9. The following questions are about activities you might do during a typical day. Does your health limit you in these activities? If so, how much?[
Options for each activity:
Yes, a lot,
Yes, limited a little,
No, not limited at all
Vigorous activities, such as running, lifting heavy objects, participating in strenuous sports
Moderate activities, such as moving a table, pushing a vacuum cleaner, bowling, or playing golf
Lifting or carrying groceries
Climbing several flights of stairs
Climbing one flight of stairs
Bending, kneeling, or stooping
Walking more than a mile
Walking several blocks
Walking one block
Bathing or dressing yourself
Firstly I think the ambiguity in both deliberately (she has had enough information to have chosen the ignorance) saying 'symptoms after' to muddy PEM from just feeling crap and from fatiguability - so that definition of 'can't' is shot. Making all the answers BS uninterpretable.
Secondly her use of 'some of the time' type answers are deliberately ambiguous and undefined and it is unforgivable as far as market research goes... because it makes it uninterpretable as people will be meaning different things.
But thirdly shows an utter missing of the point - she hasn't even clarified that if people tick all 10 on the list as their health
doesn't limit them walking a mile 'on a typical day' because they work 5 days a week and 'could if they have to' then are bed-bound the rest of the time, and also the other 9 then she has no clue either whether that means they can do one day with one of those, or one day with all 10, or all 10 every day without fail because they walk a mile into work after a shower then vacuum and play rubgy... and has no clue what the payback will be. Or whether it is someone more experienced who knows they can down 5 coffees and force themselves to do them all but it would put them off work for a month.
Worse, and what looks cynical is that she knows full well that people go from 5 days to 4 days at work first. That they stop playing 'strenuous sport' every day.. but could and maybe do 'on a typical day' which doesn't mean 'on every typical day' so still have no new box to tick. That it is probably 6months of not having been able to find a moment where they could do the hoovering and be the one to get groceries before they admit to themselves that maybe it is their health 'limiting them' because it needs to be worded rather specifically to say not 'if you had to do one of these' but be more specific.
And because the typical day nonsense isn't 'how many days a week/month' could you
Further the 'can' nature of the 'limited by' is nonsense. I learned to take the lift at work, but it didn't mean I'd say I was 'limited' at doing stairs in the way this was written - but it would add up to make a difference to something else. They aren't treating severe people so what the heck is this list about and of relevance for when it is written in this way?
And I'm sorry but she/that team can read and is absolutely obligated to have read the literature and looked at funcap so know full well the answers to that
are relevant to the illness by saying to each item instead:
0: I cannot do this
1: My capacity will be severely reduced for at least three days
2: I can do little else on the same day and for one to two days afterwards
3: I can do little else on the same day
4: I must limit other activities on the same day
5: This rarely affects other activities
6: Unproblematic – does not affect other activities
And once you start looking at the days which aren't your best (which could be 3 out of 4 in PEM, when I was at work it was only 2 days I could shower as I worked from home), and people who are more severe then:
Can I just note the
'Bathing OR dressing yourself'
as if the two are the same!
The fact that someone doesn't get 'having a shower/bath' is the known acid test you are most likely to feel unwell for with ME/CFS being put on the same thing as 'dressing yourself' when that could be a different ballpark and
can be completely adjusted/how long is a piece of string depending on the context you are dressing for being joggers for at home unshowered vs trying to get a suit on.
More to the point what kind of person would lump together, or choose:
Moderate activities, such as moving a table, pushing a vacuum cleaner, bowling, or playing golf
When moving a table could mean a side table or pushing something light across the floor vs trying to get a marble table through a narrow doorway but the latter has little relevance to a 'typical day'. And moving a side table to put your teacup on has no bearing on being able to play 18 holes of golf. And that could be a putting green or driving range. Or even travel to go bowling, which would require being presentable and in company.
So someone who could play 18 holes normally would have to become so decrepit between filling ins to find they can't even move a light table or lift a handheld vacuum to just gloss over the floor of that one room with crumbs (as many will forget their hoover might already be the adapted type as its 2026 so most without disability don't push wheelbarrow types and do the whole house at once) 'on a typical day' in order for their answer to that one to change. And it be interpreted however way by the reader of said answers.
I'm sorry but have these just been taken from an old book from a few decades out of date written for old people to measure their frailty to do with age and various limitations those retired and old in the 80-90s had with heavy hoovers (female) or struggling on the golf course (male)? Because it seems so given the 'bending, kneeling, stooping' being one of a very small list.
