TV

[Jo-lee69]

Tonight on channel 5 , the 6-30 news chat about bringing awareness to our fibro .... Lady gaga and a CEO from fibro ass ... Let's hope it brings light at the end of the tunnel and gives an insight to what we battle everyday so family friends and bosses understand our struggles ... Have a good pain free evening folks xxx

[Bonovox]

Thanks for the info jo-lee69

[Jo-lee69 in reply to Bonovox]

Your welcome Bonovox

[Jo-lee69]

yup for sure maybe worth a watch

[spider555]

Thanks will look x

[120848]

Thanks I shall watch that also X

[desquinn Partner Volunteer FMAUK Trustee]

as far as I am aware it will be a group leader from islington and a Dr taking part

[Hidden in reply to desquinn]

A group leader from where plz ?

[desquinn Partner Volunteer FMAUK Trustee in reply to Hidden]

islington

[Jo-lee69]

Thanks Desquinn x

[Hidden]

Thanks for the heads up I will be watching x

[Jo-lee69]

Xx

[Louby-]

Missed it 😔 will watch on catch up

Thanks for posting x

[Mdaisy in reply to Louby-]

You haven't it hasn't been on yet... Channel 5 news at the end

[Louby- in reply to Mdaisy]

Thanks for that info, much appreciated x

[Jo-lee69]

Hmmmmmm ..... That's all I have to say !!!

[Rose54]

just watched interesting

Would like to know what medical treatment she will be having for next 3 months if only it was available to everyone

[Jo-lee69]

Sorry that wasn't for you Louby it was about the little slot and air time it had ......

[Hidden]

Hmm that's just what I though,is it me or the lady staying she dances an plays footy is gonna make people think( oh fibro s not that bad) ??

[Jo-lee69]

Yes that's my thoughts too Lors ...... Someone like her who clearly has a pain free day makes us look like fakes ...... I wish I could dance and run around after my grandchildren and feel so positive ......

[Hidden in reply to Jo-lee69]

Yes I can't even stand an watch a match never mind play footy! I really think she should have saide its diff fr everyone

[desquinn Partner Volunteer FMAUK Trustee in reply to Hidden]

that was her life prior to fibro. She can still dance but as she says it is only through pacing that she can do that. We are all affected by fibro differently. Some people have constant pain but are able to work and move but suffer later.

Please do not judge unfairly. If we were to get someone that suffers at the far end of the scale and is wheelchair bound then they would not have made it into the centre of london on a couple of hours notice!

This is great positive awareness.

[Mdaisy in reply to desquinn]

I agree however must be honest wish she had mentioned it can be debilitating and completely disabling for some ....

[Hidden in reply to desquinn]

Yes I get you desquin an on a positive note its good she mentioned paceing but just feel as an example she doesn't come across as too bad

[Hidden]

I was willing her to say its different and can be really debillatating

[Hidden]

Iv already had a text from a mate saying are they sure you have fibro as you seem much worse!! That's after watching that

[Hidden]

I can no longer work I wish I could I went back to work a couple of years bk against my doctors wishes, then had to give it up as I couldn't do it :0( all that got me was a battle with DWP for 18 months till they finally gave me esp an pip,I just wish the lady had side fibro is different for everyone an is really debilitating for a lot of people

[Mdaisy]

I understand Hidden as I say I would have liked to hear her explain her own experience of Fibro but also mention how it can also affects others meaning they cannot work, do social activities etc.

There is a spectrum of Fibro and people with Fibromyalgia live with different severities of symptoms .... In my own personal opinion I would have preferred this to be stated.

I support any awareness in any form but I am also voicing my thoughts honestly as we all do here on HU.

Emma

[desquinn Partner Volunteer FMAUK Trustee in reply to Mdaisy]

She came in cold to this with little or no preparation and straight onto live TV. It's difficult to do live media and stressful. I am very happy with how she came across in what was a structured interview.

[Mdaisy in reply to desquinn]

I am sure she did well under the circumstances I am not criticising in shape or form. Awareness is great and it's really brave to talk live on the news..... but I am sorry but these are my honest views I just wish the differences in severity were mentioned.

[desquinn Partner Volunteer FMAUK Trustee in reply to Mdaisy]

A post / interview can always be better but live is live. She is not a professional spokesperson and I think she did well.

As the person who asked her to take part I would be happy for her to do it again on our behalf. When I have a chat with her next I will have done points to mention but I think i it was a positive contribution.

[Mdaisy in reply to desquinn]

Please know I am not criticising desquinn just sharing my initial thoughts. Nobody can remember everything they wish to say especially on live TV ... She was incredibly composed and spoke clearly and all awareness is positive

[Hidden in reply to desquinn]

Sorry maybe I seem a bit harsh,yes its not easy to go on TV so fair play to her,I guess there's just so little chance to get it across to people I just Really want people to understand fibro:0/

[desquinn Partner Volunteer FMAUK Trustee in reply to Hidden]

So do I 😂 but media is fun to deal with. We got a call at 1.30 to find some one and then get back to them. A Dr was meant to be taking part. What gets talked about is entirely up to them and can change.

So I am happy with what came over in the peice.

[Hidden in reply to desquinn]

Ah I didn't realise it was all so rushed now I know the facts I'll hold my hands up ( ouch) she did well an it was shocking to hear 1 in 25 peeps have it but all in all she managed to fit a lot in to a little time I only wish she had side how debilitating it can be fr some apart from that it was all good plz tell her that

[desquinn Partner Volunteer FMAUK Trustee in reply to Hidden]

Media is always like that unfortunately

[Hidden in reply to desquinn]

I see.well it will be interesting to see the lady gaga film

[Hidden in reply to desquinn]

I was rattled as I side a friend watched it an texted me saying were they sure I had fibro, as I seem much worse that the lady on 5 ,I don't want people thinking oh its not to bad

[desquinn Partner Volunteer FMAUK Trustee in reply to Hidden]

We can't control what others think. But we have five things before on how makeup and such can make everything look fine. A five minute segment is always going to have issues like this

[Hidden in reply to desquinn]

Yes I see now,well its got people talking so that's a good thing.iv been down in the dumps myself this last WK its got me out the dumps a bit just chatting so Thanks

[Hidden]

Its a battle for most people an when you have a medical assessment its hard with fibro being such a for want of a better word/ confusing iv just put in for the higher rate of mobility,well my nurse write to them .we've filled in the form an I'm expecting a battle !

[Nannydoris]

When celebrty gets a illness it helps my daughter has ms. when sharon osborns son anounced he had ms.it shows it dosnt care who it attacks.

[Fallabella]

Noooooo !!!! Just read your post so I've missed it 😤

[Reykua]

Wow. Found Matt's interview with guest - Louisa Dixon - Dancer/teacher with Extant.org.uk quite disappointing. Like many people, her description of her experience of this condition did not resonate with me and I felt she somehow made light of My situation and perhpas (Lady Gaga's). These are some of the reasons why the Disability Benefits officers don't take this condition as seriously as most of us would like. Grrrrr.