Twisk: ME, CFS or SEID: What’s in a name?

[mango]

Myalgic Encephalomyelitis, chronic fatigue syndrome or systemic exercise intolerance disease: What’s in a name?

Frank N.M. Twisk, MBA MBI BEd BEc
ME-de-patiënten Foundation, Zonnedauw 15, 1906 HB Limmen, The Netherland

Asian Journal of Psychiatry October 2016 Volume 23, Page 70
DOI: http://dx.doi.org/10.1016/j.ajp.2016.07.004
Published Online: July 21, 2016. Received: July 3, 2016

With interest I have taken notice of a contribution by Sen and colleagues (Sen et al., 2016). According to the Sen et al. (2016) replacing Chronic Fatigue Syndrome (CFS) (Fukuda et al., 1994), a “mental disorder” which is “characterized primarily by the symptom of severe, persistent and disabling fatigue” and “included in the DSM-IV-TR within the rubric of undifferentiated somatoform disorder”, by Systemic Exercise Intolerance Disease (SEID) (Institute of Medicine, 2015), a “more ‘biological’ disease”, implicates “a need to debate the failure of the bio-psycho-social model to ‘mainstream’ and destigmatize psychiatry”.

http://www.asianjournalofpsychiatry.com/article/S1876-2018(16)30289-1/abstract

 

[mango]

Seems to be a response to this article:

Systemic exercise intolerance disease: What’s in a name?
Mahadev Singh Sen, Swapnajeet Sahoo, Shivali Aggarwal, Shubh Mohan Singh
http://www.asianjournalofpsychiatry.com/article/S1876-2018(16)30248-9/abstract

PR thread here:
http://forums.phoenixrising.me/index.php?threads/sen-et-al-systemic-exercise-intolerance-disease-what’s-in-a-name.45976/

 

[A.B.]

The BPS model of CFS is the source of stigma.

The ideas surrounding it are essentially hateful prejudice rephrased to sound more sciencey and less offensive.

Deconditioned = lazy
False illness beliefs = hysterical
Boom and bust behaviour = patients can't manage their own lives, need a therapist
Fear avoidance behaviour = patients let their fears control them

 

[JaimeS]

Fear avoidance behavior = patients are terrified of motion

Translation: people with really poor scores in biology saw that heart rate jumped when patients with ME, many of whom also have OI, stand, and drew the most logical conclusion possible:

Patients are clearly terrified of standing up.

I would say this is total and complete nonsense but it's what my first GP said when I told him that my heart pounded terribly when I first stood up in the morning: that I must be anxious about starting my day.