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.