A young girl with severe M.E

Hi everyone I'm looking for help on behalf of someone

I've been chatting to a mother in my local area.. She has a 14 yr old with M.E. and really is at a loss of what to do for her daughter.. She has joined the various M.E charities. Though, her doctors have been the main problem -not seeing her daughters condition as a real illness and they won't provide her with a wheelchair, even though her daughter has only been out with family 5times in the last few years and can't get out without one.. She also hasn't managed school part time either which is a problem. If anyone can help with this it would be greatly appreciated :)

15 Replies

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  • Dr Nigel Speight contact 25% ME Group

  • Thank you

  • The charity AYME ayme.org.uk/ is the obvious that has probably been contacted already. The Red Cross are good at loaning wheelchairs while applying for one, finding a sympathetic doctor is probably top priority as school non attendance without medical support will make the school contact social services, with all that entails in extra problems.

  • Change doctors if they can.

  • Great :) I will give that a try thank you

  • Carers UK carersuk.org/ all I can think of sorry.

  • That is helpful thanks :)

  • Tymestrust.org. is a good charity especially for children and young people with ME. I am sure they'll advise more specifically.

    I hope she can get in contact with Dr. Nigel Speight, as he is such a tireless advocate and has so much experience helping parents in exactly this situation she is in.

    I think the 25% Me group may also have suggestions. It is also worth phonecall to M E Association helpline available 7 days a week, as they often have good suggestions where to get help. Just be careful of clinics that offer GET. She probably already has been warned about that.

    Do let us know if she gives updates on any help she receives.

  • Thanks everyone for your responses I will pass this information or to her mother.

    So far she has changed doctors, and she is going to try to change consultant too.. She gets physio and her mother asked there about a wheelchair and she said still they didn't take her seriously

    they already are in touch with the M.E association and tymes trust.. The doctor sounds a good bet I will look up all the contacts and send them too her. I really appreciate all the help :)

    Oh what is the warning of the GET clinics I haven't been Warned?

    Much love to you all xx

  • I bought a wheelchair from Gumtree for £60 (I didn't realise that was quite pricey for a used w/chair) but it was much less stressful than going in to battle with the NHS for one. Of course a child in the UK is entitled to an NHS w/chair, but in her Mum's shoes I'd chose to save my energy to fight the big battles.

    I've just looked - there are many 2nd hand wheelchairs on eBay from 99p to £4000.

    All the best to her, it is so painful to see those so young with this cruel illness - it breaks my heart every time X

  • Yeah I really feel for her I've never cried about having this illness but I feel upset for her heartbreaking to think someone so young plagued with this illness and not getting the help she deserves..

    What she needs is an child's adapted wheelchair I gave her the link to whizz kids a charity that gives children adapted wheelchairs... would be a 12 month wait for it though.

  • There are many such warnings. Here is but one. ncbi.nlm.nih.gov/pubmed/198...

    I am probably saying too much here, but if it were my daughter..... I'd stop any physiotherapy that is exercise based.

  • Thank you budgiefriend thats insightful

  • Please refer her to Dr. Shepherd's report on treatment programs offered

    meassociation.org.uk/2015/0...

    This is extremely and unequivocally clear that exercise based programs should not be used as treatment. Certainly also clear that pacing is effective, and that CBT as currently presented in most of the NHS courses for ME patients, as well as GET, are making people worse.

  • Thanks for your reply :)

    Dr Charles was mentioned to me and I could not find any information myself

    It may be why none of these treatments are offered in my area

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