paediatric medical

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Re: Does my child have CFS

Postby miazulME on Fri Aug 16, 2013 5:25 pm

talkhealth wrote: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/


For clarification then which of these specifically is the forum for ME?
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Re: Does my child have CFS

Postby admin on Fri Aug 16, 2013 5:31 pm

Currently there is no specific forum for ME. We do have a talkpain forum.

If there is a need for a talkME forum, we would be happy to consider creating one.
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Re: Does my child have CFS

Postby Dr Caroline Grayson on Fri Aug 16, 2013 9:47 pm

I think it may be helpful to seek a further opinion.
The data about prognosis I quote comes from the longitudinal studies from the Bath and Bristol service were 96% of children and young people were found to make a full or good recovery.
I note that there has been previous recommendations to consult the TYMES Trust and I want to clarify that the recommendations from this organisation do not follow NICE guidelines and I do not endorse their approach
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Re: Does my child have CFS

Postby johnbell on Fri Aug 16, 2013 10:21 pm

Dr Caroline Grayson wrote:I think it may be helpful to seek a further opinion.
The data about prognosis I quote comes from the longitudinal studies from the Bath and Bristol service were 96% of children and young people were found to make a full or good recovery.
I note that there has been previous recommendations to consult the TYMES Trust and I want to clarify that the recommendations from this organisation do not follow NICE guidelines and I do not endorse their approach
Caroline Grayson


I guess I was after an answer around whether such a rediagnosis is normal.

Do you have a reference to that study.
A local CAHMS consultant did say he didn't know how such a rediagnosis could be made so currently going with that opinion. But I always remain concerned about what might happen.

The TYMES Trust were great when we had to deal with social workers in the past.
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Re: Does my child have CFS

Postby onlyme2013 on Sat Aug 17, 2013 12:20 am

Dr Grayson, as it was suggested that I contact the TYMES Trust it would be helpful to me if you would expand on which of their recommendations you do not agree with?
I also asked for links to studies on effectiveness/outcomes of GET for children and would be grateful if you would provide some.
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Re: Does my child have CFS

Postby johnbell on Sat Aug 17, 2013 9:41 pm

Dr Caroline Grayson wrote:I think it may be helpful to seek a further opinion.
The data about prognosis I quote comes from the longitudinal studies from the Bath and Bristol service were 96% of children and young people were found to make a full or good recovery.
I note that there has been previous recommendations to consult the TYMES Trust and I want to clarify that the recommendations from this organisation do not follow NICE guidelines and I do not endorse their approach
Caroline Grayson



Its a while since I have read the nice guidelines but I seem to remember they talk about the weakness of evidence and treatment choices should be down to a patient.

In another context I have come across doctors who clearly set out treatment aims and possible side effects talking of the risk benefit tradeoffs and require concent forms to be signed. This doesn't seem to happen with ME.

I've read many of the papers and many seem to have weak methodology and very poor statistics.

Given the weakness of the evidence and doctors failing to have a risk benefit discussion is is important that organisations such as the TYMES Trust give different views to parents. Parents and children need to be able to make informed decisions about treatment.
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