• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To register, simply click the Register button at the top right.

Dr Lenny Jason's lecture "ME/CFS, Myths versus Reality"

mango

Senior Member
Messages
905
"Leonard A. Jason's lecture regarding his work in the ME and CFS arenas, presented to an undergraduate class at DePaul University."

Dr Jason's lecture in Olya's class on ME and CFS (April 15th, 2015)

1h 28 min.

(Published on YouTube 22 April, 2016.)
 

Richard7

Senior Member
Messages
772
Location
Australia
The lecture is aimed at students who may want to move into the same sort of research and advocacy he has done as community psychologists. He is essentially using his work with ME/CFS as an example.

It provides something of a history and overview of the condition and the CDC/medical community's reaction to it.

There are some problems with background noise, I found the first 20 minutes or so pretty boring.

I think the problem is that he took a while to catch the attention of the students and was repeating himself/recapping too often. It's the presentation not the information, and once they become interested he becomes more interesting.

At 25 minutes he talks about a data mining experiment on a database of questionnaires of 1000 people with ME/CFS, to empirically determine core symptoms and subtypes.

31 minutes DIS and SCID an example of how using the wrong test leads to the wrong conclusion, and an example of how evidence can fail, for a time at least, to change practice.

44 minutes talks about research showing the way that the choice between the names CFS and ME had a big impact on perceptions of symptoms.

52 minutes Vercoulen et al and false illness belief.

1:10 2nd order change. not just providing emotional support but changing the situation.

The questions from 1:17 are interesting too.

It is interesting but more from an advocacy, history of the research point of view than a how do I get well/deal with this illness point of view.
 

ScottTriGuy

Stop the harm. Start the research and treatment.
Messages
1,402
Location
Toronto, Canada
questions from 1:17 are interesting too.

Indeed. I was not aware of the corruption within CFIDS in the 90s.

He was being diplomatic to say Kim McCleary (sp?) was well intentioned with her efforts to promote the term 'chronic fatigue syndrome' in spite of the millions she received from the CDC.
 

Kati

Patient in training
Messages
5,497
@Kati Lots to take in but that comment def stood out. Any thoughts on this?
I am not planning on watching this as it will set me back plenty.

Personally I can appreciate how PEM contributed to my slow and progressive decline over the years. It is so crucial to listen to our bodies and respect its limitations, to very seldom overexert and to be very careful when physicians mention. 'Rehab' or 'graded exercise'.
 
Messages
93
My positive take from this was the impact of a survey with as few as one thousand people taking it. It challenged my perception that impact would not be achieved unless there were thousands of participants. Guess we need to keep going with more surveys and data collecting from our group. Maybe Dr Jason would help design the input criteria??
Also, I keep wondering how the numbers of folks with this disease are counted. I wonder if I am counted for instance. How does one raise their hand and say me, me, me too.
Perhaps somehow if well enough we could help with this.
Numbers really have an impact. When describing what I am sick with I rarely leave out the huge number of people who have this, really an epidemic.
And that brings up more questions of contagion. Is this devasting disease contagious?
Do the Feds accept the reality at all of a contagious epidemic growing at a very fast rate??
I took a nibble of my "wake up" medication to do some stuff today that has been put off too long, and here I am on PR watching a video...oh well, now back to rest mode.
Thanks for loading the video for us to see!