[YouTube]Leonard Jason's talk on Myths about ME and CFS

[AndyPR]

Leonard Jason's 2017 presentation to the Ethical Humanist Society of Chicago regarding myths regarding ME and CFS.

 

[AndyPR]

While the video quality on this is poor, I got quite a lot from this presentation. He talks about the issues with broad diagnostic criteria (very applicable to MEGA and all the BPS crowd), and in the Q&A at the end, goes into history of ME that I'd not known before and makes some pretty strong historical claims of corruption.

ETA: Also makes an interesting remark about how our brains are in a Delta Wave state while awake, which is an explanation for cognitive issues.

 

[Effi]

These are the slides of the talk on youtube (no sound):

 

[trishrhymes]

Just watched it. Very good. So refreshing to see a psychologist who knows it's a physical illness and strongly criticises the British BPS approach, including spelling out the problem with their distorted version of CBT.

 

[dancer]

Lenny Jason is a treasure. Over the years I've listened in to CFSAC when he's spoken up there, and followed his research (taking his unique angle to show the problems with definitions, questionaires, and conclusions as applied to ME/CFS). Such a dedicated, long-term gift to our community!

 

[alex3619]

Most of what he said is known to many long term patients. However much of that might be new to more recent patients. To be fair though, the reason we know a lot of that is prior work from Jason. He has been helping us, as a community and not just patients, for a very long time. There is nobody like him so far as ME is concerned.

A key thing that distinguishes him from others is his focus on social change. He sees ME as not just a medical problem, but a social problem. We have to change how society views us to make lasting and substantive improvement for the ME community.

 

[Hajnalka]

He suffers from ME himself since 1990. Here's an interesting interview with David Tuller from 2008: http://www.nytimes.com/ref/health/healthguide/esn-chronicfatigue-expert.html

 

[Barry53]

He suffers from ME himself since 1990. Here's an interesting interview with David Tuller from 2008: http://www.nytimes.com/ref/health/healthguide/esn-chronicfatigue-expert.html

This excerpt is especially good I think:-

Q: There are many people who think C.F.S. is just a form of depression. What’s the connection between the two?

A: The fast answer is, if you want to do a quick diagnostic test, you could say, “If you were well tomorrow, what would you do?” And the person with C.F.S. would give you a list of things that they want to get back to in their life, and the person with classic depression would probably say, “I don’t know.”

Eighty percent of people who have depression have fatigue, but it’s not their most serious complaint. They might have sleep problems, and some cognitive problems that are common, and they can end up being brought into the case definition for C.F.S. Some people with this disease do have depression. If you basically have a person who says they were feeling pretty good, now they’re sick, and then they get depressed, they could have depression as well as the illness. The real critical problem is when you have a person who has solely depression and does not have this illness, but has fatigue. So if your case definition is imprecise and you blur the categories, and that brings into it people who don’t have the illness, you ultimately have problems with estimating how many people have it.

[My italics]

 

[Tom Kindlon]

https://twitter.com/i/web/status/834516818819702794