Thursday, 8 June 2006

Too Much Babbling

I can hardly listen to the radio because it's all just babbling and makes me crazy. A few days ago I turned on to hear a woman who'd had ME for four years saying she is completely cured after having lightning therapy. She has thrown away her wheelchair and cancelled her disability benefit. I am happy for her that she has recovered more or less instantly from whatever was wrong with her, but I just can't listen to this bullshit . . . you wouldn't attempt to cure MS or lupis with life coaching and NLP, so please stop peddling all this nonsense and giving false hope to people who are horribly ill! The lightning therapists concede that ME is physical, claiming we are stuck in an adrenaline loop of 'fight or flight' and that this is what is making us ill - and by retraining the way we think, we can stop the loop, and lo and behold, mow the lawn and climb a mountain. I agree that our adrenaline production is fucked (I am easily alarmed, constantly feel on red alert), and that conventional medicine still has nothing to offer, and that complimentary therapies can sometimes help alleviate symptoms (intravenous vitamin C helped me through a horrible spell), but talking about negative thought patterns to some well-meaning therapist is NOT going to cure you of ME. Over twenty years I've had a plasma exhange with steroid therapy (made me more ill than ever), anti-viral drugs, ACTH injections (they helped a bit), and God knows how many complimentary treatments, but the reality is, nothing yet shifts this illness, you can have remissions, your symptoms can vary wildly day to day, week to week, but in my experience, the illness dictates, always. They have uncovered an ME gene at Glasgow University, that sounds promising, that is honest research that could lead to a cure, it is worth media attention. But lightning therapy, fuck that for a game of soldiers, as we say in Scotland when something displeases us. (But having said all this, I do understand that people will try anything that might help them.)

© 2006 NMJ


Ciara said...

Hi nmj,

re lightning process, I just DON'T understand it either. Yes, our physiology is hypersensitive to adrenalin in ME, but it can't be the whole story. Can it??!!! What about gene and viral findings etc?

I'd challenge ANY therapist: treat me for free. No recovery, no fee. If I recover after therapy, I'll pay twice or three times the fee. None of them agree to this.


nmj said...

C, Thanks for corroborating what I said, I was really angry when I wrote that post, I just can't bear all the evangelical crap that goes along with these miracle 'cures', though between you and me and a million bloggers, I could probably do with some lightning treatment for dealing with bad relationships!

Anonymous said...

I don't know what to think about it all. If we were in an adrenaline loop, wouldn't doctors and scientists have noticed this already?
But on the website there are lots of testimonials that seem really genuine.

I wish there could be a proper trial to see if it really works, and if it does really work, we could all go and do it.

nmj said...

hey anonymous, i can't help thinking that the lightning process is just another fashionable treatment -in late eighties it was all anti-candida diets, and people were claiming complete recoveries, when in fact they didn't have ME in first place... i've also read the testimonials on the website, and it seems that these people genuinely did have ME in varying degrees of severity, but it scares me a bit that we are being asked to be 'responsible' for our symptoms by controlling our thoughts, it seems absurd in fact! when i have had severe relapses over the years, it has NOT been because i was worrying about relapsing it's simply because i had overdone it . . .i could understand if this therapy was helping people feel less panicky, but stopping the entire illness more or less instantly is simply baffling, but then the whole illness is baffling & maybe i am being too dismissive... i agree with ciara, treat me for free & i'll pay double or triple to be not holding my breath though!

Anonymous said...

nmj - I wish we could get an opinion from one of the top ME doctors.

nmj said...

The adrenalin loop is interesting though . . . the two treatments which have both helped me a bit were: intravenous vitamin C which I believe can reduce levels of stress-induced cortisone; and also ACTH injections which I think would *increase* the levels of cortisol, so why they both helped I do not know, but the effect was instant, especially the ACTH, I went from feeling like I was dying to feeling like I might live another day, this was in early eighties at one my most ill points.

Digitalesse said...

If anything has pissed me off in recent months it's this cult-like evangelical lightning process. I've had so much grief about this frome one of my local ME group members who stated that people were blocking their recovery by their 'self-limiting beliefs'. I mean, it's a fucking support group and he was coming out with crap like this.

The fact is there are many illnesses and conditions that come under the CFS umbrella - one person's slow recovery from glandular fever is another person's 'ME', for example.

I've been ill for a long time and I've heard of many hyped up miracle cures, but if it's a miracle today, it will still be a miracle in a year's time. Magnesium injections, anyone?

I have also stated to my local ME group that any lightning process practioner can come to my house and do this therapy for free. Bring it on.