NPR: For People With Chronic Fatigue Syndrome, More Exercise Isn't Better

[Cheshire]

by Michaeleen Doucleff

Health organizations are emphasizing that ME/CFS is not a psychological disorder and that standard forms of exercise do not help. Instead, they're acknowledging that exercise can make the disease much worse unless doctors and patients are very careful.

The Centers for Diseases Control and Prevention has already revised its patient guidelines on ME/CFS and is currently revising the ones for physicians.

The action by the federal agency is a significant shift in the years-long controversy over diagnosis and management of the disease, which is characterized by months of incapacitating fatigue, joint pain and cognitive problems.

And last week, the National Health Services in the U.K. said it would reassess its guidelines for ME/CFS recommending exercise, after 20 members of Parliament signed a petition urging a review.

http://www.npr.org/sections/health-shots/2017/10/02/554369327/for-people-with-chronic-fatigue-syndrome-more-exercise-isnt-better?utm_campaign=storyshare&utm_source=twitter.com&utm_medium=social

 

[Yogi]

An important bit in this article is that it doesn't just take aim at PACE trial but also the very foundation that Wessely/White/Sharpe's whole life long careers and research were based on.

The controversial recommendations on exercise can be tracked back to an influential but erroneous paper published in 1989, in which British doctors offered a "new approach" for treating the disease.

First time I have seen this referred to in mainstream media.

P.S. "erroneous" seems rather generous to describe this paperl!

This is major turning point for the psychs.

Great article and we should thank Michaeleen Doucleff

http://www.npr.org/people/348778932/michaeleen-doucleff

 

[Kalliope]

Great article and we should thank Michaeleen Doucleff

Yes, great article! Here is the journalist's twitter account for those who want to praise her. It is not possible to give comments under the article.

Edit to add: The article is currently not on facebook either.
Edit to add:

https://twitter.com/i/web/status/914849200214499328

 

[Philipp]

On the one hand, it is great that this kind of stuff finally gets out there.

On the other hand, we are in a situation where we are actually happy about articles that basically say 'breaking news: smoking more and more does not actually cure lung cancer'.

Well, I'll take it for now.

 

[Chrisb]

First time I have seen this referred to in mainstream media

I started a thread on this paper in August, but it did not attract attention
Is this a still-smoking gun? Wessely, David, Butler, Chalder -1989
Discussion in 'General ME/CFS Discussion' started by Chrisb, Aug 16, 2017.
Copy thread to group

 

[Kalliope]

https://twitter.com/i/web/status/914880489822896128

 

[Kalliope]

NPR has shared it on Facebook now, if anyone wants to join the discussion. Discussion seems quite good so far.

 

[Barry53]

P.S. "erroneous" seems rather generous to describe this paperl!

Still kills it stone dead though.

 

[Esther12]

Great to have coverage like this in a venue which will reach those outside of the CFS bubble.

 

[alex3619]

First we needed critical mass in the CFS and ME and related populations. Then we need critical mass in academia. Then doctors. Then the rest is history.

We appear to be moving into the second stage.

 

[viggster]

@searcher is too modest to admit this but it was her connection with the reporter that led to this story. Michaeleen is looking to do more stories on ME/CFS and she certainly gets it. Good to have another top reporter interested.

 

[Riley]

@searcher is too modest to admit this but it was her connection with the reporter that led to this story. Michaeleen is looking to do more stories on ME/CFS and she certainly gets it. Good to have another top reporter interested.

Very cool. I know that she spoke with Dr. Lapp by phone, but I guess his comments didn't make the piece.

 

[viggster]

Very cool. I know that she spoke with Dr. Lapp by phone, but I guess his comments didn't make the piece.

Well, his comments informed the piece and if the interview was a good one, the reporter gained a deeper understanding of the issues. Also, talking to a doctor can help a reporter find appropriate patients to talk to. Too often interviewees feel like they've wasted their time if they talk to a reporter and don't get quoted. But that's rarely the case.

 

[Andrew]

I'm thrilled that we have this information we can show to doctors. At the same time, I can't help but feel anger toward all these agencies who refused to listen to us all these years, even when we offered evidence they were wrong.

I wonder if anyone at the CDC feels remorse for all the harm they have done to us.

 

[Alvin2]

I wonder if anyone at the CDC feels remorse for all the harm they have done to us.

When pigs fly