BC Womens Hospital, Canada: Primary Care Toolkit, Office tools for management of ME/CFS & FM patients 2019

[Sly Saint]

Have been going thro this.
http://www.bcwomens.ca/health-professionals/professional-resources/complex-chronic-diseases

Clinical Protocol

Graded Exercise Therapy (GET) had previously been recommended as a treatment for ME/CFS; it promoted the idea that patients were simply deconditioned or had false beliefs about their symptoms and that GET would make them better.
o This is no longer recommended to people with ME/CFS, rather, those with ME/CFS are encouraged to pace themselves and keep activities within their tolerance limits
o Formal exercise can be considered if the energy envelope permits and does not cause post-exertional malaise

The discredited PACE trial has caused much confusion. It used Cognitive Behaviour Therapy (CBT) as a treatment for ME/CFS; it assumed that ME/CFS was a psychological illness
o While CBT and other psychotherapies are not treatments for ME/CFS, they can help patients develop coping strategies to deal with the emotional consequences of living with a long-term illness, and help with the safe planning of activity and pacing. Along with mindfulness techniques, it is useful in helping patients deal with stress reduction. It can also help when acceptance and identity – among other issues – are barriers to implementing self-management strategies.

http://www.bcwomens.ca/Specialized-... Diseases (CCDP)/Clinical Protocol-ME-CFS.pdf

 

[NelliePledge]

That’s more like it. We should maybe send an email with a link to this to all the NHS services that we’ve discovered have online information. In the new year.

 

[rvallee]

It's a step in the right direction but amounts to very little and has some conflicting or otherwise useless parts. Good that it acknowledges the failure of the model up-to-date, but we need 1,000x this at least just to get going.

There is some advice about yoga and tai chi, with some lifestyle bits that really do not adequately integrate the lived reality of being disabled but denied all help and support, and it has some bits about central sensitivity as if it were a valid thing. Could be worse, should be better. This is undergraduate level, as far as I am concerned, the proverbial doodle on a napkin.

 

[Joeblow604]

As far as I can tell from the people I've heard from in the CCDP or those recently discharged CSS is still promoted and ME is part of it despite Yunus's 2015 paper stating there is no evidence to include it. When I went through 3-4 years ago I was given Yunus's 2007 paper as part of my education. From what I understand now its a 3 year wait to get in. So its very backed up with a focus on classes and group therapy with little testing and medical attention. They do well in helping people get disability and validation. You can speak with a dietitian, physiotherapist and ND. You are discharged after a year and have no access to their services after that and back to the mercy of your GP.

Just an opinion, but seems the mildly affected will get some benefit from the program but they have very little to nothing to offer the severe. Some will say the program helped some others will still say it was crap.

That said, after seeing Dr Nacul's presentation and recent interview I am hopeful the program will get better eventually. I know many advocates and MEFM BC Society are working very hard to make change and give them much credit for their hard work.