News from Aotearoa/New Zealand and the Pacific Islands

I dont know what the exchange rate is, but that sounds expensive, especially these days when useful info can be found online. I hope it's good.

 

I think the name used for the disease in this 'fully revised edition' - 'Chronic Fatigue Syndrome/ME' - is a good indicator of the likely content. Sort of right, but a bit out of date, and with more than a touch of BPS.

Assuming it's like Dr Vallings' previous books, people can get better, and more psychologically safe, information from the internet these days.

At the 2019 ANZMES conference Dr Vallings said that, some decades ago, she had worked with others on research that showed that there is an 'ME/CFS personality', and she continues to believe that that is correct. At the 2018 ANZMES conference Dr Vallings said a number of questionable things including that gargling and singing in the shower are recommended treatments.

 

Gargling

 

It was a fairly helpful interview, in terms of increasing public understanding of the illness. Dr Vallings does refer to the illness as CFS/ME or Chronic fatigue syndrome which is slightly annoying.

She said that there's no reason to think that Long Covid is not a post-viral fatigue syndrome, as occurs with many viruses. And that, once the symptoms last for six month, they are termed ME/CFS. I thought that was helpful. She gave a good account of the symptoms and the range of severities. I like that she noted how people mildly affected may be attending school or working, but they run out of steam quickly, so 'even the so-called mild cases are quite compromised'. She also mentioned that some people are totally bedridden in a darkened room.

She mentioned 'brilliant teams' working on the illness. The interviewer mentioned Ron Davis, who she has previously interviewed, and Ros mentioned the Griffiths team, and Professor Tate in NZ. She said that a diagnostic test is on the way, but is not there yet. She noted that many illnesses don't have a definitive test and rely, as does CFS, on doctors using their expertise to evaluate against criteria.

She said that we are beginning to recognise the CFS term is just an umbrella term - there will be different illnesses because people have different sets of symptoms. And that there is certainly inflammation going on. She said that it is possible to see on MRIs the microglia sparkling away with inflammation which is probably why these people get very bad headaches.

There was coverage of risks for onset, which wasn't bad, concluding with the statement that it can occur at any age group and in any person, with the very fit being just as vulnerable as those that are not. This was an improvement on some of her statements in the last years suggesting there is an ME personality - so perhaps she has moved on that.

In the past she has mentioned that the Lightning Process helps some people; thankfully that wasn't mentioned. She said that no treatment helps everyone and its important to minimise stress, keep exercise to a minimum (which I think is an over-simplification), eat a good diet. But then came the bits I had the most problem with. She said that supplements like CoQ10and B12 are helpful but people should save their money on supplements unless there is very good evidence. (But there's no good evidence for either of the supplements she mentioned helping ME/CFS.) She said that there's a lot of evidence that medications can be useful in sub-groups - anti-viral agents, low dose naltrexone, neurological medications, extra salt and medications to help the body retain salt. She said it all with such authority and the interviewer was exceedingly impressed and praised her knowledge.

Vallings mentioned that Professor Tate is about to launch into some Long Covid research.

So, I think that was a positive media event, all things considered. It seems as though some of the criticism that Dr Vallings has received may have helped ensure that her messages are better. But I don't think she understands yet that her endorsement of treatments that don't have evidence has probably contributed to the scepticism that ME/CFS is viewed with by most doctors in NZ. The interview served usefully as an advertisement for her practice - without doubt she will have many people coming to see her from all over New Zealand, convinced that they will get treatments that will cure or at least substantially help them.

 

https://www.rnz.co.nz/news/national...mics-help-plan-world-s-recovery-from-pandemic

It could be worth highlighting to both men (and others on the panel) the need to address the burden of Long Covid the countries that have had high rates of Covid-19 will feel, so that they can push for research.

 

I heard a bit of this yesterday. I also had 'lots of complex feelings' about it.

The women talked about how dismissed they had felt by people in the medical system when advocating for their children with rare disorders. And how they did not want to be the annoying person who persistently challenges medical professionals, or who has more knowledge about a disorder than the medical professionals, but that that was what the situation demanded. Also, how they felt their role as a mother had been overwhelmed by the need to be a medical advocate, and to make arrangements for education and so many other things. They felt the work of advocating for their children had taken over all aspects of their lives.

So, yes, lots of similar experiences. And yet our disease isn't rare. And so many of us are sick and having to advocate for ourselves, and for our children. It made me feel I should be doing more to bring our situation to the attention of our government. And then despair a bit, for a number of reasons.

There's a parliamentary petition here. I'm going to support it.

(What I'd really like to see for our country is a centre of excellence in the diagnosis of multi-systemic diseases - a place where people with health problems that GPs can't quickly identify could go and be confident that all reasonable investigations would be done systematically, and that the results of all the investigations would be considered by a team of smart, knowledgeable people. The current process is so random and so exhausting and difficult, with some investigations repeated over and over again, while other investigations are never done.)

 

This. There is no alternative.