Wednesday, August 19, 2009

Wall of Hope 2009 - Toronto

Those attending the demonstration may have their choice of a t-shirt or canvas carry-bag (while supplies last), compliments of Lyme Action Group.

We are very pleased to announce that Dr. Jozef Krop (LLMD) and Ms. Helke Ferrie (medical/science author) will be speaking at the event. We will also be making a formal presentation of our petition to an MPP, which will subsequently be read in the Legislature.

Washrooms are available -- ask someone from Lyme Action to escort you to the building.

If you don't need to rush off, please pack a lunch and join us for a picnic on the north lawn (picnic tables available) after 11:30am. And if you still don't need to rush off after lunch, you might want to pay a visit to the Legislature where our petition is scheduled to be read at approximately 1:30 pm!

Remember umbrellas just in case... but let's keep praying for sunshine. ;-) The forecast is looking mighty fine.

Please spread the word -- let's make a strong statement with the number in attendance. See you on the 17th!

To all who are concerned about Lyme Disease:

Lyme Action Group is pleased to sponsor this year's Wall of Hope 2009 in Toronto. Mark your calendars: Thursday September the 17th. The Wall of Hope is happening once again this year right across Canada. Our Toronto event will begin at 10:00 am on the south lawn of the Ontario Legislature at Queen's Park. This will officially go until 11:30 am.

The purpose of the event is to attract attention to the issues of Lyme disease, and to make medical associations and governments on all levels think about what they are not doing to help us! We need their help. Please come and join us! Bring friends and family who know what daily struggles we go through. Contact your elected representatives (links to the right) and see if they will meet with us in front of Queen's Park. Contact any media source you can and lets make this as public an event as possible. The more people the stronger we are and the stronger the message we will be sending. 2009 has been an extraordinary year for media coverage of Lyme issues -- let's keep the momentum building!

Items needed will be lots of big and readable signage, fliers and anything else anyone can think of! Most importantly we need lots of participation. Lyme Action will have some posters available and a few other surprises for those in attendance! Remember to bring water, snacks and chairs.

If you need transportation (or can help with transportation), directions or other information, please let us know. There is a TTC stop immediately on the south side of the Legislature grounds. We will be gathering on the south lawn (see green arrow on map below). There are a number of paid parking locations in the area, including on King's College Circle on the adjacent University property (west of the Legislature). Please visit the Wall of Hope 2009 - Toronto Facebook page where you will find additional info and can indicate your attendance. See you on the 17th!

View Larger Map

For more information, please contact: Keith Poullos (GTA Lyme Support group) 519-853-0149 or Lyme Action Group. Please note that this is a scent-free event as some in attendance have severe sensitivities.

Lyme Action gratefully acknowledges the Canadian Lyme Disease Foundation for the use of the poster series linked above.

Tuesday, August 4, 2009

The National Post, Global Television and the IDSA

The press, the tube, and a medical society on whose reputation aspersions have been cast. What do these three have in common? Well, they were all headlining on the subject of Lyme disease this week. The National Post began a new series about Lyme disease in today's paper. Global Television featured a Lyme story in their Family Health segment on the 6 o'clock news last night. And today the IDSA made the video archive of last week's hearing in Washington DC available through its website.

Debate Over Lyme Disease Lingers On

Diagnosis, Treatment; Canadian doctors hold to existing guidelines while laws change in the U.S.

Today the National Post launched a new series about the mysterious world of Lyme disease. This first article includes interviews with CanLyme President Jim Wilson and retired BC physician Ernie Murakami.

Also quoted is Dr. Muhammad Morshed of UBC, who "regrets" that the recent Lyme doctor protection legislation in Connecticut gained the political support it did. Yes, Dr. Morshed -- that nail-bitingly close (unanimous!) political support -- how did it ever pass?... unanimously passed through each and every stage of the legislative process... making Connecticut the 3rd State to adopt such legislation, following in the footsteps of California and Rhode Island. And then there is New York State, which has implemented a non-legislative solution to the same problem of Lyme doctor harassment by medical boards. Still other States have been implementing improved education and awareness programs.

The National Post columnist of this series is Lia Grainger. Please take a moment to thank her for covering this important subject and tell her what you think. You can reach her via email. Tomorrow's column will focus on the spread of ticks into Canada.

Last night the 6 o'clock Global News featured a Family Health segment about Lyme disease. The piece included interviews with Robert Manten (Lyme patient), Janet Mitchell (Lyme patient), Dr. Jozef Krop (Lyme physician), and Dr. Nicholas Ogden (Public Health Agency of Canada). The video segment is pasted below. You can reach Global's Health Specialist, Beatrice Politi, by email with your comments.

And finally, the IDSA. As promised and right on schedule, the video archive was made freely available for viewing through the IDSA archive website. There is a lot of material to digest here, including widely divergent opinions on both sides of the issues.

Below is additional comprehensive video coverage of last week's hearing, by ABC 7 News in their On Your Side segment.

Monday, August 3, 2009

IDSA Hearing on Lyme - Washington, DC

Last Thursday, July 30th, 2009, was a historic day. A hearing took place in Washington DC to consider a broad range of medical opinions with regard to Lyme disease. This hearing came about as the result of another historic event -- the antitrust lawsuit that the Connecticut Attorney General brought against the Infectious Diseases Society of America (IDSA). The Attorney General's investigation identified potential conflicts of interest with regard to the original Lyme guideline panelists and serious flaws with the way in which those guidelines were prepared. And in a 2008 settlement, the IDSA agreed to complete a review of its Lyme disease guidelines, including seeking input from a broad range of stakeholders both in written form and through a 1-day invitation-only hearing.

By year end, the IDSA expects to make public its intent with regard to the 2006 Lyme guidelines -- whether they will stand as is, or be modified in part or in whole. The complete video record of the 1-day hearing, which was broadcast live online during the event, is expected to be available through the IDSA website this week. In the meantime, the IDSA is making all of the presentation materials available for download. The presenters included:
  1. Tina Garcia, Lyme Education Awareness Program Arizona (L.E.A.P. Arizona, Inc.), Mesa, AZ PDF
  2. Lorraine Johnson, JD, MBA, California Lyme Disease Association (CALDA), Ukiah, CA PDF
  3. Daniel Cameron, MD, International Lyme and Associated Diseases Society (ILADS), California PDF
  4. Phillip Baker, PhD, American Lyme Disease Foundation (ALDF), Bethesda, MD PDF
  5. Ben Luft, MD, The State University of New York, Stony Brook, NY PDF
  6. Allison Delong, MS, ILADS & The Center for Statistical Sciences, Brown University, Providence, RI PDF
  7. Barbara Johnson, PhD, Centers for Disease Control and Prevention, Fort Collins, CO
    1. Slides PDF
    2. Statement PDF
  8. David Volkman, MD, Nissequogue, NY
    1. Slides PDF
    2. Statement PDF
  9. Sam Donta, MD, Falmouth, MA PDF
  10. Eugene Shapiro, MD, IDSA & Yale University School of Medicine, New Haven, CT PDF
  11. Brian Fallon, MD, Columbia University Medical Center, New York, NY
    1. Slides PDF
    2. Statement PDF
  12. Sunil Sood, MD, Schneider Children's Hospital at North Shore, Manhasset, NY
    1. Slides PDF
    2. Statement PDF
  13. Ken Liegner, MD, ILADS, Armonk, NY PDF
  14. Allen Steere, MD, Massachusetts General Hospital & Harvard Medical School, Boston, MA PDF
  15. Steven Phillips, MD, ILADS, Wilton, CT PDF
  16. Arthur Weinstein, MD, Washington Hospital Center, Washington, DC PDF
  17. Raphael Stricker, MD, ILADS, San Francisco, CA PDF
  18. Gary Wormser, MD, IDSA & New York Medical College, Valhalla, NYPDF
This hearing has added to the year's already heightened media focus on Lyme disease as an "emerging epidemic", as it has been referred to by the CDC. Below is an example of recent coverage by ABC News. This particular coverage is noteworthy in that the medical correspondent (Dr. Marie Savard) was herself a Lyme patient not long ago.

Here is a press release issued by the International Lyme and Associated Diseases Society (ILADS) regarding the IDSA hearing, titled HISTORIC HEARINGS ON MOST CONTROVERSIAL DISEASE IN U.S., LYME DISEASE: SPOTLIGHT ON A HIDDEN EPIDEMIC.

In a Greenwich Time article published late last Thursday, Connecticut Attorney General Richard Blumenthal said he felt the hearing in Washington, D.C., on Lyme disease treatment guidelines that he helped bring about, was "unprecedented" and set a standard for transparency and fairness in crafting medical recommendations.