Montreal 2018 ME/CFS Canadian Collaborative Team Conference

I have just returned from Montreal where I attended the first ever National Conference on ME/CFS . I always leave  ME/CFS meetings feeling less alone.  I met physicians new to the field who attended the meeting to learn more and researchers new to the field who aren’t put off by the stigma and lack of research funding.  I talked to several patient advocates:  Diane Ching from the ME Society of Edmonton, Elizabeth Sanchez and Sherri Todd from BC, Margaret Parlor, Lydia Neilson & co. from the National ME/FM Action Network,  Cort Johnson from Health Rising, Scott Simpson from Missing Millions Canada, Alison Rae of Action CIND and more.  I’m sure many of these will write more detailed accounts of the meeting.

On Thursday May 3rd experienced clinicians presented a course for health care professionals.  I have posted the powerpoint presentation from my talk on the interface between ME/CFS and psychiatry on my “Publications” page.  Go to the Publication tab and scroll about half way down to “Invited Addresses”.  It is second from the top.  In it I discuss the prevalence of psychiatric disorders in ME/CFS , how to differentiate ME/CFS from psychiatric disorders, how to manage emotional symptoms in ME/CFS and lastly the issues of suicide and Medical Assistance in Dying in people with ME/CFS.

While this educational event occurred in one auditorium, the ME/FM Action Network hosted a patient forum to gain consensus on unmet needs of those suffering with ME/CFS.  Dr. Ray Copes the chair of the Ontario Task Force was in attendance.  The Task Force has been formed to advise the Government of Ontario on the creation of a center of excellence to treat patients with ME/CFS, FM and MCS, to serve as a research hub and a source of education of practitioners in the province.  Task force staff were making copious notes and hopefully the views of the patient advocates will be be reflected in the plan.

On Friday May 4th, researchers from all over the world (Canada, US, Germany, UK, Australia & Sweden) shared their  findings.  Key attendees included Ron Davis from Stanford, Cindy Bateman from the Horne Bateman Center, Nancy Klimas and Alison Bested from Nova South Eastern University.  The BC Chronic Complex Disease Clinic was well represented.  Linda Tannenbaum from the Open Medicine Foundation and Vikky Holets Whittemore from NIH both spoke.  I overheard many attendees discussing the high quality of the research, the collaborative spirit and their hopefulness for the field.  There is a sense we may nearing the tipping point of societal acceptance and research quality allowing real gains to occur.

Concurrently, a patient education day was taking place in another room.  I presented a short talk on Neuroplasticity and whether it may have therapeutic potential in ME/CFS.  This power point has been posted on my “Publications” page.  Go to the Publication tab and scroll down to “Invited Addresses”.  It is at the top.  For those who are interested,  I hope to present a more detailed public talk on Neuroplasticity later this summer to share what I have been learning over the past 4 years of study and practice.

Judy-Anne Wilson, Alison Rae and I presented on the Alberta Healthy Living Program ME/CFS Information Session.  Apart from the video not working, it went well.  We hope to be able to expand the course and will be meeting over the next months to determine the most efficient and effective way to do this.  All ideas and partners are welcome. Our matching T-shirts (designed by Judy-Anne for the Session facilitators) made a statement.

The patient day webcast was recorded with the intention to make it available on line.  I was told this may take several months.

On Saturday May 5th, researchers, clinicians and patient advocates met to brainstorm  forming international research collaborations to improve health services to better meet the needs of patients with ME/CFS.  Host, Dr. Alain Moreau facilitated a collaborative spirit.  The brainstorming will continue as Dr. Moreau leads a grant application process to the CIHR (Canadian Institutes for Health Research) for a ME/CFS team grant.  It is encouraging that the CIHR has designated funds for ME/CFS and that they sent representatives to the meeting.  I talked to the CIHR director who indicated that he was convinced (early on the first day) that ME/CFS was real and deserved more support.  The CIHR now has an agreement with the NIH in the US to collaborate on ME/CFS research.  This is good news as it increases our capacity.  There may also be opportunities to collaborate with a European Consortium representing 20 EU countries called EuroMEne.

All in all, a very enjoyable and encouraging 3 days.


Reversing Cognitive Decline: The work of Dr. Dale Bredesen

  The last event sold out!      Click Here to Register

Cognitive impairment and dementia are a public health emergency.  Until now research has failed to find any solution.  Dr. Dale Bredesen, a well published Alzheimer’s researcher, has recently published two scientific articles and a book outlining how his RECODE protocol has helped patients recover from Cognitive Decline and/or Alzheimer’s Dementia.  After attending a training with Dr. Bredesen, I feel that everyone over the age of 45 should be aware of this information.

To read more about Dr. Bredesen go to https://www.drbredesen.com/

Click here to download an information poster for the event

Join us on Saturday June 9th

2 – 4 pm

Christ Church, 3802 8th St. SW

Admission $20 ($10.00 for low income)

If you prefer not to use our new online registration, please send a cheque along with your name, contact information and number of tickets you are purchasing to:

Dr. Stein’s office:  4523 16A St. SW Calgary AB, T2T4L8

For any other questions please call the office at 403 287-9941.


Dr. Stein’s Partial Leave of Absence

I have decided to take a partial sabbatical from Monday Sept 4th until the end of 2017 (with the possibility of an extension if needed).  I am taking this time to attend to my own health and life – to walk the walk of pacing and self care.

During this time,

  • I will continue with all the groups currently underway and may start new PEG, Curing Persistent Pain and Sleep groups as current groups finish.
  • I will continue to study and read the literature. I may publish news letters if important events occur.

During this time,

  • You will need to rely on your family physician and other providers for medication renewals and ongoing needs.
  • I will not schedule any individual appointments or assessments.
  • I will not refill prescriptions, fill out disability forms, order tests or make referrals.
  • I will not take new referrals except for the groups mentioned above.
  • I will not respond to emails or phone calls from patients except those relating to the groups or regarding follow up on investigations or consultations requested by me prior to Sept 4th.

Support while I am on leave

  • If your family physician requests support, I will book a phone call with them to discuss your care or disability needs.
  • The office will be open approximately one day per week to respond to administrative requests such as forwarding information to other providers.
  • Requests from third parties such as insurance companies will be forwarded to the physician of your choice and the company will be advised that I am unavailable.
  • Legal requests will be responded to.

 Preparation

  • If you want me to contact your family physician or write them a letter updating them about your health prior to Sept 4th please discuss with me in person prior to my leave.
  • I will ensure that everyone currently on the appointment wait list and those who need an appointment to plan for the leave are seen in person prior to Sept 4th.
  • If you are using triplicate prescriptions please talk to your family physician requesting coverage while I am away since I cannot give you a 4 month prescription.
  • If you do not have or lose your family physician please go to the AHS web page on how to find a doctor: http://www.albertahealthservices.ca/info/Page13253.aspx

Thank you to those of you who have already supported my decision.

Ellie Stein


Alberta Healthy Living Program pilots a course on ME/CFS

The Alberta Healthy Living Program offers free, province wide, patient education on a wide variety of topics of interests to readers of this newsletter including chronic pain, pacing, sleep, diet, Irritable Bowel Syndrome and mood.

A group of hard working expert patients has developed a creative, engaging 2 hour session which will run in Calgary in the fall 2017/winter 2018.

We need patients to join us online on Monday May 22nd to provide feedback as we do a run-through of the course.
To join us on May 22nd, contact Dr. Stein by email or phone.

We need Calgary based facilitators (teachers) for this course.
If you have teaching and/or presentation skills and are interested please contact Dr. Stein for more information. You will receive training and practice and will always have a teaching partner.

Thank You to the new Canadian non-profit Action CIND who provided web access for our meetings and developed some short video clips for the course https://www.facebook.com/ActionCIND/

Thank You to the ME Society of Edmonton who is supporting this program with honoraria for the expert patient facilitators.

Click here for the schedule of upcoming programs through the Alberta Healthy Living Program

We hope the course will be well received and will grow to other areas of the province.  Please mention the course to your health care professional.


Disability Support in Canada – Learn more on June 16th, 2017

FREE Educational Event/Webinar on CPP-D, Provincial disability and private insurance

 Sponsored by the National ME/FM Action Network mefmaction.com

  • Webcast by Mike Finch of Self Connection Books
  • Moderated by Dr. Ellie Stein, Calgary physician
  • All interested in learning about disability supports welcome (not illness specific)
Date: Friday June 16th 2017 at 1 – 4:30 pm Mountain Daylight Time
Location: Cardel Theatre – 180 Quarry Park Blvd S.E. Calgary, AB
To register for this free event go to: www.selfconnection.ca/stein

This event will be recorded and will be freely available on the website of the ME/FM Action Network after the event.

If you want to pose questions to the speakers you must attend either in person in Calgary or by web on June 16th.

Click here for a pdf notice.  Please forward  to anyone who may be interested to attend.

If you have a question for one of the speakers please forward them to me well before the date so that I can forward  to the speaker in question.   http://eleanorsteinmd.ca//downloads/2279/

Speakers: All of the speakers are volunteering their time to participate in this educational forum.
We are very thankful to them for the opportunity to learn more about applying for and appealing disability supports.

CPP-D: Kris Johnson (speaking by web from Ottawa)

Kris is the Director General of the CPP-Disability Directorate within Employment and Social Development Canada https://www.canada.ca/en/employment-social-development/programs/disability/benefits.html

AISH: Dale Beesely (speaking by web from Edmonton)

Dale is the Statutory Director for the AISH program and Acting Executive Director of Financial Supports within the newly created Alberta Ministry of Community and Social Services. https://www.alberta.ca/aish.aspx

Do I Have a Case? James Ludwar (in person)

James Ludwar is a benefits and disability lawyer in Calgary who serves Alberta and Saskatchewan. James founded Ludwar Law in 2012 and has represented many individuals with ME/CFS and FM. http://www.yourdisabilitylawyer.ca/lawyer

Employment and Disability: Hugh Scher (speaking by web from Toronto)

Hugh has extensive experience in employment, human rights and disability insurance matters.  He has been involved in some of the most important disability decisions for ME/CFS in Canada. His firm, Scher Law, has offices in Toronto and Ottawa.  http://www.lostjobs.ca/

Patient Advocate: John Wodak (by web from Edmonton)

Over the past 20+ years John has has provided advice and/or assistance to more than 700 individuals applying for CPP-D and/or AISH.  He is a co-author of a Guide to CPP-D applications and appeals, available for downloading on the National ME/FM Action Network’s website. www.mefmaction.com


We are now open for out of town referrals

After taking over 2 years to clear the backlog of referrals, we are making progress and are welcoming new referrals from out of town clients. Please see the October 2016 Newsletter for details.  The waitlist for Calgary and area referrals remains closed.  People who have attended the psychoeducational group are being offered assessments before we open to new referrals.

There is a lot to be excited about in terms of new research and treatment ideas.  After returning from the IACFS/ME conference in Fort Lauderdale, I will work to translate what I have learned at conferences over the past few months to present at various groups and maybe at an education meeting. 


Clinical Practice Guidelines for ME/CFS

This CPG was drafted by an expert committee of Towards Optimal Practice (TOP).  TOP is a collaboration of the College of Physicians and Surgeons of Alberta and the Alberta Medical Association.  Toward Optimized Practice (TOP) helps Alberta physicians and the teams with whom they work implement evidence-based practices to enhance the care of their patients http://www.topalbertadoctors.org/home/  

I served as the content expert on the committee.  We also had one scientist/researcher, one patient advocate, one psychologist and 3 family physicians on the committee.  All the committee members have extensive knowledge of and experience with individuals with ME/CFS.  We had access to a professional librarian to access all of the literature needed and a professional guidelines facilitator to draft the guidelines. It was a positive experience with everyone agreeing on the importance of the task and having an understanding of the unmet needs of individuals with ME/CFS.  I am very proud of the guidelines.

My hope is that these guidelines will be promoted and used across jurisdictions in Canada and abroad. All family physicians in Alberta were sent an email about these guidelines. Please discuss them with your doctor.

“Identification and symptom management of Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS)

TOP’s new Clinical Practice Guideline (CPG) responds to the need for greater awareness that Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS) is a complex, chronic, debilitating physical condition that can be identified and successfully managed in the primary care setting.

The CPG aims to equip clinicians with the necessary knowledge and tools to identify and provide symptom management while empowering the patient by acknowledging the legitimacy of the condition and respecting the patient’s lived experience.”

To view both the CPG and summary document click here.

To view all TOP CPGs and/or subscribe for updates click here.


Registration Open for May 11th International Awareness Day Webinar

2016 International Awareness Day for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, Fibromyalgia and Multiple Chemical Sensitivity
Webinar: Wednesday May 11th  6:30 – 8:30 pm Mountain Daylight Time
Dr. Michael Moskowitz MD MPH – Featured in “The Brain’s Way of Healing” by Dr. Norman Doidge
Neuroplastic Transformation: Using Neuroplasticity to Cure Persistent Pain

Event Flyer –  Please email or post  2016 IAD Webinar Notice

As it becomes persistent, pain changes from a symptom to a disease.  This change is caused by changes in the pain processing centers in the brain. The changes in the brain cause changes in the rest of the body leading to a vicious circle.  Since the disease of pain is a neuroplastic process in the brain and not due to tissue injury, it is reversible.  Attend this webinar and learn how.

Dr. Moskowitz is Board Certified in both Psychiatry and Pain Medicine. He served as a member of the Examination Council for the American Board of Pain Medicine from 2006-2010.  He has been an Assistant Clinical Professor for the Department of Anesthesiology and Pain Medicine at the University of California, Davis since 2006. Dr. Moskowitz and Dr. Marla Golden have been working together since 2008 to develop a practical therapy which utilizes our brain’s ability to change itself (neuroplasticity) to cure persistent pain. They have published a manual outlining their approach complemented by animations and additional information on their website: www.neuroplastix.com

In this webinar Dr. Moskowitz will explain how and why Neuroplastic Transformation works.
The objective is to return the body and brain to normal function (not to live with pain).

Location: In person at Self Connection Books in Calgary, Canada or online
Dr. Stein and Psychologist Michelle Deslile from the Calgary Chronic Pain Centre will be in house as discussants.

Cost: $20 ($10 for low income)

Registration: http://www.selfconnection.ca/moskowitz


Registration Open for March 19th Diet and Lifestyle Webinar

Registration is now open  –  Webinar: Diet and Activity for optimal health in ME/CFS and FM

Date: Saturday March 19th, 2016

Time: 1:30 – 3:30 pm MST (Mountain Standard Time) 

Speakers:

Rory Hornstein Registered Dietician: Use gut bugs to be healthy and lose weight.
Cory Fagan BPE(Hons), MSc: Use heart rate and exercise test results to plan daily activities.

Location: Join in person at Self Connection Books or On Line

Self Connection Books is at:#125, 4611 Bowness Road NW,  Calgary, Alberta
Phone: 403.284.1486  Toll Free: 866.735.3457

Cost: $15.00/ $7.50 low income (to register as low income please call the office for the coupon code)

For Full Details and to Register go to: http://selfconnection.ca/index.php?option=com_content&view=article&id=1081&Itemid=13

Rory Hornstein Registered Dietician: Using gut bugs to be healthy and lose weight.
Ever wondered how you could have managed to put on weight over the years despite dieting the entire time? Turns out our gut bugs may be creating oversized guts. This session will explain how microbes influence how we eat, what we eat, how we get energy from our food, protect our immune system, help us harvest calories and produce key vitamins and nutrients. Rory Hornstein will explore what we can do to cultivate and enrich the critters in our gut on the path to better health. 

Cory Fagan BPE(Hons), MSc: Recommendations for physical activity and recovery with ME/CFS and FM
Cory and I have been working together for a few years offering the Stephens Protocol 2 day exercise testing. Cory will share what he is finding and how the results in individuals with ME/CFS compare to healthy individuals that he works with at his training facility TCR Sport Lab in Calgary.

  • His topics include: “you are not faking, something is off”. Physiological data to support ME/CFS. 
  • Using heart rate and exercise test results to “train” optimally.
  • Using cryotherapy to improve recovery from activity.

New Manual Prices

Due to increased cost of production the cost for my manual “Let Your Light Shine Through: Strategies for Living with ME/CFS, FM and MCS” has increased slightly.  All prices are in Canadian dollars.  We have a new shipment of both the B&W and Color coil bound manuals.

Download – $20
CD – $22 + shipping
Black and White coil paper manual – $29 + shipping
Color coil paper manual with tabs – $38 + shipping