The 1,000 Letters Lyme Campaign

The 1,000 Letters Lyme Campaign (Facebook group)

Per group description: This is a grassroots campaign to raise awareness about Lyme disease and other vector-borne illnesses. Our goal is to educate healthcare practitioners and politicians alike by sending them so many informative letters and articles that they can’t help but take notice. Let’s do it!

What it is, How It Works, How to Get Involved & FAQ (If you are not on facebook, or to share with others who are not, use the comment section to request contact info or additional documents referenced below)



New members, welcome to the 1,000 Letters Campaign! If you have any questions, please ask away! In a nutshell: We’re each writing ONE letter that we then mail to four recipients at a time. Some of us mail articleswith our letters or mail articles instead of letters. It’s your choice. 🙂


1. Decide if you’re going to write a letter or choose an article, and try to give yourself a “due date,” so getting it done is a solid priority.

  • We have two letter templates in the files section that you can use if you need help OR you can write your own letter. Some members have also posted their letters in the files section, in case you’d like to see some samples of what we’ve written. There are also members in the group who will help you write your letter or will edit your letter, if you’d like. Your letter does not have to be perfect or super long, but it can be if you want it to be. It’s up to you. It’s important to realize that nobody is going to sit down and read 60 letters. Instead they will read a handful and quickly understand our message (i.e., that chronic Lyme exists across the country and that we need help). After that, each received letter–whether read or not–will reinforce the idea that chronic Lyme exists. YOUR LETTER DOESN’T NEED TO BE READ TO MAKE AN IMPACT but IT DOES NEED TO BE SENT TO MAKE AN IMPACT. Think of your letter as a way for you to step in front of the recipient and announce that you (or a loved one) have chronic Lyme disease. We generally include:
    • how long we’ve been sick
    • about how many doctors and years it took to figure it out
    • our misdiagnoses
    • the impact not being able to get a proper diagnosis or adequate treatment has had on your life
    • what finally helped, if anything. If something has helped, please say so, as it further proves that something CAN be done to help us
  • If you’d rather send an article, we also have links to articles in the files section that you can use or you can find an article you like on your own.

2. The names and addresses of our 4 current recipients are always pinned to the top of the group page. Once you’ve got your letter written, please go there to get the addresses of who we’re mailing.Everyone mails the same four doctors to ensure that they get so many letters that they can’t continue to deny the existence of chronic Lyme disease across the country. We post four new names on the 15th and 30th of each month.

3. Print and mail your letter to those recipients. (Please let us know if you do not have access to a printer. There are people in the group who will print and mail you a packet of your letters so that you can participate.) Some of our members prefer to print out multiple copies of their letter at once and stuff them into stamped envelopes. That way, they only need to address them when we post the new names. Others save the letter on their computer and print as they go. It is up to you. 🙂

4. Post who you’ve mailed your letter to (hopefully all four of our current recipients) and please mention which state you reside in, so we count you for that state.

5. You’re done! Relax until the next mailing.

Q: What is the goal of this campaign?
A: Our goal is to raise awareness about Lyme disease and other tick-borne illnesses by sending high volumes of letters to our recipients so that they cannot continue to ignore us. There is power in numbers and there are so many of us! If we work together, we can bring about some important and much-needed change. As the campaign grows, we expect the media to pick up the story of what we’re doing. One of our members said a reporter in CT is already talking about doing a story on us. We are also working on putting our stories into a book, so if you’d like your story to be part of the book, let us know.

Q: If I’m currently too sick to participate, do I need to leave the group?
A: While we try to make this process as simple as possible on all participants, including providing letters you can use and mailing packets to you if you don’t have a printer, in order to encourage mailing twice a month, we understand what it is to be so sick that you can’t even lift your head off the pillow (been there, done that). You are welcome in this group regardless of whether you’re currently able to participate or not! You never know what kind of connection you might make or even how your presence might encourage someone else to mail. So, no, please do not leave the group just because you’re currently unable to actively mail your letter/article.

Q: I see that you’re mailing recipients 13-16. Can I just jump in? Where are the earlier recipients?
A: Yes, please jump in. This is an ongoing campaign, so start where you are. It’s okay. If you’re revved up and want to mail as many people as possible, we do also have a file of everyone we’ve mailed to date. You can go to that file–Whom We’ve Mailed–and send to all the recipients on the list, if you want.

Q: I was mailing but then fell behind. I’m overwhelmed. What do I do?
A: Everyone in this group is busy and the majority of us are sick to boot. It’s okay to fall behind and it’s not necessary to that you make up for every recipient you’ve missed. When you’re ready, just join back in with our current recipients who are always pinned to the top of the group page.

Q: I’m not sick, but my friend is. Can I still participate?
A: Absolutely! ANYONE can participate–you do not need to be sick yourself. Our goal is to raise awareness about Lyme disease, and the more active participants we have, the bigger impact we can make.

Q: Can I share this campaign on my FB page or with my local Lyme support group?
A: By all means, share it wide and far! Our goal is to raise awareness about Lyme disease, and the more active participants we have, the bigger impact we can make.

Q: I don’t have access to a printer. Should I hand-write my letters?
A: While there’s nothing wrong with a handwritten letter, writing 8 of them per month will get old quickly. Instead, we have members in the group who have offered to print and mail packets of letters to those who can’t print them on their own.

Q: Can’t we just email or fax our letters?
A: We could but we don’t believe they will make the same impact. An email or a fax (most are digital these days) is invisible except to the one person who receives it. The recipient can then simply quietly delete it. A letter, on the other hand, has to be handled and opened, even if it ultimately gets thrown out. And if the postman walks in with 23 letters on the same day, he or she might comment on it and other office members may take note, see the letters as well and ask what they’re about, thereby generating a discussion about Lyme disease. However, we haveconsidered providing fax numbers to our members who reside in other countries, so that they can participate as well.

Q: Where do you get the names of our recipients?
A: Currently, group members submit the names of doctors they’d like to see educated, but we also plan to mail the media, politicians and others. We also periodically engage in “bonus mailings.” For instance, right now we’re mailing the post office to request a Lyme disease awareness postage stamp. If you’d like to add the name of someone to be mailed [join group or use comment section below to request contact information and options]. Please be sure to confirm the mailing address of anyone you add to our sheet by calling the office directly and asking for the full mailing address for sending Dr. X a card.Please do not look on the Internet as a means of confirming the address as the information there is sometimes outdated. The office itself can tell you if the mailing address differs from the office address. Also, sometimes doctors change practices or retire, and sometimes there’s a simple building name or suite number that needs to be included when mailing.


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