Discussion in 'General ME/CFS News' started by Sherby, Nov 1, 2010.
Extraordinary - did the MEA say what AfME's motivation was?
Missed the point these lightning people - short term (cheer us up - gosh I feel better) whilst a long term biological disease persists.
More than extraordinary ................I have just been informed that the person who e-mailed me about this made a typo. It was the MEA and not Action. Sorry about that everyone. The MEA, of course, found that about just as many people were seriously harmed by LP as gained any benefit.
Given that people with CCD ME are very unlikely to attempt LP in the first place, the figure is probabaly not representative of the potential harm that could be caused by this programme if it were to be foisted on us by the NHS.
I hope people will telephone the Radio Berkshire on Thursday.
Thanks, CG (I will go and correct the AfME rumour I just started on another thread, if I can find it!).
I didn't properly understand the MEA news item - maybe it means that Dr Shepherd is appearing on the programme, in which case he'll presumably be giving the LP a stiff kicking.
The MEA website says that at present, this item is planned for 9.40am on Thursday 11 November during the Anne Diamond programme.
But the Anne Diamond Show on Radio Berkshire doesn't start until 10am. Andrew Peach is the broadcaster from 7am to 10 am.
BBC broadcasting policy these days is to present a "balanced" range of views, ie views for, then views against, with equal time for each - in this instance that means giving equal time to Lightning and Phil Parker if he's interviewed.
The other policy is to give a story of "hope".
Not investigative or critical journalism on this kind of program.
The other (broadcasting) policy is to give a story of "hope".
In other words "Let them eat hope"
The media Story last week WAS the UK blood ban and XMRV. That’s what Charles Shepherd was interviewed about on Radio Berkshire on the 1st November. It was the broadcaster Esther Rantzen who diverted the “story” to Lighting Process later in the program.
Many of the complaints to Radio Berkshire asked for a correction of the wrong information Esther Rantzen gave on ME recovery rates (she said 60% of ME sufferers recovered) and to ask for an on air apology from Rantzen for giving the wrong information and for blatantly promoting the commercial Lightning Process on BBC Radio.
Esther Rantzen has a conflict of interests re Lightning as she is President of the children’s ME charity AYME. AYME is on the External Advisory Group for the Lightning Trial.
The External Advisory Group for the Lightning Trial is supposed to be independent.
It may be seen that Esther Rantzen has compromised that independence by her on air promotion of Lightning Process.
“In the November edition of LINK Newsletter (Issue 40), the Association of Young People with M.E. (AYME) has welcomed the decision by South West 2 Research Ethics Committee to grant ethical approval for the controversial pilot study around the application of the Lightning Process in children as young as 12.”
AYME is on the Lightning Trial External Advisory Group
How come the media Story has been diverted from the Blood ban and XMRV, and to "for or against" the Lightning Process???
Esther Rantzens Daughters first "ME cure" as reported by Emily herself in the Daily Mail 2001:
ME: how one woman found a cure that works for her
by EMILY WILCOX, Daily Mail
Emily Wilcox, the 23-year-old daughter of Esther Rantzen, who was diagnosed with ME at the age of 17, reveals what she believes worked for her.
After years of suffering ME, Emily Wilcox can go to work and socialise…..’
.....‘Cognitive behaviour therapy, a structured form of positive thinking taught by a trained therapist, is mistrusted by some ME sufferers. But as well as the physical symptoms of ME, there are other issues such as sleep loss, anxiety and fear. CBT tackles these and so can remove some of the barriers to recovery.
After a couple of years living with ME, you are likely to feel gloomy. This happened to me and makes me sure that depression is a symptom, not a cause, of the illness.
Graded exercise must be tailored to the individual patient's health. It can mean sitting up in bed, walking across a room more often during the day and building up your walking. This is a practice that has been used by my consultant for years at the National ME Centre in Essex.
When I was bedbound, graded exercise at first meant being lifted from my bed to sit in a chair for 15 minutes a day. Over the next year, I built up my strength until I could walk around the house unaided.
Sometimes, they reach this stage precisely because they have exercised inappropriately, perhaps doing aerobics to try to revive their energy when they needed to rest.
In my case, when I first noticed my sluggishness, I sweated it out in the multi-gym but made myself only more achy and tired. In fact, gentle exercise started to stimulate my energy when I alternated it with half-hour rests throughout the day.’
“If, five years ago, someone had given me a magic pill that cured me totally, I would have put on my knee-length boots and joined my friends to dance the night away - leaving my anxiety and depression to languish on the sofa without me.
As it is, my body has healed itself without much medical intervention. If only the doctors knew how.”
Contact the Association Of Young People With ME, tel: 01908 373 300; www.ayme. org.uk.'
Emily Wilcox had already reported in the Daily Mail that she was "75% recovered" in the year 2000:
The Daily Mail June 6th 2000:
I no longer feel like a freak” Emily Wilcox
http://www.thefreelibrary.com/I no longer feel like a freak.-a0109631398
‘For they are signs that she is finally recovering from her very public, six-year battle with ME - Myalgic Encephalomyelitis
myalgic encephalomyelitis - a condition now more commonly known as Chronic Fatigue Syndromechronic fatigue syndrome (CFS), collection of persistent, debilitating symptoms, the most notable of which is severe, lasting fatigue. In other countries it is known variously as myalgic encephalomyelitis, chronic fatigue and immune dysfunction syndrome, and
..... Click the link for more information..
It was this crippling illness that reduced Emily from a lively, attractive and intelligent young girl into one who didn't even have the energy to get out of bed, or drag a comb through her long, brunette hair.
Today, six years on, her recovery appears quite remarkable. For the first time since she was 16 she can walk more than a few steps down the road, travel on the Tube, go shopping or even enjoy a coffee out.
She is overjoyed when she tells you that last week she walked into a pub like a normal person, instead of being pushed in a wheelchair.
tr.v. exhilarated, exhilarating, exhilarates
1. To cause to feel happily refreshed and energetic; elate: We were exhilarated by the cool, pine-scented air.
..... Click the link for more information. with her progress, she now looks forward to the day when she will go out on her first proper date.
THIS is the happiest I have been since I was a teenager, before I developed ME. Other things that people take for granted fill me with absolute euphoria.
Watching television in my own room, plugging the kettle in the wall, reading a book, it is all fantastic, because for years I was incapable of doing anything,' says Emily, who adds that she is now 75pc recovered.’
Clarification from the MEA about Radio Berkshire interview on the 11th November
BBC Radio Berkshire, 11 Nov 2010. Corrected information about Dr Shepherds interview.
by tonybritton on November 10, 2010
We reported yesterday that MEA medical adviser Dr Charles Shepherd will be interviewed on BBC Radio Berkshire tomorrow morning (Thursday) at about 9.40am during the Anne Diamond Show.
We have now double-checked with the radio station and discovered that, while Dr Shepherd will be interviewed by Anne Diamond at 9.40am, this will be a pre-recorded interview and that the item will not go out until about 11.45am. Anne Diamond hosts the mid-morning show on BBC Radio Berkshire between 10am and 1pm.
Our apologies for the misleading information.
BBC Radio Berkshire can be listened to live on the BBC website at http://news.bbc.co.uk/local/berkshire/hi/tv_and_radio/
It still isn't clear what the focus of this "follow-up" interview will be or whether any other contributors have been invited to speak live, or pre-recorded, other than Dr Shepherd.
From Tony Britton on MEA Facebook Wall
Tony Britton I have just found out that the pre-recording this morning will be Anne Diamond interviewing both Dr Shepherd AND Professor Leslie Findley.
Anybody know who Prof Findley is and what sort of line he is likely to take?
Suzy Chapman has an article about him and LP:
doesn't look good....
15 minutes now recorded with Anne Diamond and Leslie Findley.
Briefly discussed ME/CFS in general, neurological classification, need for biomedical research and sub-grouping, MRC Expert Group, Lightning Process and Prognosis.
I think it went OK.
Due for transmission at about 11.45am
Not broadcast yet (12 noon)
No, it doesn't.
@ 12 noon, Diamond has just said "ME coming up".
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