Global's 16x9 digs a little deeper

On Sunday, October 11th, Global TV's investigative current affairs program, 16x9: The Bigger Picture, aired a story titled "Lyme Disease Lepers". Finally some coverage is being given to the IDSA guidelines controversy and the related intimidation of Canadian Lyme disease doctors -- the reasons why more and more Canadian doctors are afraid to treat this devastating disease. Well done Global!

The story features Lyme disease physicians Dr. Ernie Murakami (who was forced to retire in 2008 by the BC College of Physicians for treating Chronic Lyme patients), and Dr. Jozef Krop (currently being investigated by the Ontario College of Physicians and Surgeons for treating Chronic Lyme disease, in spite of the fact there has not been one single patient complaint against him). The story also tells of the difficulties Lyme patients have in getting a timely diagnosis (delayed diagnosis is a major contributor to developing serious and debilitating Chronic Lyme disease), as related by Lyme patients Robert Manten and Janet Mitchell, due to unreliable Canadian tests and lack of training and awareness amongst Canadian doctors.

Dr. Nicholas Ogden, of the Public Health Agency of Canada (PHAC), makes the following statement on camera: "The interpretation done in some private laboratories in the USA are too liberal and therefore they capture as being positive a lot of people who don't have Lyme disease." This just doesn't jive with findings of the Canadian Lyme Disease Foundation, which has tracked thousands of Lyme patients across the country who were diagnosed with a positive Western Blot test from reputable and fully certified laboratories in the US -- tests interpreted according to stringent CDC criteria -- the majority of these same patients had negative Canadian Lyme tests.

Such statements from Dr. Ogden are clearly a distraction from the real issue that Canadian Lyme tests fail to detect the vast majority of Lyme patients in our country, with devastating health consequences for patients whose diagnosis is therefore delayed. And why do these diagnosed patients respond positively to treatment if, as Dr. Ogden asserts, a lot of them don't really have Lyme disease in the first place? Hmmmm. If you ask one of the handful of experienced Lyme doctors in our country, the Canadian tests don't just fail to detect the disease in its early stages either -- for most people, these tests are not worth the paper they are printed on for any stage of the disease. The PHAC is due some feedback on this subject -- here is a link to the PHAC contact page for our Chief Public Health Officer.



The 16x9 website gives you an opportunity to have your say as well (see Add Your Comments at the bottom of their Lyme Disease Lepers story page). Please keep the comments coming! -- let Global know you appreciate their coverage of Lyme issues and that more is needed to raise awareness.

If you have not already written Ontario's Minister of Health (see recent post Your help is urgently needed!), please take a minute to do so. Our letters have now been updated with the details of our new Health Minister (the Honourable Deborah Matthews). We want to keep these issues front and centre. Together we are making a difference!

Burlington screening of "Under Our Skin"

********************UPDATE*********************

Note that there is limited parking available on the church property. Bridgman St (adjacent to the church, off of New St) is a good choice for street parking.
We hope to begin the film promptly, given its length, so please come early and make yourself comfortable!

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Back by popular demand! Lyme Action Group is pleased to partner with Sunday Evening Forum to bring another screening of the award-winning Lyme documentary Under Our Skin to Burlington, Ontario.

The Untold Story of Lyme Disease and our Health System
A groundbreaking documentary explores the human, medical and political dimensions of Lyme disease - an emerging epidemic destroying countless lives. This powerful film exposes a broken health care and medical research system unable to cope with a growing terror under our skin. It will open your eyes!

There is No Medicine for Someone Like You
Lyme Disease, caused by bacteria transmitted by an infected tick, manifests with symptoms of virtually all known neurological and autoimmune disorders. The American Centers for Disease Control estimates over 200,000 new cases each year in the USA (more than AIDS and West Nile combined) - the vast majority of which are in close proximity to Ontario. An increasing number of people have the disease in Ontario, and many more may have it, but have either not been diagnosed or have been misdiagnosed.

Date: Sunday November 8, 2009
Time: 7:00 pm
Location: Burlington Baptist Church
2225 New Street, Burlington
(west of Guelph Line - click here for a map)

A suggested donation of $5 at the door is appreciated, with net proceeds supporting the advocacy work of Lyme Action Group. Refreshments will be available following the event. The running time for the film is 103 minutes. Following the film, a question and discussion period will be facilitated by Rob Manten. Robert is a local Lyme patient and founding member of Lyme Action Group.

Here is a film trailer:


For more information about this film, including additional film excerpts, please visit Open Eye Pictures online. Any questions about the event can be directed to Lyme Action Group.

Sunday Evening Forum is a community forum to discuss current issues. For more information, visit the Burlington Baptist Church online. An event poster is available, which you can download and distribute. Please join us November 8th!

Your help is urgently needed!

As you know, last week at the Wall of Hope event in Toronto, a +1,400-signature petition was submitted to the Ontario Legislature on a number of Lyme-related issues. The government is now required to officially respond to that petition. While this matter is on the Minister's desk, we want to send another clear and strong message to the Minister to let her know what we are thinking. Note that as of earlier this month, we now have a new Health Minister, the Honourable Deborah Matthews -- the letters have been updated to reflect this change.

To that end, Lyme Action has prepared 2 letters that we would like you to send to the Minister. The letters are accessible via the links below in Word format (drop an email to us if you need a different format). Feel free to customize the content of your letters, but be sure to add your own complete name, mailing address and signature before you send it off. The letters can be mailed, cut-and-paste into an email, or faxed.

1. Letter to Ontario Minister of Health re: CPSO
This letter highlights the problem of the College of Physicians and Surgeons of Ontario (CPSO) persecuting Lyme literate doctors. In so doing, the CPSO is interfering with the doctor-patient relationship and threatening our access to treatment. It is written specifically about Dr.Krop (who has not had one single patient complaint against him!), as his investigation is currently before the CPSO. But as you know, this problem impacted Dr. Murakami in BC last year and your doctor could be next!

2. Letter to Ontario Minister of Health re: Bill 171 & Bill 179
Bill 171 deals with mandatory reporting of doctors (by other doctors). We are particularly concerned that the CPSO will misuse the powers of this Bill to persecute doctors involved in using ILADS protocols for treating Lyme, as well as practitioners of alternative and complimentary medicine. Bill 179 proposes to give the Minister further oversight of the CPSO. Given the CPSO's track record in persecuting Lyme doctors, this oversight is long overdue!

Please contact Lyme Action if you have any problems with the above links and we can email the files directly to you. Once you have opened the files linked above, you can save them to your computer by selecting File, Download file as, Word.

Let's make our voices heard on these important issues. You are encouraged to send these letters this week given the time-sensitive nature of both Dr. Krop's investigation and our petition before the Minister.

Thank you for your ongoing support -- together we are making a difference!

Wall of Hope 2009 - Toronto

Thank you to all who helped to make Thursday's event a success! Here is a sampling of photos received from attendees. Thanks to those who have sent them in. Please send in your best ones and we can add them to the album.



This post will be updated as more material becomes available. To begin with, here is coverage from the CTV National News as shown Sunday 20 September 2009. The version on the CTV website can be found here (but it doesn't include the intro by Sandie Rinaldo you will see below). And here is the accompanying written report on CTV.ca.



Here is a link to send feedback to CTV -- please let them know you appreciate this coverage.

"They are ticked off, and they want answers..." That is the opening line of an A-Channel News report about the Wall of Hope event in Victoria, BC. Here is an email to contact the BC Ministry of Health Services and let them know what you think about the outdated and misguided information given by Minister Kevin Falcon in this interview. The protocol Minister Falcon refers to is, of course, the IDSA guidelines whose validity were seriously called into question subsequent to the antitrust investigation against the IDSA concluded by the Connecticut Attorney General in 2008. And yet our health agencies continue to cling to these narrow guidelines, completely ignoring other opinions such as those from the International Lyme and Associated Diseases Society (ILADS).



On the day of the Wall of Hope event at Queen's Park, a petition was submitted to the Ontario Legislature regarding Lyme and Chronic Lyme disease issues in Ontario. The petition addresses issues of failing to acknowledge Lyme as endemic in Canada, inadequate testing and inadequate physician training. It was signed by more than 1,400 concerned persons from across the province. The Government of Ontario is officially required to respond to this petition within 24 sitting days of the House. The video below, courtesy of the Legislature's Broadcast and Recording Service, is of the petition presentation in the Legislature.

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.