Canada
HEALTH CANADA NEWS release – February 24, 2020
Health Minister tables Canada Health Act Annual Report in Parliament
The report is developed by the federal government in collaboration with provincial and territorial governments.
The Canada Health Act came into force in 1984 but effective April 2020 the new Diagnostic Services Policy will come into effect which aims to eliminate patient charges for medically necessary diagnostic services whether provided in a hospital or in a public or private clinic. If a province or territory permits extra-billing or user charges, then a dollar-for-dollar deduction must be taken from that jurisdiction’s federal cash transfer. For the first time, the provincial or territorial extra billings are shown in its financial statements. To read the entire News Release, please go to:
https://www.canada.ca/…/health-minister-patty-hajdu-tables-…
To read the detailed report for your province or territory, please go to:
https://www.canada.ca/…/canada-health-act-annual-report-201…
Health Canada announces funding to help people living with chronic pain
Chronic pain is a serious health issue that affects both the physical and mental health of too
many Canadians. The Government of Canada knows the importance of ensuring that people
living with pain have access to the care and support they need. That’s why today,
on behalf of the Honourable Patty Hajdu, Minister of Health, Jim Carr,
Member of Parliament and Special Representative for the Prairies, announced
almost $3 million to improve access to care and services for people living with chronic pain.
Through Health Canada’s Substance Use and Addictions Program (SUAP), the University of Saskatchewan will receive $1.7-million to increase access to chronic pain services. Through this project, pharmacists will
receive special training to work with patients living with chronic pain. These pharmacists will provide ongoing advice and support, and ensure that patients have the information they need to use their pain medication safely.
https://www.canada.ca/en/health-canada/news/2020/03/government-of-canada-announces-funding-to-help-people-living-with-chronic-pain.html?fbclid=IwAR2D4uKqNOl8VkNebnNn3B7aPJgufkKzDpe4Js7ROjfIgwos0PteNDw4pGw
Unintended harms: How CIHI is helping Canadians receive safer care
Health systems across the country continuously strive to make Canadian health care safer. Learn how we help these efforts through an interview with Yana Gurevich, manager of Health Indicators and Client Support, and Mélanie Josée Davidson, director of Health System Performance.
https://www.cihi.ca/en?fbclid=IwAR0wnb4sucPLvPoWT9SNXWM-7bZzwhqGfegsIDtqZ26a5IS23MNns41-m7E
Dr. Alain Moreau's Update on IcanCME Research Network
In IMHA’s March 2020 newsletter,
Also, Call for Applications: IMHA Patient Engagement Research Ambassadors (PERA).
For details, and more articles of interest, please go to:
http://suivi.lnk01.com/…/216324dbc99b3bddfcbcf5042c8cfbc0b6…
In January, the WHO released ICD-10 Version: 2019. With ICD-11 on the horizon, this release will
be the final update for the WHO’s international version of ICD-10, apart from corrections and
exceptional additions. In March 2016, a representative from the Canadian Institute
for Health Information submitted a request and supporting rationale to the ICD-10 Update and
Revision Committee (URC) for removal of the prefix “Benign” from
“Benign myalgic encephalomyelitis”. This request for a change was
approved by the URC in September 2016 for implementation in the next release.
https://dxrevisionwatch.com/2020/02/
Development and validation of the Cambridge Multimorbidity Score
BACKGROUND: Health services have failed to respond to the pressures of multimorbidity. Improved measures of multimorbidity are needed for conducting research, planning services and allocating resources.
METHODS: We modelled the association between 37 morbidities and 3 key outcomes (primary care consultations, unplanned hospital admission, death) at 1 and 5 years. We extracted development (n = 300 000) and validation (n = 150 000) samples from the UK Clinical Practice Research Datalink. We constructed a general-outcome multimorbidity score by averaging the standardized weights of the separate outcome scores. We compared performance with the Charlson Comorbidity Index.
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Continuity of care policy exposes fault lines in the medical profession Dr. Tola Overduin |
Waterloo, ON | December 19, 2019
Some specialists and family doctors in Ontario are locked in a standoff over who should take responsibility for contacting patients about appointments. In October, the College of Physicians and Surgeons of Ontario (CPSO) released a suite of policies on continuity of care that set new expectations for doctors around availability and coverage, managing tests, transitions in care, and walk-in clinics. Medical regulators in other provinces have set similar policies in recent years, spurred by the death of an Alberta man in 2012 following multiple failures in care. “We were one of the only jurisdictions that had not really yet waded into this territory,” says Craig Roxborough, manager of policy at the CPSO.
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The fall-out from the restriction of pain medications has been devastating.
Pain levels are soaring, quality of life has plunged, some patients are contemplating suicide, some did commit suicide, while still others are turning to street dealers out of sheer desperation.
Pharmacies began refusing to fill prescriptions or, if they were, they were making it difficult for patients. They are not filling a prescription until the very day it is due or later, giving patients “dire” warnings about their medications, and insisting they take naloxone to reverse a possible overdose. Realize these are patients who have been historically properly prescribed, and taking their medications for years with benefit and no ill effects."
Ontario Ministry of Health
Established by the Kaplan Board of Arbitration, the physician-led Appropriateness Working Group (AWG) reviewed several OHIP-insured services. The AWG used evidence, best practices and expert opinion to identify and update the delivery of certain services to help ensure the most effective care for Ontario patients.
Beginning October 1, 2019, the following OHIP-insured services will be updated as a result of the working group's review.
Canadian Medical Association Journal
Canada
This announcement is from the Federal Government ‘Health Canada’. Note that Health Plans are administered by Provincial Governments but they will have to comply to Health Canada changes.
Page 13 - SPECT & PET Scans
Myocardial Perfusion Scintigraphy with Rubidium Positron Emission Tomography (PET)
New Fee Codes
Two new fee codes have been added for Myocardial Perfusion Scintigraphy:
• J900 ($43.50 Professional, $29.65 Technical) - application of Rubidium PET for cardiac perfusion (resting, immediate post stress); and
• J901 ($43.50 Professional, $29.65 Technical) - application of Rubidium PET for cardiac perfusion (delayed).
These are new add on fee codes only eligible for payment in patients with:
• known coronary artery disease; or
• suspected coronary artery disease and who are at intermediate risk (10%-90%) of significant ischemia where the need for intervention is uncertain.
Myocardial Perfusion Scintigraphy with Single-Photon Emission Computerized Tomography (SPECT) Fee Code Revisions (Descriptions and/or Payment Requirements)
The Schedule was revised to clarify that:
• J866 – application of SPECT (maximum of 1 per examination) is an add on to J807 -
resting, immediate post stress; and
• J809 – application of SPECT (maximum of 2 per examination) is an add on to J808 -
delayed.
http://www.health.gov.on.ca/.../bulletins/4000/bul4726.pdf
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Dr Moreau of St Justines, Montreal
1.4 million over 5 yrs with = $280,000 per year.
There are approx 50,000 Canadians with Benign Myalgic Encephalomyelitis Diagnosis in their files. The rest are ME/CFS. We are better than the American attitude towards this issue. Canadian, Dr Carruthers et el’ specifically wrote the CCC for ME/CFS but he also lead the team with the ICC for ME only. GAME-ICC would like to see CFS abolished in favour of the ICC because it can be used to diagnose patients with Mild to Very Severe and the stigma of CFS can finally be buried.
Both CFS and ME can be debilitating and the sooner Canada takes a stand in using research criteria of the CCC or the ICC as the bar of standard, we cannot move forward. Keep an eye on NCNED Australia Research who has adopted this standard and are light years ahead of the Americans as far as research is concerned.
Kudos to the advocates who achieved results. This is an election year and many promises are being made. I hope you use your skills to keep this funding alive no matter who wins in October.
WELL DONE.
https://montrealgazette.com/news/local-news/health-canada-announces-1-4-million-to-research-chronic-fatigue-syndrome
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Canabis and Acquired Brain Injury
The Foundation Grant: 2018-2019 competition has approved 28 research grants, for a total investment of $81,416,036Footnote1. The average grant size is $2,907,716 over seven years.
As noted in the Review Process for the Foundation Grant program, CIHR committed to correct gender equity issues within the program. For the 2018-19 Foundation Grant competition, CIHR took corrective measures to ensure gender equity at stage 1 (by inviting additional female applicants to stage 2) and at the
Final Assessment Stage.
CIHR recently announced that the Foundation Grant program will be discontinued. As such, the 2018-19 competition is the last (i.e., no further Foundation Grant competitions will be launched).
http://www.cihr-irsc.gc.ca/e/51593.html?fbclid=IwAR3XiOv4RQDFbYiIKHEf9asISOFLr0qUuSJMlOrt14E3Tqb8fxGoG7z0rW8
Health Canada announces new reporting requirements for hospitals
June 26, 2019 - Ottawa, ON - Health Canada
Drugs and medical devices are an important part of Canada’s health care system, helping Canadians treat and prevent a variety of conditions. However, all drugs and devices involve risks, including the potential for serious side effects leading to emergency room visits and hospital admissions. Serious adverse drug reactions and medical device incidents are significantly under-reported, both in Canada and internationally.
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Advisory council calls for $15B universal, single-payer pharmacare plan Social Sharing
Dr. Eric Hoskins says national program would save $5B annually on drug costs
https://www.cbc.ca/news/politics/pharmacare-hoskins-recommendations-final-report-1.5171517?fbclid=IwAR2UMbGyCT5YXRPmvIqOtLbluUOQdJH0J8CrlEi6JV2sBxz59o7J_rMLhf0
Minister of Health announces appointments to the Governing Council of the Canadian Institutes of Health Research
Ottawa, Ontario – June 5, 2019 – The Honourable Ginette Petitpas Taylor, Minister of Health, announced today the appointment of a new Chairperson of the Governing Council of the Canadian Institutes of Health Research (CIHR). This marks the first time a woman has served as Chairperson of CIHR’s Governing Council. The Minister also named four new members to CIHR’s Council.
Workers’ Compensation and controversial illnesses byKatherine Lippel, Université du Québec à Montréal, Département des sciences juridiques, c.p. 8888, Succursale Centre Ville, Montréal H3C3P8, Québec, lippel.katherine@uqam.ca
Abstract
The Court of Appeal has ordered the workers’ compensation appeal tribunals to compensate when proof in a given case shows that it is more probable than not that working conditions or a work accident triggered the illness, even though no consensus exists in the scientific community with regard to that illness. As a result, access to compensation for fibromyalgia and, to a lesser extent, for Multiple chemical sensitivity syndrome, has been slightly less difficult. The article concludes with a discussion of the effects of the stringent criteria applied by the appeal tribunal on the workers suffering from a controversial illness and a reminder that workers and their families pay the price when compensation is denied because of controversy.
Introduction
Workers in Québec have the right to compensation if they become incapable of working because of illness attributable to a work “accident” or considered to be an “occupational disease”. When the aetiology of disease is controversial, as in the case of many musculo-skeletal disorders, or when the existence of a disease is questioned by the medical establishment, as in the case of chronic fatigue syndrome, fibromyalgia, multiple chemical sensitivities syndrome (MCSS), and sick building syndrome, it becomes difficult to access economic support from workers’ compensation systems in the event of disability. In this chapter we will examine the workers’ compensation appeal cases in Québec, with regards to these illnesses, https://docsbay.net/Workers-Compensation-For-Controversial-Illnesses?fbclid=IwAR1ZrSqxo5l-BkxybgtHNu3LtuzJ-NzOdkWlr4DmGyWxpEcfnW1o7WH2nG8
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Congratulations to CMAJ Poetry adviser Dr. Shane Neilson
on receiving the 2018 Impact Award from the Government of Canada’s Social Sciences and Humanities Research Council for his PhD work focusing on the complexities of chronic pain as both a medical and cultural issue.
“The language that doctors and society have to talk about pain is largely in terms of weaponry and damage,” he explains, referring to the common practice of describing pain as stabbing, burning, shooting or with other violent metaphors. “My idea was that the way we talk about pain is leading to poor outcomes, because we can only talk about it in terms of damage or impending damage by a weapon. I thought maybe if we let a little light in and came up with alternate metaphors, we might be able to change."
https://www.facebook.com/CMAJ.JAMC/posts/1951895491557493?hc_location=ufi
FROM the Canadian National ME/FM Action Network
Concerning upcoming Canadian Community Health Surveys. We are shocked and disappointed to see them direct the readers to treat the CFS question as synonymous to ME. Besides being scientifically/medically wrong, it is incredibly disrespectful to Dr. Carruthers who was their medical adviser for decades and whose leadership brought us the Canadian Clinical Consensus Criteria and later who gathered international experts to update the CCC to bring us the International Consensus Criteria. The ICC took extreme care to point out that using CFS as synonymous for ME is scientifically and ethically wrong.
It would appear that the National ME/FM Action Network is doing the same as ME Action USA, trying to fit as many illnesses as possible under an umbrella. What's next? Will they start adding all those illnesses targeted by Central Sensitization Syndrome theory? Those of us with ME-ICC are extremely disappointed and angry by the misrepresentation we receive from Canadian organizations who claim to care about us but really don't understand the first thing about being stigmatized
Canadian Community Health Survey - future plans
Dear Friends
The Canadian Community Health Survey (CCHS) has been a wonderful source of information about ME, FM and MCS.
The survey was conducted in 2001, 2003 and 2005. The survey asked about CFS, FM and MCS.
The survey was then made annual, running every year since 2007. With the change, the questions on CFS, FM and MCS were dropped. We pointed out their importance, and they were put back in the questionnaire in 2010, 2014, 2015 and 2016.
We asked about future plans and received the following information:
For 2019-2020, the CCHS will be asking respondents if they have fibromyalgia and chronic fatigue syndrome. The question on multiple chemical sensitivities will not be asked. This decision was made in consultation with Health Canada and the Public Health Agency of Canada.
The 2021 cycle of CCHS will be the first in the new redesigned survey collected electronically. According to the content plan for 2021 all three questions will be included, along with new questions to determine the date of onset and date of diagnosis for each of these conditions.
We really encourage you to participate in the survey if you are contacted.
We know that many people don't like the term CFS which is used in the survey. We have raised this issues with Statistics Canada. They found that the term ME was not widely known so they continue to use CFS. However, interviewers are instructed to accept the answer ME, so if they ask about CFS, you can reply that you have ME.
We are pleased that CFS and FM will be included in upcoming surveys, but very disappointed that MCS won't be included in 2019 or 2020. We note that the three provincial clinics (BC, ON and NS) all deal with ME, FM and MCS. It is highly likely that all three conditions will be served together moving forward. It will be more difficult to plan services without information on the prevalence and characteristics of all three conditions.
Hopefully the 2021 plans will not change because it would be extremely interesting to learn about dates of onset and dates of diagnosis for these conditions.
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University, Montreal, Canada
“The Douglas-Bell Canada Brain Bank (DBCBB), based at the Douglas Mental Health University Institute (McGill University affiliate), has become one of the most important brain banks in the world. Founded in 1980, it currently houses and manages over 3,000 brains, as well as a large relational database containing demographic, clinical and developmental histories from the donors. The DBCBB is one of the rare brain banks in North America to collect brains from people who suffered from different neurodegenerative diseases such as Parkinson’s disease, Alzheimer’s disease, and other dementias, as well as diverse mental disorders, including schizophrenia, major depression, bipolar disorder, substance use disorders, obtained from individuals who did or did not die by suicide (special collaboration with the Coroner's office).” http://douglasbrainbank.ca/
Canadian Institutes of Health Research
http://www.cihr-irsc.gc.ca/e/27028.html ​
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NATIONAL ME/FM ACTION NETWORK’S Canadian ME/FM Task Force - UPDATE
Dear Friends
On Wednesday June 27, 2018 a committee of the Canadian Senate released a report on the Disability Tax Credit and the Registered Disability Savings Plan. The report emphasized that Canada should be doing more to help disabled Canadians.
Subject: Breaking Down Barriers
In addition, the National ME/FM Action Network is a member of the Disability Tax Fairness Alliance, a non-governmental organization bringing together disability organizations interested in taxation issues.
We hope that this report leads to much-needed changes. If you are in touch with federal officials, do let them know that this topic is important.
Sincerely,
NATIONAL ME/FM ACTION NETWORK
Margaret Parlor, President
http://www.mefmaction.com/index.php…
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NATIONAL ME/FM ACTION NETWORK – NEWS
The May 3rd, 2018 Network’s Montreal’s Pre-Conference Videos now available
Video 1 President, Margaret Parlor, National ME/FM Action Network
https://www.youtube.com/watch?v=YzVnjN3QLVU&feature=youtu.be
Video 2, https://www.youtube.com/watch?v=b8v7CR4YhmQ&feature=youtu.be
Video 3 https://www.youtube.com/watch?v=8HS3yXwvUyA&feature=youtu.be
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What’s Up @ CIHR?
Canadian Institutes of Health Research NEWS RELEASE June 20, 2018
The Minister of Health appointed Dr. Michael J. Strong as the new President of CIHR, commencing October 1, 2018. Dr. Strong is an internationally recognized researcher specializing in ALS (amyotrophic lateral sclerosis) known as Lou Gehrig’s disease.
Dr. Strong has served since 2010 as the Dean of the Schulich School of Medicine & Denttistry and Distinguished University Professor at Western University.
From 2000 to 2010, he served as Chief of Neurology and Co-Chair in the Department of Clinical Neurological Sciences at the London Health Sciences Centre and Western University. Dr. Strong’s research focuses on understanding the cellular biology of ALS.
CIHR’s Budge 2018 proposed the largest increase in new funding for fundamental research and the Budget set aside dedicated funding to support researchers working across disciplines and with international collaborators.
To view the entire announcement, please go to:
Biography of Dr. Michael J. Strong
Please go to: https://www.canada.ca/en/institutes-health-research/news/2018/06/biography-of-dr-michael-j-strong.html
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National ME/FM Action Network’s Canadian ME/FM Task Force – UPDATE
Tuesday, June 5, 2018 – 11 a.m.
Margaret (Parlor) and I met with the Senior Assistant Deputy Minister of the Accessibility Task Team and with the Executive Director of the Office for people handicapeess.
On February 22, 2016 Margaret and I had a meeting with the Director-General of the Office of Disability Issues and Director of Parliamentary Affairs, at which time we presented the ME/FM issues that our community is faced with.
In the meeting on Tuesday, we pointed out that nothing had improved since that time and we therefore reiterated the difficulties the ME/FM community faces.
https://www.facebook.com/MEFMActionNetwork/posts/1943100362376564?hc_location=ufi
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SURVEY REQUEST from IACFS/ME
N.B. I replied to Dr. Friedberg (see below) and as per his request, to do the survey, please see URL below.
A reply was sent to Dr. Friedberg from the National ME/FM Action Network requesting that the acronym CFS be dropped and the proper name Myalgic Encephalomyelitis (ME) be used. The International Consensus Criteria, updating the Network's ME clinical definition, states the following:
The label ‘chronic fatigue syndrome’ (CFS) has persisted for many years because of the lack of knowledge of the aetiological agents and the disease process. In view of more recent research and clinical experience that strongly point to widespread inflammation and multisystemic neuropathology, it is more appropriate and correct to use the term ‘myalgic encephalomyelitis’ (ME) because it indicates an underlying pathophysiology. "
detailed report was prepared for the National ME/FM Action Network by Wendy Boutillier as part of the Network's Canadian ME/FM Task Force which outlines scientific developments made and the ICC-ME 2011 International Definition's research.
To receive a free copy of Wendy's report, please email me at lydia@mefmaction.com
To view the 2011 International ME Consensus Criteria, please go to:
https://onlinelibrary.wiley.com/.../j.1365-2796.2011.02428.x
Lydia
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International Association for IACFS/ME/ME and Chronic Fatigue Syndrome
Dear Members,
Our board would like to get a sense of what your preferences are regarding an IACFS/ME conference that may be scheduled around the same time as the NIH ME/CFS conference in April, 2019.
We request that you participate in this very brief survey (5 min) that will help to inform how we plan for our next meeting. A rapid response would be appreciated.
The survey can be accessed here: https://bit.ly/2rBKWfE
Best regards,
Fred Friedberg, PhD
President, IACFS/ME
www.iacfsme.org
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Message to Dr. Friedberg
I think that the time is coming that we need to become firmer about the real name of the illness i.e. Myalgic Encephalomyelitis (ME) and stop using the word chronic fatigue syndrome (CFS).
The CFS acronym has become a catch-all phrase for all undiagnosed illnesses which makes any statistical data almost meaningless.
I would love to see IACFS take on that role and become the champion for making it happen. I know you would get a big following. There may be some who will fit only the CFS label but if that is the case, they don't have ME. If they are very ill with a CFS label, it would make sense for them to be re-diagnosed and solve that dilemma.
Lydia
[Lydia Neilson, CEO, Founder
National ME/FM Action Network]
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Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS)
To help understand the distinction between ME and CFS, please see Dr. Hyde's statement on this subject. Dr. Hyde has been a champion of ME and explains the history behind ME and CFS and the significant differences of same.
“The US Centers for Disease Control and Prevention (CDC) first defined CFS in 1988. This definition was later rolled over to a more complex 1994 definition, which was subsequently corrected and corrected again. These CFS definitions have multiplied beyond the two CDC definitions and now include the Oxford Dictionary definitions of CFS (there are two of them), the Australian definitions, and the more recent Canadian definition that talks of M.E. / CFS as though they were the same illness. They are not.
M. E. has a clearly defined disease process while CFS by definition has always been a syndrome. In light of this state of affairs, the Nightingale Research Foundation has updated its Definition of M.E. (effective January 2007). There have been many attempts to define CFS, some described in our textbook, The Clinical and Scientific Basis of Myalgic Encephalomyelitis / Chronic Fatigue Syndrome. The Canadian Encyclopedia online also has a useful one.”
Byron Hyde, MD The Nightingale Research Foundation
https://www.nightingale.ca/understanding-m-e
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May 2018 Dr Hyde
Byron Hyde’s new book has a rather revealing chapter on insurance companies in which he reveals the use of retainers to corner all specialists within a specific Canadian city thereby ensuring they are all beholden to the insurer - and no patient can obtain a fair hearing.
He additionally reveals the use of other incentives that escape scrutiny, yet reward the doctor for saving the insurer money.
Corrupt to the core!!!
https://www.facebook.com/MECFSLegalResources/posts/823521134514688
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Please be advised that not all Canadians agree with linking up to the American Organization called SOLVE. This is a position being taken by a particular group. There is no protocol dictating that we must join forces.The Americans added Myalgic Encephalomyelitis to their ICD 10 CM on October 2, 2015. Doctors are cautioned to rule out ME before placing the patient under the SEID Umbrella. Global Advocates 4 Myalgic Encephaloomyelitis, cautions patients who align themselves with organizations to be careful they do not become part of the problem by using incorrect criteria and terminology As it stands right now CFS erroneously called ME/CFS are filed under SEID. Those Americans who have an ME Diagnosis should remind their doctors that ME is filed under Neurological Diseases in the American ICD CM and tabbed with a country wide billing code of G93.3
Canadian Health Care is funded by Provincial Taxes and the Provinces are responsible for ensuring quality.
ME FM Society of BC reports the following:
On the last day, at the Montreal Conference: Advancing an international ME/CFS Research Agenda. The goal today is to come out with a plan to go forward.
The conversation opened with a great presentation by Margaret Parlor on the Report from the ME/CFS patient community about creating a tranformative agenda for ME/CFS, in which she identified a research agenda based on the unmet needs of patients and researchers, which could easily fuel 10 Canadian research projects at $1 million each.
Following was Becky McNeil, PhD, who spoke about the Common Data Challenge establishing ME/CFS Research Consortia Collaboration. Her agency is working with the NIH to create the support for data sharing between the new ME centres of excellencevrecently funded by the NIH. This data sharing is critical to speed up research and make it more efficient.
Dr Moreau is great!. This next panel he made self-selecting, inviting 12 people from the meeting to volunteer to come up on to the stage - patients, practitioners, researchers and advocates. And they came and are brainstorming.
A highlight: Dr Byron Hyde asked Linda Tannenbaum of the Open Medicine Foundation to give $100,000 of the recent $3 million bitcoin donation they received, to go towards another conference to focus on organising structure to move forward. Linda agreed!
Panel participants: Dr. Byron Hyde, Andrea Popescu (advocate, AQEM), Daniel Normandin (Montreal litigator), Kathleen Kerr and John Malott (Environmental Health Clinic in Toronto), Dr. Amir Landi (researcher, Montreal), Olli Polo, PhD (researcher, Norway), Dr. Ric Arseneau (CCDP), Alison Rae (advocate, Action CIND), Margaret Parlor (advocate, National ME/FM Action Network), Linda Tannenbaum (Open Medicine Foundation), Carol Head (Solve MECFS Initiative)
All ideas generated at this meeting (and there were many great ones!) will be shared by Dr. Moreau.
Hyde, Dr Byron National ME/FM Action Network Action CIND AQEM Linda Tannenbaum Carol Head C Race to Solve ME/CFS
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Many thanks to Margaret Parlor and the National ME/FM Action Network for an excellent Patient Pre-Conference in Montreal, in the afternoon on day #1 of the Montreal ME/CFS Canadian Collaborative Team Conference.
Margaret Soden moderated the meeting, which was attended by patients and patient groups from around Canada. This is the first time Canadian patients have come together to meet to discuss how to address our communities' unmet needs.
Also at the meeting were staff from the BC Women's Hospital's Complex Chronic Diseases Program.
The Society's Larry Dawe introduced Dr. Ray Copes, Chair, Task Force on Environmental Health, and Chief, Environmental and Occupational Health. Dr. Copes presented on the Task Force - Interim Report Update.
The Ontario report was commissioned by the Ontario Minister of Health, but is a valuable tool for all Canadian jurisdictions, as it reflects the issues that ME and FM patients face with health care systems throughout the country. Stigma, severe shortage of knowledgeable doctors, absence from medical school curricula, a lack of accepted medical guidelines, and lack of research were identified by the report as problems that need to be addressed.
The Network collected responses to the Task Force Interim Report from patients and patient groups, and submitted them to Dr. Copes at the meeting.
Margaret Parlor followed with a presentation on Diagnosis & Treatment Protocols, going through the history of the different protocols which have emerged. A discussion ensued about the challenges posed by having so many ME protocols. Margaret identified the Institute of Medicine's criteria as good for screening patients, with the Canadian Consensus Criteria (CCC) better for properly diagnosing. The meeting agreed that something easy-to-use was required for family doctors, who are usually the first port of call for patients. The IACFS/ME's ME/CFS Primer for Clinical Practitioners (2014 revision) was also recommended at the meeting, as an updated version of the CCC.
Diagnostic criteria for FM have their own issues. Margaret outlined the history of FM protocols, which began by including trigger points for diagnosis. In 2003 other symptoms were added. But the 2010 criteria dropped trigger points altogether, as have all subsequent criteria. Unlike ME, FM was taken on by a specialty - rheumatologists - but this is changing. Dr. Arseneau told the meeting that he had recently presented to a group of rheumatologists, and many had said they did not believe FM was a rheumatological condition.
Margaret raised the concern that patients diagnosed with FM were not being screened for ME, despite the fact that many patients have both conditions. The result is that many patients are not identified as having post exertional malaise (PEM), and are prescribed exercise for their FM, which is harmful for their ME.
The meeting then broke into four groups to brainstorm Care Pathways in an ideal world. The most common themes included campaigns to address stigma, doctor education, care for severely ill patients, agreement on diagnostic and treatment guidelines for the whole country. There was a discussion as to whether a center for excellence model was better than a model run by specialists in the community. There seemed to be agreement that a synthesis of both models is needed.
Dr. Copes, who was meant to fly home after his presentation, stayed for the whole meeting. He and his team certainly have an abundance of patient feedback to include in their final report.
And the rest of us have a lot of ideas and tools to use for advocacy with our own provincial governments. Here in BC the Society is working on a paper on Unmet Needs to take to the Minister of Health and other provincial decision makers, and it looks like we've found some strong partners at this meeting for our campaign. We'll keep you posted.
AGENDA FOR THE PATIENT PRE-CONFERENCE: https://fourwaves-sots.s3.amazonaws.com/…/workshop-agenda-m…
PROGRAM FOR THE MONTREAL CONFERENCE: https://fourwaves-sots.s3.amazonaws.com/…/me_cfs_final-prog…
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Many in Ontario live with conditions triggered by environmental factors that are difficult to diagnose and treat.
These conditions may include:
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Environmental Sensitivities/Multiple Chemical Sensitivity;
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Myalgic Encephalomyelitis/Chronic Fatigue Syndrome; and
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Fibromyalgia.
People diagnosed with these types of conditions face challenges in their experiences as patients, from diagnosis to treatment to living with the long-term impacts. People also suffer from stigmatization in clinical settings, the workplace and other areas of their lives as a result of a general lack of understanding of these complex conditions.
The Ministry of Health and Long-Term Care (MOHLTC) established a Task Force on Environmental Health to provide recommendations and advice to:
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inform possible guidelines and policies to support patients with conditions triggered by environmental factors;
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increase public and health care providers' knowledge of health conditions triggered by environmental factors;
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identify gaps in evidence, knowledge transfer and care for those affected by these conditions; and
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identify patient-focused actions to improve health outcomes of affected patients.
The Task Force consists of members appointed by the Minister of Health and Long-Term Care, of which 1/3 are patients or caregivers. The Task Force has a term of up to three years beginning in 2016 and ending in 2019. The Task Force members are:
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Ray Copes (Chair), Chief, Environmental and Occupational Health, Public Health Ontario
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Neil Stuart (Vice-Chair), Health Care Consultant
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Christine Oliver, Physician and President, Occupational Health Initiatives
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Cornelia Baines, Professor Emerita, Dalla Lana Faculty of Public Health, University of Toronto
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Denise Magi, President, Myalgic Encephalomyelitis Association of Ontario
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Howard Hu, Professor of Environmental Health, Epidemiology, Global Health and Medicine, Dalla Lana School of Public Health, University of Toronto
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Izzat Jiwani, Canadian and international health/social policy researcher, person with lived experience
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Joanne Plaxton, Director, Health Equity Branch, Ontario Ministry of Health and Long-Term Care
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John Molot, Staff Physician and Medical/Legal Liaison, Environmental Health Clinic, Women's College Hospital
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Julie Schroeder, Standards Development Branch, Ontario Ministry of the Environment and Climate Change
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Maureen MacQuarrie, former lawyer, policy adviser, volunteer, person with lived experience
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Mike Ford, civics and environmental studies educator, consultant, caregiver, person with lived experience
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Nancy Sikich, Director, Health Technology Assessment, Health Quality Ontario
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Sharron Ellis, person with lived experience
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I submitted a document Ontario Task Force ME April 2018 WB.pdf
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http://www.health.gov.on.ca/en/public/programs/environmentalhealth/#
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Pre-Conference Workshop on Meeting Unmet Needs
Participation in the workshop is open to anyone interested in discussing how services could be delivered to people with ME/CFS and related illnesses in the years to come.