New Zealand: ANZMES

Copied post

At the ANZMES (Association of NZ ME Societies) annual general meeting yesterday, Dr Ros Vallings gave a research update. Dr Vallings is NZ's only physician focused on ME. She talked positively about the presentation of Dr Markku Partinen at this year's
Invest in ME C13 conference. I'll cover Dr Vallings' other takeaways from Dr Partinen's presentation elsewhere, but here I want to talk about singing and gargling treatments.

The Invest in ME summary of Dr Partinen's talk included the following question and answer:

I'm not sure if Dr Vallings has built her treatment recommendation on Dr Partinen's seemingly very lukewarm endorsement of these activities as useful for vagal stimulation (e.g. 'That is possible') or if she only used that as a start point and has done further research.

Regardless, Dr Vallings advised that people with ME should sing in the shower or, if we prefer, gargle. My memory of this advice was that the idea that this would result in improved sleep, specifically deep sleep, was presented with quite a lot of certainty. (Ros said that Dr Partinen was suggesting that people with ME do not get enough deep sleep.) I believe that there may be a video of her presentation in due course, so we will be able to check what exactly was said.

Now, singing in the shower and gargling seem like fairly harmless activities, and singing at least might even be quite pleasant. But certainly on first hearing, the idea that singing and gargling would be helpful for any ME symptoms via a vagal nerve stimulation mechanism sounded odd to me.

I have since googled 'vagal nerve stimulation singing and gargling' and I am amazed at the amount of information about this and the even greater amount of literature about vagal nerve stimulation for a great many bodily complaints. I didn't find anything that I found particularly credible to support the idea that singing in the shower and/or gargling improve ME or sleep or the sleep of people with ME.

What do you reckon? Have any of you tried a concerted program of either gargling or shower singing? Presumably even singing outside of the shower might count.

So, is there evidence that:
1. the vagus nerves of people with ME are understimulated?
2. that we are not getting enough deep sleep?
3. that singing and gargling do actually stimulate the vagus nerve? (I think there might be some evidence for this.)
4. that stimulating the vagus nerve results in deep sleep?

Is Dr Vallings alone in promoting shower singing and gargling as ME treatments operating via a vagus nerve stimulation mechanism or do other ME specialists support this?

Any corrections to any of the foregoing will be appreciated.


Discussion of the recommendations of ANZMES medical advisor here:Singing and gargling

 

Copied post

Yesterday the Association of New Zealand ME Societies (ANZMES) held its AGM. In addition to the AGM agenda, there were talks from: President Nicola Swain and Dr Ros Vallings, ANZMES' medical advisor.

The following are my highlights - apologies for any errors and omissions.

President's report

• 520 members (regional organisations are affiliated but memberships are separate - people have to hold two memberships to be members of both). More members are needed.
• One administrator is employed part-time.
• There was a meeting with the Minister of Health, David Clark, who was interested. There will be another meeting in 2019.
• There was a meeting with representatives from regional organisations in August.
• A review of information sheets is underway.
• Carey Foley (apologies if the spelling is wrong) left a bequest to fund consultations with suitable medical practitioners for those who can not afford it.
• Another significant bequest is in process.
• A primary school made a donation resulting from a range of fundraising efforts in support of a pupil with the illness
• Trying to maintain an active presence on social media

Treasurer's report

• The treasurer, who has just been in the role for a year, has moved the accounts onto the MYOB platform and has data stored on the cloud - a pretty significant step forward
• The Lotteries Commission funding has halved to $15,000 this year - there is a lot of competition from this funding source.
• Subs were kept at $40 per person per year (I think it might be $20 for beneficiaries)
• Ros Vallings commented that Work and Income can pay subs as a medical expense for beneficiaries.

Election of committee members
I believe that all current committee members were renewed in their roles and two extra members were added.

Name change
ANZMES agreed to change its name from Association of NZ Myalgic Encephalopathy Societies to Association of NZ Myalgic Encephalomyelitis Societies on the basis that 'there is now good evidence that there is inflammation in the brains of people with ME'.

Nicola Swain's presentation
Nicola presented on depression and anxiety in carers - this was a summary of work she has done as an associate professor at Otago University and relates primarily to carers of older people rather than specifically of PwME. She found significant levels of depression and anxiety in carers, higher than the average for NZ people.

One finding was that the mental health of carers was related to the level of distress and ill-health of the person they care for. Therefore, addressing the medical and pain control needs of the people being cared for can bring many benefits. I found this to be a good practical finding - rather than, or perhaps as well as, providing workshops on coping, one good strategy to improve the mental health of carers is to improve the well-being of the people they care for. The government is aware of the very difficult situation of many carers and is working on solutions - respite care provision is acknowledged as a major need.

Dr Ros Vallings' presentation - this was an update on research.
There are some threads related to Dr Vallings' presentation here, that I will add to as I make them.
https://www.s4me.info/threads/singing-and-gargling.6611/
https://www.s4me.info/threads/new-z...lity-type-of-people-with-me.6636/#post-120849

Professor Warren Tate attended. He chatted before and after the meeting and I just jotted down things later, so the information is a bit patchy. Prof Tate no longer has a large teaching obligation although he continues to educate medical students about ME. He has informed around 1800 future doctors now, so this should improve things as they move through their careers.

It sounds as though he is managing to continue with a research programme into ME, amongst other programmes into things like Alzheimers, with the help of some motivated researchers and a little funding. There have been some significant donations made by individuals who appreciate what they are doing.

Dr Eiren Sweetman, who earned her PhD last year will continue to work in the team. Dr Angus Mackay, who has ME himself, has been working with Professor Tate for some years. He mentioned his work is centred around a theory involving the hypothalamus and an inability to control stress.

The focus of the team in general seems to be on the analysis of cytokines and other molecules from blood samples taken before and after exertion as well as looking at abnormalities of muscle chemistry. They have a funded study on the utility of MitoQ as a treatment of ME. They have just had a paper accepted on chronic inflammation/microglial activation.

I invited Professor Tate to encourage his team to join us here to explain and discuss their work.

 

At the Association of New Zealand ME Societies (ANZMES)'s AGM on 10 November 2018, Dr Ros Vallings presented an ME Research Update. Dr Vallings is the Medical Advisor to ANZMES and is the only specialist ME doctor in New Zealand.

One of her slides focussed on Dr Markku Partinen's research, which he presented at the 2018 IiME conference last May. Dr Vallings praised his presentation and ideas. I've covered Dr Vallings interpretation of his idea that vagal nerve stimulation may be useful for people with ME in this Singing and Gargling thread.

Here is the Invest in ME C13 summary for Dr Partinen. His presentation sounds a lot more complex than what Ros presented.

(Autophilia means what you'd expect - self-love, narcissism, sexual attraction to oneself.)

Anyway, Dr Vallings didn't give us all that detail but she did tell us that people with ME are like dogs and sportspeople - we all sleep lightly, always in a state of alert. And that we have 'excitable personalities'.

One person in the audience did question the assertion that we have excitable personalities, saying that there was no good evidence that people with ME have any particular personality or that personality traits have any direct relationship with developing ME. Dr Vallings replied that there is lots of evidence and it's in line with what she sees in her clinic. The questioner noted that studies into the personality flaws of people with ME have many fundamental problems and that it is important to have good evidence before labelling all people with a particular personality type that might make it harder for them to advocate for themselves.

Many in the audience then supported Dr Vallings, saying that having an 'excitable personality' shouldn't be seen as a bad thing, that it just means that people with ME strive to achieve things. The Q and A session was moved on to the next question.

After the meeting, Dr Vallings was asked if she could say what the evidence was for people with ME having excitable personalities. She said that she sees a lot of people with ME and it is clear to her that they have this type of personality. She said that many of the people she sees are sportspeople and other high achievers. She said that the papers on this are quite old now and there hasn't been much done recently because everyone is now doing biomedical research.

She did not accept that there was any problem in labelling all people with ME with a personality type. She said that she herself would not have used the word 'excitable', she would say 'busy'. When it was put to her that, in that case, it is important to explain to people when she presents her slide that the word 'excitable' is not correct, she said, 'Oh, but it is right, I do agree with it'.

The questioner then asked Dr Vallings to please email the relevant studies.

A person nearby, a researcher into ME, admonished the questioner, saying 'don't be so sensitive'. He explained that he had a first class honours degree and had been playing sport at a high level and without doubt his personality and the way he lived his life had resulted in him developing ME.

minor edits to remove some editorialising.

Discussion here:New Zealand: Dr Vallings' view on the personality type of people with ME

 

Last year ANZMES held a one-day workshop for 'fieldworkers and leaders' from the regional support groups that are affiliated with ANZMES. A report on the content of the workshop has been circulated. Edit - the report was written last year by a participant, the quotes are taken from it.

The first speaker was a psychologist, Anna Friis, who focussed on mindfulness and compassion. Parking my scepticism about anything labelled 'mindfulness', I think this sounds helpful.

The next item also sounds useful:

Then there was a presentation by a physiotherapist, Erin Holland, answering the question “Is there a role for physiotherapy and exercise in ME?”

That sounded fairly unlikely to cause harm, but this was a worry.

Retraining the nervous system with the implication that the exercise will cure ME/CFS, albeit slowly? I think it's concerning that ANZMES is exposing people who advise patients, liaise with local health professionals and advocate for care of people with ME to this sort of stuff, with no evidence to support it.

Next up was the now President, George Connolly.

I find this a bit ironic, given that I have tried to communicate with George, no doubt on issues that he would view as evidence of me being a difficult person, and George's only response seems to be to ignore me. So, I'm not sure how much expertise he has in this area.

And finally there was a presentation by Dr Vallings on ME/CFS research from the IiME conference. This presented a very positive outlook. I think it would be easy for the regional representatives to come away from this thinking that research is well in hand and that there's little need for advocacy.

The next workshop for representatives from regional groups is coming up in September and it sounds as though the agenda is being planned now. I'll contact ANZMES to express my hope that any medical information the workshop gives is firmly evidence-based and that the situation with respect to research is realistic. I think David Tuller might be travelling in New Zealand at round about this time; it would be fantastic if he could make a presentation in the workshop. @dave30th @RoseE

 

It's great to have a representative of Anzmes here @Marylib.

@TiredSam has explained beautifully why unfounded optimism isn't a good way to support people with a long term problem.

ANZMES' overly-optimistic approach not only sets people with ME/CFS up for raised expectations and dashed hopes and, ultimately, despair. It also makes people complacent- if ME/CFS is going to be solved soon, there's less need to campaign for research, or for a better understanding of the illness by doctors and government, or for better care.

Professor Warren Tate recently shared the following: (words in square brackets are mine)

@Marylib, I wrote to Anzmes about this issue, expressing concern about the overly optimistic letter template that you were circulating for people to sign and send to MPs. I didn't get a reply.

 

Sticking my nose in here but I had a look at the ANMES site info under what is ME. In my opinion it isn’t frank enough about prognosis. It is possible to give out a more realistic message as shown by ME Association content on this issue. https://www.meassociation.org.uk/about-what-is-mecfs/prognosis-and-quality-of-life/#Part 1 People need to understand what they are dealing with. Unfortunately for me I didn’t see the ME Association content for a couple of years after diagnosis I was going on tha Action for ME info that implies improvement is normal. As a result I was trying to get back to work on a phased return when I would have been better advised to take several months off. I also probably should have put in for ill health retirement at least a year sooner than I did. I’m using my own example to show that lack of frankness however well meaning has direct consequences for people with ME especially the newly diagnosed.

ETA realised I hadn’t tagged @Marylib