Speak Up About ME works to empower those affected by ME
(aka ME/CFS, CFS, CFIDS, and a slew of unprintable names as well)
– especially young people with ME/CFS and their families.
We work to help people find their advocacy voice,
to help people develop the confidence in their knowledge about ME,
so that people can get the services they DESERVE, and
so that people can work to change the misconceptions about ME.
We welcome you to work with us!
(We use the term early onset ME/CFS to refer to people who became sick with ME/CFS before the age of 23.)
Wondering why I use photos of two young men in the header, even though more women than men live with ME/CFS, and onset of ME/CFS is usually after age 30?
The easiest explanation is that these two young men are the patients I know the best.
They are the ones I live with.
They both have early onset ME/CFS, one having gotten sick at age 12 and the other at age 14.
(They are also the ones I can usually access of photos of.)
Speak Up About ME 
I’d rather you promoted the ICC ME Primer than the IACFS one. The reason being the former is pretty anti-CBT/GET while the latter wants even bedbound sufferers to try GET/GAT(!) No surprise that the IACFS primer has the support of government via the NGC, and as a body the IACFS/”ME” wants physiotherapists to be the lead specialism rather than immunologists, virologists etc. The ICC isn’t perfect either but it’s much safer in this respect.
We understand what you say about the ICC ME Primer (http://www.hetalternatief.org/ICC%20primer%202012.pdf).
We also agree that neither the ICC ME Primer nor the IACFSME Primer (http://www.iacfsme.org/Portals/0/PDF/PrimerFinal3.pdf) is perfect.
Given that until now, the U.S. has usually only had CDC material on government sites, having the IACFSME Primer on a widely recognized site, can be a step towards validation.
Ideally, the NGC will put up the ICC for ME Primer as well – but apparently it is up to the authors to initiate the process.
Fwiw – the IACFSME Primer is being revised – perhaps the revised version will adequately address the concerns you have brought up.
I have to agree with val. The IACFSME primer will cause tremendous harm to severe sufferers.
I found no problems in the ICC primer for any level of sufferers, except that, being thorough, it is of course long.
I do not believe that the IACFSME will do the right thing. Ever.