ME Post: Carers of children with ME 'accused of fabrication' via BBC News

[Mdaisy]

Action for ME presents it's findings from a recent survey. An investigation of the survey and treatments for ME is on Radio 4's File on 4 on Tuesday at 20:00 BST

Sonya Chowdhury, CEO of Action for ME, who herself has children living with ME said 'If people are not believing a child about an illness even when there is a diagnosis, those children are facing a double whammy.Not only have they had their lives stolen as a result of illness, they've had their lives affected and traumatised as a result of the system"

Read more statements in relation to this survey by clicking the link below.......

Edited by Admin *

We sooooo.................need a button to show our disapproval to these findings ,so parents/guardians/carers feel like they are labelled as Munchausen Syndrome by Proxy by all accounts!!

However on the positive side the charity is highlighting the issue using the BBC platform and will be discussing it tonight. Tune in if you'd like to listen to the debate about these awful statistics

Sending best wishes to you all

Emma

* Message from Admin

If you would like a copy of the website link please pm Mdaisy for it

Many thanks

Admin

**As I am not always available by message you can also Google Carers of children with ME accused of fabrication via BBC News

[Hidden]

You really couldnt make this nonsense up (wanted to put in a word beginning with S). An adult ME sufferer.xx

[Mdaisy in reply to Hidden]

Let's hope the debate on BBC Radio 4 addresses the findings and explains that Health Care Professionals need to change their dinosaur views to these children with ME and of course Adults as the stigma still continues. The person who wrote the headline 'yuppie flu' in the 80's in mainstream media really changed the opinions of the UK, and not in a positive way at all !

We need to fight for change for us and for the young generation !!

[Hidden in reply to Mdaisy]

Ive had ME for 11yrs now managed to work for about 7yrs then along came fibro and Ive not worked for just over a year again..Im finding that the stigma still continues in the same way after 11yrs...why are treatment plans left to the GPs personal viewpoint instead of being standardised.

Im tired of it all, but will write to my MP yet again when I feel up to it, this old girl is not ready to roll over and play dead just yet...especially as I think my daughter is a prime candidate..although shes not a child..shes still my baby though.

Death/extinction to all Dinosaurs lol.x

[Mdaisy in reply to Hidden]

These antiquated views definitely need to become extinct and maybe a stimulation suit or similar for the Health Professionals to live a day in our shoes might make them truly understand !!

I will continue to lobby MPs plus I tweet to shows that talk about these debates with honesty like The Wright Stuff and I am so outraged today that children are being treated this way I've tweeted others too!

[Hidden in reply to Mdaisy]

The very thought of that has made me lol.x

[Mdaisy in reply to Hidden]

I know, I thought afterwards they would be walking around in a suit full of pins and sand !!! Poor children and carers receiving stigma that continues from the 80's - surely these views should be so out of date now, yet people experience this daily still to this day!

[Hidden in reply to Mdaisy]

Its bad enough being an adult but at least we can attempt to stand up for ourselves (Ive just changed Docs) kids cant! I really dont get it..whether the cause is physiological or psychological the symptoms are real and should be treated accordingly!! Majority of Health Professionals will look pretty stupid when the real cause is identified!

[Mdaisy]

UPDATE: The BBC File on 4 debate is now available on the website - Listen to the discussion by visiting the BBC Radio 4 website. Also join discussion on social media using the #fileon4

to see people's reactions to the radio broadcast

[TheAuthor in reply to Mdaisy]

Thank you Mdaisy my friend that was very interesting. Thank you so much for sharing.

All my hopes and dreams for you

Ken x