UK Radio feature on ME

[blackbird]

http://www.bbc.co.uk/programmes/p0021klw

Lunch with Ed Doolan
(broadcast in the West Midlands region of the UK)

Guests were:
Dr. Charles Shepard (author of 'Living with M.E.)
Tony Britton (ME Association)
Natalie (sufferer)

Only available in the UK I think (BBC) and only for a few days by the look of it.
Catch it while you can.

The M.E feature starts at about 1hr 15mins in.

 

[fds66]

Which day was it on?

Edit - found it
1/12/09 starts at about 1:20:45

 

[blackbird]

Sorry about that.

I didn't want to link to the pop-out player in case it didn't work.
I meant to put the date in but forgot.

 

[fds66]

No probelm Blackbird - thanks for spotting it. I've just listened to it and I think it was a good discussion.

 

[Min]

Thank you for posting this, it was a very good discussion but the girl talking only seems moderately affected now. We should not only be relying on management techniques, we should have biomedical treatment.

I'm glad Dr Shepherd pointed out that there are no services for the severely affected; he should have pointed out that most people do not recover.

I'm glad too that he said some of his medical colleagues have their heads stuck in the sand.

 

[anne_likes_red]

I was alerted to this coming up on the MEA website

....couldn't listen to it on the 1st so thanks muchly for the link

 

[MEKoan]

I thought this was excellent! Thanks very much for linking!

 

[Sing]

Just listened from the USA

Just listened and was impressed!

To get to the right broadcast, scroll down a bit to 1/12/09. Then you have to push the sound cursor forward in time, to 1hr 20mins to get to the start of the interviews on ME.

Hope you can figure it out, because it is long and very informative.

Cecelia

 

[cold_taste_of_tears]

Dr Shephard didn't mention XMRV, very bad.
How could he forget? Maybe he forgot. LOL

His friends in the Department of Health look after him well it seems.
Politically correct as ever, and brings nothing new - heard it all before 20 years ago.

Pacing is common sense, and works on the psychiatric like that that patients have a boom and bust cycle. We don't pay tax in the UK for 'free' health care - to be advised to produce an 'activity diary'. Actually we do, but we shouldn't.

And wonders of wonders the radio guest 'Natalie' turns up and she's full of energy and getting better. Couldn't write the script better myself!
This EXACT scenario happened to me in state run hospital running a 'programme of management' for ME that had a 70% cure rate for bed ridden patients. A pretty 20yr old was ordered to come up to me in Hospital and tell me she used to be just like me too - but she cured herself with CBT/Pacing, and I can be like her too if I want to. My choice. That was in 1996.

Note they don't interview someone who's been in the Emergency Room over and over again, or someone with a catheter bag, as that would not tell the listener the real story.


''I was very severe until I learnt how to 'manage' the illness''
What does that statement mean to people listening? It's obvious.

Lets have people say that I was very severe with Lupus, until I managed it?
ERR, NO. What an insult to people severely affected by neuro immune disease.

I can manage my illness very well, if I don't I live in Hospital 24.7. End of story. Yet I am still bed ridden/house bound.

Terrible organised propaganda as ever, by the state run radio station.

Compare this rubbish interview with listening to Dr Judy, Dr Peterson, Dr Lerner.

Severity is caused by the severity of the disease process, not by patients behaviour, attitudes and beliefs leading them to miss manage.

Trash produce from the BBC, and my trash country.

Long live America, land of the free educated and the WPI without an agenda of disinformation and silence like the British Broadcasting Corporation.

Where's the interview with the patient with skin burns from laying in their own waste? Not politically correct, loses them votes - they won't play it.

If they did, then that would be reality. Reality is not helpful when you need to create a mirage.

 

[starryeyes]

What a shame they held to that line.

Cold, that is so unreal they sent that girl to talk you into CBT and GET. How Kafkaesque. You have really been through it.

tee

 

[garcia]

Totally agree with Ctot. Very disappointing. Same old, same old.

It sucks to be British.

 

[blackbird]

I'm surprised at the negative reactions to this.

Though fairly new to learning about ME, I've read a hell of lot.

Now, I don't think I'd trust a psychiatrist as far as I could spit them.
With the diagnosis methods as they are, I'm not even convinced I have it, in spite of seeing a specialist. So many seem to be rediagnosed after years of struggle.
Even with new research with great potential for diagnosis and treatment (unconfirmed though it is), you can still see that government and the NHS are barking up the wrong tree and making no progress.

But, having gone back and listened again, I still think this show gives a balanced view, and the guests concentrated as much as they could on emphasisng the importance of correct diagnosis, correct treatment (including suitable activity (it's a long piece and I didn't keep a tally, but if exercise was mentioned at all, I think activity was the word the guests used in the main)) and also to some degree the possible severity.

There is a Catch 22.
You can't really get someone with the severest symptoms on the radio.
The guest they did have wasn't making out that life was a bed of roses, but I guess a Radio show will only book a guest with a high chance they won't have to pull out.

I appreciate that I don't have severe ME.
I'm currently near housebound, by choice while I work out my limits.
I get a lift to the supermarket every couple of weeks to shop.
Because I have no car.
Also, no job, girlfriend now ex, and unless three's a cure, or I'm misdiagnosed, a very different future, that I still need to try and plan.

So I haven't experienced the worst.
But I am potentially looking down the road to it and would like to think I understand to some degree.

A lot of what I've read since I've been ill has made me very angry.
But if you're going to pick fights at all, you need to pick the right ones.
There are more than enough good targets I think.

 

[MEKoan]

I'm confused by the reaction, too. I assume I'm missing something.

The patient featured on Dr Oz was no more seriously affected than the one on the BBC. There was video of her sitting on a bench at a park and, judging by what was included of what she said, she seemed to be working. The two patients seem very similar in terms of severity of illness.

But, I understand that I may be unable to see this in context and I may have missed something. Nevertheless, I would be happy to have a piece like this on Canadian radio. We hear and see nothing at all.

 

[garcia]

The patient was good. She placed some good emphasis on e.g. stress intolerance, biomedical treatments but Shepherd wasn't at all good. No mention of how debilitating this disease can be, no mention of what causes ME/CFS, little mention of all the research thats going on. Just talked about lifestyle management. It's a complete joke.

They are still treating this as a lifetyle disease to be "managed", rather than as a progressive debilitating neurodegenerative disease most probably caused by a retrovirus.

 

[Katie]

Not to be too controversial, but for the first four years of my disease I was in a terrible state, everytime I felt even the tiniest bit better I would try and go back to school full time and then be ill again, not that I was 'better' when I tried to go back. It wasn't until I met a wonderful paediatrician that I learn how to 'manage' my illness and make the best of what I had and provide my body with the best conditions to do as well as it could. He was the first person I met who let me know that I didn't have to push, push, push and gave both me and my worried parents ideas on pacing and how to live with ME. There was no CBT about it but it was incredibly valuable and something that I feel should one of the first thing a newly diagnosed person needs to hear. It's about adaption, out thinking ME and planning ahead and not making yourself iller and trying to behave the way you think you should.

I know there is a lot more to ME than pacing and management, but it is something that helps. It's not helpful to reduce it down to just lifestyle management, all the other factors need to be publicised, understood and treated eventually. There also needs to be discussion of biomedical research and XMRV, but that's not a sure thing. What I'm trying to communicate is that in the effort to push other important factors forward into the limelight we might push back and devalue important coversations informing someone how to adapt to ME/CFS.

I would have been able to do a lot more in my first three years had I known how to approach ME/CFS and I would not have felt as lonely, useless and broken as I did as a fourteen-year-old girl until I was in my late teens. Lifestyle knowledge is an important factor, though I am looking forward to medical treatment too beyond typical supplements.

I think I could have written this post more eloquently but my brain is not thinking too well today. I would like to say that I'm not advocating that lifestyle management is all there is or that it is the key to getting better, but it does help maximise what you can do and lower the stress on your body. Here's to medical treatment in the future, cin cin.

 

[anne_likes_red]

I'm surprised at the negative reactions to this.

Couldn't agree more, and with lots more you said blackbird.

I listened from New Zealand, I was aware the programme was coming up and I was expecting to hear questions asked by listeners about the discovery of a retrovirus! Golden opportunity to raise awareness I would have thought.

Perhaps if someone had called in and ask abour XMRV Mr Shepherd would have had something to say about it. As far as I know his official stance is, same as many others, including in New Zealand where we consider we have relatively good care and treatment as ME patients.....that they're waiting for replication/further studies.

 

[MEKoan]

As far as I know his official stance is, same as many others, including in New Zealand where we consider we have relatively good care and treatment as ME patients.....that they're waiting for replication/further studies.

This seems a very smart official stance to adopt in an environment where there is an active lobby working to discredit one. Seems very wise not to hand anyone ammunition.

 

[flybro]

Seemed OK, but

Considering the way the nedia have handled this in the past. I thought it was quite good.

I think Natalie did well to convey her reality with this disease.

I think it's ridiculous that XMRV didn't get brought up by anyone in the know.

How obviously managed to exclude XMRV?

If any of us had heard the show was on, we would have phoned in about XMRV.

What stringent vetting procedures it must have taken to make sure XMRV didn't get mentioned.

So many support groups, charities and organisations, but none of us had a clue it was going to be aired.

The omission of XMRV says much about Dr Charles Sheppard relationship with the establishment, and his relationship with the ME CFS community as a whole.

Just my 2 penneth.