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Radio item about ME/CFS

Discussion in 'General ME/CFS News' started by Sherby, Nov 1, 2010.

  1. Sherby

    Sherby Sherby

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    Radio item about ME/CFS

    Esther Rantzen talks to Dr Charles Shepherd the medical advisor to the ME Association , can be heard
    on Radio BBC Berkshire http://www.bbc.co.uk/iplayer/radio/bbc_radio_berkshire

    Item starts at 1hr 49min and phone ins are scattered near the end of show.

    Dr Shepherd seems rather up-beat about this disease finally being taken seriously.

    He briefly mentions Nov 1st Blood ban and says that the MRC is now taking ME more seriously.

    Esther Rantzens daughter has had ME for many years. But Esther is not as clued up as she thinks.

    These are some of the facts she mentioned..

    People can spontaneously recover. 60% fully recover and 10 % remain ill.

    The lightening Process helped her daughter.

    One of the callers phoned, she briefly talked about donating to WPI. Esther suggested donating to AfME and The ME association .

    Somehow i just don't trust that the MRC is taking any further action that will benefit us.
     
  2. Wildcat

    Wildcat Senior Member

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    The “60%” recovery rate that Esther Rantzen quoted in the Radio Berkshire program was from Professor Leslie Findlay, as quoted by Esther’s daughter Emily Wilcox in the first “Emily’s cured” Daily Mail article below.



    Celebrity Esther Rantzen and her daughter Emily Wilcox claimed in the national paper, the Daily Mail, that Emily was cured of ME - TWICE.

    Cure number one was in 2001-2 and Esther and Emily put the recovery down to graded exercise as her consultant Professor Findlay told her that she would recover with it. The first cure article mentions that the Working Group was about to report its findings which would date the article early 2002. In a second Daily Mail story of late 2006-2007 Esther announced that Emily had been “Saved from a living death” and “cured” by Lightning Process in 2006.




    Cure number one 2001/2:

    http://www.dailymail.co.uk/health/article-79042/ME-woman-cure-works-her.html
    http://www.dailymail.co.uk/health/article-79042/ME-woman-cure-works-her.html#ixzz145f9D1Y9

    ME: how one woman found a cure that works for her
    by EMILY WILCOX, Daily Mail


    (Emily Wilcox, Esther Rantzen’s daughter): “….at the first meeting with my consultant, Professor Leslie Findley, he said ME is a self-correcting illness. Only 20 per cent of patients remain trapped in it for good. Of the remaining 80 per cent, 60 per cent make a complete return to health and the others have active lives, on condition they pace themselves. For a long time, I didn't believe these statistics, but now I am forced to admit that Professor Findley's optimism was justified. I have come back to life!
    “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”

    “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”



    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~





    So, in the first mail article (above) Emily states that graded exercise as advised by her consultant neurologist Dr (now Professor) Findlay was responsible for her recovery, or as the Mail puts it “cure” from ME.

    But four years later Esther Rantzen announced in the Mail that the structured graded exercise regime previously prescribed by her neurologist had made Emily much more ill than she was to begin with. Its not clear in the second Mail article if the neurologist Esther refers to is Professor Findlay or another doctor.

    Esther announces that Emily was “Saved from a living death” by Lightning (in 2006 it sounds like). In the second Daily Mail article Esther says that Emily improved by pushing herself a bit more everyday but then crashed very badly. Then Emily was ‘cured’ again by Lighting.





    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~



    Cure number 2 Daily Mail February 2007:
    http://www.dailymail.co.uk/health/article-434248/Saved-living-death.html#ixzz145qtUb7S

    Saved from a living death
    By ESTHER RANTZEN

    Emily revitalised, and Esther, the mother who never stopped believing

    For 14 years, Esther Rantzen's daughter Emily had her life destroyed by ME. Trapped in a wheelchair, wasting away, she wanted to die. Now, thanks to radical "mind over matter" therapy, she's cured herself.


    “For 14 years I have watched her struggling like a fly in a web while the sticky strands of fatigue paralysed her. Now at last I can say it: Emily is well”.


    …“Luckily our consultant neurologist was one of the few at that time - this was 12 years ago - who recognised ME as a genuine illness, and told us that Emily was a classic case. There wasn't much he could do, and he was quite honest about that. He told us that nobody knows what causes ME or how to cure it.
    He put her on a management course - to increase gradually what she could do - which she stuck to heroically, alternating two-hour periods of activity and rest all through the day.

    But in spite of all her efforts, I watched the illness take over her body. She became hypersensitive to light and noise so that she had to wear earplugs and sunglasses constantly, and we lined her curtains with blackout material.
    She lost the capacity to walk upstairs, so we installed a stairlift. When she was unable to walk at all, we got a wheelchair for her. In the end, she spent all day in bed, eyes shut, earplugs in. I used to come home from work and run to her room. She was sheet-white, and her limbs were cold.

    Desperate to try and find a way to keep her positive about the body that had become her prison, I would massage her legs, which felt completely lifeless. ME is not officially a life-threatening illness, but this was a living death.”

    “When I held her hands they were icy. As I watched the fatigue remorselessly overcome her, and she lay on the sofa each afternoon, and struggled to get up each morning, my heart sank like lead. I had seen all this before. Would we have to install the stairlift again and bring back the wheelchair?”


    “Six months ago we heard about the Lightning Process from Jill Moss who founded the Association for Young People with ME (AYME) and had seen it work well with a member of her family. As explained in Good Health last month, The Lightning Process is based on the theory that ME is an illness that affects the body's capacity to deal with adrenaline. This is the hormone the body releases when stressed - in people with ME the levels are abnormal, and they need to "train" their brain to normalise the body's response.

    The first step is to tackle the thoughts that trigger the stress reaction - halfway through a negative thought they have to tell themselves to stop. This stops the stress response, and in theory creates new connections in the brain, stimulating the production of endorphins - feel-good brain chemicals.

    At "600, the course - in Crouch End, London - wasn't cheap. But Jill doesn't believe in miracle cures any more than I do. She thought it was worthwhile, so Emily, now 28, enrolled. It took three days.

    On the day after Emily finished the course I went down to our kitchen and found she had got there before me. There was a sparkle in her eyes I hadn't seen since she was 14. I asked what had happened. "I've done the Lightning Process about 30 times since I got up," she told me.

    I continued to watch her all morning. Every few minutes she would talk to herself, coaching herself to withstand the fatigue.
    It's a process that takes effort, and I understand that it doesn't work for everyone.
    But with joy and relief I am now confident the Lightning Process has worked for Emily. After six months she has started a job, working with children. She has a full, active social life.

    I can give up being irrationally, stupidly positive and optimistic, because now, at last, I have a good reason. Emily is well.”



    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~




    The point is that the two Daily Mail stories don’t add up: either Emily was cured by graded exercise and ‘time’ in the early 2000s - or she was made more ill by graded exercise (or became more ill anyway) which Esther describes in the second article, but was then cured by Lighting in 2006. Or Esther and Emily can’t tell the difference between remission and recovery.


    At this rate Esther Rantzen’s daughter Emily Wilcox is due for her Third ME ‘cure’ next year in 2011! Keep your eyes peeled, it will be reported in florid detail in the Daily Mail!
     
  3. Wildcat

    Wildcat Senior Member

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    In the first Daily Mail article, Emily Wilcox speaks like an advertisement for Graded exersise and CBT, she had taken on board the UK orthdox medicial view of ME and adopted its faith in CBT/GET.

    In the Radio interview yesterday, Esther Rantzen speaks like an advertisement for Lighting Process.

    It makes me very uncomfortable to read those articles and hear Esther's radio statements yesterday praising Lighting - both Esther and Emily appeared to be mouthpeices for the big 'experts' - first Dr Findlay and now Phil Parker.

    If those were private views it would be one thing - but both Esther and Emily went public and those Mail stories influenced a huge number of people - especially the Lightning story. Phil Parker and the LP Trainers use the "Saved from a living death" story on their sites as a celebrity testimonial for LP.

    It was also disturbing hearing Esther trying to dominate the message about given on the radio program. The callers with ME did a good job of standing up to her whilst sick. But I thought Esther would have given them space to speak, instead of trying to impose her own message which was mostly about Lightning.
     
  4. free at last

    free at last Senior Member

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    Maybe adrenelinn activates xmrv and its this that has helped ? shes controlling it ? using psychology. shes in remssion, not cured, thats all. but thought she was cured before too, that was just remission as well. she will likely relapse again, even if its milder. I reckon.The illness plays tricks
     
  5. Enid

    Enid Senior Member

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    Odd to be "cured" twice - how can that be ? Some pretty loose talk going on here. Not helpful publicity at all.
     
  6. Min

    Min Senior Member

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    Advertising is not allowed on the BBC, & she was very blatant

    Complaints can be made to http://www.bbc.co.uk/complaints/homepage/

    & to Ofcom

    http://consumers.ofcom.org.uk/tell-us/

    She also stated that 60% of M.E. sufferers make a full recovery - the NICE guidelines state:

    "The Centre for Disease Control cited a review of published studies reporting recovery rates of 8% to 63% (median 40%), with full recovery being rare (5-10% achieving total remission)" Page 38 Full Guidelines.

    someone was telling porkies
     
  7. Sean

    Sean Senior Member

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    This is the public face of ME/CFS patients in the UK? No wonder you Brits are getting such a hose job.
     
  8. Enid

    Enid Senior Member

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    Why on earth is he interviewing her in the first place. Should speak to those who know.
     
  9. Wildcat

    Wildcat Senior Member

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    Esther Rantzen was the radio interviewer, she was standing in for Ann Diamond who usually presents the program on Radio Berkshire..

    The two articles in the Mail are long, so I gave some quotes from it in the post above.

    Esther’s Mail article in which she wrote that Lightning saved Emily from a living death is cited by Phil Parker and the Lightning Trainers in their LP promotions.
     
  10. Enid

    Enid Senior Member

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    It may be supportive (no cure) bit like my GP when asked "am I going bonkers" - No you are not.
     
  11. Enid

    Enid Senior Member

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    Before retiring into an Autumn garden (just about) I quietly condemn anyone (gosh so many here -with their pseudomumbojumbo). Wake up!. Your pathetic self posturing. There is a Medical problem to be rethought (why do you believe I'm a psychiatric case - cant remember the day and struggled to find home - but more intelligent than you). My Psycho could not do the Telegraph Crossword. No time of day - we are the joke of the international community.
     
  12. Wildcat

    Wildcat Senior Member

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    NLP coaches started invading the ME world in the UK about six or seven years ago - using double speak to claim their NLP/coaching/hypnosis 'cured' ME without using the word 'cure'.

    Theres no advertising mileage in saying that NLP, relaxation, life coaching 'helps' with living with chronic illness - that won't get them in the papers repeatedly - no, they claim cure or 'recovery' from ME. In the overcrowded NLP industry that was bound to make a splash.

    I'm astounded that anyone gives them the time of day.
     
  13. WillowJ

    WillowJ Senior Member

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    :(

    that's so sad
     
  14. lazybones

    lazybones

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    Esther Rantzen on radio Berkshire

    Now wouldn't it be something else if someone from USA complained to Radio Berkshire! The editor was amazed that I had heard the show from N. Ireland.
     
  15. Sasha

    Sasha Fine, thank you

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    Did you contact the editor to put in a complaint? If so, I'm curious about the response!
     
  16. Countrygirl

    Countrygirl Senior Member

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    Hello Sasha,

    Several of us have written or phoned the producer and have complained in strong terms. We have now recived two e-mails from him to say our complaints are being investigated. We are asking for a public apology on air. I doubt that will happen, but we hope that they will respond by broadcasting a more balanced programme on ME. We can but try. I think the producer was rather surprised to learn that people from all over the UK were listening in to his local radio station. A few e-mails from the US would shock him further. ;)
     
  17. Sasha

    Sasha Fine, thank you

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    Hi Countrygirl - that's brilliant that you all did that. Thank you!

    A while ago the local Nevada radio station did a couple of good interviews with people from the WPI which I listened to online and I emailed to thank them and ask for more. I said I was from the UK and that we were eager for coverage. I got a nice reply from the presenter and they did indeed follow up with a second interview which they said was in response to the huge interest shown by people emailing in. I think it really does make a difference.

    The BBC apologised to Bob Geldof & LiveAid this morning for misrepresenting them - just goes to show that they are sensitive to criticism when they broadcast something wrong. It's a pity they're less sensitive to critcism for not broadcasting at all on the story we all want covered (XMRV and biomedical stuff).
     
  18. Countrygirl

    Countrygirl Senior Member

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    The ME Association has announced on their web-site that Radio Berkshire is to do a follow up programme on LP and the recovery rates in ME. The programme is being hosted by Anne Diamond and is being broadcast live at 9.40 a.m. Thursday 11th November.

    This will be no doubt a chance for the LP advertising machinary to be launched to promote the process. Please, everyone who is able, be prepared to telephone the Radio with your experiences of LP, particularly if you are one of the 20% who relapsed severely as a result of undertaking the process or one of the many who found no benefit.

    http://news.bbc.co.uk/local/berkshire/hi/tv_and_radio/?forumid=331851

    Thanks,

    C.G.
     
  19. Sasha

    Sasha Fine, thank you

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    Hi Countrygirl - that's a good idea and I think it might be good to start a new thread in the Advocacy subforum called "Protest Nov 11 Radio Berkshire re Lightning Process" or something so that it gets attention.

    I had thought lots of people contacted Radio Berkshire to slam them for "advertising" LP. Surprised they're doing more.
     
  20. pictureofhealth

    pictureofhealth XMRV - L'Agent du Jour

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    Sounds to me that if they are doing a follow up 'on LP' instead of 'XMRV and the link to ME' that that is the opposite of what we were hoping for.
    Once again in the UK, the biomedical causation is being downplayed, but more importantly, the LP model has been given extra airtime.
    Great success - not. Sounds like they went to the SMC for advice.
     

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