ME Activist Basics: Bird-Dogging and YOU!

Bird-dog: (verb) search out or pursue with dogged determination.
Contact with elected officials at town hall meetings cannot be overvalued. Handfuls of bird-doggers attend meetings around the country and change the course of history everyday.  Never heard of bird-dogging?  Bird-dogging is a strategy used by activists who seek out elected officials, pin them down with specific questions or information, and retrieve their views.  It has nothing to do with your sweet dog Max or your amazing parrot Tweety Bird and everything to do with activism in action!  You simply show up at an event hosted by an elected official to raise awareness about your issue. You ask them about their commitment on the issue, and ask them a question they might not want to answer in order to get them on the record and to educate others at the event.
In the U.S., congressional representatives are home for most of February and will likely be holding meetings or events during the month. Check out this spreadsheet to see where and what they will be doing.
Once you find out where an elected official is going to hold their event follow these simple bird-dogging tips adapted from the Friends Committee on National Legislation.

  1. Arrive early.
  2. Have your questions ready. Brief, fact-based, and direct is best.
  3. Ask your questions early in the event.
  4. Position yourself in the official’s path. Ask your question or make your statement as you reach out to shake their hand.
  5. Bring other people with you and spread out. This improves odds that more than one of you get to speak.
  6. Know your representative’s position. Start your question in a way that show’s you know something about them (“You have said you’d like to increase clinical care services for people with disabilities….”)
  7. Be calm and reasonable. Maintain a respectful tone.
  8. Take notes. Track their responses.
  9. Be prepared to speak with the media. Journalists attend these events and may want to speak with you.
  10. Be creative and improvise when necessary.
  11. Share what you have learned. Post on social media. Write a press release.

Recently, Scott Simpson (a person living with ME) engaged in bird-dogging when he and other activists showed up at Canadian Health Minister Jane Philpott’s meet-and-greet event.  The result?  He got to speak with her face-to-face about issues important to the ME community during the event, set up a future meeting with her to continue the conversation, and got press coverage! Read the article about their bird-dogging success here.
Need an Idea for Bird-Dogging?
Many people with ME across the United States depend on Medicare, Medicaid, or some form of the Affordable Care Act (ACA) for healthcare. Find a town hall event on this list and demand that any ACA replacement cover more people with less out-of-pocket costs. Make these demands directly and publicly to your elected officials via bird-dogging.
Housing Works is mobilizing trainings for people who want to fight for health care. Interested in receiving bird-dog training?  If you can gather 15-20 people between Feb 6 and Feb 20 for 90 minutes, Housing Works will send organizers (or help yours) to train your group on how to speak truth to power and protect (to the best of our ability) the ACA, Medicaid, and Medicare. They can also do webinars for your group for bird-dog trainings and conference calls, but they are prioritizing in-person organizing. Just like with town hall meetings, nothing tops the efficacy of in-person!  Please contact Paul Davis at [email protected] for more information.
Need ME Bird-Dogging Talking Points? 
The #MEAction Fact Sheet with sources is nearly ready! If you plan to attend an event, please email info@meaction for the updated Fact Sheet that you can give your congressperson.

  • Comparisons: ME strikes up to 1-2.5 million Americans.  And people with ME score more poorly on quality of life surveys than patients with multiple sclerosis, stroke, diabetes, renal failure, lung disease, heart failure and various cancers.
  • The cause is unknown, there is no cure, and there is not even one FDA-approved treatment. Recovery is rare.
  • Compared with other diseases with similar impact and prevalence, ME receives the fewest research dollars from the federal government.
  • In 2016, the NIH spent about $2 per patient per year.
  • Americans with ME face a severe crisis in clinical care. There are fewer than 20 ME expert clinicians in the United States to support the estimated 1 – 2.5 million Americans with this disease.
  • In your district, there are an estimated XXXX number of people with ME. Look up the number of people with ME in your representative’s district using this prevalence spreadsheet. (If you need help with this, email [email protected]).
  • The direct and indirect economic costs of ME to the United States has been estimated at between 17 and 24 billion dollars annually, yet the National Institute of Health has never invested more than $7 million per year on ME  research. This makes no economic sense.
  • Likelihood of success: Researchers for ME  have estimated that this disease can be solved in 5-10 years if adequate funding is provided.

ME activists need to be dogged about letting their representatives know that this disease needs urgent, serious attention.


5 thoughts on “ME Activist Basics: Bird-Dogging and YOU!”

  1. This strategy absolutely works! Thank you for posting it. Bob and I have used it many times with Senators, including Sen. Reid. It is how we got the Obama Promise, and got some follow up to it. Dr. Ron Davis sat next to NIH Director Dr. Collins at a celebratory dinner and pushed him to act.

  2. Hi MEAction,
    Thank you very much for the bird-dog suggestions.
    And, way to go Scott and Jeff!!! I hope your meeting with Minister Philpott is very productive. Thank you so very much for your work on this!
    The intransigence of Health Canada’s attitude about ME, versus the volume of compelling peer reviewed science, and disease burden data supplied to their offices is astounding! It appears that what also counts is who is providing Health Canada with this information: ” ‘ Almost every week, I have a different group of advocates that come to me speaking of specific syndromes, or disease conditions or health issues asking for a national strategy,” Philpott told Simpson, adding she is not convinced that a national strategy for every specific medical condition is helpful.’ ” (from the article cited here)
    The them versus us attitude, and the disdain for the ME community, and other disease advocates, appears clear.” Advocates” = outsiders, crackpots, uneducated, and uninformed plebians. One wonders who the Minister would be more receptive to? Scientists? But, maybe not if they are “advocate” scientists. This is the same attitude PWME may encounter when they try to supply peer reviewed science to many professional health care workers.
    This negative reception from Minister Philpott is surprising given the recent positive Canadian Institutes of Health Research statement re the biological basis of ME. It’s also interesting that Minister Philpott does meet with disease advocates every week, but has refused to have any follow up meetings with the ME community, despite a tremendous effort by the community to organize a meeting. There was, as I understand it, one abbreviated meeting last Spring with one of Minister Philpott’s policy advisers. Let’s hope Minister Philpott attends this next meeting in person.
    Health Canada does not list ME or CFS as a disease on its website:
    The Public Health Agency, a branch of Health Canada has info on CFS, however, Health Canada, the umbrella organization, does not list ME or CFS as a disease. Another telling fact about how much progress is still needed.
    On a more local note, it seems members of provincial legislatures (MLAs) need more awareness about ME. My local MLA has been in office for 8 years, and had never been approached by anyone about ME until recently. Granted, the job shouldn’t be left to those with ME. Government officials should see the public health gap and fix it. But, it hasn’t worked that way! My MLA also said if PWME are too sick to advocate from themselves, then friends and family should, as they do with other illnesses. That took more explaining re the stigma and disbelief around this disease. As we know, friends and family don’t necessarily rally round the PWME.
    Thanks again, Scott and Jeff, and MEAction! Scott and Jeff, best of luck for your meeting with Minister Philpott!

  3. When our new Liberal government came to power in November 2015, the Prime Minister, Justin Trudeau, drafted a letter to each of his cabinet ministers outlining his expectations of them. The following is an excerpt from Mr. Trudeau’s letter to the federal Health Minister Dr. Jane Philpott. You can see the complete letter at:
    “Minister of Health Mandate Letter
    The TeamMandate LettersMinister of Health Mandate Letter
    Office of the Prime Minister
    Dear Dr. Philpott:
    I am honoured that you have agreed to serve Canadians as Minister of Health.
    We have promised Canadians a government that will bring real change – in both what we do and how we do it. Canadians sent a clear message in this election, and our platform offered a new, ambitious plan for a strong and growing middle class. Canadians expect us to fulfill our commitments, and it is my expectation that you will do your part in delivering on those promises to Canadians…
    As Minister, you will be held accountable for our commitment to bring a different style of leadership to government. This will include: close collaboration with your colleagues; meaningful engagement with Opposition Members of Parliament, Parliamentary Committees and the public service; constructive dialogue with Canadians, civil society, and stakeholders, including business, organized labour, the broader public sector, and the not-for-profit and charitable sectors; and identifying ways to find solutions and avoid escalating conflicts unnecessarily. As well, members of the Parliamentary Press Gallery, indeed all journalists in Canada and abroad, are professionals who, by asking necessary questions, contribute in an important way to the democratic process. Your professionalism and engagement with them is essential.”
    “…constructive dialogue with Canadians…stakeholders…not-for-profit and charitable sectors; and identifying ways to find solutions and avoid escalating conflicts unnecessarily.”
    Dismissing and disdaining not-for-profit representatives speaking for hundreds of thousands of very debilitated Canadians, is a failure to fulfill one’s mandate to achieve constructive dialogue, identify ways to find solutions and avoid escalating conflicts unnecessarily. Dismissing the overwhelming amount of evidence-based science, and data provided by these advocates, is also a failure to demonstrate meaningful engagement, and constructive dialogue.
    It is Minister Philpott’s job to meet with, and listen to members of the public; not view, and treat these groups and individuals as an impediment to her real work. And, it is part of her job to act to improve the lives and health care of Canadians. All Canadians.

    There is nowhere to live with M.E. once my folks are not here anymore!
    Please give them the TRUE SOB STORY!
    Please don’t candycoat things one bit! 25+ years BEDRIDDEN and NOTHING TANGIBLE at all!

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