News from Aotearoa/New Zealand and the Pacific Islands

Should the above be in a public thread @Hutan?

I received two emails about it, one from ANZMES and one from my local group, so I imagine other members of either ANZMES or a local group would have the information already.

 

Very much so.

I wasn't thinking about PwME, they'd be eligible anyway with or without code (just easier with the code). I was more concerned about random people cottoning on to it and abusing it, and sharing it on social media, which could then backfire if Countdown gets overloaded by false applications.

Maybe I'm just getting too cynical in my old age.

 

An update on this one:
I know that those who satisfy the age criterion are processed relatively quickly (a couple of days) and, as of today, a couple of spots have been available for them. Not ones they can use but they do now appear so: improvement.
As a PwME (who is a member of my regional ME association, who have not contacted me about this ....but not, I now realise, of ANZMES -although they were my first contact when approaching diagnosis)
I have not had any reply to my application at all (in a week). I guess the age thing might be automated?

Thankfully, we’re managing to access help from other community initiatives and gradually getting everyone some, very limited, access to essential shopping by email. And thoughtful neighbours.

 

I've been approved. Took maybe 5 days, so 2-3 business days. Don't think age is a factor as I'm much too young for the Supergold card.
Unfortunately approval doesn't translate into actual delivery slots in my rural area which is serviced by rural delivery courier. Maybe it's a bit better in urban areas where they have their own delivery drivers.

 

Just this morning, approved too! No slots.

We (the people I’m organising groceries for) also are needing delivery to a rural delivery address (although maybe 15min drive from a small town), before it gets onto other transport out here. Thus the slots that did come yesterday were useless for them.

NB the slots that did open for the older residents were yesterday and there are none today.

I think maybe my previous post stands: getting priority is doable, but the system is still entirely overloaded.

I’ll continue to not recommend trying.

 

The April 2020 issue of the New Zealand Doctor publication includes an in-depth 'How to Treat' clinical update article on Myalgic Encephalomyelitis /Chronic Fatigue Syndrome.

"ME is a common, debilitating and costly disease. Diagnosing and managing complex chronic conditions such as this is not easy with a 15-minute consultation, but this article, by Cathy Stephenson and Rose Silvester, provides a framework of evidence-based information for GPs working with patients with ME/CFS"
The 'How to treat: ME/CFS' article is on pages 31-35 in the online viewer, and on 'printed' pages 25-29.

https://www.nzdoctor.co.nz/flipbook

 

Not bad. But there still needs to be a recognition that the last few decades have been a completely avoidable failure, predicted and well-documented the whole time. Every step taken in the wrong direction was loudly warned about and those warnings have all panned out, because they were that predictable to anyone with minimal understanding of the issue.

This is still part of a desire to sweep this perfectly avoidable failure under the rug, as if it were someone inevitable and nobody's fault, and slowly ramp up what should have been done decades ago, again with no urgency, again with insultingly low resources, again with the "evidence-based medicine" that has completely failed us unless it is paired with actual scientific evidence and lost in a storm of disinformation, misinformation and bad opinions. We can't have the same mistakes happening over and over again and until that recognition happens it is guaranteed that we will remain stuck in the place where people deliberately shoved us in, against our will.

Some of the obstacles ahead are unfortunately hard to break because of myths like this:

I had the same GP from birth until I got sick at 26. Was my whole family's GP (also later abandoned them all almost as bad as he abandoned me, that's another story, but point is some GPs are bad at their job and anyway not everyone even has one in the first place). We went to regular check-ups until I was an adult and he was never on leave or missing any of the things that happened to me. This is about as best you can get at "knowing our patients well". But he didn't actually know anything about me. Because I was one of thousands of patients and hadn't gone to a consult for several years before I got sick, because that's the recommendation for healthy young adults. I'm sure he remembered some details, but that's very different from knowing.

Didn't do me any good. It took months to get an appointment. I was totally confused, barely able to make coherent sentences, and he did not pick up on that. At. All. After one referral to a CT scan, I was refused any more appointments by one of the staff there, by phone. That was that. Never saw him again.

I think it's true that many GPs do know some of their patients very well, especially the chatty ones who are memorable. But the target population most at risk of ME, typically mid-20's? They don't know us, we barely see our GPs unless we have other health issues and even then, they don't "know" us, who we are, what we are capable of, our skills, our motivation, our willpower. I think it's naive to bet on that "knowing your patients" when it has clearly and blatantly failed us all along. If only it were that simple, but it's not.

This is a scientifically knowable problem. We need a scientific understanding of the problem to solve it. I actually think there should be none of the "evidence-based medicine" because of how badly it has failed us, it is far too susceptible to woo and manipulation. It's not a universal tool and it simply fails with us, that needs to be accepted. We need basic research that establishes a long-term commitment and builds a credible base of expertise. We still don't have any of that. And GPs will never be much involved other than referring to the specialists that still have yet to exist, it's simply far too complex to deal with.

 

Apparently many GPs aren't very busy right now, with many people avoiding going to the doctor unless it's absolutely necessary. Here's hoping some GPs are using that downtime to do some upskilling with this article. Given the current knowledge many GPs have - or rather don't have - about ME, this can only be good.

I, too, have strong (unprintable ) views on the way we have been - and in many cases continue to be - treated, including by ignorant GPs. But I think it was a strategically wise move to gloss over that a little in this particular article. Right now we need to get as many GPs on board as possible and telling them they've been willfully and unprofessionally ignorant for decades would only have put them off. Better to acknowledge the picture most will have of themselves as decent people wanting to do the best for their patients and then giving them the information they need to do just that (and just as importantly the information they need to not do too much harm). Which is what this article does and does well.

@RoseE The article refers doctors to their local Health Pathways. Do you know if all of them have been updated by now?

 

No we don't know that status of some HealthPathway regions yet. (Including Southland.)

In early March, M.E. Awareness NZ emailed the regions that we were not clear whether they had the latest pathway in place. We highlighted that there was a new base pathway from the CDHB, and asked to be advised if this was being /had been reviewed locally. We heard back from one that they would endeavour to look at it, and intended to follow up with the rest about now. Timing doesn't feel that great now? Perhaps this article might prompt some regions to take a look tho?

 

I don't know the system so don't know what to say about timing.
Are the people who usually deal with Health Pathways currently flat out with Covid-19 response planning? In which case timing would be bad.
Or are they like EDs and GPs and twiddling their thumbs right now? In which case timing could be good, especially with the article out now.

 

Your post reminds of Ron Davis's posts about the battery of tests which Whitney took and which found absolutely nothing wrong with him.

Your much better at the science than I am but @Simon M has been one of those supporting Chris Ponting's GWAS application and there's a second GWAS study planned in Norway(?). But yes we rely too much on small pilot studies funded by charities like Solve and the research funded by OMF etc.

I agree there are no specialists to refer people to, at least not where I live - Belfast (part of UK).

 

I particularly liked this bit:

Pacing before final diagnosis is rarely suggested but so important. If at the end of the diagnostic process it turns out the person didn't have ME after all - no harm done. They may be marginally less fit than they might otherwise have been but nothing that can't be quickly recovered. But if they do have ME they may have saved themselves significant deterioration by starting to pace early.

Additionally, pacing during the period of ruling out alternative diagnoses may even help making a diagnosis. Often milder, undiagnosed pwME are in a constant state of PEM due to trying to maintain a semblance of normal life and it's not until pacing gets them out of this state that the connection between exertion and PEM becomes obvious. Alternatively if a person is pacing and on the lookout for symptom exacerbation but instead finds that exercise has positive effects, that person probably doesn't have ME and the search for an alternative diagnosis should be continued.

 

Just out of interest, does anyone have access to the e-learning assessment on this article? If I understand this correctly, doctors can read the article and then do some sort of assessment to claim some sort of continuing education credits?

 

For information:
The article links to 3 information sheets about PEM and Pacing we've discussed and fine-tuned in this members-only thread: https://www.s4me.info/threads/feedback-please-draft-info-sheets-pem-pacing.13712/

The direct links to the information sheets are:

https://m.e.awareness.nz/an-explanation-of-pem-for-pwme

https://m.e.awareness.nz/guidance-on-pem-for-clinicians

https://m.e.awareness.nz/a-guide-to-pacing-for-pwme

 

I’m liking the article by Karl Cole on page 11
talking about more phone consults
and more efficient use of consults
(getting on the phone with them and discussing then and there when that would get a useful answer) etc.

Hoping that more use of remote communication and less emphasis on in-person visits to hospitals (with many months of wait list) will help everyone but especially pwME (potential for less demanding access to healthcare).

 

Have now read it. Thank you @RoseE for drawing our attention to it.
It covers a lot of what took me years to understand for myself.
And the style and context make me hopeful for others who may go to their GP and have a hope of this sort of simple clarity (less doubt but without excessive claims).
I think it’s helpful to me to see things like this from time to time even though the content is now familiar.
Would like to make more of a critique but my main impression was of how familiar it all is.