Discussion in 'PsychoSocial ME/CFS News' started by Andy, Dec 11, 2017.
Paywalled at http://onlinelibrary.wiley.com/doi/...ionid=1F1ED7F272617B400941D7A86325CC5A.f02t04
Abstract sounds sensible... thus removing my drive to read the paper!
To me it beggars belief that in 21st century there is no joined up online educational provision for kids with chronic illnesses. Not even a national online resource ( like moodle in further education) . Current systems do not allow kids to reach their potential - a sad waste
It is surprising. Even the free school stuff didn't cover someone setting up an online school.
There are companies offering online education but they are expensive and very hard to get local authority to pay for. Also online tutoring is available privately we did get someone to pay for lessons that way.
We have added issues of having to have a Scottish teaching certificate to teach here. Online companies not interested in added costs for small market. Our school is interested but hemmed in by " procedure", which means nothing happening fast. Tymes Trust and Nissai chipping away, but nothing move fast without a strong political personality to drive change .
Fortunately our daughter was 16. She needed a tutor for Maths AS level.
For the geography A level it was a mix of her attending a handful of lessons, copies of another students' notes, getting revision guides/assembling previous Q & As online, plus some Slideshare info on selected topics and us learning it together. She also had a very helpful teacher (also a friend of ours) who spent several hours one weekend explaining the "logistics" of the pre-release paper so that we could prepare for it together. For her final exam another tutor came for 4 separate hours in the Easter holidays and really boosted her confidence and supplied excellent summary notes.
Unfortunately most of the time her cognition has not been up to learning A-level info. She has had 4 periods of improvement on various antibiotics, which have helped her for a few months, both cognitively and stamina wise. She has been able to learn quickly at these times, so has managed an A -level in Geography and an AS in
Maths. Sadly trying the antibiotics again last autumn did not have the same effect, so she has not studied since 2014.
We are very grateful that she is not bed or housebound and can probably go out a couple of times a week on average.
It is very sad that so many children are too ill to attend school, however it does not give a complete picture and could skew the figures. I became ill after an infection when I was 14 but I never missed any school days because of it. I never felt I had chronic fatigue, never mentioned it as a symptom, I just knew that I would suddenly be unable to move. I had bad muscle pains which made taking notes difficult but I rigged up some bands for my wrists which helped. I had no temperature control and photophobia, but my main symptoms were neurological with bouts of double vision, speech difficulties and "absences" where I would suddenly find myself in a different place. Exercise and games were my biggest problem but I usually managed to wriggle out of them.
I do not want this to be taken the wrong way, I think children now are very ill, but I sometimes wonder if I got away with a lot because we had a general fitness sixty years ago, not a fitness from sport, but just from everyday life. There were very few cars and buses cost too much so I walked miles from the time I left my tansad (pram) about age 4 I think. Then I was allowed to wash underwear in the small sink with a toy washboard while my mother used the big sink and board to wash clothes, floors were scrubbed with a brush and soap once a week, that sort of thing.
For years after I became ill I always found it easier to walk quite far than to stand at a bus stop- until my legs went altogether one afternoon in 1990
Sorry, went off topic, but I suspect that I did more damage to myself by carrying on than I would have if I had been allowed to rest and recognise the need for rest in myself. I dearly hope we get a test which will detect ME in the early days before there is any need to miss schooling.
I think that we hear of those who are very ill here but there will be a range of different levels of disability.
I just wanted to highlight this paper again. I've just read the full paper. I was a bit suspicious of one of the authors but it is actually pretty good.
I think it is a paper that NICE should be looking at, given that it is a review of the relevant papers covering school functioning in young people with CFS from 1987 to 2015. I also think it is useful when countering aspects of Crawley's Lightning Process paper as that paper did, from memory, a poor job of collecting valid school attendance data.
Of the 36 papers, most only looked as far as school attendance or absenteeism in terms of school functioning. And basically all of them relied on reports by the child and/or the parents or did not clearly state how the data was collected. Some of the papers reviewed have Crawley and Chalder as authors. The authors of this paper come out pretty clearly saying that what has been done in the past is not good enough. They call for more standardisation in measures and approaches.
Information about instruments used, including their validity and reliability, and the accuracy of data being collected was generally not reported.
The accuracy and reliability of the information collected in the included studies should be viewed with caution, given the high reliance on retrospective informant estimates and lack of veriﬁed self-report data with ofﬁcial data or with schools. It is important to be mindful that the accuracy and validity of self-reported school constructs have come under scrutiny. It is recommended that researchers implement methods for verifying the accuracy of self-report data when collecting school functioning data of this nature in the future.
it could be argued that restricting the measurement of school functioning to school attendance somewhat simpliﬁes the potential complexities of school functioning in students with CFS.
it is important to remember that CFS represents one of many chronic health conditions. With rates of chronic health conditions as high as 30%,1,2 improving ways of assessing school functioning in all students is important, and may contribute to improving the educational trajectories of students with CFS and other chronic illnesses in the short and long term.
I am a little hesitant about that last bullet point and a couple of other bits of the paper that might be opening the door to standardised psychological assessment for all children, whereas what we mostly need is for the BPS ideology to be clearly got rid of so that teachers can show the care and flexibility to young people with ME that they would show to a child with, for example, cancer. But there was quite a lot to like in the paper.
It is a shame though that things like clearly reporting measurement procedures and not relying solely on self-report data for school attendance are things that have to be pointed out. You would think it would be common-sense. It all adds up to a lot of money and effort wasted over the last three decades on shoddy research.
TYMES Trust has been working with one such organisation. Local authorities have to pick up the bill, usually, so they push back, but it can be done. I can't remember the name.
This highlights one of the issues with CBT school attendance issues, whether or not the study is accurate. I have not read it, but like some here it had no red flags in the abstract. Being able to attend school is not important if learning is not occurring. The point of school is to learn, not sit in a chair. School attendance only makes sense if it correlates with school performance. We simply do not know if that is true with diseases like ME and CFS. So programs that increase attendance could, for example, worsen cognition and lower school performance. Where is the research showing otherwise?
For parents with children who are missing out on school, yes its hard. I probably had ME or something similar after measles encephalitis at age 7. I got through school but had to drop out of university. 11 years later I went back, for a new degree, after spending a year catching up on my math and other things at home. 11 years after that I went back and finished my first degree, part time as my health was worse at that time. At about age 41 I had two degrees.
Education can be undertaken later in life. Getting better and establishing a good path for the future is more important than current education, though I do think that if education could be undertaken without making things worse it probably should be.
Nissai - they have a virtual academy which is impressive and works for many children with health/ social issues which precludes meaningful school attendance.
This kind of education should of course be a matter of course in the 21st Century, as Belgium has done with BEDNET, but seems sadly beyond any of the educational systems.
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