Discussion in 'Upcoming ME/CFS Events' started by Action for M.E., Oct 30, 2014.
The people on live chat have much more useful things to say than that last speaker
heated discussion in my round table about solutions for care for PWME - SEVERE. I was a bit cheeky with the afme rep - I asked if they would distance themselves from the PACE trial as the first task in educating people on the nature of real; M.E
Bit ad hoc bob
afme will e mail me privately to discuss this
Similar questions being asked on live chat, being met with lots of wriggling from Chowdry and AFME
Live chat quite political but AFME not answering difficult questions - perhaps they will take it in and think it over. AGME next and people asking why they cant vote if they are a member like other orgs.
Well did my best to poke them. my round table discussion on solutions was good. we came up with a few main points about care for PWME - severe.
1. Education about the nature of severe M.E - the reality but also the real physical issues eg POTS, cardiac etc. To educate NHS, DWP, schools, public etc.
2. Advocacy - advocacy for pwme severe through home visits or SKYPE to help with negotiating benefits system, NHS, social services etc. ascurrently this is exhausting for most pwme severe.
3. Specialist nurses like MS nurses or district nurses to have regular home contact and liase with GPs hospitals etc - many had trouble accessing care aside from for ME eg dental care etc
points 2 and 3 above - many orgs such as MS society already offer these kinds of services to patients and we could use thier template rather than trying to do our own from scratch.
Afme rep fed this back to main group, but I felt was watered down somewhat - frustrated that I couldn't stand up and say it myself.
more patient testimony would have been good. afme will ask for feedback at the end of day.
The response to a question about why the NLP people had been given a platform (it was the main afternoon talk) to waffle about NHS provision of CBT and GET was that it was "the only bit of recent research we could find that was specifically focused on severe M.E."
Very weak excuse. Here's the stuff they're pushing
Yes, exactly and a talk on this sort of good practice would have been much more useful than the one served up this afternoon, which got us absolutely nowhere
so basically as expected TOTAL CRAP from AFME
Colour me astonished.
Summary of AfME's severe ME symposium:
View attachment 8867
The morning talk was quite interesting, covered the cytokine brain stuff, but the speaker didn't seem that keen to engage directly with questions about implications for ME treatment
Paid by the psychs so it seems
Ms Chowdry at the AGM today:
Maybe if she tried collaborating with the patients she professes to represent, instead of White, Crawley etc, the next symposium might not be as much of a disaster for those patients as today's has proved.
Thanks for what you said about it as it was going along @justy - much appreciated.
I liked that they did the Livestream in the first place, and the Roundtable, but they really need to up their game with the camera/ sound. It would have been so much better if the camera had been central at the front and if there were feeds direct from mike for sound, and screen for slides! It was really really hard to follow...
That said, hopefully it's the start of them listening. They have said they want to, so if we say how we feel, they will at least know. If we don't give feedback, then we won't have a leg to stand on if nothing changes!
The key thing for me that came out of the day was the urgent need for decent advocacy. Cos with that, it's more likely things get done.
(today for example I found out that a whole year ago my VitD was only 15. Hospital forgot to tell GP, GP forgot to ask hospital. I didn't get around to asking for paper copy til yesterday. sigh. I am unimpressed. I stupidly assumed that if no-one said anything the results were fine. Once it's sorted, there will be a conversation about cracks in the floor, inadequate safeguards and training needs! If I'd had an advocate, or someone co-ordinating (like everyone's supposed to have a care plan and one person co-ordinating everything) I don't imagine it would take a year to realise there's a fixable problem. And I've got a supportive social worker & close family around: those who don;t have that, it's appalling how abandoned they could be)
*muses* it would be great if other bodies or charities did livestream of their events or roundtables etc to allow us to be more involved. resources permitting.
Mostly though I'm cross that the bloods need to be done again. I hate it, I always pass out and it hurts afterwards.
They are making a start that has been long over due. Let's hope they listen to the severely ill this time as they should have done in 1990...
They have also upped the game as far as patient contact is concerned. I hope other charities have the guts to take in the challenge of interactive debates.
It's not that expensive or difficult to do this nowadays, modern technology and all. Mid-range consumer camera and lens, tripod, HDMI box, a few leads, directional mike, internet connection and you're away. According to a comment in live chat they had TWO techies supposed to be looking after the broadcast so don't know how they made such a mess of it.
However, at least they made an attempt, and it would be good if those who couldn't get to these conferences and meetings, because of health, finance, family, whatever, got access to the events and a chance to contribute. Those of us living with this, for a long time some of us, do have a useful and much needed contribution to make
Clare McDermott been severely affected herself. if CBT and GET helped than she did NOT have (severe) ME !!!
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