'ME has turned my life upside down'

[Min]

Article in UK newspaper:


http://www.telegraph.co.uk/health/10801148/ME-has-turned-my-life-upside-down.html

 

[maryb]

My heart breaks for these young people, I had a full life, children, a great career etc. before this illness got me.

The stupid doctors - because they couldn't diagnose fall back on, 'don't want to do it', 'are choosing not to do it' Like she didn't want to go to school, even though she loved netball and all her friends, a pony - really?? Idiots

Why can't they be honest and admit they haven't a clue what to do?

I really hope she gets through this - being young there is a lot of hope.

"Now, under the care of a service for ME patients in Bath, I’m on an activity management programme to cope with you. I am studying again, at a special medical tutor school, and I can usually manage 20 minutes before a break, then another 20 minutes. Sometimes even that is too much, but I try to go along anyway just to get out of the house and have the contact with other people. Afterwards, I do activities that are classed as yellow – less strenuous than tutoring – like watching repeat television shows or listening to music"

bless her for trying so hard, because she desperately wants to get better like we all do. If she does recover and god willing she does, the people running this programme will take the credit and yet she's the one who will have fought it and won.

 

[Cheesus]

Their general opinion was that I try to live as normal a life as possible. They advised me to return to school but the more I went, the worse I got, and eventually I had to drop out altogether.

The ignorance of doctors who think they know what they're doing is such a terribly harmful thing.

 

[minkeygirl]

What baffles me is why doctors are so close minded? For me it is the opposite of what they should be doing which is "no harm". How does it hurt them to actually look into it? This is rhetorical.

 

[SOC]

Threads merged.

 

[Snow Leopard]

This is one of the best descriptions of the experience of ME as a child that I have ever read, probably the best I have read in the "news".

I guess we can just hope that the tide will turn eventually.

 

[Bob]

I totally agree with Snow Leopard...

I think this is possibly the best article that I've ever read in a national media outlet about ME.

It's really worth a read...


(The Telegraph is a one of the UK's best selling broadsheet newspapers.)

'ME has turned my life upside down'
It was two years before Holly Buckley’s ME was taken seriously.
Now 16, she writes a letter to the illness that is thwarting her dreams
By Holly Buckley

The Telegraph (UK)
5th May 2014

http://www.telegraph.co.uk/health/10801148/ME-has-turned-my-life-upside-down.html

Dear ME,

Nothing I write could ever adequately describe the physical suffering and misery that you have brought to me and my family over the past two and a half years. By writing this letter, I hope I am helping other people whose lives you have turned upside down so that they might feel less alone. I want healthy people, too, to understand what it actually means to have Myalgic Encephalopathy. You’re an illness that is still so terribly misunderstood.

 

[Firestormm]

Stay tuned for this Saturday's Telegraph Supplement. Likely to be a follow-up of some kind.