8yo with CFS. Any other parents with experience?

[LegoInfestation]

DD has been given an 'as sure as we can possibly be' diagnosis of CFS by a specialist team at the hospital. She is only 8 and this started nearly a year ago so she is very young for it.

I have had two good adult friends with CFS so am familiar with the illness in young adults and also know how it manifests in teenagers but in young children it has a very different presentation and trajectory. I am therefore looking to find other parents with young DC (under 10) with CFS for solidarity and a bit of a chat about how to best cope with this as a parent. We have had a very tough time already with a serious illness (perhaps this triggered the CFS) and I feel slightly overwhelmed at the prospect of what's to come with the CFS and the hospital's plan (yet to be shared fully) to manage it.

The charity for kids with ME is
https://www.tymestrust.org/

I don't know anything about them though. You may also find the ME Association or Action for ME helpful.

Thank you. I will look into these

Also Long Covid Kids will be helpful and many of the same strategies around recovery, pacing and school will be the same.

https://www.longcovidkids.org/

hi i work for an organsiation called Coffi having recovered from CFS myself. they are a group of scientists and doctors and my job as a recovered patient is to help them communciate thinsg that genunely help patients. I made a video with a parent who helped her son recover, a leading doctor , researcher , therapist and another recovered patients. Its what I would have loved when i was sick.