parents

“I feel like a ghost.” How included to children and young people with chronic conditions feel in their education, and what can we learn from their lived experiences? As a parent of a young person with ME/CFS, as well as a special education teacher, I bring these two aspects of my identity...

https://bmjpaedsopen.bmj.com/content/3/1/e000525.full Full text is open. I find it depressing that 'return to pre-morbid condition' is not strongly endorsed. This is pretty damn clear. Yes, there are problems, and athletes returning to 'normal' person activity might not be quite recovered...

The book is set for release in spring 2020 full article here https://www.shropshirestar.com/entertainment/telford-entertainment/2019/11/25/telford-woman-releases-book-to-help-children-understand-adult-illness/

Tea and cake: an opportunity for young people and their parents/guardians to eat cake and share ideas For more on the conference see this thread: https://www.s4me.info/threads/me-cfs-contributions-at-royal-college-of-paediatrics-and-child-health-conference-may-2019.9555/

I just came across this this morning and it fills me with what I can only describe as the collywobbles. Firstly how many children with severe ME will go to the GP or hospital? Almost never. What condition will the Dr/Paediatric know what to look out for? I now need a bucket of coffee and to...

New paper - has a number of red flags. Focuses on fatigue description and " payback" as a description for PEM without much definition. Questionnaire based, pre diagnosed Mild/ moderate but not housebound I don't know if any comorbidities (OI, EDS etc) have even been thought about I have not...

Paywalled at https://onlinelibrary.wiley.com/doi/abs/10.1111/cch.12626

[Apologies if this has been posted before] Dear Paediatrician, We are parents of children with ME. We are writing to as many Paediatricians as we can because many of you look after children with ME. ME is the single greatest cause of long term school absences in children, and in this...

https://www.huffingtonpost.co.uk/entry/because-of-me-i-can-only-imagine-being-the-mum-that-others-get-to-be_uk_5af2f208e4b00a3224ef5ca9

I've recently had to do a few internet searches looking for some helpful information. My son has been having difficulties as he realises that dad is ill and may not get better. This is quite a normal reaction apparently for a child of his age (9). It is manifesting itself mainly as...