A.B.
Senior Member
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Since NICE reviews only abstracts and doesn't seem to care about study quality it's probably good enough for them.
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McDermott et al: Feasibility study for a community based intervention for adults with severe CFS/ME
- Thread starter mango
- Start date
snowathlete said
"
Claiming 5/12 participants improving? I guess such a claim is quite achievable if the improvement is achieved through subjective rather than objective measures.
Housebound = severe in this study. Not saying that is wrong, necessarily, but some other studies might consider that as moderate with the bed-bound being severe.
I've been housebound most of the time I have been ill and some of the time I guess I would label myself as severe but at other times moderate. I haven't looked in any detail how the questionnaire scores in this study compare with other studies using the same questionnaires on severe patients, such as FINE which certainly did appear to have some participants who would be considered severe based on those scores."
Being housebound is always severe. Going out is not a difficult thing to do, so if you can't manage to nip to the post box to send a letter you are very ill. When you have been housebound for a long time you can get everything set up nicely so you feel moderate, but if you have to cut out 95% of what makes life worth living - working, socialising, travelling, exercising - to experience a symptom free existence, then you are actually very sick indeed.
I don't say this to criticise, but it is easy to minimise things that are happening to us; we get used to how things are. I sometimes feel shocked when I am brought face to face with what other people of my age are capable of doing.
Perceptions are strange things. I realised that my friend with MS who had no feeling below the waist did not seem so ill as another who struggled about on crutches. It was because we are used to people sitting in chairs, it just seems normal. And this tells against ME, as we are judged as being lazy because we sit about all the time.
Moderate ME is when you can work all week if you spend the weekend in bed recovering, though I do not know how many people as bad as that have been used in CBT/GET trials.
Mithriel
"
Claiming 5/12 participants improving? I guess such a claim is quite achievable if the improvement is achieved through subjective rather than objective measures.
Housebound = severe in this study. Not saying that is wrong, necessarily, but some other studies might consider that as moderate with the bed-bound being severe.
I've been housebound most of the time I have been ill and some of the time I guess I would label myself as severe but at other times moderate. I haven't looked in any detail how the questionnaire scores in this study compare with other studies using the same questionnaires on severe patients, such as FINE which certainly did appear to have some participants who would be considered severe based on those scores."
Being housebound is always severe. Going out is not a difficult thing to do, so if you can't manage to nip to the post box to send a letter you are very ill. When you have been housebound for a long time you can get everything set up nicely so you feel moderate, but if you have to cut out 95% of what makes life worth living - working, socialising, travelling, exercising - to experience a symptom free existence, then you are actually very sick indeed.
I don't say this to criticise, but it is easy to minimise things that are happening to us; we get used to how things are. I sometimes feel shocked when I am brought face to face with what other people of my age are capable of doing.
Perceptions are strange things. I realised that my friend with MS who had no feeling below the waist did not seem so ill as another who struggled about on crutches. It was because we are used to people sitting in chairs, it just seems normal. And this tells against ME, as we are judged as being lazy because we sit about all the time.
Moderate ME is when you can work all week if you spend the weekend in bed recovering, though I do not know how many people as bad as that have been used in CBT/GET trials.
Mithriel
Yes housebound is always severe.
I find myself explaining to others in the ME world that my "daughter is not that bad", ie there are times when we can go out for a couple of hours together or she has "only been ill for 6 years!"
Our comparisons relate to others in the ME world, not to average healthy 23 olds.
Comparisons to the healthy population are too gut-wrenching to make on a regular basis.
To me being able to work all week and then spend the w/e recovering would be mild.
Moderate would be unable to work/study etc, most of the time.
To be honest any "level" of this illness is dreadful and life altering,
I find myself explaining to others in the ME world that my "daughter is not that bad", ie there are times when we can go out for a couple of hours together or she has "only been ill for 6 years!"
Our comparisons relate to others in the ME world, not to average healthy 23 olds.
Comparisons to the healthy population are too gut-wrenching to make on a regular basis.
To me being able to work all week and then spend the w/e recovering would be mild.
Moderate would be unable to work/study etc, most of the time.
To be honest any "level" of this illness is dreadful and life altering,
This is whats hard to make people (and doctors/disability judges) understand