rvallee
Senior Member (Voting Rights)
Key changes seem good. I'm very much looking forward to direct acknowledgement that the current recommendations are so flawed that the entire process that lead to their creation needs massive reform as they have caused harm.MECFS Canterbury (https://mecfscanterbury.nz/#/) can FINALLY announce that the new CDHB (Canterbury District Health Board) HealthPathway for ME/CFS is live - as of Friday, 29th November 2019! We have been working with the CDHB team over the last year on getting the content improved, so are really pleased it is up now.
'HealthPathways' is an online system that GPs log into to view best-practice advice for assessing and managing a wide range of health conditions and concerns. Each region /DHB in NZ has their own ‘copy’ of the system content, but the base content is provided by Canterbury.
The old 'Chronic Fatigue Syndrome' Pathway has been completely rewritten. The new content is largely based on the information on the US Centers for Disease Control and Prevention site, as this is the most up-to-date and informative of the government sites around the world. (Check out www.cdc.gov/me-cfs/index.html if you haven’t already.) Yes, this means that the diagnostic criteria suggested for GPs to use in their clinical setting is based on the IOM 2015 criteria. Not everyone will agree with that, but it gives a fairly accurate picture of ME - more so than, say, NICE in the UK (not updated since 2007 and still includes GET).
The new ‘Chronic Fatigue’ Pathway will help GPs to assess someone more thoroughly to confirm if they have ME/CFS, idiopathic chronic fatigue or perhaps other conditions that may have different treatment options. It also guides them to support people to manage their activity carefully.
Some key changes;
- Separation of ME/CFS from idiopathic chronic fatigue but cover of both
- Use of IOM diagnostic criteria for ME/CFS
- Removal of recommendations for CBT and GET
- Reduced recommendation for trial of antidepressants
Full access is only available to health professionals. Unfortunately, we don’t have permission to share the content.
- Increased supportive advice for GP team management
- Follow-up recommendations
- Increase in discussion of orthostatic symptoms
- Removal of out of date NICE and Patient information
- Addition of new education material
It is likely that GPs and other health professionals will give feedback on the new HealthPathway and we have also asked for a couple more edits. So there may be a bit of fine tuning over the next couple of months (note we don’t have ownership rights, but the team working with us has been receptive when given evidence to back requests up).
Will this advice be available to GPs in other regions?
GPs in other District Health Boards will either see the unlocalised Canterbury pathway, or their local HealthPathways team will need to be encouraged to review /align their local versions. We have been told that Auckland, Nelson/Marlborough and Southern have local versions. And that Hawkes Bay doesn’t use the HealthPathways platform. So, the other regions should be seeing the Canterbury version now.
We are currently considering the best way to highlight this dramatic shift in content to all regions. It could be an email to the local HealthPathway teams from MECFS Canterbury, or perhaps M.E. Awareness NZ, or the regional support groups, or individuals are worth considering too, as DHBs have a legal responsibility to listen to the people in their areas.
With this leading material being brought up to date, we also have the opportunity to ask for other online pages about ME/CFS to be updated. e.g. Health Navigator, Southern Cross
But every bit of progress adds up to that moment so this is still very positive, at least unless internal fury succeeds at blocking or watering it down. Truth moves slowly but it grinds down everything in its path.
Is the content not being public information temporary? I don't understand the point of that besides making accountability harder.