June 18 Webinar with Dr. Lily Chu on Post-Exertional Malaise

[Tom Kindlon]

On June 18 at 1 p.m. EST, Lily Chu, MD, MS, will present her webinar: “Post-Exertional Malaise: History, Characteristics and Research Findings.” To register for the webinar, go here https://attendee.gotowebinar.com/register/8782966319829183233.

Dr. Lily Chu is the co-vice president of the International Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis and one of the top ME/CFS experts in the world. In the webinar, she’ll provide background on the origination and evolution of PEM and offer pointers on how patients can talk to their physicians about it for better understanding.

Mark your calendar for our other upcoming webinars:

July 16, 1 p.m. EST
Peter Rowe, M.D., Director, Chronic Fatigue Clinic, Johns Hopkins Children’s Center

October 15, 1 p.m. EST
Alan Light, PhD, Research Professor of Anesthesiology, University of Utah

December 17, 1 p.m. EST
Solve ME/CFS Initiative Year-End Research Review

Stay connected to our Facebook page and blog for registration notification and the link.
Facebook.com/CFIDSAssn
SolveCFS.org/blog
SolveCFS.org/webinar

I worked closely with Dr Chu on my paper "Reporting of Harms Associated with Graded Exercise Therapy and Cognitive Behavioural Therapy in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome"
which can be read for free at:
http://iacfsme.org/ME-CFS-Primer-Ed...of-Harms-Associated-with-Graded-Exercise.aspx

 

[Hutan]

Thanks @Tom Kindlon
Your paper makes many interesting points.

Re the lack of long term followup on GET/CBT trials, I'd love to know how the participants of the PACE trial (categorised by compliance/non-compliance with the Canadian criteria) are doing now.

 

[Never Give Up]

Just watched the recording of this webinar here:

https://www.youtube.com/user/SolveCFS

It was interesting, rounded out my knowledge of PEM a bit more, and illuminated some of weaker points in the research in this area.

I've suspected that PEM can involve sleep disturbance, now I see that it has been documented polysomnographically.

Now to go read the studies for myself.

 

[Tom Kindlon]

Thanks @Tom Kindlon
Your paper makes many interesting points.

Re the lack of long term followup on GET/CBT trials, I'd love to know how the participants of the PACE trial (categorised by compliance/non-compliance with the Canadian criteria) are doing now.

Long-term data has been promised (not on the Canadian criteria specifically). A problem is the protocols talk very little about what they intend to publish so the investigators can mine the data to give the impression they want to give much more than if there were pre-defined outcomes.

 

[Tom Kindlon]

Here's a direct link:

Just 42 minutes. I found it useful the way she made tables of the variations in the definitions as it is hard to remember the differences I find. I also found it useful to be reminded of abnormal responses to exercise that have been found in research.