I continue to have a lot of concerns about Complex Chronic Illness Support (CCIS). I see that Fiona Charlton, who leads ANZMES, is now also
'Chair/President' of CCIS. Given ANZMES has had aspirations of being a national organisation, representing regional organisations including CCIS, this is an interesting move. It looks as though CCIS has aspirations to be have a nationwide presence.
Our thread about the organisation is
here. There have been lots of commentary on the forum about the problems with Ros Vallings' advice about ME/CFS also.
Coincidentally, yesterday I came across a CCIS about a trial of CoQ10 that completely misrepresents the findings - presenting a null result as a positive result -
here.
With the BPS people such as Abbott and Arroll on the one side, and the people spreading biological nonsense on the other, often in our own charities, I feel as though we may be losing the battle to help people with ME/CFS get good care and good information in New Zealand.
Hear you !.
Thanks for laying everything out so clearly and I agree.
I did see that Fiona Charlton has presence at CCIS. …and yes, does appear that politics are beginning to complicate and divide.
Ive found ANZMES personally excellent to have something reliable to turn to for information (and for their known advocacy) . Ive known about them
from early diagnosis days… but at the same time its basis feels like a reference point - like Library reference books of old.
I did see there was discussion and complaint about CCIS here.
Theyre comparatively new to me !
-their growing presence and keenness to actively reach out to you is a markedly different approach (as too their “umbrella” feel, trying to include those illnesses that dont get the same attention ).
The lean into emotional healing is concerning ( my hackles rise on any psycho-babble linked with auto-immune health)…that said as someone struggling with daily-living , living alone ,having to spend more time horizontal (already over-extended just trying to articulate a response)… I felt hope !
That there might be another tweak I can make to improve. We are mostly alone… and Im currently too ill to chase down further specialists or push and push again for possible tests or further personalised understanding on how to manage living. (I dont have anyone to do this for me or with me at this point). This new mushrooming body are offering options…its something !
Im sorry I cant be more succinct.
I havent read about the problems with Ros Vallings, or issues with her advice.
I only know of my dealings with her at early diagnosis and they were enlightening
and incredibly helpful. In more ways than one.
She immediately gave me links to others writings, current research and more.
Im sure youre aware that shes spent time behind the scenes trying to engage and inform and Ive met social workers who admitted to me they had thought this illness was basically a con until they were informed , by Ros Vallings, about living with ME and chronic illness.
This was of course around 15 years ago now.
(Im wondering if we could pull apart any if not all writings or books amongst our varying ME health challenges , espec after new findings which change those ideas of 20 or 30 years ago).
I find myself being a little defensive here (surprise) because her words and past actions have made my life easier than it might have been (and without doubt have enabled so much more knowledge in this field… what do people say, ? the shoulders we stand on today ? , the work that was done prior ?
Shouldnt be underestimated or forgotten !)