AS and CFS

[NoRunAround]

Ds (11) has AS and was dx with CFS at the beginning of the year. He gets tired very easily and I don't believe his CFS is taken seriously by his SS.

I would like, at the next AR, to include CFS as an educational need.

Would anyone who has a child with CFS as an educational need in their statement be willing to share the wording with me? PM if you prefer.

Posted too early (on phone).

Thanks in advance for any replies

maybe some help?

Thanks CFSKate. That is very useful.

just remembered this

www.investinme.org/Documents/Guidelines/Myalgic%20Encephalomyelitis%20International%20Consensus%20Primer%20-2012-11-26.pdf

near the end there is "Letter to educators & agencies regarding young people with myalgic encephalomyelitis (ME)"

It's on page 33/34 of the PDF, but it is labelled as page 27/28

Thanks - tried loading, but document unavailable?

I just tried it about 4 times, and it worked the last time, but the same document is also available here

Other places you could ask.

Voices from the Shadows have a facebook page here

I already linked to TYMES trust, I don't know if they have facebook.

Invest in ME do have a facebook, it is here.

There is also foggyfriends.org/ but I am not registered so I can't read the forums, so I don't know what goes on in there, but I can see there is a forum subsection titled Education.

Got it!

There's so much useful information here. I would really like to hear from anyone who has CFS described in Part 2 of their statement, and specified support in Part 3.

Ds's SS is seeing his difficulties through an AS-lens, and his fatigue is being downplayed. It is essential, I believe, to set this out in his statement. And not just as an afterthought in Part 6!

Mitochondrial dysfunction and sensory overload seem to be problems for both CFS and some AS. I keep seeing stuff about gut bacteria and problems in the immune system too. So there may be some areas of overlap. Who knows. I saw a post recently that said that at the recent London ME conference, one researcher Dr Baraniuk said "finding exactly the same brain in/activation and 'zoning-out' patterns in ADHD and CFS/ME"

So do you mean if he says "no" to doing something, they are thinking it is just because of AS reasons, whereas it might be because of CFS reasons instead, i.e. he has run out of energy and can't do it, or can't do it without suffering a CFS relapse?

Spot on with your last post