Discussion in 'General ME/CFS News' started by Andy, Jun 19, 2018.
Only just started listening to it, seems OK so far.
Was interesting to hear that the doctor on the program believes that the CBT that is offered to sufferers is of the supportive kind, she's on Twitter if any Twitterer wants to try to educate her.
just listening now;
talks about 'post exertional fatigue' not PEM; interviewer keeps bringing it back to mental health, emotional wellbeing etc
again the debate re physical/mental illness......
agree with @Andy on the CBT issue
Very different from her interview with Gary Burgess.
Didn't realise re Emma Donahoe:
"Eventually Emma started looking online for anything that could help her, and came across The Optimum Health Clinic in London, which specialises in ME, CFS and Fibromyalgia."
The doctor probably reflected typical NHS gp, i.e. Only superficial understanding. Doesn't seem to have checked out for example the bmj info which is actually quite good on current scientific knowledge. There was a question she asked at the start regarding Emma's reaction to the stigma which I think suggested a buying into the bps model. Not enough recognition that not everyone could get better, no mention of the merryn croft case and her death
Emma got the symptom and severity quite well out there plus the GET issues but didn't really convey the scandal & tragedy of the neglect in those who don't recover as she did. Possible Benefits of nutrition I think we're over stated, She sounds almost symptom free now herself.
Ultimately it probably somewhat enlightened a teen radio audience who wouldn't want heavy science /politics discussed and there was quite a long chat.
Short interview on BBC 5 radio:
Older video with Emma about her "recovery" from ME on ITV from 2014:
One problem here is that I think there are some patients who do receive supportive CBT for their ME. Their seems to be wild variations between clinics as to what kind of support you receive, and a disconnect to what has been written about in former papers / PACE manual and what's actually being delivered to patients. Basically, there's no consistency of service across the UK.
I know of three patients at three different clinics who currently participate in CBT sessions - 2 of them receive the supportive kind, the third receives the less helpful kind.
I think people that come on recovered do us no favours regardless of how well intentioned they are. It sends the message that the disease is not that serious and certainly doesn't do anything to encourage biomedical research funding. When I hear of Optimal Health Clinic, I want to cry into my pants.
While I understand where you’re coming from, the alternative is people with no energy constantly trying to advocate for themselves, which probably won’t end well.
Not necessarily, there are moderately ill patients who could do an interview albeit with payback. Even if they had a family member with them for back up. A recovered patient mentioning the Optimal Health Clinic...is a massive no no for me. I'd prefer no coverage to that.
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