The ME Global Chronicle, Dec 2018

I see there's an interesting article about central sensitisation and its misuse as a model to justify GET for ME written by @Michiel Tack. They seem to have rather unhelpfully decided to remove the list of references due to lack of space.

Michiel, have you posted the article with all its references anywhere else? If not, you could, if you wanted to, post it as a thread on S4ME.
 
There is a functional capacity scale on page 68 which may be useful for some people but I have my usual difficulty of not fitting anywhere on it because my physical functional capacity is much lower than my cognitive capacity.
Also it oddly has these 2 top categories. Since 9 is fully healthy, I don't see the point of 10. Is it suggesting that pwME used to be overachievers?

9 = No symptoms; very good concentration; full work and social life; can do vigorous exercise three to five times a week.
10 = No symptoms; excellent concentration; over achiever (sometimes may require less sleep than average person).
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Trish said:
Also it oddly has these 2 top categories. Since 9 is fully healthy, I don't see the point of 10. Is it suggesting that pwME used to be overachievers?
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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.
 
Trish said:
Oops, sorry @Michiel Tack, I should have checked. I thought it seemed familiar.
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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).
 
Trish said:
There is a functional capacity scale on page 68 which may be useful for some people but I have my usual difficulty of not fitting anywhere on it because my physical functional capacity is much lower than my cognitive capacity.
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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.​
 
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Michiel Tack said:
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.
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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.
 
Michiel Tack said:
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.​
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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...:rolleyes:
 
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