CT Lyme bill passes with unanimous approval!

The Connecticut Lyme bill received unanimous approval in that State's House of Representatives today. The bill is designed to protect doctors who treat Lyme disease and, in particular, Chronic Lyme disease. Introduced by State Representatives Kimberly Fawcett and Jason Bartlett, the bill also received unanimous support from the State's Joint Committee on Public Health in an earlier vote.

The bill has the support of the Connecticut State Medical Society, although not from its Department of Public Health.

Today's vote in the House of Representatives brings the bill one important step closer to becoming law. It is a shame that medical systems should become so broken that legislative solutions would seem to be the most efficient way of addressing such issues -- perhaps this is what is needed in Canada. Connecticut may soon join the ranks of New York and Rhode Island, which already have Lyme doctor protection laws in place. The bill now moves on to the Senate.

"I had no idea what last July was going to present to me when my husband was diagnosed with a life threatening case of Lyme disease," said Rep. Fawcett.

State Representative Jason Bartlett has made this his cause because his mother has Chronic Lyme disease.

For the full story, see this article on News Channel 8, wtnh.com. Below is a video report from News Channel 8 as well.



Here is another well-written piece from The Connecticut Post. "[The bill] comes down on the side of people who suffer from Lyme in this big debate," said state Rep. William Tong, D-Stamford, a bill co-sponsor. "It says the scientific community can have that debate, but we're not going to let anybody else go without treatment."

Debate: Now there is a concept to contemplate; not medical Colleges shutting down doctors who are trying to help those suffering from Chronic Lyme disease; not the IDSA summarily ignoring the more than 19,000 articles in medical literature that demonstrate the persistence of Chronic Lyme infections; not Health Canada revising Canada's Lyme disease guidelines without the highly qualified leadership of the Canadian Lyme Disease Foundation; not Health Canada sticking by Lyme tests and a National Case Definition that have been shown to be seriously flawed. Medical progress should not be defined by what big pharmaceutical dollars call progress. The medical community needs to get to a place where it can have a meaningful conversation about emerging medicine and competing ideas.

Lyme Research in Canada!

The first-of-its-kind independent Lyme research facility opened its doors amidst great anticipation at the Columbia University Medical Center in northern Manhattan, NY, back in early 2007. Columbia's Lyme and Tick-Borne Diseases Research Center was established as "the first academic research center in the [United States] to focus multidisciplinary research on Chronic Lyme disease", under the direction of the highly respected Brian Fallon, MD, MPH. The Center's website includes information on their latest research and extensive patient resources.

Yesterday the official opening of the Dr. E. Murakami Centre for Lyme Research, Education & Assistance Society was announced on CanLyme. Hat's off to Dr. Murakami. Considered by many to be Canada's foremost Lyme doctor (he has taken more than 20 Chronic Lyme patients out of "permanent" wheelchairs!), he is no stranger to the Lyme controversy -- see Dr. Ernie Murakami, MD on CBC Television.

The full announcement about the new research centre follows:

It is with great excitement that we announce the official opening of the Dr. E. Murakami Centre for Lyme Research, Education & Assistance Society. It is Dr. Murakami's life work to make a difference for those suffering with Lyme. Up until now, Dr. Murakami has been fighting this fight as a lone doctor. Now he has a Society to fall back on, representative of all he believes in. He is the founder and president of this society. This will now be his lasting legacy.

The Society is registered with the Government of Canada as a Not-for-profit Society. It is currently run by a board of nine directors. There is a good line up of experiences within the board members to assist in achieving the goals of the Society. As the Society is a not-for-profit organization, it relies heavily on donations, grants and outside funding. The society website has been set up to accept donations from anyone interested. Memberships are also available, for those who are able, which will allow them to be part of the Society and assist with fundraising activities and efforts.

Up until now, Dr. Murakami has been funding his efforts on his own. As all of you know, he does all of his communications with sufferers au gratis. We hope you will join the official Society of Dr. M in some way, shape or form that suits you best. The first priorities of the Society is to advance the research efforts as quickly as possible. There is a plethora of information and data that has been gathered from patients just like you. This information and the work of cooperative laboratories will fuel the truth forward.

We are looking forward to a positive future and some exponential changes for those with Lyme and co-infections. Please visit the Society website and bookmark it. We hope you will be able to help out anyway you can. http://www.murakamicentreforlyme.org

Any questions or problems with the site, please contact me directly at info@murakamicentreforlyme.org

Sincerely yours,
Melanie Lauren
Forum Admin
Marketing, Media and Fundraising Director
Dr. E. Murakami Centre for Lyme

Update on CT Lyme bill

Here is an update on the Connecticut Lyme Bill we told you about in February (see The poli-ticks of Lyme), where State Representatives Kim Fawcett and Jason Bartlett introduced a bill to protect Connecticut Lyme physicians.

Fawcett, whose husband battled to get treatment for Lyme disease last year, had this to say: "[A perception] that a lot of doctors out there maybe just think, Lyme Disease, I don't want to get involved in it. So what they do is deflect to their patients, 'I can't really treat you here, you have to find a specialist.' Our legislation doesn't say what they do. It just gives them the freedom to diagnose clinically and treat how they see fit."

This clip is from News Channel 8, as posted on WTNH.com.

Lyme film at Toronto Total Health Show... and much, much more!

A screening of the award-winning Lyme documentary Under Our Skin will take place at North America's premier natural health show in Toronto this April.

Date: Sunday, April 19, 2009
Time: 4:00 - 6:00 pm
Location: Room 203, Metro Toronto Convention Centre, North Building. Admission to the film is free for those attending Total Health 09 (as a minimum, a Total Heath Sunday "Lecture Pass" is required to attend the film).

This highly acclaimed US documentary reveals the untold story of the massive spread of Lyme disease throughout North America - "an emerging epidemic larger than AIDS". It has been discovered, that up to 50% of patients with multiple sclerosis and other neurodegenerative disorders including autism, Parkinson's, ALS, as well as chronic fatigue and fibromyalgia may actually have Chronic Lyme disease from a tick bite. It's detectable, treatable and reversible, even in its chronic form, yet thousands are suffering from misdiagnosis.

Also at the show, Jozef Krop, MD, will make two Lyme disease presentations. Dr. Krop, known internationally for his pioneering work in Multiple Chemical Sensitivity, is trained to treat Chronic Lyme disease by the International Lyme and Associated Diseases Society and has many years experience with Ontario's victims of Chronic Lyme. You can visit Dr. Krop at Booth 904 (with KOS Publishing). His presentation details are below:

Lyme Disease: It's Treatment and Politics
Saturday, April 18, 4:00 - 5:00 pm, Room 203
Sunday, April 19, 3:00 - 4:00 pm, Room 203 (immediately before the film)

Dr. Krop will speak about internationally validated diagnosis and treatment protocols and what we all must do to persuade provincial and federal governments to take this growing epidemic seriously. Lyme contamination of the blood and organ donor supply is a potential public health disaster. In Canada, there is no effective screening or treatment for Chronic Lyme disease. The Ontario College of Physicians and Surgeons does not recognize international diagnostic and treatment protocols and intimidates physicians willing and trained to treat Chronic Lyme disease.

And last but not least, from the author who brought us "What Part of No! Don't They Understand? Rescuing Food and Medicine from Government Abuse", medical science author Helke Ferrie of KOS Publishing will launch her new book at this year's Total Health Show: "Chronic Lyme Disease in Canada - The Persecution of Doctors Able to Treat It and the Denial of Treatment Choice to Patients". Don't miss the launch of this much-anticipated book that's sure to become an important Lyme reference. Revised and updated in September 2008, Ms. Ferrie's previous book can now be downloaded free of charge from the KOS website.

You will be able to meet Ms. Ferrie and members of Lyme Action Group at Booth 904 in the Exhibit Hall.

BC's College vs Cubberley -- Round 2

The gloves are off...

You will recall that in December we told you about MPP Cubberley's feisty letter to the BC College of Physicians and Surgeons -- the original post is linked here. In addition to several important criticisms and strong points raised by Mr. Cubberley, he offered to share with the College several case histories, personal stories of the devastation faced by Lyme patients in BC. The College responded. "The [Executive] Committee has respectfully declined your offer." Pretty much sums it up. We wouldn't want real life medical experience to interfere with medical policy now would we?

Seems the College's response did not sit well with Cubberley, and he was prompted to try once again to get his message across. Here are some highlights from his letter dated March 2nd:

"Your letter did not respond to the substance of mine, and you did not comment on the disparity between your position on Lyme diagnosis and that of the BC CDC and the Ministry of Health. This is a significant problem for patients in BC, because the College's guidelines determine whether and when patients with Lyme are diagnosed and effectively treated. If these guidelines are flawed (as your advice about rash and test indicate they are) many patients will not receive diagnosis and the medically necessary care they're entitled to. If doctors are uninformed about Lyme symptoms, causes, and the unreliability of tests like the ELISA, they are more likely to diagnose Fibromyalgia, MS, CFS or any of a number of other illnesses sharing some symptoms with Lyme. These diagnoses would all miss the opportunity to treat Lyme infection effectively in its early stage when it's most curable."

"I would urge that, in the public interest, the College distance itself from the many scientifically unsupported components of the 2006 IDSA guidelines, and that it mandate made-in-Canada guidelines formulated from fair consideration of all scientific evidence -- including the clinical practice experience of physicians who treat Lyme beyond the existing guidelines."

"In the public interest..." Wow, what a concept! Such an approach could revolutionize medicine as we know it.

For your reading enjoyment, here are links to both the College's letter and Mr. Cubberley's subsequent reply.

Thank you Mr. Cubberley. Here is his email should you wish to send a brief note of encouragement for this excellent work on behalf of the Lyme community.

Have you shared your Lyme experience with your elected representatives yet? Yours might just be the story that gets another politician on our side. We need more brave souls like Mr. Cubberley. Together we're making a difference. Please write today!

Signatures and stuff

Back in November you will recall we announced a petition to be directed to the Ontario Legislature (you can read the previous post here, complete with the full text of the petition). The response has been tremendous, with over 700 signatures collected to date. Thank you and please keep them coming! If you would like a copy of the petition to gather signatures in your area, please drop us an email -- we'd be happy to send you a copy. Remember that this petition is directed to Ontarians as it's for our provincial legislature, and it needs to be signed in person (no electronic signatures).

The screenings of the award-winning film Under our Skin have been a great success. The requests for additional screenings continue to pour in. While we are working on that, we would like to extend an invitation to you -- if you know of a suitable venue (with projector, DVD player, big screen and sound) and have a target audience, please contact us and we'll do our best to work with you to make it happen. Lyme Action has purchased a version of the film with community screening rights for a variety of settings.

Lastly, a thank you to the many who are supporting us financially. Your gifts are an important contribution as we continue to increase awareness and lobby our government officials for improved Chronic Lyme disease public policy in Canada. Please consider making a donation today. Secure donations can be made through the PayPal link on this site. Donations to Lyme Action Group can also be made at any TD Canada Trust branch.

Together we are making a difference!

Half Million Dollar Donation to Lyme Research in Canada

Some amazing news to share -- yes, on our side of the border even.

In a press release put out today, the Canadian Lyme Disease Foundation (CanLyme) has announced receipt of a half million dollar donation toward their goal of establishing an independent Lyme research facility in Canada.

The donation was made anonymously by a family that had 2 members afflicted with the illness -- and went through the same nightmare faced by most Lyme patients in Canada.

“This family struggled within the Canadian health care system, as are thousands of Canadians, and were let down by poor testing and a false confidence within the medical community that Lyme disease is rare in Canada. The medical leadership in Canada, including the federal and provincial governments are letting us down. Doctors and patients are not told of the serious limitations of the tests used - limitations acknowledged by the global science community.”

You can read the complete press release here.