Support for Parents of Children with

 Chronic Fatigue Syndrome

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 I would like these ‘experts’ to,

      know the symptoms, the limitations and the ability of a child with CFS

      know how to deal with parents’ worries and to be honest in regard to what help they can realistically offer the pupils

      earn respect from parents through honesty so parents would know that they would always be given the correct  answers when correct answers can be given

      know what alternative education is available and when to suggest this

      earn respect from outside agencies as they would come to realise that the only reason that the school is passing the child over to them is because the school is no longer the right option for the child and not because the school does not want to deal with the ‘problem’

      have the knowledge and optimism  to tell worried parents how other children, who hardly attended school at all, became successful and what ‘route’ they took to get there

How can schools get it so wrong and what needs to be done differently?  Please answer the questions on this page so that  the information gathered can be sorted and evaluated to give a clear pictures of how to help children succeed in their studies despite being ill.

- what support was/was not given - and the effect on the child’s achievement this have/had

- what kind of support parents would like from their child’s school - and any suggestions on how it could be implemented

I would also like to hear of success stories from those who have recovered from CFS so that other children and parents can get solace that there is a life after Chronic Fatigue.

I would be very happy if schools would give information on what support they have  or can offer to children with CFS and what they feel is not possible to offer and why.


  This website is mainly for parents of children with Chronic Fatigue Syndrome (CFS) who have concerns about the lack of support they receive or have received from their schools







 


Schools are often unable to give real help to children with CFS because they do not know how to and parents feel let down because they think the school should be able to help. Instead of getting help, parents are called in to their child’s school to be met with the Form Teacher, Head of Year, the Pastoral Care Team and the Educational Welfare Officer, just to be told how many days their child has been absent and the derogative impact this will have on his or her education and future prospects. The parents know this already and would very much like guidance and information about how their child can succeed despite having missed a large part of their schooling.


Some schools refuse to even consider letting children with CFS re-sit a year and argue that it is an unpopular option because of the social stigma attached to ‘being kept down a year’. Repeating a year due to long term illness is completely different and might be the only viable option for a sick child to catch up before entering the ‘big’ world of Secondary School, it might also be the only option for a child in Secondary School to get good enough grades to be accepted into Sixth Form or College. Surely children, who are recovering from CFS or other long term illnesses, should at least have the choice of re-sitting a year?


When a child with CFS is too ill to attend school, the Borough in which they live has a duty to provide home tuition for that child. This can make the difference between getting 5 GCSEs, which is needed for Sixth Forms and colleges, and failing most of the exams due to exhaustion from trying to keep up with a full curriculum of homework, coursework and revision in as many as 11 subjects. Some schools are  reluctant to suggest this option because they are afraid of being accused of ‘passing the buck’ to outside agencies.

   As Chronic Fatigue Syndrome (CFS) is on the increase, it would be sensible if every school had a member of staff who would understand the effects of Chronic Fatigue and how to help children succeed in their education


Too many children with Chronic Fatigue/ME  leave school without adequate GCSEs or A-levels.