Madison Area Lyme Support Group

21st CCA Passes Senate

Lyme Patients have a seat at the table!

The US Senate passed the 21st Century Cures bill which included Lyme language. After days of discussion on the Senate floor about numerous provisos in the huge health care initiative, and stalling on the floor, a vote was called for and the Senate amendment including Lyme passed 94-5. The five Senators who voted no on the Cures Act are Sanders (I), Wyden (D), Merkley (D), Lee (R), Warren (D).

President Obama, in his weekly address on December 3, called upon the Senate to pass this important legislative package just as the House had overwhelmingly done on November 30.

See Lyme portion of the language: https://madisonarealymesupportgroup.com/2016/11/30/latest-on-21st-cca/

See video on House here:  https://madisonarealymesupportgroup.com/2016/12/02/congressman-smith-on-cca/

According to Lyme Disease Association President, Pat Smith,

“We have worked for many years to get chronic Lyme recognized, as probably 20% or so of patients develop it after short-term treatment. The government agencies have not recognized those individuals with chronic symptoms, and along with certain groups who have exclusively promulgated Lyme treatment guidelines that only permit short-term treatment, they have shut out from the deliberations in DC the most important stakeholder group, patients, along with advocates and treating physicians.”

She added, “these stakeholders will provide input into the research choices necessary to help all Lyme patients – research then funded by the agencies. Much of the past research funded ignored the plight of those with chronic disease, and discounted the research that so clearly demonstrates that the spirochete may survive current recommended treatment regimens. Not only does this bill allow for those stakeholders at the table, but also it requires a diversity of  ‘scientific disciplines and views,’the latter which was almost a deal breaker during Lyme language negotiations. 

We are grateful to Senator Lamar Alexander (TN) and Patty Murray (WA), Senate HELP Committee Chair and Ranking Member, respectively, for helping to get this “Cures” bill passed.  We also thank Senator Richard Blumenthal (CT) and Senator Kirsten Gillibrand (NY) for their support in earlier Senate efforts on Lyme disease.  In the House, we thank House Majority Leader Kevin McCarthy, Chairman Fred Upton of the Energy & Commerce Committee, Congressman Christopher H. Smith, Co-Chair of the House Lyme Caucus, and Congressman Chris Gibson.”

For more information about this bill go to www.LymeDiseaseAssociation.org

MyLymeData – Register Now

https://www.mylymedata.org

My mom used to say, “If you want something done right, do it yourself.”  Well, that’s what MyLymeData is doing – research using information directly from you.

Even if you’ve registered, check back periodically as they add new surveys.  The last one asked questions specifically about successful treatment.  By clicking on the tab, “View Data” at the top of the page, you can go to any question on the survey and see how others answered.  For instance an antibiotic protocol for 1-12 months using Flagyl or Metronidazole got the best score according to those who have filled out the survey so far.

MyLymeData uses big data research tools that allow patients—even thousands or tens of thousands– to quickly and privately pool their data to determine which treatments work best. This research begins with you. Simply click on Register Now! to begin, or Login at the link above if you are a returning user.

Fill it out today!

Ultramarathoner For LymeLight Foundation

Photo by Myke Hermsmeyer
JAX MARIASH KOUDELE (right) poses with her trophy after winning the last 4 Deserts ultramarathon race in Antarctica. She is next to the winner of the men’s category, Tommy Chen. The race took place in several locations around the continent, with athletes spending nights on a ship.

http://www.hoodrivernews.com/news/2016/dec/03/local-ultramarathoner-wins-historic-title-antarcti/

Five races and over a million kilometers later, Jax Mariash Koudele is a world champion.

Last week, the Hood River runner and owner of Stoked Roasters took first place in the women’s category of a 250-kilometer multi-day ultramarathon in Antarctica, part of a larger competition known as the 4 Deserts, where runners compete in some of the most extreme conditions on the planet. Koudele ran in all four races — Chile (Atacama Desert) Namibia (Sahara Desert), and China (Gobi Desert) — and took first place for women in all four races.

That series is combined with another race (this year, in Sri Lanka) to form the 4 Deserts Grand Slam Plus. Koudele took second in that race, but placed first in the women’s category in the overall series. She is the first woman to ever finish the Grand Slam Plus.

Koudele, was thrilled at the result, but also excited about that funds that have been raised for the nonprofit she runs for: Lymelight Foundation, an organization designed to help children and young adults who are struggling with Lyme disease to gain access to treatment and the money to pay for it.  http://www.lymeinfo.net

“Gosh, this whole accomplishment is leaving me in a shock right now. I had four goals that I dreamed of making come true and low and behold, we exceeded expectations. To think back to 11 months ago when the dream first came to be, I simply wanted to be the first woman in the world to accomplish the Grand Slam Plus,” she wrote the News via email Thursday on her way back to the U.S. “I cannot believe that fast forward to today and I am the 2016 4 Deserts female world champion, third ever in history to win all 4 Deserts races in one fiscal year, become the first woman ever to complete the Grand Slam Plus, and we have surpassed our goal for the LymeLight Foundation of $10,000 to be at $15,326 and still climbing with five days left to go on a 100-percent match promotion to close out the campaign.”

Every stage of the race was brutal, because if running 250 kilometers in inhospitable conditions isn’t bad enough, runners had to carry everything they needed with them on their backs, as the race is a self-supported one. But Antarctica was especially challenging, Koudele said, who called it “the hardest race of the series and quite frankly, my life.”

Getting to the race venue, which was held at multiple locations in Antarctica, including Half Moon Island, was an ordeal itself. After landing in Argentina, Koudele sailed through the Drake Passage — a notorious body of water commonly known as having some of the roughest seas in the world. On the way there, seas were flat. On the way back, not so much.

‘Every day, we were famished and completely exhausted. Our legs and feet would throb all night long. Every muscle and tendon felt like it was on the brink of falling apart.’

“On the way home, we experienced the Shaky Drake, which was a 6 out of 10 on how bad it can be and holy cow, it was 48 hours of the most intense rolling from side to side, up and down, you have ever imagined,” she said. “After 250k of running, you now had to find out how to survive sea sickness. Some hours were okay and others you held on trying not to throw up. It was like a 48-hour roller coaster ride.”

Though it is nearing summer in the Southern Hemisphere, temperatures were still below freezing most of the time, with wind and snow battering the competitors. Koudele said terrain was especially challenging, running in snow, ice, and slush, climbing up and down in elevation (24,000 feet in a week) so much that it felt like “a ski mountaineer racing without the skis.”

“Every day, we were famished and completely exhausted. Our legs and feet would throb all night long. Every muscle and tendon felt like it was on the brink of falling apart,” she recalled. “Some nights, you would lie in bed just tossing and turning and trying to roll out your muscles and stretch and trying to figure out how you would muster up energy to wake up the next day to run again for multiple hours.”

But Koudele survived, and then some, finishing out her year-long odyssey on top. She is already thinking about competing in other noteworthy ultramarathons, including the Barkley Marathon and Ultra-Trail du Mont-Blanc in the Alps, but doesn’t have concrete plans for her next adventure yet. Right now, she’s enjoying the aftermath 4 Deserts Grand Slam Plus victory.

“All-in, I will dab into some type of running adventures this next year, but for the most part, the focus will be on trying to capitalize on this adventure and story tell and inspire folks to get out there and live their dreams,” she said.

Go Girl Go!

21st CCA Bill Lyme Language

https://www.congress.gov/114/bills/hr34/BILLS-114hr34eah.pdf (p. 115-120)

4 SEC. 2062. TICK-BORNE DISEASES.
IN GENERAL.—The Secretary of Health and Human Services (referred to in this section as ‘‘the Secretary’’) shall continue to conduct or support epidemiological, basic, translational, and clinical research related to vector-borne diseases, including tick-borne diseases.

REPORTS.—The Secretary shall ensure that each triennial report under section 403 of the Public Health Service Act (42 U.S.C. 283) (as amended by section 2032) includes information on actions undertaken by the National Institutes of Health to carry out subsection (a) with respect to tick-borne diseases.

TICK-BORNE DISEASES WORKING GROUP.— ESTABLISHMENT.—The Secretary shall establish a working group, to be known as the Tick-Borne Disease Working Group (referred to in this section as the ‘‘Working Group’’), comprised of representatives of appropriate Federal agencies and other non-Federal entities, to provide expertise and to review all efforts within the Department of Health and Human Services related to all tick-borne diseases, to help ensure interagency coordination and minimize overlap, and to examine research priorities.

RESPONSIBILITIES.—The working group shall—not later than 2 years after the date of enactment of this Act, develop or update a summary of ongoing tick-borne disease research, including research related to causes, prevention, treatment, surveillance, diagnosis, diagnostics, duration of illness, and intervention for individuals with tick-borne diseases; advances made pursuant to such research; Federal activities related to tick- borne diseases, including epidemiological activities related to tick-borne diseases; and basic, clinical, and translational tick-borne disease research related to the pathogenesis, prevention, diagnosis, and treatment of tick-borne diseases; gaps in tick-borne disease research described in clause (iii)(II); (v) the Working Group’s meetings required under paragraph (4); and (vi) the comments received by the Working Group; (B) make recommendations to the Secretary regarding any appropriate changes or improvements to such activities and research; and (C) solicit input from States, localities, and nongovernmental entities, including organizations representing patients, health care providers, researchers, and industry regarding scientific advances, research questions, surveillance activities, and emerging strains in species of pathogenic organisms.

(3) MEMBERSHIP.—The members of the working group shall represent a diversity of scientific disciplines and views and shall be composed of the following members: (A) FEDERAL MEMBERS.—Seven Federal members, consisting of one or more representatives of each of the following: (i) The Office of the Assistant Secretary for Health. (ii) The Food and Drug Administration. (iii) The Centers for Disease Control and Prevention. (iv) The National Institutes of Health. (v) Such other agencies and offices of the Department of Health and Human Services as the Secretary determines appropriate. (B) NON–FEDERAL PUBLIC MEMBERS.—
Seven non–Federal public members, consisting of representatives of the following categories:  (i) Physicians and other medical providers with experience in diagnosing and treating tick-borne diseases. (ii) Scientists or researchers with expertise. (iii) Patients and their family members.  (iv) Nonprofit organizations that advocate for patients with respect to tick-borne diseases.  (v) Other individuals whose expertise is determined by the Secretary to be beneficial to the functioning of the Working Group.

(4) MEETINGS.—The Working Group shall meet not less than twice each year.

(5) REPORTING.—Not later than 2 years after the date of enactment of this Act, and every 2 years thereafter until termination of the Working Group pursuant to paragraph (7), the Working Group shall—A) submit a report on its activities under paragraph (2)(A) and any recommendations under paragraph (2)(B) to the Secretary, the Committee on Energy and Commerce of the House of Representatives, and the Committee on Health, Education, Labor, and Pensions of the Senate; and (B) make such report publicly available on the Internet website of the Department of Health and Human Services.

(6) APPLICABILITY OF FACA.—The Working Group shall be treated as an advisory committee subject to the Federal Advisory Committee Act (5 U.S.C. App.).

(7) SUNSET.—The Working Group under this section shall terminate 6 years after the date of enactment of this Act.