James Coyne on poor British and Dutch fatigue studies

[Cheshire]

 

[Andy]

Great to see these videos.

It bugs me though that, at the start of the first one, JC makes the point that he used to refer to "chronic fatigue" when he meant "Chronic Fatigue Syndrome" and he now realises why that riles patients, and then the owner of the videos refers to only "fatigue studies" in their titles. Now, you could argue that PACE only studied fatigued people, not people with CFS exclusively as they should have done, and that the titles of the videos refers to that point but I would disagree - and even if it was the case, the titles should be clearer.

 

[Cheshire]

Lou Corsius added a comment under the video to justifie this choice:

Somebody asked me to change the title because I made a mistake calling it fatigue research. It is not a mistake. Most of these studies have been conflating the diagnostic criteria to an extend that we no longer can speak about research into CFS let alone ME.

Edit: Lou Corsius, owner of the youtube channel hosting the video.

 

[Andy]

Ah, thanks, when I watched these there wasn't any comments on them.

Personally, I think he would be better of calling them "prof James Coyne on poor British and Dutch "chronic fatigue syndrome" studies part 1." or similar. At the very least that would give his videos a chance of appearing in searches for CFS.

 

[Liie]

I just happened to listen to this old presentation.

He tells a story that goes something like this:

He had patients with depression who had fatigue. He gave them small tasks such as to go to a social gathering or have a short chat with a stranger. It was hard for them but it made them feel better.​

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Word got out that he treated "chronic fatigue syndrome". He started to receive referrals for people with that condition.​

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He discovered that those patients didn't seem at all depressed. They had no problems with their will to be social or do things. And they got worse when they pushed themselves to do the tasks he assigned to them.​

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He realized that the CFS patients clearly suffered from something else than the depressed patients.​

I though this story illustrated our situation well. Maybe it can convince someone.

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[Utsikt]

I had the same experience with my therapist. She’s great. I was depressed at first, but she was able to see that despite of me no longer being depressed, my functional capacity was still limited by something else. So she helped me deal with that and life in general.

Then my physio told me that I get symptoms because I’m afraid of doing things. Suffice to say, I did not stay with him.