Rethinking the Standard of Care for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, 2019, Friedberg, Sunnquist and Nacul

[Jonathan Edwards]

I would suggest we have not definitively established the pathology for Alzheimer's or MS. In addition, these leaves some gaping holes. for instance, is a gambling addiction then not a disease? Are channelopathies without genetic markers not considered diseases? I can go on.

All those examples fit nicely into my definitions if you read them without bending the words Duncan.

 

[duncan]

We do not know the pathology of Alzheimer's. We know some of the signs, but nothing is universal except dementia.

I do not need to bend words. But others will bend ours if we leave open the door, I fear.

 

[anniekim]

some language that can and will be abused by saboteurs as they are worded in an ambiguous way, but then that happens regardless so whatever.

I think when bps proponents have heavily invested in framing ME as something that can be improved by graded exercise it’s more important than ever to leave no room for ambiguity.

 

[Hutan]

Medical providers can teach patients how to recognize their own personal energy limits and use “pacing” (dividing symptom-producing activities into smaller parts with interspersed rest intervals) to stay within those limits.34, 37 Once pacing is effectively used, some patients may be able to use an individualized exercise plan to increase available energy and functioning while avoiding post-exertional worsening.

I don't find the definition of pacing to be helpful. Pacing is not primarily chopping up activities into bits and interspersing rest time. It's making difficult decisions about what can and cannot be done. Like, do you work from home, do you work part-time, do you give up work entirely? Do you move to a smaller house, or move back in with your parents? Do you decide that you can't have children? Do you give up hobbies, sports? Do you miss attending your best friend's wedding? Do you give up listening to music? Do you use a bedpan rather than walk to the toilet?

Daily schedules are the bits that medical professionals so often seem to like talking about, but they won't achieve much if the number of work hours or the quantity of activities doesn't change. It's not just a matter of doing the same amount of activity in smaller chunks.

I rather doubt that medical providers are going to be "teaching" anyone to recognise their own personal energy limits. Sure, explain the concept of PEM and suggest that patients can watch out for indications that they might be overdoing things. But we should not be pretending there is more of a science to this than there is. Statements like this can suggest that the person with ME/CFS who experiences PEM or deteriorates over time has failed to "recognise their own personal energy limits" when in fact the personal energy limits can change from day to day and over longer time frames, for reasons that are not at all easy to discern.

 

[Sean]

Stuff like this just confirms that medicine really hasn't grasped what is happening here, and won't admit it.

 

[NelliePledge]

I think it’s correct that pacing is not just breaking activities down. I call that micro pacing. The first level correctly highlighted by Hutan above is macro pacing - decisions about whether activity can be done at all and about managing timeframes across a week, a month, several months.


Working out strategies to make some things achievable eg what used to be a round trip journey travelling an hour by car driven yourself to attend a funeral could require getting driven the day before staying overnight attending the funeral staying overnight and getting driven home the following day.

I think such things are much better addressed through mutual support by people with ME

 

[Trish]

Pacing is about changing your life. Breaking up the few activities you're left able to do is the least of it.