BBC Newsbeat: M.E. And Me - documentary available from Tuesday 8th May, 6am

My thoughts and I just want to say it's great seeing severe ME cases getting tv attention which I think is the greatest gift of this documentary.

To me it was good to see severe ME stories covered well and very sensitively and movingly, well done to all those filmed. It should certainly convince those who watched it that its real and serious and get severe ME some recognition. In the small clips a lot was conveyed (showing the benefits of tv media) - Sophie's stories lines such as when toddler is noisy he's out of room ,on a good day 5 minutes contact could be stretched to 8 minutes (note not 10 !!) and showing the young household so impacted would move many. I didn't think it was clear enough why Merryn became sadly terminal but the pictures said a lot. Severe ME case studies were featured rather than it being a documentary about the difficulties for many with severe ME eg lack of severe inpatient expertise, issues with care etc but it did convey issues with medical belief and support even at that level.

MEA focused on diagnosis, GET and hope for improvement and treatments.

it did give a bit too Rosy picture for me. I felt it presented ME as ultimately usually self limiting. Whilst some have the severe onset to nearly recovered trajectory of the presenter, a lot have the reverse from the bad days of even worse medical recognition. Severe ME can also be very long lasting eg decades. Ending on the "high" regarding the one major uk research project gave the impression ME was being researched like other illness and all was well. It isn't.
The scandal in the uk is the lack of funding that's going into biomedical research and that wasn't mentioned, nor was it mentioned that the biobank research was only happening because of a significant investment fund from America and that's pretty much it in terms of large scale research in the uk. The scandal/crisis of THAT ultimately leaving those severely ill without treatment and utterly at the mercies of their circumstances wasn't conveyed enough.

Regarding the DOH statement of £3.5m for research in past 6 years I can only think they're referring to the large NIHR grants assessing CBT & GET etc? It's behavioural treatments they're talking about not medical therapy , big difference to sufferers.

For the youth audience it's aimed at, this may well have been very effective, I'm sure young people would find it really useful and relatable. Half an hour can't cover everything. The driving patient movement of #millionsmissing wasn't mentioned - on the hard campaigning front, scandal expose side that's where we will see action I think.
 
The newsbeat program on this 12:45 wasn't so hot. One case study on there suggested that there's hope if you really want to get better and it doesn't last for ever etc. And there was talk of getting people up and about and used to being mobile again ( sounds so easy) with GET and Michael Sharpe popped by saying it was all we have (and whys that?!). No recognition of energy production issues or of ME as life long condition. We aren't breakIng through like this. I personally wouldn't bother arguing against GET in the current U.K. media formats on offer as it doesn't work, unless you have time to quote workwell foundation research & talk science, IOM SEID name etc, itherwise it's just they say yes to rehab, they say no and even then it can sound like we either need pacing or rehab, whereas we actually need medical treatment. I personally would have gone big on research funding in the media this awareness week but I suspect t MEA & AFME are tied in with the CMRC on this and are waiting to see if the "respectable channels " route comes to anything now CMRC have moved, rather than promoting patient lobbying, which is why they never mention it in a direct challenge to the establishment way.
 
I think it's great! Really positive step I think. Although I did find it heartbreaking to watch :(

I think we need to get images of people who are suffering out there so that the general population can visualise what ME is first. Any campaign needs this as a base - people have got to CARE before they take action. We need stories. This documentary provides really good and striking visuals of what ME looks like which is really powerful and a very good thing to have out there imo.

Next step - a panorama that investigates the PACE trial!! (Fingers crossed).
 
Article on the documentary in The Sun online.
Living with ME
ME and Me lays bare the reality of life with the condition, shining a light on severe sufferers, as well as looking at the latest research into the little-known disease.

It is presented by Emma Donohoe, 24, who like Merryn, was struck down by ME as a teen following glandular fever – a viral infection causing extreme tiredness, swollen glands and fever.

Two years later, she was finally diagnosed with ME, after multiple visits to her GP, a barrage of hospital tests and months of being housebound.

Speaking to Sun Online she says: “Seeing the photos of Merryn before she was ill and to see the decline she went through was just shocking.”

“It took a long time to come to terms with this, I’ve never been as severe as she was but it’s scary finding out you have a condition that could kill you.

"It’s so unfair what happened to Merryn, and it made me really angry.”
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https://www.thesun.co.uk/fabulous/6235179/chronic-fatigue-syndrome-me-and-me/
 
I’m a bit mixed on this mainly because of the style of reporting that I found even for children was a bit dumbed down. I cringed a bit at how the reporter kept on bringing it back to her experience and her use of the terms “chronic fatigue’ and her “recovery” which came across as a bit misleading and overindulgent in places. I think this may be something I’m out of touch with being a non Facebook user etc.

Overall though I think it had some powerful visual segments and commentaries and has good support from the MEA and biobank. Not bad for 30 min.
 
My overall feeling was that the visuals of the severely ill patients outweighed the bit where she talked about supplements and her recovery. The truth is that some young people do make significant improvements and I guess she had to explain why she was now well enough to make the program. To bridge the gap it would have been helpful if they'd explained the statistics - how some young people do recover but some don't and that if you get it when you're older you're less likely to make a full recovery. But I think the message was strong despite this niggle.

I do feel very grateful to Emma Donohoe. It must have taken a lot for her to do this as she seems to be still ill, if a lot better than she was. To go and visit people who are very ill and also speak to a bereaved family must have been physically and emotionally very difficult for her... and she's only 21! Amazing that she put herself through this for the sake of getting the word out and helping our community. I think she's added something really helpful to the story of ME. I'd really like to send her a thank you note, any ideas where to send it?

Also, I agree that the MEA and Biobank support was excellent - thanks to them too.
 
Letter from Chalder, Crawley, McCrone, Sharpe and Wessely to newsbeat. Copied to and shared by Tina Rodwell: http://tillymoments.blogspot.com/2018/05/bbc-should-check-their-information.html

Reference CAS-4915499-TDRGZP

Thank you for getting in touch with your concerns about the Newsbeat article.
We have forwarded your concerns to the programme team who explained that the statement they used in the article was actually an abbreviated version (please see below for the full statement, and the list of academics that it is attributed to).

"CFS/ME is a serious and disabling illness and the fundamental goal of all researchers and clinicians in the field is to help patients. Everyone wants to see more research, more funding, better diagnostics, and more treatment options to improve the lives of patients suffering from this condition.There are however, some misconceptions about the evidence for cognitive behavioural therapy (CBT) and graded exercise therapy (GET) as treatments for CFS/ME. These therapies help many people with CFS/ME by reducing symptoms, increasing what they can do, and improving their quality of life.

NICE recommends that both CBT and GET are offered to CFS/ME patients, and this advice is based on good evidence from multiple studies and randomised controlled trials (RCTs) showing that these treatments are safe and useful for some patients. These recommendations have been in place for many years, and the evidence-base for these treatments has grown with time. CBT and GET can help patients with conditions such as cancer, chronic pain, and multiple sclerosis, so their use in CFS/ME does not infer that a condition is a mental illness.

Scientists and clinicians are also increasingly frustrated with the distinction made between ‘mental illnesses’ and ‘physical illnesses’ when the latest clinical evidence shows that the two are closely entwined. We all hope for new advances in the understanding and treatment of this condition but right now there are no alternatives for patients, so it is vital that they are not deterred from accessing therapies that can help them. " Prof Trudie Chalder, Professor of Cognitive Behavioural Psychotherapy, Institute of Psychiatry Psychology & Neuroscience (IoPPN), King's College London Prof Esther Crawley, Professor of Child Health, University of Bristol Prof Paul McCrone Professor of Health Economics, Institute of Psychiatry Psychology & Neuroscience (IoPPN), King's College London Prof Michael Sharpe, Professor of Psychological Medicine, University of Oxford Prof Sir Simon Wessely, Chair of Psychological Medicine, King’s College London."
We hope this explains our approach.

Thanks, again for taking the time to raise this with us.


Kind regards
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