News from Aotearoa/New Zealand and the Pacific Islands

[T&O]

I hear you too T&O. When so many people are clearly telling us we are just imagining our illness, it is not surprising that we are grateful to the first person who is caring and seems to have knowledge.

I think Ros Vallings and ANZMES materially set back the understanding of ME/CFS in New Zealand. Vallings hardened views that ME/CFS is a psychosomatic condition in a number of ways. Hopefully she no longer directly influences things, but unfortunately the harm she caused is going to go on for a long time yet. We aren't building on her work. Instead we are having to try to undo the ideas that she gave to health professionals and people with ME/CFS and their families. And it's really hard.


Vallings, ANZMES and others have contributed to us now not being much further ahead in our understanding of ME/CFS than we were 20 or 30 years ago. People are still chasing the supplement or the practice that will be the key to some small improvement, pretty much the same ones that were being tried all those years ago.

Anyway... I'm glad that something she told you helped you.

Wow, not my experience.
(After checking over various RV suggested eating a little salt on a cracker say for morning tea and/or afternoon tea as it appeared that our ME bodies didnt process salt correctly… whether or not you agree ,how is that psychosomatic ?).My then family and I were never led to think that.
I was actually searching out salty foods at the time without knowing why …

My point with the social worker was that they went from thinking it was a psychological “lazy” illness to understanding it was a serious and debilitating illness that was only just beginning to be investigated.
Perhaps my befuddled struggling brain has misunderstood some things here.
-Dare I ask what “ways”?

Go ahead ,slam dunk me !
(-Im obviously not a health professional so assume youve had alot more to deal with Hutan).

While I too detest that old nugget of not being taken seriously (yes, ongoing within my own extended family) , can we blame those who thought the earth was flat when they hadnt the knowledge, means or abilities of today ?
Doesnt history change as more is understood ?.

 

[T&O]

Actually, in hinsight, dont worry Hutan.
At some point when I feel more up to it Ill search out others experiences of Vallings here … getting shaky so need to call it quits for a while.
Apologies if Ive unwittingly stood on toes (or worse) here !

 

[Sean]

getting shaky so need to call it quits for a while.
Apologies if Ive unwittingly stood on toes (or worse) here !

Welcome to the club!

 

[Hutan]

Definitely no toes stood on. I'll give you just a quick answer, from my perspective of course.

One issue is that Ros Vallings was a bit ambivalent about a psychosomatic component of ME/CFS. For example, when talking about the Lightning Process, she would say that it wouldn't cure people but it could still help. She talked about an ME/CFS personality, noting that people with ME/CFS tended to be more emotional, over-busy and worried about achieving.

This is from her website, and it sounds a lot like pacing up. The website includes advice related to Covid-19, so the advice below was still being endorsed by her at that time.

Abnormalities in muscle chemistry means that too much exercise too soon will usually lead to relapse, (post-exertional malaise) while resting all day will innevitably result in muscle weakness. The right balance therefore is vital. A simple exercise plan should be adhered to with a very gradual build up in fitness. A sensible plan should include some movement, however minimal, of each joint and muscle each day. As your health improves a short walk could be included in the day's activities. Initially a few paces could be undertaken, increasing by say 5 paces a day until you are able to walk to the local dairy or beach. Remember you need enough energy in reserve to return home. If symptoms worsen at any time, the exercise programme will need to be adjusted. It is a good idea to chart progress as this is one way of measuring recovery over a period of time, which can be very encouraging.

A variety of exercise is important to avoid boredom and loss of motivation. Swimming, walking, yoga, Tai Chi and exercycling are all suitable activities which can be monitored and increased very slowly.

As you gradually recover from this disabling condition and begin to feel normal and healthy again, you will feel like a butterfly emerging from a crysalis - renewed, refreshed and full of energy. You will have learnt a great deal and be ready to face the future with positivity and inner strength.

But, the biggest issue was that she did not present ME/CFS in a way that would help it be taken seriously. She seemed to believe all sorts of theories that were very unlikely to be true, passing them on to her patients and presenting them to other doctors. Her patients would lose credibility when they returned home to their own GP and talked about the suggested approaches. For example, she recommended singing in the shower and humming to stimulate the vagus nerve. She promoted anti-depressants as CFS treatments. One of her core professional practices was hypnotherapy. Instead of building up a network of doctors intrigued by the illness and working to systematically conduct trials of the treatments she promoted, I think many reasonable doctors were probably put off having anything to do with ME/CFS. I heard her talk one time, and certainly, had I been a doctor and coming to the topic fresh, I would have been put off.

We have some threads about Dr Vallings. If you are interested, they are there to read.

 

[SNT Gatchaman]

Infantilising nonsense.

 

[T&O]

Definitely no toes stood on. I'll give you just a quick answer, from my perspective of course.

One issue is that Ros Vallings was a bit ambivalent about a psychosomatic component of ME/CFS. For example, when talking about the Lightning Process, she would say that it wouldn't cure people but it could still help. She talked about an ME/CFS personality, noting that people with ME/CFS tended to be more emotional, over-busy and worried about achieving.

This is from her website, and it sounds a lot like pacing up. The website includes advice related to Covid-19, so the advice below was still being endorsed by her at that time.



But, the biggest issue was that she did not present ME/CFS in a way that would help it be taken seriously. She seemed to believe all sorts of theories that were very unlikely to be true, passing them on to her patients and presenting them to other doctors. Her patients would lose credibility when they returned home to their own GP and talked about the suggested approaches. For example, she recommended singing in the shower and humming to stimulate the vagus nerve. She promoted anti-depressants as CFS treatments. One of her core professional practices was hypnotherapy. Instead of building up a network of doctors intrigued by the illness and working to systematically conduct trials of the treatments she promoted, I think many reasonable doctors were probably put off having anything to do with ME/CFS. I heard her talk one time, and certainly, had I been a doctor and coming to the topic fresh, I would have been put off.

We have some threads about Dr Vallings. If you are interested, they are there to read.

Thanks Hutan, … buggar !

 

[Trish]

Gosh that's bad. I had picked up over the years that there were some problems with Vallings, despite her being treated by some ME/CFS organisations and clinicians as an international expert. That section Hutan quoted on pacing up and recovery is such a damaging fairy story.

 

[T&O]

Gosh that's bad. I had picked up over the years that there were some problems with Vallings, despite her being treated by some ME/CFS organisations and clinicians as an international expert. That section Hutan quoted on pacing up and recovery is such a damaging fairy story.

Yeah, seriously awful.
(while I appreciate the heads up its personally a really tough read …Ill just retreat back into my hole now).