Well At School: Chronic Fatigue Syndrome, Crawley, Loades et al

Sly Saint said:
http://www.wellatschool.org/chronic-fatigue-syndrome
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It's not as bad as I feared (which was diabolically bad).

But I cannot understand why people would write this, for example, (and others would unquestioning pass this on as sensible advice):

Some children/young people with CFS/ME benefit from regular rest breaks. These breaks should be in a quiet place, ideally away from the classroom. It would be helpful if breaks could be scheduled, especially for younger children. Other students prefer a medical timeout card which they can use in lessons if they feel they need a break. They should be allowed to leave the classroom without having to explain why. In a quiet space, e.g. the library, they should spend the time reading or listening to music or doing a downtime activity. They can be expected to return to the lesson after 10-15 minutes.
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So, the young person has decided that they are exhausted and shown the teacher the timeout card. They have walked to the quiet space e.g. the library, which may well be in another block or up some stairs, settled themselves down to sort of relax, and then five minutes later, it's expected that they will be getting up to walk back to the classroom? The chances of that regime having any sort of positive outcome is very slim indeed.
 
Hutan said:
It's not as bad as I feared (which was diabolically bad).

But I cannot understand why people would write this, for example, (and others would unquestioning pass this on as sensible advice):


So, the young person has decided that they are exhausted and shown the teacher the timeout card. They have walked to the quiet space e.g. the library, which may well be in another block or up some stairs, settled themselves down to sort of relax, and then five minutes later, it's expected that they will be getting up to walk back to the classroom? The chances of that regime having any sort of positive outcome is very slim indeed.
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The lack of knowledge is truly frightening. Especially as this is the " expert" .
Not a clue.
 
Amw66 said:
The lack of knowledge is truly frightening. Especially as this is the " expert" .
Not a clue.
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Yeah it's not exactly bad but so trivial and superficial it does not qualify as expert knowledge. This is high school level project done in 2 hours max level of competence. I'm OK with that level of competence, not from people who have inexplicably been elevated to the rank of expert despite having at best superficial awareness of some aspects, most of which are generic and not even relevant.

Basically the stuff you'd expect from a "Chronic fatigue for dummies" book. Actually for dummies by dummies but point stands.
 
That's interesting @obeat - I imagine there would be plenty of conditions where a 15 minute break (much less the 10 minute break mentioned in the 'Well at School' resource), inclusive of the time needed to get to the resting area, would not be adequate for every young person on every occasion.

I found this Dec 2015 document:
Supporting pupils at school with medical conditions
Statutory guidance for governing bodies of maintained schools and proprietors of academies in England

Unacceptable practice
25. Governing bodies should ensure that the school’s policy is explicit about what practice is not acceptable.
Further advice:
Although school staff should use their discretion and judge each case on its merits with reference to the child’s individual healthcare plan, it is not generally acceptable practice to:
....
  • assume that every child with the same condition requires the same treatment;
  • ignore the views of the child or their parents;
Presumably that would give some basis for arguing for a departure from what is standard? Probably you, @obeat, know much more about this.
 
At universities in Norway students with disabilities can apply for extra time at exams for rest (and also to answer questions). 30 minutes if the exam is <4 hours, 1 hour if the exams >4 hours.

Sadly doesn't help me at all and my goal at exams is to get done as soon as I can and get home and rest.
 
obeat said:
@Hutan the timeout of 15 minutes is standard for any chronic disorder in UK, not just CFS.
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There was no 'standard' timeout for any individual young person when I worked in Special Educational Needs in mainstream state secondary schools. In England each child/young person has their own needs accessed, agreed and recorded either at Local Authority level through an Educational, Health and Care Plan (for those with the highest needs) or at school level through discussion with the SENCO (Special Educational Needs Coordinator, the specialist teacher who holds responsibility for this area within a school).

As a Learning Support Assistant I had the discretion to decide what action the kids I was supporting needed during the lesson. Equally, for a young person without a LSA supporting them in the classroom, the teacher has the discretion to allow them to leave the classroom as and when their needs require this. The reduced timetable would be agreed by the SENCO with the input from both the parents and the young person, as well as any relevant professionals.
 
Some schools do use a 'medical card' to allow kids to exit the classroom. However, every teacher should know each SEN (including those with medical needs) child/young person's needs if they regularly teach them (allowing them to exit the room discretely when required). A card can therefore be useful if the normal teacher is absent and is being 'covered' by a member of staff who may not know the young people in the class individually, but shouldn't be needed under normal circumstances.

For kids with M.E. in secondary school, I would think a reduced timetable would be preferable to having to keep exiting individual lessons regularly for short breaks (as opposed to the odd occasion they may suddenly feel ill or overwhelmed). Taking regular '10 minute breaks' would be quite disruptive to their learning and mean they were constantly playing 'catch up' with the missed subject matter, meaning more exertion overall. If they are on a reduced timetable it is much easier for teachers to give them appropriate home learning materials or adjust what work is required of them.
 
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Hutan said:
It's not as bad as I feared (which was diabolically bad).

But I cannot understand why people would write this, for example, (and others would unquestioning pass this on as sensible advice):


So, the young person has decided that they are exhausted and shown the teacher the timeout card. They have walked to the quiet space e.g. the library, which may well be in another block or up some stairs, settled themselves down to sort of relax, and then five minutes later, it's expected that they will be getting up to walk back to the classroom? The chances of that regime having any sort of positive outcome is very slim indeed.
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It ticks someone’s box but doesn’t really match the condition

I can see how a misled teacher might think it’d be nice for themselves to spend 15mins listening to music

all it does is add to the catch up the poor kid has to do because they’ve made someone feel better tgat they took their break.

I hate this pacing stuff that’s being sold as if short rest breaks are good and proper long naps are really bad. That’s what I’d have needed or at least been able to lie down in proper quiet.

where did this nonsense about having proper sleeps during the day come from? I assum le it’s Crawley and others - but where is their evidence or initial sureness of it from?

As one of the most harmful things I think there is about me/cfs I’d be fascinated to know if it’s just people assuming based on their own prejudice or presumption
 
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