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

I'd like to see this:

Replaced by this:

"a small group of ideologically driven morally bankrupt insurance industry and government henchpersons on the make"

or something similar.

 

It is now on YouTube at -

https://www.youtube.com/watch?v=XLPCuEdqIWY

 

Cool, I've just had it confirmed that it can be viewed in NZ, so hopefully there are no country restrictions on it at all.

 

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.

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

 

Is there an angry emoji blowing his top and puking at the same time?

Oh well

 

Incredibly manipulative in defense of their little empire.

 

The documentary is getting another four broadcasts on the BBC News Channel, https://www.bbc.co.uk/programmes/p065b4lp/broadcasts
Today at 00:30 and 14:30, Monday 09:30 and 15:30.

 

https://twitter.com/user/status/1022437940528640000