News from Aotearoa/New Zealand and the Pacific Islands

Article in the Wireless 'The Children Left Bedbound by Fatigue' by Felicity Monk
http://thewireless.co.nz/articles/the-children-left-bed-bound-by-fatigue

A sympathetic and generally accurate article, a good job done by the author who, by the sounds of it, has only fairly recently come to know about the illness, with friends being diagnosed with it. No suggestion of faulty psychology as a cause.

It does promote what I assume is the Tauranga course we discussed above.

The article was discussed on Radio New Zealand today, covering the same ground. The host was also sympathetic, commenting along the lines of 'anyone who has had glandular fever will know how hard it is to get up, imagine having that feeling all the time'. The programme isn't loaded yet, but it will be accessible from this page.

http://www.radionz.co.nz/national/programmes/afternoons

Edit: The host later said that there was lots of feedback on the item. He said lots of people were recommending natural approaches (cutting out sugar, avoiding gluten etc) although others were saying that nothing works. He said 'well you would try anything, wouldn't you, if you were stuck in bed and you'd been to the doctors and they were no help'.

Another edit: The host later said again that there had been lots of feedback (he said approximately 'lots of feedback as you would expect for something so dreadful and it is so rarely discussed'). He quoted someone promoting the ME carers Facebook page which we have mentioned earlier in the thread. It was going so well...

Then he read out a message from someone recommending the Lightning Process and Mel of Empowerment Therapies - this person was immediately cured by the Lightning Process and they had tried everything before it with no success. Groan. The host noted that he was not endorsing the Lightning Process, and then mentioned it again.
 
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Which leads us on to this one:

http://www.gogreenexpo.co.nz/christchurch-speakers-workshops/#speakers
There is a seminar on Sunday 12th August from Seleno Health on 'Beating Chronic Fatigue - A True Story'.

This will be presented by Corin Storkey who we have discussed before when he made a presentation to Otago University students. The common story of someone who was sick, perhaps with ME, and became well and now is an evangelist for various potions that he is sure will fix us all.

Wholesale-Maca-400x635.jpg
 
Hutan said:
Groan
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Yes.
Fortunately it looks like nobody in my circle listens to National Radio in the afternoons, at least this time round I didn't get a flood of well-meaning but unhelpful texts and emails asking have you tried this or that? But I always worry about the newly-diagnosed or less well-informed falling into this trap and ending up getting worse.

I actually have tried Maca, though not on Seleno Health's recommendation but on a friend's who is mad about Peru and got hooked on the taste. It does taste quite nice. Hasn't made any difference to my ME though.
 
There was a follow up segment on Radio New Zealand today because there was so much response to yesterday's discussion on ME. The host interviewed Ros Vallings. Ros is the only doctor specialising in ME in NZ. The item will be available from the same link as I gave above.

Ros did very well in the fairly short segment. The host said that someone had said that this is 'one of the least socially acceptable diseases' which he found sad. Ros felt that this was a little bit over the top. Generally, she was quite upbeat about things. She said that knowledge of the illness is improving due to research being done around the world including at a number of prestigious universities. She did acknowledge that a lot of GPs aren't conversant with the illness but that they can't know everything about every illness. She suggested that a lot of doctors around New Zealand do deal with it very well.

Ros prefers the term CFS/ME. She gave a good explanation of symptoms and talked briefly about real physical differences. She suggested that the immune system stays in overdrive after, normally, a virus.

Regarding treatment she said that there is no quick fix cure and treatment is focused on providing the body with the best chance to recover. She did stress that exercise is a problem and has to be approached very carefully and gently. She said that 20 to 30% of people recover to the point where they can lead a normal life, although acknowledged the difficulty around making statements on recovery.

Asked about acupuncture, she said that some patients report that it helps while others say that it makes them worse. She felt that it was important to find an acupuncture practitioner who is well educated about the illness. Hmm.

Asked about the Lightning Process, Ros was more accepting of it than I would have liked. She said that it is a psychologically based treatment and can help some people if they have underlying psychological distress. However, no psychological therapy can actually cure this illness. There was absolutely no talk about GET or CBT; I think the approach here in NZ is much more of relatively benign neglect.

Ros has endorsed the 'Towards Wellness' course in Tauranga. She feels that it educates and validates people with the illness.

Asked about the greatest needs, Ros said research and funding for research. And education of people generally.

Again discussing the scepticism that doctors and family and friends can have, Ros noted that, if you go back a good few years MS was regarded as psychological until there was better understanding of the physiology. She said 'We are just lagging behind the times with this illness.

So, all in all, a pretty positive and useful interview on New Zealand's national radio.
 
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Well, I mostly tried to just report.

Hutan said:
Asked about the Lightning Process, Ros was more accepting of it than I would have liked.
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But just to interpret that, that sentence of mine actually means 'nooo, it is not right for a doctor regarded as the leading (and only) ME clinician in New Zealand to not dismiss quackery targeting vulnerable people or seemingly be unaware of the politics specifically around the Lightning Process. It is not 'CFS/ME'. Things are nowhere near good enough. One elderly GP working a couple of days a week to care for perhaps 20,000 people with ME spread across NZ (which area-wise is the same size as the UK) is not enough. It is terrible that there is no specialist to care for me and my son or to conduct a proper investigation of differential diagnoses, with enough detailed knowledge of relevant fields to fully understand the latest findings.!'

But CBT and GET aren't being forced on us here. And Ros did make it very clear that exercise is problematic and that the illness is not psychological. So for that I am grateful; it could have been much worse.
 
The power of celebrity. A formerly uninterested member of my wider family has been converted by a short interview on breakfast TV. All it took was a former rugby league star talking about his experience with ME.

https://www.tvnz.co.nz/shows/breakfast/episodes/s2018-e155

28/8/18, starts about 1:19. Can only be watched for another 5 days, not sure if accessible from outside NZ.

Just watched it myself. It's ok if predictably superficial given the lightweight programme it was on. Minor niggles like “chronic fatigue” being thrown about interchangeably with “ME” and there's a bit too much focus for my liking on the high-performing personality. However, he made it quite clear that for all the assorted nasty injuries he's had in his sports career, ME was by far the worst thing he'd ever been through and it took him 14 years to sort of recover so presented ME as a serious and all too real condition.

ETA: The sports celebrity interviewed was Richie Barnett.
 
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Hutan said:
Ros Vallings
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(not sure if this has been posted elsewhere)
From ME Auckland FB: https://www.facebook.com/support4me/?rc=p
We are pleased to announce that Dr Ros Vallings will be speaking at the ME Auckland AGM! All are welcome to attend - details below
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:)

Dr Vallings will be holding an "ask me anything" session, whereby you can submit a question for her to answer.

Got a question for Dr Vallings? We'd love to hear it! Please post your question in the comments below, or email to manager@meauckland.org.nz so we can submit it on your behalf.

The session will be recorded and we will publish the video including her answers.

Dr Ros Vallings is widely regarded as New Zealand's leading ME/CFS expert. You can find out more about Ros here: http://www.drvallings.co.nz/about-ros.html

Aside from hearing Dr Vallings speak, the ME Auckland AGM is an opportunity to learn more about what our organisation has been doing for people with ME/CFS and/or FM over the last year, meet other members of the community and enjoy some tasty nibbles!

All are welcome
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:)

Date: Saturday, 6th October 2018
Time: 1.30pm to 3.00pm
Venue: Sandringham Community Centre Mainhall, 18-20 Kitchener Rd, Sandringham, Auckland , 1025
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maybe a chance to ask some questions(?)
 
Thanks @Sly Saint. Just yesterday I was reading Ros Vallings' 'Handouts' and feeling quite sad. These are the same mixture of good sense with a sprinkling of unsubstantiated BPS prejudice, unreplicated research results from tiny studies and patient blaming as her book for young people is. There is a real lack of rigour in the assertions she makes, for example, these quotes are from the first five paragraphs of her handout on exercise:

We know that in any illness total inactivity leads to muscle weakness. Even one day in bed with flu can turn the muscles into a jelly-like state.
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as an argument for why people with ME need to do activity.

It has been shown in research that in CFS there is an imbalance between the short acting and endurance fibres in the muscles, with a preponderance of short activity fibres, which helps to explain the inability to sustain exercise.
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We know that people who try and exercise too much as part of their rehabilitation in CFS run a serious risk of relapse or long term continuation of their illness. There is often an unrealistic striving for excellence.
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Many people with this illness are caught in the downward spiral of being told to exercise in order to get better, but human nature being what it is, tend to overexercise and risk relapse. There is a tendency to get caught in the “crash and burn” approach. This means feeling a bit better, going at exercise like “a bull at a gate” and then needing a week in bed to recover.
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This is coming from the only doctor in the whole country who is recognised as having expertise in CFS. I shall submit some questions.
 
Yes, I've always been a bit confused by Ros' statements, too. On the one hand she always mentions physiological underpinnings (more or less well researched) and how severe the illness can be. On the other hand she often expresses herself in a way that leaves you with an impression of all patients being the high-achiever types and that stress reduction is a very important factor in recovery. I can't make up my mind if that's just bad communication or reflects her actual views. The high-achiever angle may be a well-meaning attempt to counter the malingerer stereotype and the stress reduction angle may come through so strongly simply because there's not much else on offer.

Regarding her exercise handout, it's not perfect – all that stress reduction stuff again - but I don't find it too bad. For severe patients she recommends gentle range-of-motion type “exercise”. She stresses pacing and that any activity must be within the individual patient's limits i.e. if it results in a crash it's too much. And she recommends that any increase in exercise a) is for already recovering patients and b) must be approached exceedingly slowly and not cause any crashes.

The last bit brings us to the topic of recovering patients and on this one Ros does annoy me. Even while saying some patients do not recover she somehow always gives the impression that many do. I even dimly recall her giving some surprisingly good figures in the media somewhere but can't recall what they were or where I read/heard them. Maybe something to query @Hutan ?

I haven't read the other handouts so can't comment on them.

I was diagnosed by Ros and the thing she stressed most was the importance of pacing and avoiding crashes. She also gave me some printed info which I've thrown out now but at the time it struck me as being written with the classical image of the post-mono ME teenager in mind: EBV, failure to recover, severe and bedridden for a few months or years, then very slowly progressing back to (almost) full health. Again, possibly well-intentioned, wanting to give hope to parents and their children, but how many teenagers really fit that description?
 
Even one day in bed with flu can turn the muscles into a jelly-like state.
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Yeah, that's the flu itself, not the lying in bed. Doink!

I never had trouble starting whatever I had done before a flu/infection when the flu was gone. I was not profoundly more unfit after it (unless the infection took 3 weeks or so). I assume I am not the exception.
It is correct that the muscle mass swiftly starts to slightly decrease if there is no "impulse", but this is far from muscle weakness or jelly muscles.
 
The Canterbury ME/CFS Group is hosting a visit by Ros Vallings who will be giving an update on research:

31st October 2018 (Wednesday)
Time: 1.30 pm
Venue: Abberley Park Hall,
Address: 55 Abberley Crescent, St Albans Christchurch

I hope to attend.

There will be events in Rotorua and Dunedin over the next month too. For more information see:

https://anzmes.org.nz/dr-ros-vallings-itinerary-for-the-next-few-months/
 
Ravn said:
Do report back if you can.
And if you get a chance to ask, I would be interested to hear if Ros knows of any younger doctors coming through with a special interest in ME who may one day be able to fill her place.
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That is something that has worried me for some years now..
what do we do when she is retired and we can’t get the prescriptions we need?
 
Hutan said:
The Canterbury ME/CFS Group is hosting a visit by Ros Vallings who will be giving an update on research:
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This was as frustrating as I thought it might be. My comments about Ros' handouts above sum up my view on her presentation today too.
Hutan said:
These are the same mixture of good sense with a sprinkling of unsubstantiated BPS prejudice, unreplicated research results from tiny studies and patient blaming as her book for young people is. There is a real lack of rigour in the assertions she makes
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In answer to a question about how to explain the illness to others, Ros said
'You need to learn about your illness so that when you talk to people it comes across as real genuine knowledge and not just something you are making up'.
I feel Ros follows this advice and, undoubtedly in a desire to make patients feel better, fills in any gaps of knowledge with statements that might or mightn't be true, delivered with certainty.

To those of you not from New Zealand who might be wondering why the beliefs of one doctor matter, Ros is the ME/CFS expert in New Zealand. I understand that she is advising a major District Health Board on their treatment guidelines.

Below are the things Ros said that I found most interesting - some are helpful, some are questionable. There was a lot of the stuff that your mother tells you - eat a balanced diet, no screen use before bed time and so on which I'll spare you. Admittedly, it must be hard to cater for groups that have people newly diagnosed and people who have had the illness for 20 years.
  • Griffiths University are probably the furtherest along in understanding the illness. They almost have a blood test ready.
  • The genes that make people vulnerable to the illness have been identified, although it's not a strongly inheritable disease. The same genes causing the illness are also linked to polycystic ovary syndrome, irritable bowel syndrome and migraine.
  • The condition is due to persistent overactivity of the immune system and brain inflammation
  • Symptoms often mimic the initial illness
  • It's important to review things if symptoms change or become more severe
  • You should get annual blood tests done
  • Promotes the idea of cautious graded increases in exercise without calling it GET and noting 'never push hard'. 'People find, if they build up, they feel a bit better and then they go and play tennis and crash'. She showed a picture of a tortoise, suggesting this is the way to do rehabilitation, 'slow and steady gets there in the end'.
  • B12 injections can help with cognitive problems (one a week for six weeks) - oral B2 isn't absorbed well enough. (Dr Lapp is doing a study on B12 injections)
  • Ritalin can be helpful for cognitive problems
  • Anti-virals will sometimes help - try if the illness has been triggered by a herpes virus
  • Garlic is a powerful anti-viral - won't help ME but can help if you have a virus or will be going somewhere where you might catch a virus
  • CoQ10 occasionally helps with myalgia (from Nancy Klimas)
  • Vitamin D is very important
  • Pat a pet
  • A pinch of salt every two hours for orthostatic intolerance.
  • Anti-inflammatory medicines can help - ibuprofen, voltarin, paracetamol, aspirin
  • Fibromyalgia is a symptom not a disease in its own right. The person feels more pain than they ought to. It's an exaggeration of pain signals. Michael Butler in Auckland has done a lot of research that helps us understand the mechanism of fibromyalgia. Rest, warmth and massage are useful. Pain creates stress which creates more pain - try to reduce stress levels. Gabapentin and pregabalin can be helpful, build up the dose slowly.
  • No special diet helps, although avoid food you are intolerant to
  • Dealing with sleep issues should be top of the list. Get daylight exposure. Avoid naps. Aim is to normalise sleep patterns.
  • Medication for sleep includes tricyclics, melatonin, phenergen. Avoid benzodiazepines.
  • 'All CFS patients can experience a better quality of life with compassionate care and a multi-disciplinary approach'. She elaborated by saying 'you might have a physio giving you massage, and a dentist...'.
  • Ros talked with a group of Green Prescription people in Christchurch this morning. They set up personalised 8 week programs with advice on diet and with yoga and tai chi. She felt that this could be very helpful.
  • Was very positive about the Tauranga program.
  • Practice regular relaxation - deep breathing, meditation, mindfulness
  • Most psychiatrists are now very good with the illness. They have moved right away from 'it's all in your mind' and are quite clued up.
  • Professor Tate now gives lectures to all 3rd and 4th year medical students at Otago University (one of the two universities in NZ producing doctors). This is having a big impact. Young doctors have much better knowledge now.
I tried to ask a question. I had quite a list :D but did not get picked.
 
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Hmmmm..... thanks for the update Hutan!

I find it interesting that Ros, who attends most of the conferences around the world - IIME etc - still expresses such an odd mixture of facts and unsubstantiated beliefs. If I don’t see her occasionally I can’t get my prescription for LDN - which seems to help me (n=1). But I am also very frustrated by the situation here, and I don’t feel that we have a really good education option for other doctors out there working.
Re the Tauranga programme - I haven’t tried it and don’t intend to.....
 
Thanks for the summary @Hutan. Sounds like it was vintage Ros.
Hutan said:
Griffiths University are probably the furtherest along in understanding the illness. They almost have a blood test ready.
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Ros told me the very same thing more than 2 years ago.
Hutan said:
Professor Tate now gives lectures to all 3rd and 4th year medical students at Otago University (one of the two universities in NZ producing doctors). This is having a big impact. Young doctors have much better knowledge now.
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Here's hoping (though I don't have much hope of meeting any of them anytime soon, our local rural practice seems to attract GPs at the other end of their careers).
 
Hutan said:
Most psychiatrists are now very good with the illness. They have moved right away from 'it's all in your mind' and are quite clued up.
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N=1 again, but I have a friend in NZ who has actually found a psych (psychiatrist or psychologist I can't quite remember at the moment) who has been supportive and respectful of her ME, and who hasn't treated as a psych issue. So they may be like gold dust but it seems they are out there.

As for some of the other comments, hmm is all I'll say. My NZ friend has in the past said that Ros, in the main, is quite good, but also has her iffy moments as well, much like Hutan says.
 
Andy said:
N=1 again, but I have a friend in NZ who has actually found a psych (psychiatrist or psychologist I can't quite remember at the moment) who has been supportive and respectful of her ME, and who hasn't treated as a psych issue. So they may be like gold dust but it seems they are out there.

As for some of the other comments, hmm is all I'll say. My NZ friend has in the past said that Ros, in the main, is quite good, but also has her iffy moments as well, much like Hutan says.
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Isn't Carolyn Wilshire in New Zealand? She might have made some positive impact :)
 
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