(Via lymedisease.org - formerly CALDA) ***Please note that for Canadians simply click your country - it will not allow a Province or Territory.
"Treatment guidelines are tremendously important in determining your medical treatment options. All important treatment guidelines are listed by the National Guidelines Clearinghouse (NGC). NGC requires that guidelines be updated every 5 years.
The IDSA has not revised its guidelines for more than 5 years. Nevertheless, the NGC recently permitted them to continue listing the guidelines – without updating them – based on the IDSA’s claim that the antitrust review process fulfilled NGC review requirements.
This is wrong because:
1. The IDSA antitrust review panel was expressly NOT empowered to revise or update the guidelines;
2. The IDSA told the NGC that it had internally reviewed the guidelines in 2011 and decided they did not require change. However, this review is not listed on their application to the NGC nor is the process of any such review disclosed – as required by NGC guidelines;
3. The IDSA antitrust review process recommended over 25 changes to the guidelines—none of which have been implemented. There also was no consensus on mandatory lab testing for diagnosis; and
4. The 2006 guidelines are not current since they do not reflect new science including the Barthold mouse study and the Embers monkey study. Both studies found persistent infection, which is denied in the 2006 guidelines.
Sign the petition to urge:
The NGC to remove the guidelines as its listing rules require.
The IDSA to revise its guidelines in a transparent process that includes both patient advocacy representatives and physicians who treat chronic Lyme disease. "
http://www.lymedisease.org/petitionscript/index.php
Wednesday, February 8, 2012
Monday, November 21, 2011
WHOLE LIFE EXPO 2011
Come meet members of the Lyme Action Group at the Whole Life Expo this weekend, November 25th-27th.
Visit us at booth 157. The book 'Ending Denial' will be available for purchase.
For more information about the Expo:
http://wholelifecanada.com/
Visit us at booth 157. The book 'Ending Denial' will be available for purchase.
For more information about the Expo:
http://wholelifecanada.com/
Monday, March 21, 2011
Nicole Edwards' CD Release Concert
Featuring: Ken Whiteley
Special guest: Scott Merritt
WHEN: Sunday April 17th
WHERE: Hugh’s Room
2261 Dundas West, Toronto
Open for Brunch: 1pm
CONCERT TIME: 2pm
TICKET PRICE: $15 in advance/$17 at the door
Special message from Nicole: Two for One Special for my Lyme Peers. Just mention lyme when you purchase
your ticket and you'll receive a second ticket free!
Check out Nicole’s music at:
Friday, October 15, 2010
ILADS Conference 2010
Just a side-note that next year's ILADS conference will be held in Canada in Toronto. It's scheduled for 28-30 October 2011. Mark it on your calendars and spread the word. This will be a great opportunity to engage our medical community with the front line of this devastating but treatable disease.
The International Lyme and Associated Diseases Society (ILADS) is a nonprofit, international, multi-disciplinary medical society, dedicated to the diagnosis and appropriate treatment of Lyme and its associated diseases. ILADS promotes understanding of Lyme and its associated diseases through research and education and strongly supports physicians and other health care professionals dedicated to advancing the standard of care for Lyme and its associated diseases.
Tuesday, August 17, 2010
September Extravaganza
*****THE EXCITEMENT BEGINS ON SUNDAY!*****
Please be advised that there is a large book fair
happening around the Queen's Park area on Sunday.
For those driving to the Theatre screening of the film,
this event may affect road access around Queen's Park
Crescent, and immediately north thereof.
Please be advised that there is a large book fair
happening around the Queen's Park area on Sunday.
For those driving to the Theatre screening of the film,
this event may affect road access around Queen's Park
Crescent, and immediately north thereof.
(don't forget to dress warmly!)
If you live within driving distance of the Ontario's capital city, September is going to feel a lot like Lyme disease awareness month all over again. There are two back-to-back exciting events planned in the hope that some will be able to take part in both.
Screening of Under Our Skin
The first is a theatrical screening of an award-winning Lyme documentary on Sunday, September 26th. A gripping tale of microbes, medicine & money, Under Our Skin exposes the hidden story of Lyme disease, one of the most controversial and fastest growing epidemics of our time. Each year, thousands go undiagnosed or misdiagnosed, often told that their symptoms are "all in their head." The film follows the stories of patients and physicians fighting for their lives and livelihoods, bringing into focus a haunting picture of the health care system and a medical establishment all too willing to put profits ahead of patients.
Under Our SkinThere will be a matinée and evening showing, each followed by a VIP Panel discussion (including film director Andy Abrahams Wilson!). Proceeds from this event will support CanLyme's goal of establishing Lyme research and treatment facilities in Canada. A downloadable brochure (4 per 8.5x11" page) is available if you would like to invite friends, neighbours, doctors, etc. Complete event details and online or phone ticket sales can be accessed via CanLyme.com. Tickets will also be sold at the door, subject to availability. We are looking for volunteers to help distribute posters around Toronto, as well as assist on the day of the event. If you are able to volunteer your time, please contact Rob for more details.
Isabel Bader Theatre
Sunday September 26th
1:00pm matinée & 7:00pm evening screenings
3-hour event includes discussion panel after the film
Brochures and other info available before the event
Doors open 1 hour before scheduled time
Wall of Hope 2010
The second big event to tell you about is the annual Wall of Hope demonstration. Events are again being planned in several cities across the country this year. Our Toronto event will take place on Monday, September 27th on the south lawn of Queen's Park, right in front of the Ontario Legislature. The event will officially run from 12-noon until 1:00pm -- please come early and bring along a packed lunch if you would like to join us for a picnic on the beautiful Legislature grounds following the festivities. We are honoured this year to welcome CanLyme president Jim Wilson to our event, in addition to MPP France Gelinas and lawyer Paul Haefling. Please make sure your MPP is aware and invite them to come and learn more about Lyme issues facing patients throughout Canada. Please put your creative juices to work and bring along some eye-catching posters.
Wall of HopeThe green arrow (see map below) marks our meeting place on the Legislature grounds, right outside the grand main entranceway. There is no parking available immediately on the grounds. Limited paid parking is available on the University grounds on the west side of Queen's Park as well as area municipal lots. The TTC Queen's Park subway stop is conveniently located steps from where we will be meeting.
Queen's Park (south lawn)
Monday September 27th
12 noon until 1:00 pm
Picnic lunch to follow event
Lyme Action is pleased to be handing out complimentary T-shirts to attendees -- come early and get one while supplies last! This is our thank-you to you for your continued support. Thank you!
View Larger Map
Remember, both of these September events are scent-free.
So September will be a great time to be in Toronto. Consider making a weekend of it and take in both events. Please help us spread the word. Let's keep the momentum building and keep raising awareness about Lyme issues. There has been some good progress this year, but there is so much still to do. See you in September! Drop Rob an email if you have any questions.
Tuesday, July 27, 2010
Turning up the volume / Stage 2
Recently we gave the Ontario Ministry of Health some grief regarding the quiet launch of its Lyme awareness campaign in June. Awareness is so vitally important, if it is not done effectively, one would question why they would do it at all. Well we must give credit where credit is due -- we are very pleased to report that, as hoped, the Ministry has indeed turned up the volume.
The Ministry's Let's Target Lyme campaign continues to roll out. Brochures are reported to be popping up in LCBOs and other retail establishments. They have also added an informative and entertaining video segment to their website, introducing a character named Curtis "The Bug Guy". The video clip is embedded below -- definitely worth a watch.
Included in the video are instructions of how to properly remove and save a tick, and take it to your doctor for testing. What the Ministry doesn't tell you here is that the existing tick testing protocol dictates that only Deer Ticks will be tested -- any other types will simply be discarded, regardless of whether you have symptoms of Lyme disease or not. Granted, Deer Ticks are the most common tick known to spread Lyme in Ontario -- but they are definitely not the only ones. As we have come to understand, migrating birds play a major role in the distribution of ticks throughout the province. We have a gentleman in our group, for example, who was bitten and infected by a Lone Star Tick up in Ontario's cottage country. As its name would imply, this kind of tick is much more prevalent in the south-western United States. But just as our Border Control Services do not stop ticks at the border to Canada, similarly, migrating birds don't control what kind of ticks hitch a ride with them. This is a weak point in the Ministry's tick testing protocol that should be addressed.
Additionally, over the last several weeks, the Ministry has been sending out a mailer to Ontario physicians across the province. You can access the 2-page document here (Message from the Chief Medical Officer of Health). One of the highlights of this document is that it dispels the myth that Lyme disease can only be contracted in endemic regions. It informs doctors that Lyme can be contracted anywhere in Ontario. Unfortunately, the document fails to inform doctors about the limitations of the existing Lyme testing protocol in Canada. This is where the whole awareness campaign gets a very low mark -- and it really could do more harm than good. Unless physicians know that the existing testing protocol is unreliable, many Lyme patients will unfortunately be misdiagnosed. This is precisely what happened to so many of us across the country who are now battling Chronic Lyme disease. A delayed diagnosis most certainly results in serious chronic illness. Physicians need to be made aware that a negative Lyme test should never ever be used to rule out Lyme disease. Much more needs to be done to make physicians aware of the clinical presentations of this disease. To that end, CanLyme has prepared this "For Physicians" information -- what every physician should know about the disease.
Last week, CTV News aired a Lyme story on its Lifetime segment, with Health Reporter Pauline Chan. You can watch the video clip here. CTV continues to do a great job of providing good information about Lyme disease, such as:
CTV kindly acknowledged that last week marked the official retirement of Ontario Lyme physician Dr. Jozef Krop (pictured above). What they left out, was that this doctor's retirement is largely the result of an investigation by the College of Physicians and Surgeons of Ontario (CPSO). The CPSO launched this investigation back in 2008, without one single patient complaint. The investigation centred around the doctor's treatment of Lyme disease. Dr. Krop, who has taken a particular interest in this disease, is trained by the International Lyme and Associated Diseases Society (ILADS). He used ILADS treatment protocols based on the latest research into this debilitating illness. But it so happens that the ILADS approach to Lyme disease is distinctly different from that of the mainstream Infectious Diseases Society of America (IDSA). And this is the centre of the political divide that has callously left so many Lyme patients without access to appropriate care. The CPSO, like other Colleges in the country, has ruthlessly declared open season on progressive Lyme doctors who are earnestly trying to help their patients. So Dr. Krop's departure means that experienced Lyme physicians are perilously close to becoming extinct in our province, forcing many patients to make the costly choice of seeking medical care in the United States. Infectious Disease specialists in Ontario routinely turn away Lyme patients because they have negative Canadian Lyme tests on file -- tests that are known to be seriously flawed and produce high rates of false negative results. While several American States have passed Lyme physician protection laws (Massachusetts is the most recent as of this month), the political courage has yet to be found in Canada to take such a bold move in support of Lyme patients and their physicians. There is so much more that still needs to be done.
A grateful shout-out goes out this month to Dale Goldhawk. His popular program, Goldhawk Fights Back, helps consumers where the powers-that-be have failed to do so. Recently he has taken up the cause of Lyme patients in Ontario. He has conducted several Lyme-related interviews on Zoomer Radio AM740, including an interview with Dr. Maureen McShane, who treats Lyme disease patients in New York State. There is another interview scheduled this week, Thursday July 29th, at 12:10pm (the whole program runs from 11:00am until 1:00pm) with an Ontario Lyme patient/patient advocate. If you are not within broadcasting range, you can listen live from the station's website. Don't miss it!
While all of these positive efforts are underway, there are still those who are steadfastly opposed to making changes to Lyme treatment protocols in Canada. You can count among them our Federal Health Minister, Ontario's Health Minister and many of her provincial counterparts. What these people fail to comprehend is that the perceived risks of aggressive and early preemptive treatment of Lyme disease do not even remotely begin to compare to the devastation that late stage or Chronic Lyme disease causes to patients. The message of many of these policy makers is that Lyme is difficult to get, easy to treat, and our testing protocols are not only reliable, but if anything tend to produce false positive results. Here is a recent example of a particularly unhelpful Public Health Official from a news piece in British Columbia (Disease Expert Dismisses Lyme diagnosis).
And on that note, a closing thought:
p.s. Stay tuned for details of events coming up in September, including a Toronto screening of Under Our Skin (with special guest and film director Andy Abrahams Wilson!) and the annual Wall of Hope public demonstration at Queen's Park.
The Ministry's Let's Target Lyme campaign continues to roll out. Brochures are reported to be popping up in LCBOs and other retail establishments. They have also added an informative and entertaining video segment to their website, introducing a character named Curtis "The Bug Guy". The video clip is embedded below -- definitely worth a watch.
Included in the video are instructions of how to properly remove and save a tick, and take it to your doctor for testing. What the Ministry doesn't tell you here is that the existing tick testing protocol dictates that only Deer Ticks will be tested -- any other types will simply be discarded, regardless of whether you have symptoms of Lyme disease or not. Granted, Deer Ticks are the most common tick known to spread Lyme in Ontario -- but they are definitely not the only ones. As we have come to understand, migrating birds play a major role in the distribution of ticks throughout the province. We have a gentleman in our group, for example, who was bitten and infected by a Lone Star Tick up in Ontario's cottage country. As its name would imply, this kind of tick is much more prevalent in the south-western United States. But just as our Border Control Services do not stop ticks at the border to Canada, similarly, migrating birds don't control what kind of ticks hitch a ride with them. This is a weak point in the Ministry's tick testing protocol that should be addressed.
Additionally, over the last several weeks, the Ministry has been sending out a mailer to Ontario physicians across the province. You can access the 2-page document here (Message from the Chief Medical Officer of Health). One of the highlights of this document is that it dispels the myth that Lyme disease can only be contracted in endemic regions. It informs doctors that Lyme can be contracted anywhere in Ontario. Unfortunately, the document fails to inform doctors about the limitations of the existing Lyme testing protocol in Canada. This is where the whole awareness campaign gets a very low mark -- and it really could do more harm than good. Unless physicians know that the existing testing protocol is unreliable, many Lyme patients will unfortunately be misdiagnosed. This is precisely what happened to so many of us across the country who are now battling Chronic Lyme disease. A delayed diagnosis most certainly results in serious chronic illness. Physicians need to be made aware that a negative Lyme test should never ever be used to rule out Lyme disease. Much more needs to be done to make physicians aware of the clinical presentations of this disease. To that end, CanLyme has prepared this "For Physicians" information -- what every physician should know about the disease.
Last week, CTV News aired a Lyme story on its Lifetime segment, with Health Reporter Pauline Chan. You can watch the video clip here. CTV continues to do a great job of providing good information about Lyme disease, such as:
- the number of cases of the disease continues to rise in Ontario
- the disease is difficult to detect
- it can cause years of debilitating illness if not diagnosed quickly
- up to half of those infected may not even show a Lyme rash
- it is often misdiagnosed as MS, Chronic Fatigue, Arthritis and many other illnesses
CTV kindly acknowledged that last week marked the official retirement of Ontario Lyme physician Dr. Jozef Krop (pictured above). What they left out, was that this doctor's retirement is largely the result of an investigation by the College of Physicians and Surgeons of Ontario (CPSO). The CPSO launched this investigation back in 2008, without one single patient complaint. The investigation centred around the doctor's treatment of Lyme disease. Dr. Krop, who has taken a particular interest in this disease, is trained by the International Lyme and Associated Diseases Society (ILADS). He used ILADS treatment protocols based on the latest research into this debilitating illness. But it so happens that the ILADS approach to Lyme disease is distinctly different from that of the mainstream Infectious Diseases Society of America (IDSA). And this is the centre of the political divide that has callously left so many Lyme patients without access to appropriate care. The CPSO, like other Colleges in the country, has ruthlessly declared open season on progressive Lyme doctors who are earnestly trying to help their patients. So Dr. Krop's departure means that experienced Lyme physicians are perilously close to becoming extinct in our province, forcing many patients to make the costly choice of seeking medical care in the United States. Infectious Disease specialists in Ontario routinely turn away Lyme patients because they have negative Canadian Lyme tests on file -- tests that are known to be seriously flawed and produce high rates of false negative results. While several American States have passed Lyme physician protection laws (Massachusetts is the most recent as of this month), the political courage has yet to be found in Canada to take such a bold move in support of Lyme patients and their physicians. There is so much more that still needs to be done.
A grateful shout-out goes out this month to Dale Goldhawk. His popular program, Goldhawk Fights Back, helps consumers where the powers-that-be have failed to do so. Recently he has taken up the cause of Lyme patients in Ontario. He has conducted several Lyme-related interviews on Zoomer Radio AM740, including an interview with Dr. Maureen McShane, who treats Lyme disease patients in New York State. There is another interview scheduled this week, Thursday July 29th, at 12:10pm (the whole program runs from 11:00am until 1:00pm) with an Ontario Lyme patient/patient advocate. If you are not within broadcasting range, you can listen live from the station's website. Don't miss it!
**********************************
Please send a brief note of appreciation to Dale Goldhawk and thank him for his interest in Lyme issues and what he is doing to increase awareness. A link to the audio from Thursday's interview will be posted when it becomes available.
**********************************
While all of these positive efforts are underway, there are still those who are steadfastly opposed to making changes to Lyme treatment protocols in Canada. You can count among them our Federal Health Minister, Ontario's Health Minister and many of her provincial counterparts. What these people fail to comprehend is that the perceived risks of aggressive and early preemptive treatment of Lyme disease do not even remotely begin to compare to the devastation that late stage or Chronic Lyme disease causes to patients. The message of many of these policy makers is that Lyme is difficult to get, easy to treat, and our testing protocols are not only reliable, but if anything tend to produce false positive results. Here is a recent example of a particularly unhelpful Public Health Official from a news piece in British Columbia (Disease Expert Dismisses Lyme diagnosis).
And on that note, a closing thought:
Welcome to Stage 2.All truth passes through three stages. First, it is ridiculed. Second, it is violently opposed. Third, it is accepted as being self-evident.
Arthur Schopenhauer
German philosopher (1788 - 1860)
p.s. Stay tuned for details of events coming up in September, including a Toronto screening of Under Our Skin (with special guest and film director Andy Abrahams Wilson!) and the annual Wall of Hope public demonstration at Queen's Park.
Monday, June 14, 2010
CBC Radio -- The Current
Good morning Canada! -- and beyond.CBC Radio listeners were treated to an interesting conversation about Lyme disease this morning. Anna Maria Tremonti, host of the The Current,
interviewed two doctors; Dr. Maureen McShane, a physician practising in New York State, and Dr. Nicholas Ogden, with the Public Health Agency of Canada.So let's compare these two fine people. Dr. McShane is a practising physician. Dr. Ogden researches ticks. Dr. McShane treats Lyme patients. Dr. Ogden researches ticks. Dr. McShane is a recovered Lyme patient herself, and has experienced the whole gamut of the Lyme adventure with which so many of us are intimately familiar. Dr. Ogden.... researches ticks.
I'm sure you're getting the point. Dr. McShane has a wealth of real life experience, both personally and through her practise. And while Dr. Ogden cautions about over-reacting to the Lyme crisis, Dr. McShane knows first hand that Canada's current testing protocols are a colossal waste of time, and that the result of a delayed diagnosis is devastating for Lyme patients -- resulting in long-term chronic health issues and sometimes even death.
And Dr. Ogden's suggestion that we will get a much clearer picture about the magnitude of the disease in our country now that it is nationally reportable... well, that's the kind of material that might well benefit your vegetable garden. The truth is that national reporting of Lyme disease will continue to be a fruitless (and highly misleading!) endeavour, as long as it is based on Canada's seriously flawed testing protocol, with its high incidence of false negative results.
The vast majority of Lyme patients in our country were diagnosed with the help of a good quality test from a fully certified and accredited tick-borne illness laboratory in the United States, while their Canadian lab tests were negative. All of us in that category are not included in those wonderful national statistics about Lyme disease.
Two thumbs up to Dr. McShane for boldly speaking out on this important subject.
If you missed this morning's radio show, you can access it on the CBC website (see Pt2: Lyme disease). Please provide some feedback to The Current -- let them know what you think and encourage them to do more coverage about Lyme.
Wishing you all good health!
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