Cognitive and behavioural responses to symptoms in adolescents with CFS: A case-control study nested within a cohort, 2019, Loades et al

I totally despair. She's in it for the papers (and subsequent funding) isn't she. This stuff is not worth the paper it's printed on. It's amazing how much work you can get out of an awful questionnaire.

 

+ healthy controls
+ healthy and sedentary controls (couch potatoes)
+ depressed
+ psychotics/schizophrenics
+ addiction patients a (alcohol, drugs, games)
+ rheuma/arterio / pain patients
+ heart disease
+ cancer patients
+ others ... perhaps the rest of the hospital, staff and patients

 

When I was doing the Nina Muirhead transcript I also thought about Trudie Chalders lecture and her bit about the 'fear avoidance' model of CFS.
Thinking back to my own situation, I remember being terrified, not of exercise or activity (at the time I had no idea it could be harmful and pushed myself to keep going), but of becoming bedbound/ending up in a wheelchair (as described in a book on ME that someone gave me).
As I lived on my own I had no one to look after me so I couldn't stay in bed, but I did spend a lot of time on the sofa.

I often wonder if I had been able to have a period of complete rest and be cared for, if things might have gone differently.

But I did not 'avoid' doing anything because I was fearful it would make symptoms worse; I was just physically incapable of doing it at the time

 

I found my symptoms to be so bewildering and unexplainable that I hid them as much as possible. As a teenager I knew I would have to deal with my mother's response as well, not to mention a long walk to see our GP so it was easier got a reputation as liking to read in my room. Even years later my best friend had no idea as I was at my worst later in the evening.

So my fear was anyone finding out. This hiding away is the exact opposite of the hysteria for effect I was accused of when I finally saw a neurologist.

 

Moderator's note. At the request of the poster of the post that was here I've moved the post and the following 11 posts to the thread they were intended for.
https://www.s4me.info/threads/illne...ria-loades-cara-davis.8231/page-2#post-164656

 

My comment on this study is now available: "The risk of labelling CFS symptoms as unhelpful cognitive responses."
https://journals.sagepub.com/doi/full/10.1177/1359104519853849

Thanks to @Graham , @Esther12 , @JohnTheJack , @Robert 1973 for helping me with this.

 

I have both asthma and ME. Are my thoughts somewhere between helpful and unhelpful?

 

https://sci-hub.tw/10.1177/1359104519853849

 

You have Schrodinger's thoughts

 

That's the one. That explains why I purr so much and lap milk with my tongue.

 

https://twitter.com/user/status/1141656798627336192


https://twitter.com/user/status/1141655781877661697

 

You kind of have to marvel at the twisted illogic in rejecting something that has been observed in millions on the grounds that you cannot see it in action and promote instead something that has not been observed in anyone and not only cannot be seen in action either but is guaranteed to never be observed.

The psychosocial model has all the same flaws as what they reject, and then some, 100x over. Like rejecting a spaghetti plate because you don't like pasta then gushing over how amazingly good dry macaroni is. The logic is so bent out of shape you could likely diagnosis it with hypermobility.

 

Forgot to post the authors' response, which was published on 3 July. https://journals.sagepub.com/doi/full/10.1177/1359104519853860

 

https://sci-hub.tw/10.1177/1359104519853860

 

Thanks Michiel. Bit of a nothing response... presumably the Moss Moriss paper cited was just another questionnaire based one?

 

Yes, we already had a short discussion on it here: https://www.s4me.info/threads/the-p...rome-2011-moss-morris-et-al.9394/#post-165962

I think it's an important paper, I suspect it is often quoted.

 

"Fear avoidance was assessed with six items including ‘Doing less helps symptoms’ and ‘I should avoid exercise when I have symptoms’. Therefore, the items on this scale do not simply reflect post-exertional malaise."

What does she think post exertional malaise is?

With rheumatoid arthritis you are told not to exercise when you have symptoms but to keep active when they abate. When my son was a child he was not active when his symptoms flared, we did not set out on a long walk when he was struggling to breath, we let him rest.

Sorry, these people are idiots who lack common sense not to mention compassion

 

This response, as usual, is complete garbage. It describes what they want to be true, not actual things that can be measured or valid concepts. Their entire model basically has its own jargon that doesn't translate outside of it. There's no such thing as a way to measure "unhelpful beliefs" or even what is meant by that. As a term it's as scientifically valid as karma, spiritual life force and orgone.

The same with "all-or-nothing behavior", it's a completely made-up concept in this context and the response cites 2 papers that invalidated that while citing one of Moss-Morris' own paper that maybe it does, more research is needed (ain't it always?) but assumed to be valid.

TL;DR: we want this to be true and therefore argue that it may be true and eventually we will make up the evidence for it.