Wall of Hope 2009 - Toronto

*************UPDATES******************
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!
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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.

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.

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.

An ID Doctor speaks about the IDSA / Lyme

People who are unfamiliar with Lyme disease, and the medical and political controversy that now surrounds it, frequently ask the question, "How could this possibly be?" In the spirit of a-picture's-worth-a-thousand-words, this column will be uncharacteristically brief. The following video is courtesy of the renowned Dr. Joe Jemsek, of the Jemsek Specialty Clinic. Dr. Jemsek is speaking at the Into the Light, Lyme Disease Awareness Gala, which was held in March 2009. Enjoy.



Ok, just a few comments... ;-) to add a Canadian context. How does this American tragedy affect us on this side of the border? Well, you take Health Canada's bogus statistics for Lyme disease and our seriously flawed Lyme tests. Then add the IDSA's 2006 Lyme treatment guidelines, which declares Chronic Lyme disease to be all in our heads. Add to that the CDC announcement that Lyme is an "emerging epidemic" in the US. What do you get? At best, you get a confused Canadian medical system that's faced with some conflicting input. At its worst, you get Canada's regulatory Medical Colleges declaring war on the handful of Canadian doctors actively involved with treating Lyme disease -- and the Colleges are not answerable to anyone for their obscene actions.

At least 3 cases of heavy-handed actions by Medical Colleges have been publicized to date. First was the now late Dr. Philip Williams, whose treatment of Lyme disease was restricted by the CPSO in 2004. Then in early 2008, the CPSBC forced Canada's Lyme disease guru, Dr. Ernie Murakami, into retirement with the threat of removing his licence. Most recently, Dr. Jozef Krop had the files of 20 of his Lyme patients seized by CPSO investigators in October 2008 -- that investigation is ongoing in spite of the fact there had not been one patient complaint against him. Sound like the sort of environment that will encourage doctors to seriously consider Lyme disease in their differential diagnosis?

Lyme disease established in New Brunswick

More Lyme in the news. This piece aired on CBC New Brunswick on July 15, 2009.

In the northern Saint John community of Millidgeville, an established breeding population of ticks was identified last spring. That means higher numbers of younger nymph ticks will be present -- about the size of a poppy seed, they are much harder to see than adult ticks, but capable of carrying and transmitting Lyme disease.



Limited surveillance has revealed that 20% of the Millidgeville-area ticks are positive carriers of the Lyme bacteria. That's twice the supposed national average of 10%. Such limited surveillance has been done throughout our country, with most of that being passive surveillance (when ticks are voluntarily submitted by veterinarians and doctors for analysis), it's difficult to put much credence in these numbers -- passive surveillance will, at the best of times, tend to significantly underestimate the real numbers. The reality is, in spite of our health authorities' continuing characterization of Lyme as a new and emerging illness in Canada, everywhere they look they are finding it! Ask the patients that have been misdiagnosed and battling this illness for decades -- this disease has long been present in every province of our country.

And it's all well and good that continued efforts go into studying tick populations (a similar study to the one in Millidgeville is taking place this summer in the Wainfleet Bog area of the Niagara Peninsula of Ontario). But when will action be taken to improve the quality of Lyme testing available to Canadians? According to the handful of Lyme-literate physicians across the country, Canada's Lyme tests are not worth the paper they are printed on. Very few Lyme patients test positive with Canada's Lyme tests -- most are forced to pay out-of-pocket for tests from specialized tick-borne illness labs in the US. Early detection and treatment is absolutely critical in successfully treating this potentially devastating illness -- that early detection is next to impossible right now in Canada. Delayed diagnosis greatly increases the chance of developing serious chronic illness.

When will action be taken to ensure the safety of Canada's blood supply? Canada is one of the few western nations that does not currently screen its blood supply for Lyme disease! Several published studies have demonstrated the ability of Lyme bacteria to survive in treated blood products for up to 48 days.

When will action be taken to better train our doctors, so that patients are not faced with the all-too-frequent "we don't have Lyme disease here"? This happened in a southern Ontario community just a few weeks ago! And that was in spite of a Public Health Advisory about Lyme disease issued a few months prior in the same region. Our doctors are our first line of defence -- and those defences are currently down!

When will action be taken to provide meaningful public awareness? The public continues to be largely unaware of the risks for Lyme disease. While truckloads of money went into publicity campaigns for West Nile Virus -- a disease that impacts in the order of 1,000 people a year in North America -- next to nothing has been done to raise awareness of Lyme disease. The CDC now estimates in excess of 200,000 new cases of Lyme disease annually. And do you know where the vast majority of those cases are? In close proximity to the borders of Manitoba, Ontario, Quebec, New Brunswick and Nova Scotia!

So the numbers in this news report suggest that 1 in 10 ticks in our country are carrying Lyme bacteria. The list of known endemic areas continues to increase in length. The recent Canadian Medical Association Journal article clearly documents the presence of ticks throughout the country. And yet Health Canada continues to report bogus numbers of only about 50 cases of Lyme a year in Canada. But of course those numbers are based on Canada's bogus tests. There are thousands of Lyme patients across the country that are not counted in Canada's stats for Lyme because their Canadian tests were negative. When will Health Canada give its collective head a shake? When will our medical community get past these numbers? -- treat the patients, not the labs.

If you or someone you know has been on the Great Canadian Lyme Adventure, please make sure your elected representatives know about it. Write to your local paper. Write your Minister of Health. The status quo is simply not good enough. Something's gotta change.

Ten days and counting...

Cor Blimey, Guv'nor!

CT Governor signs Lyme doctor protection Bill into law.

On Sunday amidst little fanfare, Connecticut Governor M. Jodi Rell signed Bill HB6200 into law. Earlier this year the Bill received unanimous support from the Health Committee, which introduced it to the House. This was followed, with but minor revisions along the way, by the unanimous support of both Houses of the Connecticut General Assembly. It will now come into effect next month on July 1, 2009.

In what we hope will be a strong message to the Infectious Diseases Society of America (IDSA), which continues in its heavy-handed attempt to shut down the conversation surrounding Chronic Lyme, this Bill clearly comes down on side of patients, their freedom to choose treatment, and doctors' freedom to exercise their clinical judgement.

To illustrate the IDSA's persistent attitude on this subject, check out this recent exchange printed in the British Journal of Medical Ethics (JME). A few months ago, a piece appeared titled "Attorney General forces Infectious Diseases Society of America to redo Lyme guidelines due to flawed development process", in which Johnson and Stricker outlined the reasons why the IDSA now finds itself in the position of having to review its 2006 Lyme disease guidelines with a completely new panel. In May 2009, IDSA President Anne Gershon submitted a reply to the JME in which she continues the Society's spin (you know the drill, but to paraphrase: Chronic Lyme doesn't exist, long-term antibiotic treatment is ineffective and dangerous). It is quite astonishing that she would put such statements in writing given that the guidelines review process is still in progress! Or are we to surmise from her comments that the outcome of that review has already been determined...? Well, the responses to President Gershon posted by the JME were not pretty (quite good reading, but not pretty).

This is the very stuff that got IDSA into trouble in the first place. The 2008 post-investigation press release from the Connecticut Attorney General's office states it clearly: The IDSA's 2000 and 2006 Lyme disease panels refused to accept or meaningfully consider information regarding the existence of chronic Lyme disease, once removing a panelist from the 2000 panel who dissented from the group's position on chronic Lyme disease to achieve "consensus". Let's hope this is not déjà vu all over again. Time will tell.

Mark this date on your calendar: July 30, 2009. That's the date of the IDSA's "open" public hearing in Washington, DC (you know... the open public hearing that the public cannot actually attend). The IDSA has promised to broadcast that hearing live via their website.

While some have attempted to misrepresent Connecticut's new Bill as an ill-advised attempt to "legislate medicine", it is quite the contrary -- it does not tell doctors what they have to do (unlike the IDSA guidelines), but rather protects their freedom to use their judgement without undue interference from regulatory bodies. Governor Rell had this to say about the Bill: “Doctors in Connecticut – the absolute epicenter of Lyme disease – can continue to do what is best for their patients suffering from this complex illness. I think most people know someone who has been infected. The bill also recognizes that Lyme disease patients must have the freedom to choose which remedy or regimen best meets their needs.”

Here is the press release from the Lyme Disease Association, and brief coverage from HersamAcorn.com.

Please let your elected representatives know about this exciting development in Connecticut, which now follows similar legislation in California and Rhode Island, in addition to the non-legislative approach implemented by New York. Canada's Lyme doctors continue to be harassed by our medical colleges. Many doctors will not treat Lyme patients for fear their licence could be in jeopardy. This needs to stop.

Three cheers for Guv'nor Rell!

Tracking Lyme disease in Canada

CTV News: Avis Favaro covers the rise of this infectious disease.

"Lyme disease is moving its way into new parts of Canada but the government is not doing enough to track it or to teach doctors how to diagnose it, says a new report."

"The painful and debilitating affliction known as Lyme disease is spreading in Canada and with the summer outdoor season about to get into full swing, doctors are being asked to report even suspected cases to help health officials track it."

For the compete article visit CTV.ca online. A video report, which aired Monday June 8, 2009 on CTV National News can be viewed here.

A related piece by the CBC is titled Lyme disease spreading in Canada, researchers find. Here are links to a CBC video report in Real Media and QuickTime formats.

A report this week in the Canadian Medical Association Journal titled The emergence of Lyme disease in Canada outlines the increase in Lyme endemic areas across our country. While there is really nothing new here from the perspective of the Lyme community (there have been Lyme patients suffering in every province of the country for years), it is nice to see some acknowledgement of the problem from medical officials.

Please ask your elected officials what will be done to teach our doctors how to diagnose this debilitating disease.