Scales which measure disease severity

[Simone]

I’m after some information about scales which measure severity of disease in ME/CFS, in terms of functional impairment (mild vs severe). There seem to be several which measure symptom severity and, whilst there will likely be a correlation between symptom and disease severity, they’re not the same.

I’m aware of Bell’s CFS Disability Scale, but I’m not sure how much (if any?) work has been done on validating it?

Any tips would be most appreciated!

 

[Saz94]

Hummingbird foundation

 

[Ravn]

There are issues with all scales I recall discussing here - not what you want to hear I guess - but there may be useful information in these threads (I doubt my very quick search found all relevant ones but it's a start):

https://www.s4me.info/threads/questionnaires-and-scales-used-in-me-or-cfs-research.879/

https://www.s4me.info/threads/valid...chronic-conditions-2019-carlozzi-et-al.11452/

https://www.s4me.info/threads/me-severity-scales-discussion.9503/

https://www.s4me.info/threads/self-...’s-disease-and-stroke-2012-elbers-et-al.8516/

 

[Simone]

Thanks, @Sarah94. I’m familiar with the Hummingbird scale. I don’t think it’s had much work validating it either?

Thanks, @Ravn. I’ll have a look at those threads.

 

[Sly Saint]

see also
https://www.s4me.info/threads/when-...verity-you-were-ie-mild-moderate-severe.7624/
https://www.s4me.info/threads/why-are-the-majority-of-pwme-rarely-mentioned.7732/

 

[Andy]

Worth contacting the CureME team to ask how they determine/rate severity of people who donate to their biobank?

 

[JemPD]

Worth contacting the CureME team to ask how they determine/rate severity of people who donate to their biobank?

Actually, that would be good to know in any case. I think they have some funding/involvement from the MEA so I wouldn't be surprised if they used their scale

 

[Simone]

see also
https://www.s4me.info/threads/when-...verity-you-were-ie-mild-moderate-severe.7624/
https://www.s4me.info/threads/why-are-the-majority-of-pwme-rarely-mentioned.7732/

Thanks for those threads too, @Sly Saint.

 

[Simone]

Worth contacting the CureME team to ask how they determine/rate severity of people who donate to their biobank?

Oh, great idea!

 

[Dechi]

I found no scale that takes care of all angles. I’m also often in-between categories.

So for myself and others, when I educate about the illness, I have simplified it. I explain that mildly affected people are the ones who can work, even if all they do besides work is sleep, moderately affected people cannot work and are mostly housebound, severely affected people cannot work and are mostly bedbound and very severely affected people are bedbound and cannot eat by themselves, walk nor talk and they live in darkness.

 

[Andy]

On this topic, does anybody know if the often used "25% of patients are home or bed-bound" is based on anything more than an educated guess-timate?

 

[ProudActivist]

On this topic, does anybody know if the often used "25% of patients are home or bed-bound" is based on anything more than an educated guess-timate?

I doubt it, I would be interested to see where this came from. It has been long quoted. I imagine patients from both ends of the scale can be easily missed from a count.

 

[Snow Leopard]

On this topic, does anybody know if the often used "25% of patients are home or bed-bound" is based on anything more than an educated guess-timate?

I've had a lot of trouble trying to pin that down before...

 

[Andy]

I've had a lot of trouble trying to pin that down before...

I take it that you weren't able to then?

 

[Snow Leopard]

I take it that you weren't able to then?

Not to my satisfaction, no.

 

[ME/CFS Skeptic]

There's a study by Jason which uses patient samples from Newcastle and Norway and online patients, where approximately a quarter (23, 8%) was housebound. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5464362/

But I don't think that's where the IOM report got the 25% figure from. I suspect it's a figure that goes way back (there's a patient group called the 25% ME group that seems to existed for more than 15 years). One report must have given a rough estimate (I hope they didn't base it on the 25% estimate of passive patients by Bleijenberg et al.) and it probably got repeated from then on.