SEN Magazine: "ME and you" by Mary-Jane Willows

Andy

Andy

Retired committee member
Mary-Jane Willows explains how schools can support pupils with ME

What’s the biggest cause of health-related long-term school absence? The answer may surprise you. It is, in fact, myalgic encephalomyelitis (ME) – sometimes diagnosed as chronic fatigue syndrome (CFS or ME/CFS).

ME is a long-term (chronic), fluctuating, neurological condition that causes symptoms affecting many body systems, more commonly the nervous and immune systems. ME affects an estimated 250,000 people in the UK, and around 17 million people worldwide.

People with ME experience debilitating pain, fatigue and a range of other symptoms associated with post-exertional malaise, the body and brain’s inability to recover after expending even small amounts of energy.

There’s much we don’t yet know about this serious systemic illness, including what causes it or how to cure it. It’s also hard to put an accurate number on just how many children and young people have ME; prevalence rates vary widely, up to as high as three per cent of under 18s. But even if schools only have one student with ME, they have an essential role to play in offering the right support at the right time.
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https://senmagazine.co.uk/home/articles/senarticles-2/me-and-you
 
What’s the biggest cause of health-related long-term school absence? The answer may surprise you. It is, in fact, myalgic encephalomyelitis (ME) – sometimes diagnosed as chronic fatigue syndrome (CFS or ME/CFS).
Click to expand...
Jane Colby must be seething.







1st Invest in ME Research International ME Conference London, UK 2006 - #IIMEC1 Jane Colby - Children and Education: Incidence, Clusters and Specific Problems of Youngsters with M.E.
 
I fail to understand why physical attendance at the school is so necessary. Wouldn't it be more productive to have a distance learning package that can be delivered by internet. There are already a number of children who use this (at least here in Canada and I would imagine elsewhere). And not even for reasons as serious as disability. I know of young people who did distance learning because they spent their childhood training in gymnastics (and I think it could have applied to other sports) with hopes of going to the Olympics.

There was also a not small minority of families that did home learning for religious reasons.

What is it with this bums in the chair at all costs mentality?
 
The problem with part time attendance is that there is pressure to increase it. It's a bit like GET- there is the inherent expectation that duration and frequency of attendance will increase.

We found part time more stressful as there is no 'catch up' mechanism for classes missed in most schools - the child is magically expected to slot in and keep up.

For those that are mildly affected school may be more viable if they have a good team around them, and expectations are realistic- this illness changes what can be achieved. We just couldn't get through to teaching staff that there was no way our daughter' s projected path was the same, especially in the timeframes envisaged.

The no isolation robots and online schools for learning maintain opportunity whilst providing social interaction. That is the way forward.

Attendance is a designated " outcome" for school performance matrix, hence a lot of pressure to turn up.
 
I don't like how in the article all the examples given are of kids starting off doing a tiny amount & then gradually able to do more. It just reinforces the expectation of some kind of 'natural' increase. As if ME/CFS were a form of convalescence. It happens with adults too. There doesn't seem to be any acknowledgement that the tiny level someone can manage is actually quite likely to STAY at the same level, quite possibly permanently. And that actually, compared to deterioration, that would be a great thing.

so a child that can manage 1hr of education per wk in yr 5 may still only manage 1hr a wk in yr11.
I know that's hard for them to accept, but its a darn sight harder for the child!
 
Just because you can do something doesn't mean it was easy for you. There is a dreadful assumption that if you manage something that is your ability level so they feel free to ask you to just try a bit - when you tried till you were dropping to manage in the first place.

You may guess I have experience of this.
 
We had a consultant say something to the effect that all my son needed to do in school was sit there, nothing about actually learning, or socialising! So definitely a ‘bums on seats’ message. He didn’t have a clue how difficult school is for kids with ME as it’s a busy, noisy environment.

And the campus of our school was quite spread out and on a slope, so I’d drop and pick up (for one lesson a week in school - this was once he was able to attend again after 3 years out) from the nearest point to the classroom, and do the signing in and out for the child, to save precious energy. Later on they insisted my son had to do it, but fortunately by then he was well enough to do the extra trek by the office. No clue on the school’s part that this wasn’t actually helpful to said child, just box ticking!

With regards to the article, what does any child gain from being in for half a lesson?! It’s useless educationally, and disruptive to the class, and a logistical challenge to the parents.

I’m with @Amw66 and Thymes Trust that online options are the way forward. And far less draining than sessions with a tutor.
 
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