BBC Lifeline Appeal, April–May, 2026 - Action for ME

Its weird seeing a donation link and appeal for funding for ME research, I don't recall ever seeing that before and certainly not on the BBC. This is a promotion for Action for ME and has how to donate all over it. Classic BBC style for this sort of thing, 3-4 different people describing their suffering, heart string music and a part designed to make you cry.

My main concern is that its mostly about fatigue and Post Exertional Mailaise is never explained or described by any of the participants. Nothing on sleep disturbance either. Neurological impacts are in there as is being bedbound all day. The disease is presented more seriously here than I have seen before on the BBC but still no where near as seriously as it gets.

Still got a way to go before these sorts of things are representing the disease accurately and informing people about the primary symptoms and disability level it causes.
 
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I thought it was ok, but not hard-hitting enough. Indeed, there was no explicit mention of PEM, just something about 'after activity', which I can't remember now. Nothing on the dire research funding situation. I don't expect the 'politics of ME' to be brought up on a 10-minute segment like this, but it should be possible to bring up the decades-long lack of research and the fact there are no treatments. But it's a good step forward, and I hope a decent amount is raised.
 
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BrightCandle said:
Its weird seeing a donation link and appeal for funding for ME research, I don't recall ever seeing that before and certainly not on the BBC.
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The BBC always trotted out Wessely whenever ME was being mentioned, it appeared he was the only person allowed to speak on the matter. However I think he's been replaced by Paul Garner & Trisha Greenhalgh who both have links to Wessely. Still nice to see somebody else getting a look in.
 
I thought the segment was very good. Being on the BBC increases credibility of the message. It is now mainstream.

Regarding the things it didn't contain - there is a limit to what can be communicated in 10 minutes, and what people who don't live with this every day are willing to engage with.

This segment presented quite severe ME - people bed bound with sensitivity to light and sound, unable to care for themselves, and people who have lived with it for decades. For many that will enhance their understanding of the disease, and make a good case for support.

These things don't raise huge sums, but they do increase credibility which, in the case of ME, is valuable.
 
dave30th said:
I'm confused--BBC runs what are essentially promotions for charitable organizations? Is this a standard thing?
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Public sector broadcaster, will be part of their remit.
Traditionally, Sunday BBC was Songs of Praise (hymns and church) and it still has Countryfile (wildlife watch, sheepdog trials, etc) and David Attenborough stuff, Antiques Roadshow, so it makes sense they do charity appeals around that time (the silver mafia watching then have deep pockets)
 
I've managed to download it. A transcript extracted from the subtitles:

In the UK, there are currently
around 400,000 people
living with ME.
I can't stand.
I can't put one foot
in front of the other.
I have to live as best I can,
almost entirely
within these four walls.
And it's a condition which affects
both adults and children.
It's horrible...
..and you can't do things
with your friends.
Myalgic encephalomyelitis, or ME,
is a profoundly debilitating
chronic illness
for which there is no known cure.
It's a disease
which severely impacts lives
and, for those affected,
often feels overlooked.
ME has also been known
as chronic fatigue syndrome,
but, for many, this name undermines
the severity of the illness,
as it can affect people for decades.
It's a wide-ranging disability
which can be catastrophic.
Many who have it live in pain
and experience crushing fatigue,
made worse by activity.
For years, I've had chronic pain
due to a medical condition.
I know how difficult it can be
to live with.
And those with ME also have to
deal with social stigma
and a lack of support.
Action For ME is a charity which
aims to improve the lives of people
through research, information
and support services.
They want anyone, of any age,
affected by ME in the UK
to know they are not alone.
They're photographs of me
on holiday, when I was happy.
Andrea first noticed symptoms
33 years ago.
I just remember
being totally exhausted,
as if I'd walked ten miles
and not slept for three days.
I didn't know what hit me. I was
bringing up two children on my own.
They've grown up with me
always being ill.
And I feel that I've let them...
..let them down because of that.
One of the symptoms of ME is just
the feeling of air on my eyes,
and the light hurts as well.
Which is why
I'm wearing dark glasses.
Having severe ME means
Andrea is confined to bed
nearly 24 hours a day.
It's progressive,
so I have got progressively worse.
There is no prospect
of ever getting better.
There's no treatment
and there's no medications.
So you're just stuck in one room...
..for the rest of your life.
ME has taken 75% of my sight.
Can't cook any more.
I can't prepare meals.
But I've got loads of books.
I can read one page a day.
It's taking me ages
to get through a book.
It's not living, it's existing.
Andrea is one of thousands of people
affected by the illness
to have been helped
by Action For ME.
A lot of the people
that work for Action For ME
actually have ME themselves,
so they have a keen appreciation
of the limitations
and impact of the disease.
They're very supportive.
I think
they're absolutely brilliant.
Like Andrea, many people living
with ME desperately need support,
and they need treatment.
Accelerating research is critical,
something Action For ME is driving.
In 2020,
the charity co-led DecodeME,
the world's largest
genetic study into ME,
which, over five years,
analysed the DNA
of 15,000 people with the disease.
Mark, a retired technologist
from Cambridge,
submitted his DNA for the study.
In the mid-'80s,
I caught chickenpox,
and I didn't recover.
It turned out I had ME.
I couldn't do the sort of
extreme physical things
that I used to be able to do.
The things I noticed most
were breathlessness and shakiness,
and an inability to concentrate.
So, with three small children
and a job,
it was very, very difficult.
I gradually became
more and more disabled.
Life today is very restricted.
I get lonely.
I get periods of depression.
Having earned my living
as an inventor and a thinker,
having limits on my thinking
is pretty awful.
Many people don't understand ME.
To help discover more
about the causes of ME,
Mark volunteered
for the DecodeME study.
DecodeME was launched in 2020.
We've identified
eight genetic differences
in the DNA of people with ME.
Hearing the stories
of people with ME who have said,
"I walked into my doctor's surgery
and I showed them the results
"and, for the first time,
I was believed" -
that's incredibly powerful.
I'm under no illusions. I'm 73.
This isn't going to happen
in my lifetime.
But it is so important
that this work continues.
We're already building
on the results.
We've set up a huge new partnership
to do whole genome sequencing,
which means we can really get
a detailed picture
of what is going on,
and that will move us closer towards
treatments and, ultimately, a cure.
ME can affect anyone at any age
and, with no current cure
and little treatment available,
younger people battling the disease
face an uncertain future.
Alice lives with her husband
and daughters,
ten-year-old Isla
and six-year-old Eva.
When Isla was a child,
she was incredibly energetic.
She had lots and lots of friends.
Life was ideal.
At age six,
Isla started showing signs
of what would
later be diagnosed as ME.
I first noticed Isla's fatigue
when she caught Covid,
and then it just sort of merged
into never recovering from that
and to getting worse and worse, and
I was carrying her to the toilet.
She couldn't handle light.
Every function was gone.
She was just lying in bed.
She's 95% housebound.
I can't do anything
I really want to do.
On terrible days,
I just lie in bed all day.
I can't even go downstairs to eat.
And then I feel really sick
and I get headaches,
and I have stomach-aches
and I feel really tired.
She actually asked me
a couple of times,
you know, "am I going to die?"
she felt so unwell.
It's a bereavement.
You're grieving
for the child that you had,
and you're having to learn
to live with this new reality.
ALICE EXHALES
It's very depressing.
I want to have fun...
..and do things with my friends.
Aw.
Isla has been supported
by Action For ME.
They've just been just wonderful,
and it just gives you
such a sense of peace
to know there's someone out there
that understands
what you're going through.
The research and the funding
that have been secured
and initiated by Action For ME
are really vital.
Without them,
we wouldn't have any hope.
The work Action For ME does
is essential and, with your help,
they can be there
for even more people
affected by this
debilitating condition.
Your donations will help to support
those living with ME,
and their families,
and to fund research with the aim
of finding life-changing treatments.
Every donation makes a difference,
so please, if you can, give now.
To give by phone, call...
Calls are free from mobiles
and landlines.
For full terms and more information,
or to make a donation online,
visit the Lifeline website at...
You can also donate
any amount online
by scanning the QR code
displayed on your screen now.
Or if you'd like to post a donation,
please make your cheque payable
to Action For ME and send it to...
..writing "Action For ME"
on the back of the envelope.
Thank you for your support.
 
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