News from Aotearoa/New Zealand and the Pacific Islands

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
  • 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  • Removal of out of date NICE and Patient information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
Full access is only available to health professionals. Unfortunately, we don’t have permission to share the content.

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
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.

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.
 
New story on Stuff (and I think in the printed The Press today).
https://www.stuff.co.nz/national/he...-fatigue-sufferer-told-it-was-all-in-her-head

Good article and video.

We led this with...
Gillian Watson was struck down with the flu four years ago. She has never fully recovered.

"I was told it was all in my head so I kept pushing. Which is the worst thing you can do with Chronic fatigue syndrome. I did a degree in chemical engineering so I am, well I was a smart cookie. I used to deal with complex analytical data in my work. I went from that to barely being able to budget at home."

"Chronic fatigue syndrome isn't necessarily a degenerative disease but it can be if you keep pushing. And I believe that I wouldn't necessarily have the degree of difficulty I have with speaking and my mobility issues today if I'd got that message much sooner."
 
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
Also on our list to update are
  • the Canterbury District Health Board HealthInfo pages for ME/CFS (supposed to be a patient-friendly patient-relevant version of the HealthPathway; currently really bad. )
  • the Canterbury District Health Board HealthPathway for ME/CFS for Allied Health Professionals (e.g. physios, occupational health therapists)
Is the content not being public information temporary? I don't understand the point of that besides making accountability harder.
Unfortunately the content not being publicly accessible is a permanent thing. As good as the whole HealthPathway system is in ensuring progress in medical practice, this lack of transparency with the wider community does seem to be an outdated aspect. There is an idea I think that patients should not know what specific symptoms and signs might trigger a referral or treatment. That said, if you are a registered medical professional e.g. a nurse, in the relevant region, you can access the HealthPathway system for that region. So it's hardly top secret information.

Here's a thread that discussed HealthPathways more. I think our Canterbury (NZ) CFS Pathway can be accessed by health authorities using the system in Australia and the UK as well as in NZ.
 
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When will we move on from these horrible headlines?
We've had "things are changing for ME patients" for decades now. Still no change. Even in this article it basically reports how nothing has changed, how everything is clearly broken, yet includes the tired trope of "things are changing".

I don't think we'll move past them until everything moves past everything. Too much confusion, too much sunk cost, too many mistakes that no one wants to own.
 
Dr Vallings has written an editorial article titled "Chronic fatigue syndrome" for the Journal of Primary Health Care.

Is it possible to give Dr Vallings an editor or a media advisor or some such person? She clearly puts a lot of well-intentioned work into her educational efforts - and I appreciate that - only I'm not convinced the results are as she intended.

After reading this particular piece I feel like I've been whirled about and spat out again by a tornado, all dizzy and disoriented and unable to remember much of anything. I suspect any GP reading this would feel much the same.
Chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) is a complex physical illness characterised by debilitating fatigue, post-exertional malaise and many other symptoms. Microglial activity in the brain is accompanied by chronic immune activation, changes in energy metabolism and abnormalities in the metabolome and microbiome.

The illness was first described in the 18th century BC by Hammurabi, a Babylonian philosopher. Its history has been somewhat stormy. Charles Darwin and Florence Nightingale probably suffered from CFS/ME. Over the last century, outbreaks of viral illnesses have resulted in cohorts of people with serious ongoing health problems, which we now call CFS/ME. One of these cluster outbreaks occurred among medical staff at the Royal Free Hospital in London in 1955. Many remained very ill long-term. The name, ‘Royal Free Disease’ was coined. It was considered a serious physical illness, although in 1970 was re-labelled as ‘mass hysteria’.1 Patients’ symptoms were not adequately investigated and much damage was done. Many still consider CFS/ME to be a psychiatric illness, despite research evidence to the contrary. In 1978, the Royal Society of Medicine concluded the illness had a clear organic basis. The World Health Organization’s International Classification of Diseases (ICD-10) now classifies CFS/ME as a neurological illness (G93.3).

Full article here https://www.publish.csiro.au/hc/Fulltext/HCv11n4_ED2

Journal of Primary Health Care 11(4) 295-299 https://doi.org/10.1071/HCv11n4_ED2
Published: 18 December 2019
 
Is it possible to give Dr Vallings an editor or a media advisor or some such person?

Yes. I completely agree @Ravn that that is what is needed. Dr Vallings' intent is clearly good. She seems determined to convince her readers that there is proof that CFS/ME is a biomedical illness, but quoting great swathes of tiny unconvincing studies is not a very good way to do it.

Over time natural killer cell function diminishes.
Acupuncture and physiotherapy may help.

Several diagnostic criteria have been proposed over 30 years, but the simplest are the Fukuda criteria.11Canadian criteria have been established which are more encompassing and accurate, but can be time consuming to assess.12
This is all she says about diagnostic criteria, not mentioning that Fukuda doesn't require PEM and ignoring the IOM 2015 Criteria which are probably the most useful in a clinical setting.

There's good stuff, like this:
Diagnosis, acknowledgment and education are major steps in helping patients cope with this serious illness.

But it's quite a grab bag of home remedies, finger-wagging motherly advice and unproven biomedical statements.
A light snack at bedtime is helpful because the orexin system is faulty. Increasing glucose levels will lower orexin thereby improving sleep.28 Bedtime stimulation with electronic devices should be avoided.29 Some patients try natural approaches to sleep management, including 5HTP, tart cherry or chamomile. Prescribed medication is often needed.

I'm planning to write a letter to the journal.
 
This research article in the Journal of The Royal New Zealand College of General Practitioners has just been brought to my attention...
http://www.publish.csiro.au/HC/fulltext/HC19041

A neuro-inflammatory model can explain the onset, symptoms and flare-ups of myalgic encephalomyelitis/chronic fatigue syndrome
Angus Mackay 1
+ Author Affiliations
Journal of Primary Health Care 11(4) 300-307 https://doi.org/10.1071/HC19041
Published: 29 November 2019

Discussion of this paper is continued here.
 
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This research article in the Journal of The Royal New Zealand College of General Practitioners has just been brought to my attention...
http://www.publish.csiro.au/HC/fulltext/HC19041

A neuro-inflammatory model can explain the onset, symptoms and flare-ups of myalgic encephalomyelitis/chronic fatigue syndrome
Angus Mackay 1
+ Author Affiliations
Journal of Primary Health Care 11(4) 300-307 https://doi.org/10.1071/HC19041
Published: 29 November 2019
Interesting. Still curious how that would explain the myalgia, but then again there is probably a similarity with the flu and similar infections and why they also have muscle and joint plain. The pain is very unlike the soreness from exercising long-sedentary muscles, contrary to the confused BPS model.

This is interesting:
It occurred to me that the multiple triggers of ME/CFS,1 including particular viruses (like Epstein–Barr virus causing infectious mononucleosis), chemical toxin exposure and severe trauma were not dissimilar to the kind of stressors that perpetuated the disease (Figure 3) other than in their intensity.
I can't say I have noticed that, especially as for many it seems to be simple cases of the flu and I've had a few minor infections with flu-like symptoms and they didn't particularly affect the illness. But the effect sure is similar. An accumulation threshold could be at play.
 
This is an opportunity to raise awareness of the issues in accessing education and support for students at NCEA level with ME and other disabilities. n.b. There are an estimated 3,000 young people with ME in NZ.

Individuals can apply for a role on the "Disability & Learning Support NCEA Panel" by sending in a CV by 5th February 2020.

You will need to be prepared and able to commit to 4 days panel work during 2020. Most likely difficult for someone ill with ME.

The Ministry of Education says...

"For the Disability & Learning Support NCEA Panel, we’re looking for people that can demonstrate:
+ Expertise in disability and/or learning support issues in senior secondary schooling or similar context, or lived experience as a disabled person in education
+ An ability to recognise and acknowledge the diverse needs of a wide variety of different disabled young people and/or people with learning support needs
+ An awareness of the particular issues in NCEA affecting key groups of disabled young people and young people with learning support needs."

For more information... https://conversation.education.govt.nz/conversations/ncea-review/ncea-panels-eoi/

Please shoulder tap someone if you know anyone with some education experience and/or some lived (self or child) experience that could contribute in this way.
 
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I was having a look online for how issues around MESH injury were treated by different countries and came across this in NZ

Diana Unwin Chair in Restorative Justice
Victoria University of Wellington

The Collaborating Centre for Safe Healthcare, Faculty of Health, Victoria
University of Wellington partnered with the Chair to provide expertise in safe healthcare.

Has anyone approached this group or the Restorative Justice Chair regarding ME issues in the past?

(here is their MESH document)

https://static1.squarespace.com/sta...na+Unwin+Chair+in+Restorative+Justice+(1).pdf
 
...
Diana Unwin Chair in Restorative Justice
Victoria University of Wellington

The Collaborating Centre for Safe Healthcare, Faculty of Health, Victoria
University of Wellington partnered with the Chair to provide expertise in safe healthcare.

Has anyone approached this group or the Restorative Justice Chair regarding ME issues in the past?
..
Hadn't heard about either the chair role or the group. Thanks!
Definitely will be good to investigate.
 
Note from moderators:
This post copied and another moved to a thread on this story here:

https://www.s4me.info/threads/the-heart-breaking-experiences-of-mothers-with-me-nz-herald-feb-2020.13710/

New article in the NZ Herald from the Complex Chronic Illness Support team...
https://www.nzherald.co.nz/nz/news/article.cfm?c_id=1&objectid=12305695

"Local Focus: The heart-breaking experiences of mothers with ME"
Talks to that topic a bit. But also to how people with ME are not eligible for home care.
 
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