Discussion in 'General ME/CFS News' started by Dolphin, Nov 11, 2017.
Given Emily is hosting this and it is organised by Action for ME, I wouldn't have high hopes for this.
Note they didn't mention Hazel O'Dowd for this one (she was the advisor for the previous ones).
Expected learning outcomes
To be able to describe the characteristic symptoms of M.E./CFS and understand how this affects daily life
To be able to identify and apply practical measures that will enhance consultations, appointments and treatment planning.
To have an overview of evidence-based treatment and where to find further information and guidance applicable to a variety of health professionals
To be aware of the direction of research into the underlying pathology and potential treatments for the condition
To be able to signpost to self-management resources and support"
very airy-fairy as usual
wonder what their idea of 'evidence-based treatment' is?
eta:emoji for sarcastic rhetorical question(?)
Emily Beardall has been the subject of several complaints for her abuse of patients on social media.
One was upheld last year & she had a lower profile.
Another complaint was made this year based on evidence collected by Phoenix Rising Members. AfME chose to do nothing even after the complaint was escalated.
I understand the complaint will now be sent to the Charity Commission.
What did the abuse involve?
Whenever I see the phrase Evidence-based treatment associated with ME it tends to be being used to promote CBT and GET which have really weak evidence because the trials are so bad.
Good treatments that really work don't seem to need to push such labels.
I kept seeing Beardall being annoying and making unfounded accusations of other people abusing her... standards for some claims about 'abuse' can seem low to me.
To me, she seemed like someone who tries avoid debate, and we've seen the harm that they can do.
To add a bit of clarification, I actually think Action for ME does some good work some of the time, but on things like professional education they don't like to criticise CBT and GET much and sometimes promote them.
Emily likes to initiate arguments with patients and patronise them. When people reply she claims to have been abused!
She has a rather different take on CBT for example due to mental health comorbidities she has discussed at length on her blog.
AfME should not be sending out vulnerable people to pick fights and act as a human shield for its paid employees.
I wouldn't call it abuse, but Emily Beardall and another guy were pretty unpleasant on Facebook. People asked AfME why they didn't sign the open letter to Psychological Medicine asking them to retract the PACE recovery paper. Beardall said it was a conspiracy designed to make AfME look bad, since they weren't part of the initial group asked to sign it. But they didn't join the other groups that added their signature later, with Beardall claiming it was pointless to do so at that time, and the letter had been a failure anyhow.
Beardall then went on to "like" a bunch of Facebook posts from the unpleasant guy in support of AfME, some where he was referring to other patients as whining and hysterical.
Colin Barton perhaps? He often posts pro AFME stuff
I remember there was a lot of comments on their Facebook at that time arguing for and against. Didn't pick up on anything that seemed abusive, as you say definitely unpleasant tho
I think AFME will increasingly regret they didn't sign that letter. I know "in the past" they were involved in BPS up to their necks but after ditching Alistair Miller etc they are supposed to have left that behind. clearly they haven't moved very far at all. Also shown by sitting back letting MEA MERUK IIME etc etc do all the work on NICE guidelines campaign.
They seem terrible in so many ways that I think they'd need to be taken over by entirely new people to even be able to recognise how badly they'd got things wrong.
Which would be difficult as they aren't a proper membership organisation so they control who joins their board
It would require some sort of alien mind-control device. Or just for those involved to educate themselves.
I'll contact SETI.
Sorry @Esther12 youve stumped me with SETI?
'Search for extraterrestrial intelligence'.
I thought that I'd mention that I have just posted a link to the webinar here: https://www.s4me.info/index.php?threads/lecture-by-emily-beardall-of-action-for-me.1493/
Just wondered if it might be worth starting a thread to list any similar training courses for healthcare professionals; at the recent CFSAC meeting they discussed the need to get incorrect literature removed/changed. They can only deal with stuff in the US.
I just found another one but have no idea about its content:
but given the second objective is "Discuss the biopsychosocial impact of ME/CFS" it could go either way.
It'll be a long while before anything gets amended here in the UK. Maybe we could help identify US sources as a start(?)
I think it might be worthwhile having a thread with a list of problematic training courses from all countries.
Many people are still being harmed by this stuff and its horrifying: picture the person as their world starts to fall apart and instead of a reaction of at least sympathetic ignorance from their employer, they get BPS crap from the employer's OT.
At least with a list (& assuming the individual is lucky enough to find their way to us so early on in the process) they might be able to argue that the training the OT is relying on is considered incorrect and harmful by the patient community.
I'd be amazed if the training course was discussing the problems with it. Sounds bad to me.
Separate names with a comma.