• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

UK, Weds 18 Oct: Jen Brea & Omar on ITV news and in The Times with Unrest

Sasha

Fine, thank you
Messages
17,863
Location
UK
Damn! Just went out and could have bought The Times. :)

I'm assuming the news item might be repeated on the 6:30 pm ITV news but I could be wrong. I wonder if it's been on the BBC?

In the ITV interview she sticks the boot into GET and CBT and might be back next Tues or Weds to talk again after she's been talking to Parliament, I think:


The Times said:
As Jennifer Brea’s chronic illness worsened and she spent more and more time confined to bed, she became increasingly active in her dreams. “Every night I’d have these incredibly kinetic dreams. I was flying or running up mountains. I’d wake up in the morning and realise that I was still in the same bedroom, and many mornings felt really disappointed that I was still alive.”

Brea has ME, or myalgic encephalomyelitis, also known as chronic fatigue syndrome (CFS), a condition that remains largely as mysterious and incurable as it was when it was first described in Britain in the 1950s. Estimates vary, but between 190,000 and 250,000 people in the UK are believed to have ME and between 836,000 and 2.5 million in the US,…

Good to see 'incurable' there, as opposed to 'curable by GET and CBT'.

https://www.thetimes.co.uk/edition/...-frozen-by-chronic-fatigue-syndrome-rdftnm75p

This is a big deal, to have this on mainstream UK TV news. Well done and thank you, @JenB!
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
Also said she is part of the privileged 1%, which is good because it has been mentioned she could perhaps be too much a model for "yuppie flu"

Must admit I don't see that 'yuppie flu' angle. She looks so catastrophically ill in the clip that it would take a special kind of insanity to think that this is anything to do with such a concept.
 

CFSTheBear

Senior Member
Messages
166
If anyone here likes the Times article and would like to send the author a message giving a thumbs up, I am happy to supply his email address via private message.
 

Demepivo

Dolores Abernathy
Messages
411
If anyone here likes the Times article and would like to send the author a message giving a thumbs up, I am happy to supply his email address via private message.

Article was OK. Rather have it than not have it....Encourages individuals to see the film.

Couple of things people picked up on were the mould angle (perceived as hypochondria?) and the origin coming possibly from mental health problems (I don't have to elaborate!)

BTW realise that some patents too picky!
 
Last edited:

CFSTheBear

Senior Member
Messages
166
Article was OK. Rather have it than not have it....Encourages individuals to see the film.

Couple of things people picked up on were the mould angle (perceived as hypochondria/) and the origin coming possibly from mental health problems (I don't have to elaborate!)

BTW realise that some patents too picky!

No problem. I read it early this morning so I can't remember the phrasing exactly - to me I actually read the throwing in of mental health along with a whole host of other things as a good thing.

I understand that it doesn't remove the stigma but I felt like it was treating as one of 4/5 causes rather than "this is a mental illness". Perhaps just my interpretation. I also think its placement was significant - this is the main supplement in the second biggest selling broadsheet in the UK.

Only reason I offered the email correspondence is I feel that if articles get published that tell our story and do a good job, then it's worth reminding these people that their efforts are appreciated, the same way that we'd criticise those who publish poorly researched pieces.

So just thought I'd show the reasons for my thoughts above! Totally understand the points you raised too.
 
Messages
66
Thank you for highlighting this and posting clip and article as managed to miss both.

Agree totally with @FTY regarding Jen & Omar's incredible PR and advocacy; and massive appreciation to the ITV news team and Alistair Stewart (the newscaster) for featuring such a great interview on the main lunchtime news.

And same appreciation and thanks to Damien Whitworth for the Times piece, which I agree with @jstash is worth acknowledging in the hope that it encourages an increasing interest, awareness and understanding of this illness and it's impact.

Edit: ... and apologies for managing to mis-spell Damian's name ....
 
Messages
10
Location
UK
Glad to have Jennifer on our side, her determination shines through. A very clear, concise interview. Lets hope she opens the eyes of our MP's. A shout out to Omar and all the other supportive husbands/wifes/partners. I'd be lost without my wife Liz.
 

NelliePledge

Senior Member
Messages
807
Presume Channel 5 picked up on R Gervais as I think the celebrity angle would appeal great if this leverages wider publicity.

So far Unrest team are massively exceeding my expectations on the press impact.
 

Solstice

Senior Member
Messages
641
Her continuisly stressing she found help/friends online is so good with certain people stressing don't look up anything about this disease. It's just a pity this place is at such a shambles nowadays we could really stand to help so many people find answers and in the process help ourselves/advocacy.
 

FTY

Messages
75
http://www.bbc.co.uk/programmes/p05khqq3 really good review by Mark Komode on five live. Good for him!

Also an article in cosmo http://www.cosmopolitan.com/lifestyle/a12779054/what-is-chronic-fatigue-syndrome/

@Demepivo thanks for sharing the Times article - really good I thought. @jstash I'd like to drop the journalist an email to say thank you.

The Unrest team are amazing. I'm actually starting to feel what a difference it makes to see myself represented in our culture in some way. Don't know how they managed to get so much publicity over here but it's really great.
 

sarah darwins

Senior Member
Messages
2,508
Location
Cornwall, UK

CFSTheBear

Senior Member
Messages
166
I know I keep banging on about this, but I think it's important to contact those who do a good job on stuff like this. It sounds like Mark Kermode has a personal connection with the illness through friends / family, but all the same, here is the link to get in touch with the film show if you want to show appreciation for the review:

http://www.bbc.co.uk/programmes/b00lvdrj/contact