ME/CFS Collaborative Pre-Conference May 3rd - Update


Dear Friends 

We are very excited about the upcoming ME/CFS Collaborative Conference in Montreal May 3-5. The list of participants is impressive and I know that this is going to be an amazing experience.

This memo refers specifically to the pre-conference workshop on Addressing Unmet Needs that the National ME/FM Action Network is planning. This workshop takes place

  1. On Thursday, May 3rd from 1:15 pm to 5:00 pm

  2. At Sainte-Justine Research Center, Mother and Child University Hospital Center

  3. 3175 Chemin de la Côte-Sainte-Catherine, Montreal

  4. In Salle Albert-Royer

There are a lot of topics we want to cover and not much time to cover them. In order to “hit the ground running” I am asking you to do some pre-conference homework and submit some material in advance.

But first let me introduce you to two important participants:

Margaret Soden is the owner of Soden Leadership Group, a boutique Toronto consulting firm. Over 30 years, Margaret has worked with private companies, eleven Ministries of the Ontario government, and other levels of government. Margaret has facilitated many workshops in the past and has generously volunteered to facilitate our discussions.

Dr Ray Copes is a senior manager with Public Health Ontario. He is also the Chair of the Ontario Task Force on Environmental Health which was set up to advise Ontario's Health Minister on how to move forward with services for ME/CFS, FM and MCS. He will be the key guest speaker for our workshop.

As an advisor to a provincial cabinet minister, Dr Copes is limited in what he can say publicly. He will provide some description of the work of the task force including reviewing their interim report, and then open up the floor to discussion.

You can find the Ontario Task Force year-1 report here: (English) (French)

Workshop Request Number 1

Please take a look at the Ontario Task Force's year-1 report.

  • Do you agree or disagree with what is written, and why?

  • Did the authors miss anything important?

  • Do you have questions for Dr Copes?  

Dr. Copes would also like to receive information that could inform the next phase of the task force's work (see page 31 in English, page 39 in French). In particular, he would like to learn about experiences in other jurisdictions that could help the task force.

  • Do you have suggestions for the next phase?

  • Are there experiences in other jurisdictions that could help the Onario Task Force more forward?

We would appreciate receiving comments and questions as well as summaries of initiatives in other jurisdictions on or before Tuesday April 24th.   This is to give our facilitator time to review them and to help Dr Copes prepare. This will make the discussions flow more smoothly. Please send this information to   This e-mail address is being protected from spambots. You need JavaScript enabled to view it . Please include your name and contact information so that Margaret can reach out to you if she needs to clarify anything that you send her in advance of the session.

Workshop Request Number 2

Another discussion in the workshop will be around care pathways, and so, to this end, we have put together some Slides in PDF. One shows a care pathway for inflammatory arthritis. Another summarizes the care pathway in the BC program. A fundamental issue that needs to be answered is: who provides services, and in particular, should it be the family doctors, specialists, or centers of excellence? We have created several slides to help you think on that.

Please review these slides before the session and come to the workshop prepared to provide your input to the questions posed on the last slide. If you are unable to attend, you can send comments to   This e-mail address is being protected from spambots. You need JavaScript enabled to view it .

Thank you for taking the time to do this work in advance. Your efforts now (before April 24th) will ensure that we have a fabulous workshop afternoon on May 3rd!

Margaret Parlor

Cc Margaret Soden