Ros Vallings (NZ) to give series of talks in Ireland - May 2019

Sly Saint

Sly Saint

Senior Member (Voting Rights)
"Dr. Rosamund Vallings Talks
The Irish ME/CFS Association is pleased to announce that it has arranged for Dr Ros Vallings, a leading international ME expert from New Zealand, to give 5 ME/Chronic Fatigue Syndrome talks in Ireland this May. The talks will include questions-and-answers sessions."

Content:

The main item is a talk by Dr Ros Vallings entitled "Overview of Chronic Fatigue Syndrome/ME". Dr Vallings will also introduce two video clips aimed at GPs by two world-renowned ME/CFS paediatricians on severe ME/CFS and the diagnosis and management of paediatric ME/CFS. The event will also include two 20 minute Q&A sessions with Dr Vallings and a break for refreshments. It will finish at noon.

About the speaker: Dr Ros Vallings MNZM, MB BS is a GP who is recognised as the leading expert on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) in New Zealand. She has seen thousands of patients with ME/CFS and related conditions in her practice over the last 40 years and regularly gives educational talks to medical professionals. She was the recipient of the Nelson Ganz Award for Outstanding Clinician by the International Association for CFS/ME (2016). Dr Vallings is the author of three books on ME/CFS and co-author of the IACFS/ME physicians' primer.
Click to expand...

full details of all talks here:
http://irishmecfs.org/events.html#drvallings2019
 
Understanding the reality of chronic fatigue


article in Limerick Post
New Zeland doctor Ros Vallings, who is a world expert on ME/CFS, will address some of the symptoms, diagnosis and management of the condition at a public talk in the South Court Hotel, Raheen on Monday, May 20.

Vera Kindlon, Chairperson of the Irish ME/CFS Association said: “We are lucky to have a recognised world expert on the condition come to speak with us to share her knowledge. We hope patients across the country will benefit from the wealth of her experience”.

Sarah Warde also is looking forward to meeting Dr Vallings on May 20: “I’ve gotten a lot of help from her over the years. She’s brilliant.”

The event, which is part of ME Awareness Month, gets underway at 11.30am.
Click to expand...

https://www.limerickpost.ie/2019/05/20/understanding-the-reality-of-chronic-fatigue/

sigh, when will they stop using headlines like this.
 
Sly Saint said:
Understanding the reality of chronic fatigue
...
sigh, when will they stop using headlines like this.
Click to expand...
Almost seems like a milestone (one of many) that advocacy efforts should set. Tightly focus on getting headline writers getting to consistently get this right. If we could get them to understand why it is important, then that would have significant pull-through effects I would think.

In fact makes me wonder if a good advocacy strategy might be one of "incremental improvement". Setting a series of small but important goals to strive for, rather than striving for too many big hits. Smaller successes can be easier - and faster - to achieve, and pave the way for more ... after half a dozen or so you can end up with a big success.
 
I went to see her when I first became ill. I took nothing from it only to eat salty foods. M. E can be progressive, to say it is not is ridiculous and again minimizes the magnitude of the illness. She did not speak about severe M.E in her talk either. I wasn't impressed.
 
Andy said:
I've quickly scanned through the slides and the one thing that really stood out to me was

on slide 26. Now there obviously could be additional context that I won't be aware of just from the slide but that seems quite a bold statement to make to me.
Click to expand...
A ridiculous statement.
 
My 2 cents:

I've said to people before that it's generally not progressive, once people are diagnosed; can reduce their workload and responsibilities; are given plenty of practical support including, if necessary from State agencies; and are able to live within their energy envelope. I do think that if someone is deteriorating, these things should be looked at.

I don't consider it a progressive disease like motor neuron disease.

People can be struggling to deal with the level of impairment they have; giving too negative a prognosis might lead to depression and/or anxiety and/or possibly even in some cases suicide.
The odd partner might even leave someone if they think it is a progressive condition.
 
Tom Kindlon said:
My 2 cents:

I've said to people before that it's generally not progressive, once people are diagnosed; can reduce their workload and responsibilities; are given plenty of practical support including, if necessary from State agencies; and are able to live within their energy envelope. I do think that if someone is deteriorating, these things should be looked at.

I don't consider it a progressive disease like motor neuron disease.

People can be struggling to deal with the level of impairment they have; giving too negative a prognosis might lead to depression and/or anxiety and/or possibly even in some cases suicide.
The odd partner might even leave someone if they think it is a progressive condition.
Click to expand...
An interesting view, @Tom Kindlon, and one very hard to research, since so few of us, I suspect, are able to achieve such a high level of ideal care, and stay completely within their energy envelope. Is there research evidence? Is there data on what proportion continue to decline despite best care?
 
Tom Kindlon said:
I've said to people before that it's generally not progressive, once people are diagnosed; can reduce their workload and responsibilities; are given plenty of practical support including, if necessary from State agencies; and are able to live within their energy envelope. I do think that if someone is deteriorating, these things should be looked at.
Click to expand...
And what percentage of people are going to be able to do all of these things? Wouldn't it be more accurate to say that, under less than ideal circumstances, there is a large chance that ME will be progressive, but the closer you can get to an ideal circumstance, the smaller chance that becomes.

Tom Kindlon said:
I don't consider it a progressive disease like motor neuron disease.
Click to expand...
Yet people, as best we know, still die from ME. I'm not convinced this comparison is that useful.

Tom Kindlon said:
People can be struggling to deal with the level of impairment they have; giving too negative a prognosis might lead to depression and/or anxiety and/or possibly even in some cases suicide.
The odd partner might even leave someone if they think it is a progressive condition.
Click to expand...
And personally I'd rewrite that as "People can be struggling to deal with the level of impairment they have; giving too positive a prognosis might lead to depression and/or anxiety and/or possibly even in some cases suicide if reality, for an individual, doesn't match the false hope they have been given. The odd partner might even leave someone if they don't think it can be a progressive condition."
 
I've never looked closely at this, but I was under the impression that the research available indicated that people were more likely to report some improvement over time than decline (though a lot of people not showing any substantial improvement and a lot reporting some decline).

Having said that, there are other things I've seen from Vallings that don't look good to me.
 
You must log in or register to reply here.
Back
Top Bottom