This is a spin off thread from this one http://forums.phoenixrising.me/inde...s-to-someone-with-me.42721/page-2#post-691622
For anyone who would like to continue the discussion of prognosis as per the report of the cfs/me working group to the chief medical officer, that was flagged up by @charles shepherd
The report states this, on page 7
I can agree entirely that only a 'small minority of patients recover to previous levels of health and functioning', but am not too sure on the idea of 'the likelihood' that most patients will improve over time. I don't know many people who have. In fact my experience is that many people become worse and more disabled over time - or plateau at a fairly disabled level of functioning.
It says a significant minority become severely permanently disabled and I wonder which group of patients is included in this - the bedbound severe that are locked away? or does that include the house/wheelchair bound? I think a lot of pateints become more sevrerly ill and stay that way.
Gradually progressive deterioration is something I have noticed in a lot of patients and have experienced myself and no one ever seems to suggest a more thorough work up to them - we have to fight hard for anything in this country when we have M.E.
The other issue I am interested in - do we just manage the illness better as time goes by - hence people, or ourselves, may feel we are a little improved, when in fact we are just managing the pacing and resting and acceptance part better. Dr Bell found this common in a follow up study. many people reported feeling improved or even better, when actually they were just as disabled but had changed their expectations and the way they managed their lives.
Where do these 'possibilities' and 'likelihoods' come from in this report? are they based on figures or experience?
For anyone who would like to continue the discussion of prognosis as per the report of the cfs/me working group to the chief medical officer, that was flagged up by @charles shepherd
The report states this, on page 7
1.4.3 Prognosis
Although current research evidence on prognosis indicates that only a small
minority of patients recover to previous levels of health and functioning, this
finding must be tempered by the likelihood of selection bias in studies towards
inclusion of those with poorer prognosis. The likelihood is that most patients will
show some degree of improvement over time, especially with treatment. A substantial
number of patients will pursue a fluctuating course with periods of relative
remission and relapse, while a significant minority become severely and perhaps
permanently disabled. Gradually progressive deterioration is unusual in CFS/ME
and should always prompt a further detailed clinical review to ensure that there is
no other explanation that has been missed.
I can agree entirely that only a 'small minority of patients recover to previous levels of health and functioning', but am not too sure on the idea of 'the likelihood' that most patients will improve over time. I don't know many people who have. In fact my experience is that many people become worse and more disabled over time - or plateau at a fairly disabled level of functioning.
It says a significant minority become severely permanently disabled and I wonder which group of patients is included in this - the bedbound severe that are locked away? or does that include the house/wheelchair bound? I think a lot of pateints become more sevrerly ill and stay that way.
Gradually progressive deterioration is something I have noticed in a lot of patients and have experienced myself and no one ever seems to suggest a more thorough work up to them - we have to fight hard for anything in this country when we have M.E.
The other issue I am interested in - do we just manage the illness better as time goes by - hence people, or ourselves, may feel we are a little improved, when in fact we are just managing the pacing and resting and acceptance part better. Dr Bell found this common in a follow up study. many people reported feeling improved or even better, when actually they were just as disabled but had changed their expectations and the way they managed their lives.
Where do these 'possibilities' and 'likelihoods' come from in this report? are they based on figures or experience?