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As a parent you are forced to go to these clinics with your child because otherwise there is no-one to write to the school on your behalf, it does not mean that the children have actually done all of the things that the programme outlines.

I mean her mistakes

Don't forget it also depends which charity. I would definitely like to see the Tymes Trust involved.

Why don't you let her know about the inaccuracies concerning PACE? What are they ?

If you look at the recommendations then they mention discussing ways that this will be shared with the patient community and also "strenghtening patient and public involvement". What can we do to help this along do you think?

Please clarify what you mean by "not much is wrong"? 1. As far as I can see they leave out homeschooled children. Given the lack of support in schools, there is a large group homeschooled for that reason, because of the ME. 2. They define severe ME in a very strange way indeed so why gather...

It would be useful to know if they are getting some funding via the Avon Longitudinal Study, does anyone know about this?

Yes it is worrying. Classically, if there is a cure for an illness then you enforce notification e.g. Tb can be cured (in most cases) so you make it obligatory. However e.g. AIDS in the 90s there was no cure or treatment yet and so there was no notification of it because otherwise you are...

It's important to note that their "activity management" is also an increasing regimen but not quite as rigid as GET. My daughter has had this and there is an expectation that she would try to increase 15 minutes of red activity every week if there is no set-back. Needless to say she reached a...