Ha! I knew it. No miracles there.

I love this story in the Daily Mail by Esther Rantzen about her daughter’s ME because so often she’s been used in the media as proof positive that the Lightning Process cures ME and is somewhat of a miracle.  This story shows it’s simply not true.

Not only does Esther’s daughter admit that she was having to force herself through exhaustion to function after the Lightning Process and we’re told that it helped but it didn’t cure – but she’s now discovered she’s been an undiagnosed coeliac all this time.  A condition which certainly seems to account for some, if not all, of her ME symptoms. LP didn’t make her healthy again.

In the years since my recovery in 2006, I’ve been used to secretly feeling I have to drag myself through life, forcing my body to be active and using mind over matter to ‘fake it till I feel it’.” Emily Rantzen – Daily Mail, 12 February 2012

Dragging yourself through life and faking it to you feel it doesn’t qualify as cure in my book yet LP have continued to herald this case over the years as proof that LP cures ME.

Emily had severe symptoms and it was carefully managed hospital treatment and pacing over many many years that got her to a point where she had improved enough to be able to walk.  Only at that point did she try LP and although it gave her an improvement she still had to pace carefully with relapse always a constant threat.  That doesn’t qualify as cure to me and it doesn’t qualify as anymore a successful treatment than using pacing perhaps with CBT which you can get for free.

“… she was imprisoned  –  bed-bound, lying in a darkened room, unable to read, write or even to speak.

At that point she went to hospital, where they pushed her by baby-steps, one word at a time, one more minute of light each day, until she progressed into a wheelchair, and then on to her feet…

And she continued to improve  –  slowly, year by year. But it was through management and willpower, not treatment and cure. As with many families battling an illness for which there is no known treatment, we were offered countless ‘miracle cures’….

Since neither she nor I are attracted by unproven complementary mumbo-jumbo, we politely refused. But when a friend and fellow ME sufferer told us about the positive results of the Lightning Process (a form of cognitive behavioural therapy or neuro-linguistic programming), Emily decided to try it.

It worked, for her, brilliantly. It showed her a way to combat the symptoms that were overwhelming her. So now, at last, she has the energy to catch up on the education she lost, and she is hugely enjoying studying for a degree in psychology. She still has to pace herself – tiredness is a constant background to her life, carrying with it the dread that if she exhausts herself, she might relapse again.” Esther Rantzen – Daily Mail, 12 February 2012

That coeliac disease has played a major part in her ill health and nobody had tested for  before is staggering.  But then we know we’re not routinely tested for such things either as ME sufferers.

It’s not clear yet whether coelic will prove to be the root cause of all Emily’s problems or a contributing factor.  For her sake I hope she finds it is the answer as she can get on with her life knowing her to manage her condition.

But it does raise questions about how many other people have underlying treatable conditions that are just not looked for or noticed.  And how many of those with their ME mis-diagnosis respond well to treatments, therapies and research trials therefore skewing results. I’m not going to get into that right now as I’m not wanting to start off on the “faith in my diagnosis” dialogue again.

What I really want to take from this article though is that LP can’t uphold Esther Rantzen’s daughter as cured by the process any longer.  I guess it won’t stop them from trying or from using it to show they can cure any condition now she has a different diagnosis.

For me after all those in your face articles saying this could cure people like me I’m so pleased to see proof that it didn’t in fact cure her either.  It helped, but it didn’t make her well.  And it didn’t take her from being bedridden to active – the NHS, many many years passing and her own determination did that.

 

Just in case you want to leave a comment saying LP or related therapies are wonderful please note I won’t be publishing such comments so don’t bother. I’m not interested in therapies that want me to risk what little function I have with no proven results and which pays no attention to the physical strains and risks their therapy exposes me to.  My blog, my decision.

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8 Responses to “Ha! I knew it. No miracles there.”


  1. 1 ashy February 14, 2011 at 11:26 am

    Yes I read this too – looking at the comments on the article (I only read a few) it seems the ME community have some animosity (sp) towards Esther! For good reason. I cannot beleive the NHS sometimes actually recommends LP – for all the sound biomedical research they could be acting on, it is really ridiculous.

    I think it is really shameful that we are not tested for Coeliac disease (and Lyme) as part of our diagnosis, and many other things too (don’t get me started!). So many years of lives potentially wasted for want of such simple tests.

    Like your disclaimer!

  2. 2 cusp February 14, 2011 at 3:50 pm

    Interesting that you picked this up too. I cannot begin to tell you how angry I was when I read this article…almost incandescent with fury. Bl**dy Rantzen !!!……she who, for years, has held herself up as the champion of , as the person who will settle scores for the ‘little man’ has ‘pulled the wool’ one time too many with all this guff about her daughter’s miracle cures.

    First it was Dr Findley, then LP and now its coeliac disease. I’ve been on a GF diet for the past 26 years, and whilst it means I don’t get worse, I don’t get any better either. I found out about my intolernace to gluten through a homeopath and when, 10 years ago, I asked my GP to test me for coeliacs he said it was so long since I’d eaten wheat (etc) that it wasnt worth doing) unless I’d eat wheat etc again for a min of 6 weeks. Knowing how ill it made me before the M.E. kicked in, I couldn’t do that.

    What’s more galling in this article is all the people who may have shelled out for the LP based upon the recommendation of Rantzen….and then, at the end of this article, her daughter actually says that since doing LP it HASN’T been the miracle cure taht she and Mummmy talked about at all but that she’s been really struggling.

    I feel for the daughter and for Rantzen…any mother really wants to see their sick child get better and a belief that this has happened may, I suppose (being generous) may skew better judgement but surely, a woman of Rantzen’s experience, maturity and education can see that she has been pulling the wool over peoples eyes.

    PROPER testing for coeliacs and thyroid amongst those who are suspected of having M.E. may well lead to better diagnosis of all three conditions but in the meantime M.E. is still a kind of wastebasket diagnosis and will remain so until there is a proper definitive test.

  3. 3 Mary February 14, 2011 at 3:50 pm

    I hope that Emily feels a suitable level of guilt for allowing herself to be held up as a success story for LP (and thus a rod to beat the rest of us with) while “secretly” being fully aware that she wasn’t cured at all.

  4. 4 hiddenlives February 14, 2011 at 5:14 pm

    Thank you so much for this post.

    I want to applaud you also for not giving space to those pushing their so-called cures and pointing out that these ideas can cost us dearly!

    “Just in case you want to leave a comment saying LP or related therapies are wonderful please note I won’t be publishing such comments so don’t bother. I’m not interested in therapies that want me to risk what little function I have with no proven results and which pays no attention to the physical strains and risks their therapy exposes me to. My blog, my decision.”

    Peace.

  5. 5 Jocelyn February 16, 2011 at 1:04 am

    Hi Rachel – I’ve come to visit a few times, but this is my first comment.

    That article popped up in my Google Alert this week, and I think I nearly rolled my eyes right out of their sockets when it got to the celiac diagnosis! My GP in the U.S. tested me for that very quickly when I first fell ill. I’m glad she’s having recovery from being correctly diagnosed, but the whole thing drove me crazy for the same reason it did you. Someday soon the actual biological cause will be proven beyond doubt and all these LP types will scurry away like the bugs they are.

    • 6 rachelcreative February 16, 2011 at 12:35 pm

      I nearly didn’t read the article because I’m so used to that particular British celebrity being the feature of articles well intentioned folks pass to me so I can be cured.

      I’d like to see celiac as part of routine testing for ME (I’m pretty sure I didn’t get tested for that by my doc at the beginning) as well as a heap of other things. But I guess diangosis by thorough exclusion is expensive!
      Thanks for reading and for commenting

  6. 7 Andy Von Pip April 17, 2012 at 1:23 pm

    I was tested for coeliacs when told I had ME but have avoided wheat and Gluten so it might not have shown up. Many of my symptoms sounded like her daughters, when I gave up carbs my skin cleared up etc ..

    Yes I’m a bit miffed because I too paid for the LP after reading Rantzens miracle cure stories, and it may have helped with stress (as would yoga or meditation) but it sure wasn’t no cure, although it left me a little lighter in the wallet.

  7. 8 Deirdre waters November 22, 2012 at 12:44 am

    I am so glad I read this article, I am the mother of a 12 year old son diagnosed with ME. I was literally going to sell my soul to pay for
    exspensive LP, that won’t be the case now. I will definetly be
    asking for a coeliac test which was not done just getting a doctor to agree my son had ME was hard enough.

    My son has been ill for a year and diagnosed a couple of months ago, he tried to go back to school part time which made him worse. I now know through research and articles like yours that only time and caring for him to let his body heal at its own pace is the only way forward.

    Thank you.


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