Smartphone app and specialised clinic for chronic fatigue patients

[heapsreal]

I think the problem with rating symptoms is and can be different to rating ones function. Many of us especially in the beginning years function but have lots of bad symptoms. So we could see two people with the same symptom severity but function differently. I guess theres many reasons for this from finanacial, to a mother with very young children or babies as well as what support networks are in place.

I hate the whole rating symptoms especially for us when they can vary so often in frequency, duration etc

Rating scale like
ok
shitty
really shitty
got nothin

probably tells us more then a scale from 1 to 10, but some people like to crunch numbers i guess.

 

[Leopardtail]

I think the problem with rating symptoms is and can be different to rating ones function. Many of us especially in the beginning years function but have lots of bad symptoms. So we could see two people with the same symptom severity but function differently. I guess theres many reasons for this from finanacial, to a mother with very young children or babies as well as what support networks are in place.

I hate the whole rating symptoms especially for us when they can vary so often in frequency, duration etc

Rating scale like
ok
shitty
really shitty
got nothin

probably tells us more then a scale from 1 to 10, but some people like to crunch numbers i guess.

Your right, a version of the scale as you did it, is far more useful than 1..10
e.g. I am so exhausted if the house burnt down, I would die on the couch..... is a uniquely ME level of 'exhaustion' as would be 'I am so exhausted I cannot stand up to go the toilet....' These are both very different things to 'I feel exhausted at the end of a working day' as it's commonly used. The later is of course not exhausting and most people with ME would think that person to 'grow a pair of nuts, and whinge less'.....

I take both heap's and tanya's points that where possible things need to be described in some concrete way (possibly by impact) and SOCs that the measures need to be tangible.

But then that is why WE need to define them instead of allowing a bunch of researchers to come up with them, they just don't put enough effort into these fundamental things.

I wonder whether we would be better taking these discussions over to the patient data thread? So its all together?

 

[Leopardtail]

I think everybody should develop their own scales on different symptoms, and rate them. ( which a lot of patients are doing already). The goal here is to see if over time, things are getting better or worse or the same. I'm not sure if a stringent scale would apply universally. People should be willing to somewhat "average" out their symptom rating if they all want to use a universal scale.

we need for example to know what works better for very mild vs very severe ME - that requires something semi-universal. Creating our own individual scales also demands massive effort and due to our poor memories can take several years for those of us with high variation making earlier ratings incomparable with later ones.

please be more explicit about what you mean re the 'average'??

 

[Leopardtail]

I think the problem with rating symptoms is and can be different to rating ones function. Many of us especially in the beginning years function but have lots of bad symptoms. So we could see two people with the same symptom severity but function differently. I guess theres many reasons for this from finanacial, to a mother with very young children or babies as well as what support networks are in place.

I hate the whole rating symptoms especially for us when they can vary so often in frequency, duration etc

Rating scale like
ok
shitty
really shitty
got nothin

probably tells us more then a scale from 1 to 10, but some people like to crunch numbers i guess.

I also like to crunch numbers, but right now I recognise we have nothing precise or proven enough to do stats with. If we start with simple 'rankings' it may be more viable to assign values once we know how things correlate from much larger data sets. None of that is possible with randomly interpreted 1..10 scales though.

 

[Leopardtail]

I think everybody should develop their own scales on different symptoms, and rate them. ( which a lot of patients are doing already). The goal here is to see if over time, things are getting better or worse or the same. I'm not sure if a stringent scale would apply universally. People should be willing to somewhat "average" out their symptom rating if they all want to use a universal scale.

I understand what your saying, but why re-invent the wheel 250k times?

 

[knackers323]

Anyone dealt with the clinic yet?