Thought for the day

[Barry53]

Heard a BBC Radio 4 Thought for the Day clip, at around 05:40 BST (today 12 May). Not sure of the lady's name, Rev Kirsty someone I think. Was about her son who they eventually realised had problems, and was diagnosed with "Chronic Fatigue Syndrome", and that it was a long haul before he got back to school. Did mention ME Awareness Day, albeit only said their son had CFS.

Although it was good to at least hear something on the subject on the BBC (albeit not exactly prime time), I was left feeling uncomfortable with this brief piece. Was vague and ambiguous, and could easily leave listeners with the impression that she was asking God to help people overcome their illness and get well again.

There are usually several Thought for the Day slots in the morning. Not sure if any of the others will be on ME/CFS.

 

[wherearemypillows]

I don't listen to BBC or know about that segment (I'm from Canada; I admit that I could be missing your point altogether) but I think that adequately conveying what the illness is all about in a short timeframe, to the average person, is always going to be challenging. There's just so many facets of it that I wouldn't expect an individual afflicted with ME/CFS or their caregiver(s) to speak much more to it than their own personal experience.

While on one hand that may leave those listening with an incomplete impression of the illness, on the other hand I think there's also merit in there being discussion about it in the media at all. Around where I'm from, relatively few have heard about ME/CFS.

 

[Barry53]

I don't listen to BBC or know about that segment (I'm from Canada; I admit that I could be missing your point altogether) but I think that adequately conveying what the illness is all about in a short timeframe, to the average person, is always going to be challenging. There's just so many facets of it that I wouldn't expect an individual afflicted with ME/CFS or their caregiver(s) to speak much more to it than their own personal experience.

While on one hand that may leave those listening with an incomplete impression of the illness, on the other hand I think there's also merit in there being discussion about it in the media at all. Around where I'm from, relatively few have heard about ME/CFS.

I'm just a bit sensitive to anything that seems to support the notion that ME/CFS sufferers just need to get on with getting themselves better, as if it is only them stopping themselves from doing so. That may not be what this lady was saying, but it could easily have come across like it was.

 

[SamanthaJ]

Haven't listened to this yet, but sounds like a missed opportunity to say something of substance - I'm guessing she's just unaware of the situation. Probably no one would have mistaken her for an expert, but what a missed chance to have said something meaningful about ME in the middle of the Today programme!

Edit: just realised you weren't referring to the 7.45am slot. Still, a shame we're not all 'singing from the same hymn sheet' about ME, when there's so little coverage to be had.

 

[SamanthaJ]

http://www.bbc.co.uk/programmes/b08rb2w8#play
There's a transcript underneath. As you say, it's not great. Is 'Chronic Fatigue Awareness Day' also a thing, or did she just get the name slightly wrong? It's a pity she doesn't seem to know anything about it other than her own family's experience, as a prayer for justice, respect and compassion would have been fitting today. But guess it's not meant to be that kind of slot.

 

[.Chris.]

Thought for the Day

vague and ambiguous

That should not come as a surprise!

I agree it's not perfect. Without any prior knowledge the listener could come away with the wrong impression. But, she is a vicar and mother talking from her own experience rather than a seasoned campaigner/advocate. As wherearemypillows says above, it's very hard to fully encapsulate the illness in only a few minutes, let alone whilst also telling a (rather charming) story like she did. It's much better than just about anything else I've heard on Radio 4 about ME.

 

[TiredSam]

There's an equivalent to thought for the day on German radio. If it comes on while I'm driving I shout something rude at the radio and change the station immediately. I can well do without such sanctemonious musings in the morning.

EDIT: mind you having my first swear of the day usually perks me up nicely.

 

[MEMum]

There's an equivalent to thought for the day on German radio. If it comes on while I'm driving I shout something rude at the radio and change the station immediately. I can well do without such sanctemonious musings in the morning.

EDIT: mind you having my first swear of the day usually perks me up nicely.

Do you prefer them later in the day? (not a serious comment)
I do agree, some platitudes can be very grating!

 

[SamanthaJ]

Looking at it again, it doesn't seem so bad. It's obvious her son was really ill and that he got better by resting. Maybe I expected too much of a prayer slot. I'm now digesting the fact that this was the London BBC's only reference to ME, at 5.40am.

 

[Snowdrop]

With any luck this will open the door for more BBC coverage of ME.

However, I think that maybe a little investigation might be needed to find out how they find their interviewees.

It might be worthwhile to send one letter that can be agreed on and signed by many PwME to the Beeb suggesting people who would be a good choice for interviewing on the subject. They have to find these people from somewhere.

I've said before that with ME there is a real learning curve. When talking to the media even as we share what's true about this disease it's important to have some media savvy and understanding as to how those listening will understand what's said through the filter of possibly previous and erroneous incorrect assumptions. It's an uphill battle and the better we can communicate when given the change the more education can take hold in the general population.

 

[NelliePledge]

UK channel 4 news would be a better target to educate about ME - less establishment more investigative

 

[Snowdrop]

That may well be the case.

Nevertheless if the bbc does do another piece at some time I think it would be good to get in front of it rather than have them going to say, AfME asking for a lead on someone to interview.

As things in ME advocacy heat up they may well decide that the subject may warrant some air time.

 

[Barry53]

As things in ME advocacy heat up they may well decide that there the subject may warrant some air time

And along they will probably trot to the SMC, bibs at the ready, for another spoon-feed.

 

[Snowdrop]

And along they will probably trot to the SMC, bibs at the ready, for another spoon-feed.

Yes possibly but the patient population in the UK would then have offered them an alternative that they could go to or ignore. They would know the difference. Helps accountability perhaps. And for all we know they might just use the info provided.

ETA: With non of my suggestions do I think that the issue can be forced. People will do what they will do but offering them a choice when there is a lot riding on it for us seems reasonable to pursue.

 

[SamanthaJ]

Some parts of the BBC may be more receptive than others, as we've seen with BBC Radio Scotland. For example, I can think of R4 programmes that are more willing to tackle the establishment line than Today is (though I feel wary of naming them here in case someone gets to them before we do!) They also might be more inclined to use guests that the BBC has already used, e.g. Dr Shepherd and Julie Rehmeyer. I think I'm probably stating the obvious, but just thinking aloud. I dread finally getting coverage of ME, and then they've called in Dr Crawley as the expert!

 

[soti]

"panic attacks"..."hopelessness and anxiety"..."lost strength and confidence"

It does make it sound like a mental illness, doesn't it.