Collecting data from users

[Dr.Patient]

Maybe we get so used to our reduced function that we can overestimate our functional levels?

Absolute truth! I've been saying that this is a TRICKY illness. While our bodies are losing their functionality, our hopes want us to get better, and we end up in denial as to the true state of affairs.

 

[Dr.Patient]

But in your previous post you described someone with the same level of around-the-house functioning as me as a 20 It don't work!

If you get symptomatic with the little activities, but are not bedridden, but are homebound, you are a 20. (sorry).

 

[Dr.Patient]

Here is a great article about incapacity from Bell:
https://www.masscfids.org/resource-...in-chronic-fatigue-syndrome-rising-incapacity

 

[Sushi]

If you get symptomatic with the little activities, but are not bedridden, but are homebound, you are a 20. (sorry).

You are still using the Bell scale to classify. It is not at all workable or appropriate for many of us, sorry!

Sushi

 

[MeSci]

Here is a great article about incapacity from Bell:
https://www.masscfids.org/resource-...in-chronic-fatigue-syndrome-rising-incapacity

I feel bad about suggesting that Dr Bell might have lacked understanding now. He certainly understands a lot about ME, how it affects us and our tendency to play it down..

 

[Dr.Patient]

You are still using the Bell scale to classify. It is not at all workable or appropriate for many of us, sorry!

Sushi

That's okay. Bells is still the best out there, and if anybody wants to know what their level is, they can describe their condition, and I can point to them their score. It will work for all patients, when properly 'synthesized' by an experienced physician.

 

[Dr.Patient]

This is when guidelines on Bells are to be considered with experience and judgment of a physician, and have to be 'interpreted' properly. They are not to be taken literally and misinterpreted as done by many patients.

 

[Leopardtail]

Extreme sensitivity to artificial perfumes, heat intolerance (drains my energy) and bright light (hurts my eyes). More than one person talking at a time - my brain goes into a spin.

have already got: photo-phobia, heat intolerance & chemical sensitivity down. I suffer that too with talking.
The question revolved more around levels or orthostatic intolerance, and levels of impact...

e.g. I can do X with my mind only when I sit or lie
or I fell faint when I: sit upright, stand at all, stand quickly, that kind of thing

 

[Leopardtail]

I have, but am not prepared to try using it as I struggle.

okay, will need to tabulate some info later and cannot insert html tables here. will have to find a work around

 

[Leopardtail]

This is when guidelines on Bells are to be considered with experience and judgment of a physician, and have to be 'interpreted' properly. They are not to be taken literally and misinterpreted as done by many patients.

for our purposes we need something that can be interpreted literally and with little explanation -- it's user supplied un-moderated data.

Please make yourself clear what you think is effective about it in that context, and what will need improvement.

 

[Leopardtail]

Here is a great article about incapacity from Bell:
https://www.masscfids.org/resource-...in-chronic-fatigue-syndrome-rising-incapacity

That made interesting reading... there is a simple social issue going on, when you first get ME you might well say 'I feel pretty rough to be honest' but people do not want to hear you continue to say that. I suspect we also gloss over our degree of disability just to stay sane.....

I continue on occasions to over-estimate what I can do. I do fair to average on a day to day basis but have lost the ability to accurately work out how long it will take to perform at task and my natural drive is to 'push' myself.

I have tired to make contact with Bell to get better information about how he determines % activity.

Any scale that combines a number of precise measures is going to mean few people exactly match an entry. the way I approach is to choose 'best fit'

 

[Leopardtail]

I found this quite interesting: Upright activity was the best indicator of relative health in the survey; moreover, Dr. Bell felt it was the most reliable indicator of prognosis and recovery. "When a person says they are getting better," he said, "it means they can do activities they couldn't do before."

The upright part plays into the OI question we have been discussing.

 

[optimist]

okay, will need to tabulate some info later and cannot insert html tables here. will have to find a work around

You can perhaps just make a screenshot and paste the image?

 

[Leopardtail]

too big for a screenshot, will mull it over once it's complete..

 

[Sushi]

That made interesting reading... there is a simple social issue going on, when you first get ME you might well say 'I feel pretty rough to be honest' but people do not want to hear you continue to say that. I suspect we also gloss over our degree of disability just to stay sane.....

I continue on occasions to over-estimate what I can do. I do fair to average on a day to day basis but have lost the ability to accurately work out how long it will take to perform at task and my natural drive is to 'push' myself.

I also forget what normal feels like. When I have a "good day," I am amazed and wonder if this is what others feel, or if it is still way under that.

I have tired to make contact with Bell to get better information about how he determines % activity.

I remember a while back Bell saying that he no longer reads any email from patients as it makes him too sad...

Sushi

 

[Leopardtail]

I also forget what normal feels like. When I have a "good day," I am amazed and wonder if this is what others feel, or if it is still way under that.



I remember a while back Bell saying that he no longer reads any email from patients as it makes him too sad...

Sushi

He does mention a sign 'no patient shall complain for more than 10 minutes' in his surgery for the same reason. I have asked only for clarification of the scale, so fingers crossed he might respond.

 

[Leopardtail]

Apologies for lack of activity, been in PEM and laptop failed....
I stumbled on this link while searching

Has anybody come across the 'Nightingale Scale' discussed on this page?

 

[ukxmrv]

I wonder if they mean this one? (because of all the other Hyde/Nightingale things on the website)

http://www.hfme.org/themeabilityscale.htm

 

[Leopardtail]

I wonder if they mean this one? (because of all the other Hyde/Nightingale things on the website)

http://www.hfme.org/themeabilityscale.htm

I think so have downloaded it to add them to the matrix with the other scales.. Thanks...