"Disability Measures & their Potential Applications for ME/CFS patients" 15-minute recording of Rebekah Maksoud presentation

From the first half of the 15 minute video:

She is looking at ways to enable pwME to demonstrate long term or permanent disability based on previously existing measures.

Topics covered:
What is ME/CFS
What is disablity? - pathology - impairment - functional limitation - disability
Disability defined by national and international bodies as marked limitation in at least 2 of a list of functional domains or extreme limitation in one of them.
Lower quality of life than other diseases
Burden of disease, need for care, disruption to education, in Australia about 50% unemployed, economic cost 14 billion Aus dollars, only 6% of these costs are government supported.

Illness progression and prognosis - fluctuating, PENE, recovery rare
Treatments - none except symptomatic. NICE removal of GET/CBT

Support in Australia:
NDIS permanent disablity difficult to obtain.

She then goes through the 6 recognised functional domains for disablity and measures that can be used to assess them.

I'm leaving the details of this main part starting at 7:23 minutes to someone else to cover, as I can't read the powerpoint screens - it's too blurry on my screen.
 
I don't understand how we are where we are without any good measurements on anything ME :( Am reading about disability and functionality scores now, used to track the elderly population, and am thinking there is much that could be translated into ME research. Why hasn't this been done already, even the BPS proponents should have been on it seeing how they fall over themselves to tell us symptoms are "real" :banghead:
 
But that is the exact opposite of what the BPS proponents want. They want vague, badly defined scales and measurements, that basically mean and measure what they want, rather than what we, the patients, want recorded. If we had accurate disability and functionality scores that applied to ME it would show 1. the scale of the problem and 2. that the BPS proponents don't provide any of the answers.
 
Andy said:
But that is the exact opposite of what the BPS proponents want. They want vague, badly defined scales and measurements, that basically mean and measure what they want, rather than what we, the patients, want recorded. If we had accurate disability and functionality scores that applied to ME it would show 1. the scale of the problem and 2. that the BPS proponents don't provide any of the answers.
Click to expand...
I know, but if we took them on their word that they believe the symptoms are real and disturb daily living they should have included something like this in one of their many, many pilot studies.
 
Trish said:
I'm leaving the details of this main part starting at 7:23 minutes to someone else to cover, as I can't read the powerpoint screens - it's too blurry on my screen.
Click to expand...
I've watched the rest but can't give details as I can't read the screens.
At 7:23 there is a table with the 6 disability domains and the tests that can be used for each domain.

She then goes quickly through each of these, sometimes giving examples of the tests being used for MS which could be used for ME.

She says most of the tests are done at a single time point, and for pwME you really need longitudinal data such as diaries to capture the effects of PEM, and some tests are too physically demanding for pwME to do.

It seems she is doing research on how pwME can be better tested for disablity to give evidence for disability benefits, and for treatment guidelines.
This sounds like a very useful project.
 
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