Thread by @MichelleBull4

Disappointed to see @RCPCHtweets promoting this elearning module which contains outdated, inaccurate and potentially damaging information. The module appears to rely heavily on the deconditioning theory with very little mention of #PEM a hallmark feature of this condition 1/10

https://twitter.com/RCPCHtweets/status/1335600279287422977

ME/CFS is NOT just about tiredness and fatigue. Additionally there is no mention of the abnormal physiological response to activity in people with ME/CFS - instead Graded Exercise Therapy/Graded Activity is heavily promoted and the NICE guidance quoted repeatedly. 2/10

It is important to acknowledge that the NICE guidance frequently referenced in this module is currently under review - the draft updated version takes a very different position regarding GET/graded activity 3/10

The draft NICE guidance states "Do not offer people with ME/CFS:
- any therapy based on physical activity or exercise as a treatment or cure for ME/CFS
- any programme based on fixed incremental increases in physical activity or exercise, for example graded exercise therapy 4/10

Additionally the draft guidance highlights the quality of evidence relating to GET is low/very low. There is a body of research showing the abnormal physiological response people with ME experience in response to exercise. Therefore recommending GET has potential to do harm 5/10

As @PhysiosForME we would be happy to work with @RCPCHtweets to provide updated and accurate content regarding exercise and activity for children & young people with ME to ensure that your members #DoNoHarm as a result of the training module you are providing 6/10

However, in the meantime @RCPCHtweets you should most definitely not be promoting this elearning module - I would propose the module should be removed & no longer available ... 7/10

...Furthermore, you should contact people who have undertaken the module to advise that the content is inaccurate and potentially harmful and that they should not advise graded exercise therapy or graded activity for children and young people with ME/CFS. 8/10

I note the elearning module is due for review in Feb 2021 - given the body of evidence regarding the abnormal physiological response to exercise in this cohort and the updated draft NICE guidance, I feel it would be irresponsible to wait until then to review the content 9/10

I think this is the longest thread I have ever written on twitter - however it is so important to ensure that training & education for health professionals includes accurate, up to date information to ensure we practice safely and deliver safe effective support for people 10/10