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CFS and disability

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McAuleyclan
McAuleyclan Community member Posts: 4 Listener
edited June 2018 in Children, parents, and families
Hi just wondered if anyone could give me some advice my 13 year old son has just been diagnosed with Chronic Fatigue Syndrome and im trying to find out if this is classed as a disability and what help i could expect to get for him, any advice would be appreciated thanks in advance 
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  • Pippa_Alumni
    Pippa_Alumni Scope alumni Posts: 5,793 Disability Gamechanger
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    Hi @McAuleyclan, welcome to the community!

    I have ME/CFS myself and yes, it's widely regarded as a disability. There's no such thing as a register for disability and so things aren't 'classed' as such, but the World Health Organisation recognises ME/CFS as a nervous system disorder- you can read more about this here.

    Is there any specific help that you're looking for at the moment? If you'd be comfortable sharing your location, I'd be happy to look into this for you? 
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  • McAuleyclan
    McAuleyclan Community member Posts: 4 Listener
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    Hi pippa thanks for the reply I guess I’m trying trying to see what help is available for him really my eldest son has anxiety and depression but cares for my youngest as I work 4 days, I’ve just been put in touch with the careers centre and just made a home visit appt, it’s not about entitlement of money as such just what help to get him too and from school as he will be on a part time basis for a while, I’ve had such a struggle with doctors, school borough attendance team but now he has a diagnosis I see light at the end of the tunnel many thanks 
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  • McAuleyclan
    McAuleyclan Community member Posts: 4 Listener
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    Carers centre sorry should have spell checked myself 
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  • Pippa_Alumni
    Pippa_Alumni Scope alumni Posts: 5,793 Disability Gamechanger
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    Hi again @McAuleyclan, thanks for letting me know.

    I think it would be well worth contacting the ME Association's ME Connect helpline, as they could be able to put you directly in touch with services that are accessible to your family. You can also use their website to search for NHS specialist services near you- again, these may be able to assist directly. 

    If you did want to go down the benefits route, Action For ME have a welfare and support line with a benefits advisor, who may be able to assist in that area. Hope this helps you get started, and do let us know how you get on!
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  • peachy1966
    peachy1966 Community member Posts: 7 Listener
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    My son got cfs at 13y server couldn’t talk or move worst case seen he now 15y been bedridden but can talk and use arms . Can’t walk or have much energy . He home taught first through school agree to help refer him to access to education they send in teacher to you at home and help back school . If can’t still go school we got a education health care plan done it fight and took 8 mouths but it’s been worth it . We choice teachers and have a budget so he gets one hour a day or more . You have fight for everything but the right consultant helps . 
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  • peachy1966
    peachy1966 Community member Posts: 7 Listener
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    it is disability it’s physical it’s only mental if causes depression. 
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  • McAuleyclan
    McAuleyclan Community member Posts: 4 Listener
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    Hi peachy sorry to hear your son has such a bad case of CFS thank you for the information we are currently under UCLH hospital how about your son which hospital are u under ? 
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  • peachy1966
    peachy1966 Community member Posts: 7 Listener
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    We were offered UCLH but the journey and only help talking  in a group ..my son wants live and said he did not want a pitty party he wanted to look forward he always been strong through this even when he could only blink with eyes and could not talk . I was given a consultant who trained at that hospitail but near me he great. Tell me there no answer yet but children seem have better recovery . He is Honest and tell me there no treatment and talking helps if a person has trouble living with illness. But time is only cure and light box helps keep sleep patten . There new research and lots hope so thats good .
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  • peachy1966
    peachy1966 Community member Posts: 7 Listener
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    I find OT we have great and we getting wet room built and down stair bedroom as nobody know out come .but my son has never complained he wants be fittness trainer and he get their some how . He put us to shame he lives 9 days in bed and 2 hours out on 10 day .  Tell son there always light at end tunnel and its taking one moment at time and dont let anybody push him .we block all medical people if its wrong and tell you they dont know what works if there honest.  I have learnt to listen to what my son tells me if do something he will if he cant then we stop as no 15year old wants be in bed all day for 2 plus years.
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