News from Aotearoa/New Zealand and the Pacific Islands

Tapanui Flu
A thread about the outbreak of ME/CFS-like illness in New Zealand. Interesting to see the assertion that Otago and specifically the small town of Otago was not the only place that had an outbreak, and that there were outbreaks across New Zealand around 1983.

 

Gez Medinger will be interviewed on RNZ (Kim Hill's Saturday Morning) tomorrow.

 

On Gez: I didn't take notes.
I thought it started rather badly, with the suggestion that Long covid hits active people preferentially, people who have pushed themselves and worked very hard. Gez referred to a survey he did with 2000 people, noting that the vast majority of them had been active and stressed. But, before he got Long covid, he ran marathons and did You Tube videos about running. I'm thinking his sample selection was rather biased. I'm pretty sure the active high achieving people are the ones who tend to be loud about getting Long covid. They are used to being listened to, and have high achieving friends to help them. Whereas you don't hear nearly as much from the people who just plodded through life. So, it's easy to get a skewed impression. I mean, who knows, the idea might be correct, but making assumptions about risk factors based on who ends up in interviews could easily lead to research and policy being based on incorrect ideas.

That led on to a suggestion that people get stuck in a fight or flight situation, which revs upon the immune system. So, was suggested that treatments need to calm the immune system down.

Anyway, there was good stuff, probably mostly good stuff. Gez was particularly good on exercise not being curative, and making some people worse - he specifically mentioned graded exercise therapy as not being good. PEM was explained, the overlap with ME/CFS. It was mentioned that there is no cure, although acupuncture and other things got mentioned as things that help some people.

I guess I would have got a lot things wrong if I had been interviewed a couple or a few years into my illness, and probably would even now, so it's a bit harsh to criticise someone who sticks their neck out and turns up to be interviewed. On balance, I think it was a helpful interview.

 

I think being told repeatedly since almost the start of the pandemic that this doesn't happen, and if it does it's not to "healthy, active, fit" people makes some want to make it clear that it absolutely does. I guess for many it's a new experience of not being believed, and even those of us with clear evidence of our active lifestyle are being told we are/have been lazy and inactive based on the logic that otherwise we wouldn't have got ME.

Only in the last week I've been told ME is caused by lack of motivation and low sense of accomplishment (and then we just give up on life > manifests as fatigue and if the person had know of the concept of deconditioned I'm sure they'd have thrown that in..). Of course I then pointed out many (I'd say most) have motivations to do something. And many have had what would otherwise be called accomplished life before getting ill. Becoming ill as a teen I wouldn't say I have, but I'm one of the lucky ones that have been able to get an education, and my level of accomplishment following this would not be called "low". I'm still ill.

Yes, for some of the more inactive people I know, I've wondered how they would notice ME in their daily life. Especially if they got a milder grade like me. My fitbit tells me I've averaged ~4000 steps the last year, the year before that it was ~5000. I think plenty of healthy albeit inactive people can have this level of activity.

 

That's quite a problematic article reflecting an even more problematic medical system. First there is a "brilliant" cardiologist who believes that Long covid is the same as POTS, and can be fixed

So, Sarah has been following these recommendations for over 11 months and has the brilliant cardiologist got things under control? No.

It's not just the brilliant cardiologist, there are wonderful physiotherapists and occupational therapists:

The last part of the article is mostly an advertisement for cardio-respiratory physiotherapists and completely unevidenced breathing exercises.

In a health care system so cash-strapped that people aren't getting treated in a timely way for basic things were the treatment actually helps, money is being wasted on unevidenced breathing exercises. And a whole lot of people with Long Covid will be spending money and energy and time on ineffective therapies, and not yet understanding that actually there are no treatments.

 

And having been told by healthcare professionals they will get better, there is a chance they will become aggressive to anyone who says anything else.

 

That discussion has been moved here:
https://www.s4me.info/threads/usa-mount-sinai-pacs-clinic-and-dr-putrino.23051/page-3#post-487849

 

A brief item on Radio New Zealand
https://www.rnz.co.nz/national/prog...018904918/nz-s-only-long-covid-clinic-to-shut

It has a GP saying that they are seeing a lot of Long Covid patients and they don't know what to do with them and that they aren't funded to look after them. (There is a capitation fee that GPs get, so they don't want high maintenance patients.). The national health agency is saying that it won't be providing any specialist services and that GPs can look after people with Long Covid.

On the other hand, there's the question of how much use any specialist service is, other than allowing GPs to wash their hands of time-consuming patients and making the patients feel as though someone cares. The Christchurch service had occupational therapists and respiratory physiotherapists and sounds to have been focused on retraining people how to breathe.

So, the absence of largely ineffective clinics isn't necessarily a bad thing, as it may help make both patients and GPs to be louder about the problem of no useful treatment.