• 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, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Kinesiophobia, catastrophizing and anticipated symptoms before stair climbing

CJB

Senior Member
Messages
877
I'm trying to think of an elegant way of saying what a load of sh*t. It's not fear of stairs, it's conditioned terror, and the harm is real. Stairs may as well be a wall for me. Personally don't do 'em. Since they set out to prove it's all in our heads, they must have heard a lot of patients talk about stairs. It's perverse. God bless the Pacific Fatigue Lab.
 

*GG*

senior member
Messages
6,389
Location
Concord, NH
Note that there is a new paper with a title that is similar: Influence of Symptom Expectancies on Stair-Climbing Performance in Chronic Fatigue Syndrome: Effect of Study Context. I've started a separate thread on it.

Have a link?

GG
 

Hope123

Senior Member
Messages
1,266
Is it worth writing to the journal and pointing out some of these glaring errors? Since it appears to be a very minor journal, they may not care, but who knows?

My suggestion would be that people, regardless of whether you are a professional or not, send a letter into a journal if they have the energy. Letters have been published in medical journals by non-professionals, including a letter to the Lancet about PACE from a layperson with ME/CFS living in Japan. Ideally, letters are judged by the astuteness of the points made and supporting references rather than who is writing it. As patients, you will give a point of view different from professionals and make them consider things they might not have considered. This is why the best professionals continue to listen and learn from their patients. Even if the letter is not published, reviewers have to look through them and it might make them re-consider things.
 

Dolphin

Senior Member
Messages
17,567
My suggestion would be that people, regardless of whether you are a professional or not, send a letter into a journal if they have the energy. Letters have been published in medical journals by non-professionals, including a letter to the Lancet about PACE from a layperson with ME/CFS living in Japan. Ideally, letters are judged by the astuteness of the points made and supporting references rather than who is writing it. As patients, you will give a point of view different from professionals and make them consider things they might not have considered. This is why the best professionals continue to listen and learn from their patients. Even if the letter is not published, reviewers have to look through them and it might make them re-consider things.
And outside of the PACE Trial, there are only a handful of letters published each year, I believe because "nobody" is writing in (rather lots of letters being written but not being published). Most "bad"/questionable paper/claims never get challenged in print in the ME/CFS field. I think this can encourage more dubious claims as authors think they can get away with them.

There are people around who may be willing to help with wording if people try their hand at writing a letter.
 

Hope123

Senior Member
Messages
1,266
And outside of the PACE Trial, there are only a handful of letters published each year, I believe because "nobody" is writing in (rather lots of letters being written but not being published). Most "bad"/questionable paper/claims never get challenged in print in the ME/CFS field. I think this can encourage more dubious claims as authors think they can get away with them.

There are people around who may be willing to help with wording if people try their hand at writing a letter.

Also, a principle I learned during my education and work was that it matters WHO you direct your comments or complaints to. It's very well to vent to people who already understand your points and agree with you but sometimes, more can be accomplished by educating those who are open-minded but not knowledgeable OR challenging those with opposing views in their own arena. Not saying that this will be easy or necessarily pleasant but all stripes of people have been known to change their minds.
 

Doogle

Senior Member
Messages
200