Online Program for School Nurses - Learn how ME/CFS keeps youth from attending school

I've just done this course. It's straightforward to purchase and complete it from overseas.

There are 4 videos, one by Dr Peter Rowe, one by a nurse and two by mothers of people with ME who became ill while children.

It has good points and bad ones.

The good ones include:

• the two videos with the mothers. They both come across very well and help people who don't know about ME/CFS understand the realities of the illness. In one case, the child is severely affected. In the other, the child has now grown into an adult and had varying levels of functionality while young. Both mothers commented on how useful social media is these days; one mother mentioned how amazing it was that there were 5 mothers of children with PwME from New Zealand who understood her situation; the other told us how important online connections are for her son.

• the video with the nurse is well focussed.

• the course gets across that this is a significant illness. Rowe says 'these are some of the sickest patients I've seen in my career'.

• it's also clear that this is an illness that hasn't been researched well enough, that there needs to be more funding.

• there's some good links and some materials that might be a useful start when preparing your own materials - a practical assessment tool, sample physician letter, list of school accommodations.

• the concept of PEM is covered

• the point that these children are not school avoiders or just unfit is made clearly. Rowe specifically states that it's not school refusal, not factitious illness, not primary depression, not psychosomatic.

• Rowe doesn't support curative CBT and slams the Lightning process as brainwashing and pseudoscience.

• the nurse and the mothers note that there should be less stress about academic achievement e.g. allow the student to just attend school for lunch times if that is all they can do; try to leave energy for joyful activity

The bad ones include:

• Dr Rowe's video is too long (over an hour)

• Rowe gives detail that isn't necessary, for example going into the differences between the Fukuda criteria and the IOM criteria. With a target audience of school nurses, they just need to know what symptoms to look for.

• Rowe spends a lot (really a lot) of time on EDS and joint hypermobility. There are pictures of finger splints, wrist braces, the Beighton test, he says that 60% of his patients have joint hypermobility. Obviously this is a big research interest of his, but the result is, I think, that many nurses listening to this will come away with a confused idea of what ME is.

• Rowe gives a muddled view about exercise. He says that 'rigid advancement of graded exercise before the patients are necessarily ready' can cause harm. He later says 'we are big fans of manual physical therapy where we address the restrictions of movement and then gradually, flexibly increase their activity so they get back towards normal'. and he says 'for the really impaired patients, they've really got to start activity slowly, increasing very gradually as their symptoms allow'. In contrast, the nurse talks about how the prevailing culture of 'pushing through' doesn't work with ME.

• Rowe says 'where possible, avoid excessive bedrest/sleeping', which I think does not acknowledge the reality of periods of hypersomnia, where parents trying to do the right thing end up pushing against the immoveable object of their child's need for sleep.

• Rowe's categorisation of patients according to severity level seems off - accommodations he suggests for 'moderate to severe' children include an extra set of books, so books don't have to be carried to and from school; and a skipped day of school mid week.

In summary - if I had to choose between a nurse who had never heard of ME/CFS and one who had only done this course, definitely I'd be happy for them to have done the course. But I think it could be quite a lot better. I think if someone already knows a bit about ME/CFS, I'd rather they read the Paediatric Primer and spent some time talking to children with ME/CFS and their parents.

I think a problem is that so many 'ME/CFS experts' have their own unique spin on things. Perhaps rather than have a video of a doctor giving a long talk, it would be better to make a set of slides that say exactly what needs to be said.