Does my child have CFS

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Bluebottle
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by Bluebottle on Wed Aug 14, 2013 9:10 pm

Re: Does my child have CFS

I wonder what actual proof she has of her strange claims? Tens of thousands of people suffer from the neurological illness myalgic encephalomyelitis for decades; I have. Dissociative disease is a mental health disorder. Do contact the TYMES trust for advice on this.

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talkhealth
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by talkhealth on Wed Aug 14, 2013 9:40 pm

Re: Does my child have CFS

Bluebottle - we politely ask you to refrain from answering any more questions.
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Dr Caroline Grayson
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by Dr Caroline Grayson on Wed Aug 14, 2013 11:11 pm

Re: Does my child have CFS

johnbell wrote:My child was diagnosed with CFS a few years ago but recently a paediatrician removed the diagnosis saying she has been ill for too long for it to be CFS. She (the paediatrician) said that the original diagnosis was correct but she had cured the CFS and what was left was a dissociative disease.

The symptoms are much the same although a little worse.

However, I thought that people suffered from CFS for many years so what should I believe?
I am unsure why the Paediatrician has removed the diagnosis. There is no upper limit on length of symptoms in order to make a diagnosis of CFS/ME. Although we know the majority of children and young people will make a full recovery there are some individuals who may continue to have ongoing symptoms.
Caroline Grayson
Dr Caroline Grayson
Consultant Paediatrician

goldblonde
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by goldblonde on Thu Aug 15, 2013 12:08 pm

Re: Does my child have CFS

I think you need a second opinion by a specialist in ME, Dr Grayson mentioned the majority of children fully recover but Paediatric CFS has quite a variable duration, from months to many years. Research by Dr Bell found although many children get better, the illness can be more chronic than we first thought.
For instance, a 13-year follow-up study of 35 pediatric cases by Bell indicated that as many as 20% don't recover, and of the 80% who reported a good functional outcome, only 37% considered themselves fully recovered.
So research shows only 37% fully recover

ME Mum LTS
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by ME Mum LTS on Fri Aug 16, 2013 1:43 am

Re: Does my child have CFS

TalkHealth - I wonder why you have asked bluebottle not to answer?

Why is that opinion any less valuable than the Dr?
Surely experience and sharing information is the point?

The advice given was to get advice - that is good advice.

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talkhealth
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by talkhealth on Fri Aug 16, 2013 12:31 pm

Re: Does my child have CFS

We run these clinics specifically for patients and people affected by health conditions to talk directly to medical professionals. We do recognise the value of advice from those with personal experiences and have a range of forums (separate to these clinics) where patients can freely talk to one another and share any knowledge and advice that they may have. These forums can be found using this link: http://www.talkhealthpartnership.com/forums/
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MichaelC
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by MichaelC on Fri Aug 16, 2013 4:11 pm

Re: Does my child have CFS

AYME (Association for Young People with ME)

08451 23 23 89

http://www.ayme.org.uk

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