The ME Global Chronicle, Dec 2018

PDF file, download from here, https://let-me.be/e107_files/downloads/the_me_global_chronicle_-_30_-_20181222.pdf

 

The article was written months ago, in the summertime and has allready been posted (with references) and discussed on S4ME.
See: https://www.s4me.info/threads/central-sensitization-a-matter-of-concern.5346/

 

I think the words over achiever should have been left out. When healthy I did well with an activity level that would be too much for many of my friends. I wasn't over achieving, just achieving normally at a high energy level. There's a difference between managing a full life without symptoms and managing a full life + extra.

 

I would have thought an overachiever should have a score of 11...

 

Don't want to re-open the discussion about central sensitisation, but looking back at the essay, one thing that strikes me is how little we use the term "fear-avoidance model".

We typically aim our criticism at CBT or the BPS-model even though these concepts mean so much more than the version that is used in ME/CFS. In other areas in medicine these concepts make sense and many clinicians look favorable at them. So when they hear us criticizing CBT or BPS they are confused and much easier to buy into the false caricature that ME/CFS patients oppose every psychosocial perspective on their disease.

I think that if we argue instead that the fear avoidance model is unsuited in ME/CFS, that it would be easier for medical professionals to understand what we are trying to say. For example, that it is this form of CBT and its preconceptions that are flawed, not CBT or psychological counseling per se (which, who knows, could be helpful for some ME/CFS patients).

 

I think the scale is focused too much on symptoms. When I assess another patient’s disability quickly, I focus more on his ability to work/study or take care of himself. For example:

1) Normal health.

2) Able to work: Is able to keep working/studying but this takes up all energy. Has to give up hobbies and social life. Needs to rest or sleep in weekends to keep up.

3) Part-timer: can work/study part-time but often only under certain circumstances such as working from home, choosing working hours or changing the type of work into something less (physically) demanding.

4) Unable to work: Lives independently but this takes most of his/her energy. Is unable to work or study, even part-time.

5) Housebound: manages personal hygiene (washing, clothing, and eating) but needs care with basic household tasks such as cooking, grocery shopping and washing clothes.

6) Bedbound: can eat and talk/text for brief moments but needs care for basic hygienic tasks such as toileting and bathing.

7) At risk: is bedbound, needs tube feeding, can hardly communicate. Life is in danger.​

 

I think many of us are careful to specify our concerns are with PACE -style or prescriptive CBT rather than the supportive style offered to other, non ME patients.

I can see that using the words "fear avoidance" would be clearer.

 

Congratulations @Michiel Tack, you have produced the first severity scale that fits my condition and would have done so at any of the stages of ME I've been through to date.

Like @Trish my different symptom types vary widely in severity and in the disability they cause. Typically with the other commonly used scales 1/3 of me will fit one level, 1/3 another level and the last 1/3 yet a different level. Not very helpful. As for the overachiever bit...