On BBC Morning there was a mum and daughter talking about FII

When mum's are new to ME they look or even told to contact AFME. The site looks good and they are helpful. If you start to have problems with School, Social Services or GP they come for a visit at your home. This is reassuring and comforting.

They explain PEM in detail and say the child must pull back with activity. At this point on the social media sites they defend AFME. They are advised to go to Bath from those at AFME and even tell the family about the research; but you don't have to enter into that. They also say they will get a runner to run for your child. Families jump at the chance to go to Bath and so do the GPs. They believe it is the best course of action and why wouldn't they.

They are now protected from school and Social Services but it is still a struggle and the child starts (mostly) a slow decline in health. Bath send out strong worded letters and depending on who you see and what mood they are in, to schools Social Workers and Gps. They stay supportive, until the child reaches a year. Then something changes and all support dwindles. It seems if you ask questions or refuse to go on research that support dwindles faster.

The child is dismissed one way or another from the system and by this time the mothers are not talking about AFME they are just happy to escape Bath.

While this is going on another 5 or 6 new cases each month go through the same path. AFME have been given funding for a buddy system which is very much needed. Our mothers and their children have nowhere else to go. This will never end and after 5 years of this it is heartbreaking.

To fight the system takes a huge amount of stamina and you get ground down to the point of you never go to the medical profession due to the danger of your child being taken away.

 

What EC protocol? Is this a separate document, or just the usual Crawley stuff?

Any idea how many have been un-diagnosed with ME/CFS *after* failed treatment and labeled with Pervasive Refusal Syndrome and Fabricated Induced Illness instead? As Crawley does?