HealthPathways, RACP & NICE guidelines - how do they fit together?

[Simone]

I'll be interested to see what you think.

Really good, solid info. Well done, @Hutan! It covers quite a lot, even though it’s brief.

 

[Yessica]

Really good, solid info. Well done, @Hutan! It covers quite a lot, even though it’s brief.

 

[Ravn]

A clear improvement on the previous version.

One thing I find annoying is that this page - in common with seemingly every other ME/CFS webpage out there - links to other, general pages about sleep and pain management which recommend exercise. Something the ME/CFS page just told you to go easy on. Must be confusing for people new to the game.

Also the links to health professionals set people up for a nasty shock I fear. For example, it'll be an uncommonly lucky pwME who stumbles across a physiotherapist who "if you are bed-bound [...] can help you find ways to avoid deconditioning (your body working less well) that don’t make your symptoms worse".

I realise those links were not of your choosing @Hutan, just needed to vent. Thanks for helping improve the page.

 

[Hutan]

I recall some media coverage featuring his story from a few years ago, especially the bit that referred to his local DHB not recognising ME. As someone living with severe ME in the same DHB region Marcel's story resonated - and motivated continued advocacy for better medical guidance for doctors. In answer to the question in the OP, one thing that has happened in NZ with regards to ME is that the Health Pathways have been updated. @Hutan here was instrumental in significantly improving the core version and the patient organisations have succeeded in convincing all the DHBs to also adopt an improved version so it is now much safer to ask doctors to look up their local Health Pathways guide (unfortunately patients don't have access to this document). Sadly this will make little difference if you strike a doctor who thinks they know it all already but it should help prevent the worst if a less dogmatic doctor is prepared to take their lead from it.

Following @Ravn's note that the ME/CFS and chronic fatigue HealthPathway content (i.e. the content for doctors) has been updated in Otago to adopt the Canterbury content, I contacted HealthPathways. They reported that:

"Southern have localised the Chronic fatigue page dated 9 December 2020 and it is nearly identical to Canterbury on a brief look through with some suitable local variation of services and programmes. It looks like they have retained our key messages. Midland and Hawkes Bay have not got a local version but both have an unlocalised version of Canterbury on their site."

They also noted:
"Keeping it reviewed and updated is a challenge but we are slowly learning how to do that across the 50+ health systems using it without everyone having to repeat all the work. The password was adopted mostly to reassure contributors they were writing for health professionals and thus able to interpret information without full explanation. It has also helped to be able to licence it to other regions with central management."