comment here or at the link above they will get the message through me, but you can also see multiple ways to inform them via Facebook groups or other contact routes.
2. Join the 1,000 Letters Lyme Campaign
Lyme patients from all over the country (and beyond) began writing letters to doctors in 2014 in order to spread awareness. Twice a month the group selects four doctors to receive letters from all participating patients.
The campaign was started by Lyme Disease patient Sheila Bush of New York, who has been away from her job recovering from the debilitating impacts of Lyme disease. She single-handed-ly recruited hundreds of patients to write letters before finally recruiting help from group members in order to keep track of how many participants have finished their letters, who needs help, and how many participants have mailed letters to each selected recipient.
Sheila has also edited numerous letters for patients and additional materials produced by patients for awareness purposes (including at least one previous Lyme Disease hub, Why Are Lyme Disease Patients Waiting Years For Treatment?). At least one other hub pages author is also a participant in the campaign (see hub articles by 'donotfear' about her Lyme Disease Story).
Although doctors are the targeted recipients so far, there will eventually be additional groups of media and political representative recipients, and additional efforts, slated for future phases of this campaign.
Participants write a letter about their experiences or the facts about Lyme Disease that care providers need to better understand, or select one or more peer reviewed journal article to mail to each selected recipient.
Most recipients are doctors who misdiagnosed a patient later found to be actually suffering from Lyme Disease. But recipient doctors have also disregarded test results or symptoms, or mistakenly failed to utilize clinical diagnostic criteria in evaluating (or failing to evaluate) a patient for Lyme Disease.
We need to capture the attention of the selected recipients by sending hundreds of letters at once, sharing our stories and pointing them toward better information.
What To Do
The simplest way to join in is to request to joint the group on facebook, where you will find instructions, example letters, letter templates, additional resources, and hundreds of supportive campaign members.
You can also participate without joining the group or without being on facebook. I have instructions and examples posted on my Lyme Disease blog here. I can help you get signed up without facebook via comments on this hub and/or via the link to my blog (Invisibly Lyme Montana).
- Sign up to participate (with or without facebook, with the facebook group being the easiest);
- Write a letter or select a peer reviewed journal article to mail (templates and examples provided via links above);
- Watch for new recipients to be posted twice a month (typically four recipients at a time);
- Mail letters to recipients and post in the group or let your contact know, so your letters can be tallied for each recipient.
Have You Been Infected?
Have Your Ever Been Treated For Lyme Disease?
Lyme Disease Challenge Via Social Media
3. Participate in The Lyme Disease Challenge Starting March 2015
This is a grassroots patient campaign to raise awareness and funds for Lyme Disease. Although the action part of the campaign begins March 2015, the campaign has gained international momentum with thousands of patients participating in consensus planning and outreach for several months leading up to its March 2015 launch.
The groups founders and core team members are described here on the Lyme Disease Challenge Website. Group members voted on strategies and objectives, opting to launch the campaign well in advance of May, which is Lyme Awareness Month, in order to gain momentum in advance, and continuing on well after. The campaign does not in any way replace on-going awareness campaigns or events scheduled during May.
Participants are urged to share the event via social media platforms and be prepared to help "Take a Bite Out of Lyme".
Better research, better testing, and greater public awareness for Lyme Disease. This campaign will also raise funds toward achieving these goals.
What To Do
- Visit, save, like, and share the campaign website and social media accounts (see list here for twitter, instagrem, pinterest, and facebook);
- Take a picture or make a video of yourself biting a lyme and challenge additional people, as per instructions here;
- Share your photo or video using #LymeDiseaseChallenge and @LymeDiseaseChallenge
The primary participation steps are to "Take a Bite, Share a Fact, and Pass it On".
Lyme Disease Challenge 2015 ~ ChrisBitesLyme ~ Starts March 1st
4. Participate in Lyme Ribbons 2015
This is another awareness campaign gaining momentum that as of the beginning of 2015 already had thousands of participants planning to participate. Additional information will be released as May 2015 approaches, but members have begun buying green ribbons to tie around trees in their yards and communities starting May 2015.
Larger efforts, such as tying up ribbons in public parks or downtown venues, will be permitted (as applicable) and implemented by local citizens or Lyme groups nationwide.
Funds have been raised for cooperative efforts and for participants who cannot get out to buy ribbon or cannot afford to.
What is Needed
Public awareness for Lyme Disease, raised through public participation in the event and sharing of information surrounding the event.
What To Do
- Find Lyme Ribbons 2015 through their event page on facebook and join the event;
- Find, like, and share the group's pages on Instagram, Twitter, and Pinterest;
- Invite friends and share the information;
- Buy lime green ribbons to tie up in your yard or plan a larger permitted event.
Lyme Ribbons 2015 Video by Heather Haynes
5. Support Any of These Groups' Efforts and Learn More About Lyme
There are a number of non-profit organizations making a real difference for patients and support of their work is critical. In some cases it may be donations primarily needed, but in all cases, reading and sharing their resources helps spread awareness and helps the groups remain visible.
There are groups and efforts of all sizes working to make change through campaigns and efforts ranging from collecting patient photos and stories to fighting for Lyme legislation (state and federal) or organizing national rallies, vigils, and protests.
Activism Events, Legislation, Awareness Efforts
- MayDay IDSA Protest 2015, Arlington VA (April 28-May 2)
- Ticked Off On Lyme WA (proposed state legislation)
- Gibson Bill (proposed federal legislation)
- Faces of Lyme
- Project 300K
- Lyme Group Guide (list of Facebook groups)
- Lyme Disease Eugene Oregon
There are a number of Hub Pages articles about Lyme Disease that describe the myths, politics, and flawed testing protocols that are leaving patients in the lurch. There are only a small handful containing typical misnomers, but a majority are written by patients and shed a lot of light on these issues and the hurdles patients face.
An award winning documentary (well worth your time to watch) touches on almost all of the major areas of debate and contention keeping patients from appropriate diagnosis and care. I highly recommend watching and sharing the movie "Under Our Skin" and, if it is anything like it's predecessor, it's sequel "Emergence".
It is important to understand, prior to extensive reading on Lyme Disease, that you will have to filter past and double-check much of what you read on the CDC and major medical websites. The group most often referred to by these entities (the Infectious Disease Society of America (IDSA)) is the group responsible for misdirecting diagnosis and care through highly inadequate guidelines that utilized between one and four flawed studies and disregarded over 300 peer reviewed studies. These guidelines have been the subject of congressional investigation and have caused considerable harm to patients.
When we say we need better research, this is why it is important to understand that we also need appropriate consideration of existing research, which is currently not occurring.
A primary example is the frequency of statements from CDC officials and IDSA physicians that there is "no evidence" of Chronic Lyme Disease, when in fact there are hundreds of peer reviewed studies and articles that provide evidence of the persistence of Lyme Disease.
Important topics, discrepancies, and myths are covered at length in the following previous hubs and articles:
- Why Are Lyme Patients Still Waiting Years For Treatment?
- Consequences of Long Term Lyme Disease Infection
- Better Diagnosis and Treatment of Lyme Disease, Part 1:Introduction to Dangerous Misinformation
- Better Diagnosis and Treatment of Lyme Disease, Part 2: Assessing Credibility
- Yolanda Foster Bashing Author Doctor Forgot to Research Lyme Disease