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Ireland: Dr. Vallings will give talks in Galway (May 24), Limerick (May 26) & Dublin (May 28)

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Tom Kindlon

Senior Member
Messages
1,734
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 3 Irish ME/Chronic Fatigue Syndrome talks this May. The talks will include questions-and-answers sessions.

IMG_4955.jpg Dr Ros Vallings brings a wealth of clinical experience from 50 (!) years dealing with ME patients. She is also right up-to-date with what happens internationally. She attends the Invest in ME conference each year and the IACFS/ME conferences that are on every 2 years including the one that just took place in Florida last October.

She has written three books on the subject in recent years: (i) Chronic Fatigue Syndrome M.E. Symptoms, Diagnosis, Management (352 pages); (ii) Managing ME/CFS A Guide for Young People (144 pages) and (iii) 'The Essential Guide to CFS/ME'.

Admission is E5, on the door, to help towards the costs of organising these three meetings, and Dr. Vallings' trip

- Wednesday May 24: 7:30 PM Maldron Hotel Sandy Road Galway (not to be confused with the Maldron Hotel in Oranmore) http://www.maldronhotelsandyroadgalway.com/ Tel (for hotel): 091 513200. Free parking.

- Friday, May 26: 11:30 AM Great National South Court Hotel, Raheen Roundabout, Limerick http://www.southcourthotel.com/ 061 487487. 400 free car parking spaces

- Sunday, May 28: 2:30 PM The Maldron Hotel Dublin Airport http://www.maldronhoteldublinairport.com/ 01 808 0500 Car parking: E5 (get your ticket ratified at the reception). Linda Tannenbaum, CEO/President of the Open Medicine Foundation (link to: https://www.omf.ngo/ ), is also speaking at the Dublin meeting.

Dr Vallings has said she will give a "general talk on the illness e.g. underlying possible causes, diagnosis, update on research, management options etc."


Copies of three books on ME/Chronic Fatigue Syndrome by Dr Vallings will be sold.


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taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
She's a very lovely lady who cares about people but I personally do not recommend her book "Chronic Fatigue Syndrome, Symptoms, Diagnoses and Management" as some parts of her book upset me as I felt some of the wording played down our illness in places and as a severe ME patient I couldnt relate to her book.

I got sent it to do a book review for this website but the whole thing was complicated as she once was very lovely to me but I really couldnt recommend this book as parts of it bothered me (which stressed me and I couldnt get it together to get the book review done). It would be great in parts but then be bad in other bits, the few bad bits in it destroyed it for me.

eg if Im remembering correctly she did things like eg with recovery - made it sound like most recover instead of really telling it how it is. and things like this really played the illness down. I think such a book should of given the facts even if harsh. (It was like at times she was talking of CFS rather then ME I guess)

(I just went looking for the book as I was going to quote a couple of parts I didnt like but unfortunately cant find it ..and have a headache so cant look more)
 
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Orla

Orla

Senior Member
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708
Location
Ireland
Hi @taniaaust1 I read her main book ages ago, but I'm afraid to say I can't really remember it now. She has a new shorter book now which looks interesting, but I haven't yet read it so cannot comment on it.

I do know the sort of thing you are talking about though, when books or articles on ME talk about recovery or prognosis. I don't really like the word recovery to be used at all really, as remission would be better, as there seems to be always a risk of relapse.

I know I didn't really like a booklet Afme had on "pacing" (though it was sort of graded activity to some extent) as it kept talking in a way that implied you would get better if you followed the programme (and it didn't make clear you might reach a low plateau). It bothers me more when it is done along with "selling" any treatment or programme, as we all know there are no guarantees.

But even in general it can be an issue. It is difficult to pitch things to people at different stages of the illness. For new people, even the thought of being sick a few months might feel like too much to handle, so I can see an argument there for not really focusing much on the long-term and being a bit optimistic with them. Sometimes people will reject the information outright if it freaks them out too much, or if they see it as too "negative".

But on the other hand it is worth warning people they might be sick for a long-time, and at some point they will need to start making plans with this eventuality in mind (probably once they have been sick for a few years).

And it is important people understand that there is a risk of relapse, and also that some people do not recover no matter what they do (I'd love to see a bit more understanding of this amongst some ME patients, and maybe more help for the cause from people who get a lot better. They could do a lot in terms of things like fundraising for research, by even just helping out a few hours a year).

Anyway I am rambling a bit. I know the sort of thing you are talking about. I know when I speak to new people I give a somewhat optimistic outlook, as I know the best chance of getting a lot better seems to be in the first few years (I do warn them not to try to push through the exhaustion). I try to avoid mentioning how long I have been sick, as I don't want to freak them out, but if they ask me outright about it I don't lie to them.

I wish there was a better way of predicting prognosis in an individual patient than guessing, which is what we are left with at the moment.
 
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daisybell

Senior Member
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1,613
Location
New Zealand
I think the book would be good for people who are new to this illness - and perhaps aren't severely affected. For most of us, it won't tell us anything we don't already know.... I have a copy, and I read it when I got it but I haven't referred to it since. It's kind of a beginner's guide to ME/CFS.
 
BurnA

BurnA

Senior Member
Messages
2,087
daisybell said:
I think the book would be good for people who are new to this illness - and perhaps aren't severely affected. For most of us, it won't tell us anything we don't already know....
Click to expand...

That's my impression too.
I am going to her talk in a few hours and I don't expect to hear anything I don't know.
But Linda Tanenbaum will be there too so I am looking forward to hearing what she might say.
 
Orla

Orla

Senior Member
Messages
708
Location
Ireland
The book being discussed is a few years old. The newer books will be there also (i havent read either of them but the pocket guide looks interesting. Easy to use layout). I found there were a few new things in the talk for me, and parts where i had renewed interest in due to an old symptom going haywire. I was really not expecting to get anything new out of it so that was nice.
 
BurnA

BurnA

Senior Member
Messages
2,087
so I am back from the talk :)

The OMF seem excited about suramin. I was surprised how much Linda mentioned it, seeing as it had just come out, and Linda has been travelling since then.
She didn't mention specifics but I got the impression they have been looking at it.

Maybe Ron will update more next week at iime conference.

I got the opportunity to ask Linda about the diagnostic chip Ron has been working on, she thinks they will have enough data to validate it by the end of the year.

 
Hutan

Hutan

Senior Member
Messages
1,099
Location
New Zealand
I bought Ros Vallings' 'Managing ME/CFS, A guide for young people' for my son.

Most of it is good, sensible advice. But my son didn't get anything useful out of it. Perhaps, as @daisybell said about the more general book, it might be useful for a (young) person who has just been diagnosed and their family. And maybe for pre-teens and younger teenagers rather than older teenagers.

I think really most young people are used to getting information online now, especially by youtube, rather than from a book. Theories and approaches published in books date quite quickly.
 
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taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
BurnA said:
so I am back from the talk :)

The OMF seem excited about suramin.
Click to expand...

ohhh, I was just looking that up drug as I hadnt heard of it before and see for a study with 15 cancer patients on it , they got side affects of

"Toxicity included proteinuria (14 patients), reversible liver function test abnormalities (eight), vortex keratopathy (five), adrenal insufficiency (three), coagulopathy secondary to increased circulating levels of glycosaminoglycans (11), and one case of a reversible acute demyelinating polyneuropathy resembling the Guillain-Barrè syndrome. " https://www.ncbi.nlm.nih.gov/pubmed/2926472

that 3 who ended up with adrenal insufficiency (so that works out to be 1 in every 5 who tried it in this study), that side affect would be a worry for many of us who ME/CFS... I already have abnormally low cortisol at times. I see that they also dont say in the study Im looking at with it that the adrenal problems caused were reversible like they say for the other things so it appears it wasnt.
 
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