Each May, The Mayday Project hosts a rally outside of the Infectious Disease Society of America’s Headquarters in Arlington, VA, to raise public awareness for Lyme Disease and for the damage being done by the outdated and dangerously flawed IDSA Lyme Disease Treatment Guidelines, and to fight for change.  Patients travel from around the region and the nation to participate.

This year also included a ‘We The People’ rally on Capitol Hill (May 19) and a rally outside of the CDC’s offices in Atlanta, Georgia, simultaneous to the rally at IDSA Headquarters on May 20.  There was also a day for patients at the National Zoo with lunch hosted by NatCapLyme and a reading from author Nancy Fox (which I sadly couldn’t stay for).

A highlight in my plans to attend the rallies this year was a Science and Policy Forum held by the Lyme Patient Advocacy Project and Lyme Action Network on May 19 with a commendable list of speakers and topics.

For those that need it, there is background discussion in the closing sections on the issues that brought us here, and there will soon be a ‘catch-up’ post with a number of background and recent development links, for folks like myself that have been ill and would like to get back up to speed.  If you are a reader that will be distracted by your lack of familiarity with these issues, you may wish to read the “Why We Protest” section first.

Getting There ~ Adventures in Standby Travel

I traveled from Montana again this year, flying as a standby passenger through my husband’s summer job. I always mention this, because I would not be able to come to rallies if I weren’t able to fly for free, but it is challenging to say the least. Also because my husband works very hard at both jobs, and the sacrifices a Lyme spouse makes daily are enormous and ALWAYS worth note.  I always appreciate the spouses that attend the rallies, and I appreciate the sacrifices others of our spouses make to make our travels possible.

I was pretty nervous about the travel this year again, since I have been fairly house-bound over recent months, and outings have been few and far between.  Social settings even more so.

Traveling standby, my seats on each flight are subject to last-minute availability, but my travel was delayed this time by technical difficulties more than seat availability.  Two flights I was counting on were delayed pending repair or alternate planes being brought in, which led to an overnight stay in Detroit Wednesday night and missing most of Thursday’s daytime rally.

Photo by Heather Haynes, used with permission. IDSA Headquarters, May 2016.

I was fortunate to room with a very good Lyme patient friend, Heather Haynes, and her husband, who also missed most of Thursday by retrieving me from the airport.  I couldn’t have done it this year without their help and support, in addition to spending in-person quality time with a far-away very dear friend.

Heather rallied after being hospitalized the previous week and was dealing with significant pain while traveling and attending. Sadly, after flight delays and long Lyme conversations in airports, I know I was not very good company.

It felt like most of the attending patients I frequently consort with were much harder hit by travel and exertion this year compared to last year by the time we all arrived, myself included.  Some had to leave early after their exertions the first day, and I have to admit I am concerned about several folks this week as we all return home.  Heather, sadly, wound up back at the hospital by mid-week following the rally, though so far she has not been kept overnight.

Capitol Hill ~ Day One

We unfortunately arrived just after the group Lyme Disease Challenge bite had occurred, but the photos shared from the bite were great and well-distributed on social media.

Mayday Project Photo, Capitol Hill, Lyme Disease Challenge, We the People Rally, May 2016

It was a hot and tiring day, but fortunately not dangerously hot, as was the case in San Diego last fall, outside the IDSA Infectious Disease Week (ID) Conference. Still, attempting to trek with fellow activists Sheila Bush and Mimi Sharki Eastman back the offices of their representatives was too much, and although I was deeply disappointed, I had to turn back a fraction of the way there.

Representatives

Mimi Sharki and Bruce Fries on Capitol Hill. Photo by Mimi, used with permission.

Mimi is from Delaware (also of the Newark yarn bombing effort for Lyme Awareness, and of the social media Lyme Yarns pages) and met with her Senator’s Aide and was returning with additional materials regarding CDC’s handling of Lyme Disease to date and the multiple areas of misconduct, largely pertaining to their activities with and preferential treatment of IDSA (more details and links will be available soon in further posts, but the existing petition referenced a bit later is an excellent resource).

Bruce Alan Fries ((Patient Centered Care Advocacy Group) and multiple patients from multiple states and backgrounds were continuing ongoing meetings with representatives and preparing for the Science and Policy Forum referenced further below.

Leaders and organizers from the Mayday Project attended a  CDC symposium on Lyme disease earlier in the week and President Alison Cuarana delivered letters to Senators as well (with more info on their letters and outreach expected to be released by them this week, so check their website for details).

Letters to Strangers

Lyme disease activists Mimi Sharki Eastman and Sheila Bush distributed ‘Letters to Strangers’ to passersby and representatives on Capitol Hill May 19, 2016. Photo by Mimi, edited and shared with permission.

After handing off the additional resources to Mimi’s Senator, Sheila and Mimi were able to deliver patient letters from several states to additional representatives.  They crossed paths with an Aide to Montana Senator Steve Daines, and happily they had my letter with them to hand off.  The letters were ‘Letters to Strangers‘ compiled by members of the 1,000 Letters Campaign organized by activist Sheila Bush, and this was the second year that hundreds of letters were handed out to passers-by during the rally events.

Trekking to the nearest restroom from the point where I realized I couldn’t go further  with Sheila and Mimi was exhausting, although really not so far away, but passersby along the way were extremely receptive to the patient letters I offered them. The nearest restroom also happened to be in the National Botanical Garden, where I’d never been before, and where I spoke with someone affiliated with what I will call a ‘dignitary’ for the sake of anonymity, which they needed to maintain.  When I looked down at my last letter to give her an example of the states represented, we both got a chuckle out of my last letter being my own letter, which I wasn’t aware I’d been carrying in my stack.

Science and Policy Forum

And accidental photo of Sheila Bush’s stacks of ‘Letters to Strangers’ close at hand during the forum (and at all times).

The forum will need its own post to adequately cover, and to handle the number of resource links I hope will be available by then (including a video of the forum and follow-up videos from at leat one of the speakers).  You will need to read and bookmark them all, as the quality and value of the information shared was phenomenal.  Including, but not limited to:

• Integrative Medicine for Tick-Borne Diseases
  Ronald Stram, MD, Stram Center for Integrative Medicine
• Government Oversight and Policy Challenges
  Jenna Luche-Thayer, Advisor on Government Accountability
• Microbiological Challenges of Tick-Borne Infections
  Holly Ahern, MS, MT(ASCP), Associate Professor of Microbiology, SUNY Adirondack

Jenna Luche-Thayer speaking at the Lyme Policy & Science Forum on Capitol Hill May 19, 2016.

Additional details and program topics/speakers are found in the following press release that preceded the event, although Alan MacDonald, sadly, was ill and could not attend.

• Press Release: Lyme Action Network to Host Science and Policy Forum on Capitol Hill

Vigil for Those Lost to Lyme

Each year patients read the names of fellow Lyme patients who’ve lost their battle with this disease.  This is an aspect of Lyme–the death of community members–that the general public is fairly ignorant of, and one that was quite a surprise to me after my diagnosis.  Some years we hold candles while names are read, but this year plastic battery operated candles were distributed with individual names attached to them. There was singing, prayers, and words from organizers and NatCapLyme leaders in addition to the reading of names.

Monty Skall and Susan Greene of NatCapLyme also presented a touching award to the current leadership and board members of The Mayday Project (photos to follow).

Atlanta CDC Rally ~ Day Two

It was hard for many of us to choose between Arlington and Atlanta this year, as the need for a presence at CDC offices was extremely compelling.  A number of patients I was excited to see traveled to Atlanta, and although I missed them, I was very glad of their presence there.  And very proud of their rain-soaked efforts. Additional photos can be seen on public albums on Facebook, including those posted on The Mayday Project’s Facebook page.

Arlington IDSA Rally ~ Also Day Two

My choice was ultimately to attend in Arlington again this year, with the deciding factor being the presence of Heather there.

Letters From Strangers

Photo courtesy of Brenda Cox Hutto.

Sheila Bush and Brenda Cox Hutto continued to lead the charge in handing out Letters from strangers, with devoted help folding, stuffing, printing, and distributing.  These folks worked extremely hard, once again, and I hope to update this with names.  If I don’t, they are still appreciated greatly, and over the course of the two days hundreds of letters were handed out.

Photo courtesy of Brenda Cox Hutto.

I personally felt a higher percentage of people approached were receptive to taking the letter, and once again found that an even higher percentage were receptive even moving just across the street from the signs and ralliers. As with last year, people were stopping to ask very good questions.  However, I did not spend anywhere near the amount of time that Sheila and others did either year, my perceptions may not be representative.

Standing With Us (Shoes)

Last year, patients sent shoes to symbolically stand with patients on the streets. They sent them to the San Diego rally in October as well.  The four pairs in the close up photos below all represent Montana patients and family.  From bottom to top: my daughter and son, NW Montana; patients Hannah Funke, Debbie Haskins Bassler, Steven Loret, western Montana.

Bite Out of Lyme

I’m still waiting to see the big group bite photo, since I was in it rather than photographing it.  I’ll be adding in photos of the challenge as I find mine and get permission from others to share theirs.

Heather Haynes taking a #biteoutoflymedisease in the day 2 group #lymediseasechallenge bite. Photo by Heather, used with permission.

This Year’s Turnout

Activist Samantha May sorting ribbons in preparation for Lyme Ribbons 2016. She was not able to attend the rallies and was very sadly missed.

With half of our efforts occurring in Atlanta, and multiple Lyme conferences, meetings, and walks also occurring in New England within similar time frames, our numbers were not as large on the street this year.  Dividing and conquering on its own has that natural consequence, which should be acknowledged in any discussion of numbers, in my opinion.

But, as noted earlier, many patients were struggling that attended this year, and many regular participants were also too sick to attend and/or had recently undergone surgeries, hospitalizations, or travels for medical care.

I agree with many who have comment on the need for greater numbers, in addition to support from outside of our immediate community of impacted patients. There is certainly no disputing this point.  But there is no person I can point to in my networks that should have come but didn’t.  No patient can sacrifice themselves repeatedly for the cause, and often there is just no choice to be made.  If there were easy answers here, we’d have already overcome this obstacle.

As I mentioned earlier, I took far fewer photos than any rally I have ever attended, but will continue to add photos here over time.

This slideshow requires JavaScript.

IDSA Responses

For those that do attend, there is a great deal of frustration in the reactions from doctors and the IDSA leadership and members, sometimes even expressed publicly with demeaning statements given to the press.  In recent years, the media receiving the statements have been appropriately surprised by the tone, and their disapproval has come through in the tone of their coverage and even in the titles selected for articles.  Sadly this is often not the case, and outdated misinformation goes unchallenged in mainstream press.

Last year, the city stationed multiple police officers alongside us, which was handy because the IDSA had again attempted to have us removed, despite our having appropriate permits (which is why they were not successful).  The officers were extremely good sports and very professional, and I rather missed them this year.  But as far I know there was no attempt by IDSA this year to have us removed.

Hope and Support

We gain a great deal of hope each year, even from the smaller of our victories, the steps toward change, and the face to face time with other patients.  I took far fewer photos than I’ve ever taken this year.  Which, not so surprisingly, means I found myself actually IN photos this year.  This is not always my preference, but it was fun this year and let me have more conversations, though this also presents numerous challenges of its own.  The most widely distributed photo I’ve seen did have me in it, and true to long-standing form…my eyes are closed.  But I also appeared in a number of albums with my eyes open.  My photo appearances also included selfies, which I am not good at taking or posing for, although I did try some on my own phone (with lesser success but results I’m amused by, such as those below).

Why We Protest

We rally for better care and better research, but this is only necessary because of the political obstacles and stigmas that put care out of reach for too many patients.  Most specifically, the outdated and inadequate IDSA Lyme Guidelines and inadequacies of two tiered testing leave hundreds of thousands of patients misdiagnosed and untreated each year.

The CDC endorses the IDSA guidelines and distributes information about Lyme that is consistent with the outdated science therein, even though their mandates clearly necessitate a higher level of scrutiny and documentation, in addition to due consideration of peer-reviewed, IOM and GRADE compliant, published guidelines from ILADS.

The ILADS guidelines adhere to IOM and other standards for the creation of medical guidelines that the IDSA guidelines do not, and consider hundreds of peer-reviewed applicable studies not considered by IDSA.  An additional post will follow shortly with more background and resources regarding these and other examples of crippling agency misconduct related to our diagnosis and treatment obstacles.

What’s Changed Since Last Year

In past rallies, we were asking IDSA to review their guidelines, since they were overdue for review.  Last year, a ‘public comment period’ had occurred prior to May regarding the IDSA Plan for review of the guidelines.  The plan was deeply flawed in many of the ways the current guidelines are flawed and far too many aspects of IOM and GRADE processes/standards for guideline creation were going to remain unheeded.  Lack of patient and advocate representation were among many examples.  These issues were covered in multiple past posts, on Lymedisease.org, in press releases from advocate groups, and in mainstream media.  A longer list of related reading will be included in the upcoming post noted earlier, but an overview and some of the related links can be found in this past post.

ILADS Guidelines Added to National Clearinghouse Website

Patients were happy to see the peer-reviewed, patient and science focused ILADS guidelines appropriately added to the National Clearinghouse website for medical guidelines.  These guidelines should be equally accessible to patients and practitioners, but change is slow, and so far the IDSA guidelines remain the only guidelines noted and promoted on the CDC website.

IDSA Guidelines Removed from National Clearinghouse Website

As noted earlier, the IDSA guidelines have been out of date despite their expiration.  They lacked inclusion of relevant science in previous iterations as well, and continue to rely on approximately four studies (though statistically invalidated by independent reviews and not designed to answer the questions at hand) as the premise of some of their more controversial stances, such as length of treatment and persistence of Lyme disease.

Since they have expired and since they do not adhere to applicable standards for the creation of medical guidelines, they were removed from the National Clearinghouse website earlier this year, yet they remain the only standards endorsed by the CDC.

CDC Refuses to End Preferential Treatment of IDSA Guidelines

Advocates formally petitioned the CDC to end preferential treatment of IDSA late last year, but CDC responded initially that the process did not apply.  Press releases and media coverage since have shared some of the CDC responses to correspondence and the claims made to date have been troubling, to put it mildly.  The CDC continues to imply and even publicly claim that the IDSA guidelines represent the best available synthesis of lyme science at this time, which is a wildly inappropriate statement for a number of reasons related to federal agency processes and mandates, in addition to the lack of validity and publicly transparent analysis of that claim.

Further Reading

Again, please stay tuned if you are in need of catch up links on these developments or other aspects of the basic background situation.  Multiple bills were proposed or passed at the state level, as well as federal legislation currently proposed. You can also browse this blog, Lymedisease.org, and The Mayday Project websites in the mean time or google press releases related to preferential treatment and Patient Centered Advocacy Group. A national Summit in Canada earlier the same week as the rallies is also worth googling pending its inclusion with catch-up links.

Additional issues include, but are not limited to:

• Continued CDC dissemination of outdated science and dangerous misinformation;
• Flawed two tiered testing and a case definition that contribute to unacceptable rates of misdiagnosis and delayed treatment;
• Misuse of NIH funding;
• Additional examples of agency misconduct by CDC regarding preferential treatment and conflicts of interest;
• Lack of transparency of Lyme Corps program and the risks the program poses to patient and public health;
• The case definition of Lyme, general facts about its inappropriate alterations and those responsible, and the role it plays in concert with above factors in obstructing diagnosis and care.