Ever had your diagnosis challenged as not genuine?

This is my response (published in the Meeting Place - NZ ME/CFS association), to a previous article challenging that the Lightning Process can work with ME. My previous post gives the context of the letter.

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There has been a lot written about the Lightning Process over the last 10 years and it certainly has the ability to generate a lot of emotion. However the thing that I wanted to talk about is not so much the Lightning Process but how others respond to people that take the training.

I first witnessed this response when my wife recovered from ME/CFS and have indirectly seen in many forms in the years since. To state it simply some people believe if you get well from ME/CFS by using the Lightning Process you never had the 'geniune' ME/CFS (even if your diagnosis came from a leading ME/CFS specialist).

Firstly, I am not an expert in diagnosing ME/CFS and would never claim to be. It is a diagnosis of exclusion requiring medical training. The journey of getting a good diagnosis is frustrating but it is important. You have to rule out other possible issues. You have to know what you are dealing with and so the adoption of the Canadian Criteria for a diagnosis standard is a great step to rule out other possible issues.

Unless a biological marker is found diagnosis will remain a contentious area. So obviously there needs to be more research/funding. For too long the field has suffered from lack of research stemming from the bad old days where ME/CFS was seen as ‘yuppie flu’ or ‘all in the mind’.

So I don’t diagnose the people I work with. I leave that up to the GPs and medical specialists. The people I see come to me with a formal diagnosis. Many have gone on a long journey before they find a doctor with experience with ME/CFS.

I am baffled then that those who get success with the Lightning Process suddenly have the accuracy of their diagnosis challenged. It is as though getting well automatically invalidates any ME/CFS diagnosis even though the diagnosis might have come from a highly regarded ME/CFS specialist.

It is unfortunately common for people who get success with the Lightning Process to have it suggested that they never had the ‘real thing’, and must have had something that mimicked ME/CFS like Glandular fever or some sort of psychological issue like depression. To accept this thinking requires you to acknowledge that the ‘mimicking condition’ has also fooled some of the top ME/CFS specialists in the country. And of course the next logical step is to be skeptical about every diagnosis.

What is most baffling to me is that this skepticism around people’s diagnosis comes from the very group that has experienced that sort of ‘diagnosis prejudice’ themselves and has fought such a long battle to have ME/CFS recognized as a real neurological disorder.

People who have suffered from ME/CFS have learnt to live with prejudices against their condition. When people get success with the Lightning Process they often have to learn to live with a new prejudice – from the most unlikely source – ME/CFS support groups and other ME/CFS sufferers. The response is often along the lines of "I'm glad you're well but you must never have had the real thing". To me this sounds like an ironic twist on a response that ME/CFS sufferers will be all too familiar with. "I am sorry you feel so bad, but ME/CFS isn't real so you must have something else".

How friends and family respond to people’s success is often a concern for those who do the Lightning Process training. Most have already seen on forums or newsletters how success is viewed. I know I don’t have to describe to readers how insulting it is to have something so real like ME/CFS passed off as ‘all in the mind’. Yet that is what some in the ME/CFS world are very quick to do with Lightning Process success stories. It just doesn’t make sense to me.

Comments like the one featured in the previous Meeting Place -‘Lightning process for many is just like deciding, after an appropriate time, to removing an elastoplast that once covered what was a naturally healing wound,” totally ignore a formal diagnosis and belittles the physical state they were in and the huge effort that these people put in during and after their training. Some of the people I see are in full-time care facilities, are housebound or unable to walk. Some are in constant pain, unable to handle lights, sound, chemicals. Many have lost jobs, friends and/or partners. And of course this all comes with the crushing physical and mental fatigue. In short, they experience the same spectrum of symptoms and the same diagnosis as your readers. The people I see are gutsy and I think deserve better than this.

For those who get well using the Lightning Process, the practical result of this critical reaction to their recovery is that they tend to distance themselves from all things ME/CFS. This tendency clearly impacts on any treatment surveys run by a ME Magazine or ME Website such as the one featured recently in Meeting Place.

I agree more clinical analysis is required but it makes more sense to analyse those doing the Lightning Process rather than those people who have done the Lightning Process and are still members of ME/CFS support groups. We know the Lightning Process doesn’t work for everybody. No drug, treatment or training does. Everyone is different and responds differently to things. We are complicated beings with a complicated physiology that it still much of a mystery. But from my personal experience of training people, then working with them for a year after their training - I would simply say that to dismiss the Lightning Process because it doesn’t fit in with your view of what is possible, is not good science.

If I was personally diagnosing people myself then the argument that those who get success didn’t have ME/CFS might be plausible. But I am not. They are getting their diagnosis from the same people your readers are.

The field of mind-body medicine is in its infancy. And a new understanding of how the brain and the body interact is opening up new possibilities.

I would encourage those who are up to reading to look at ‘The Brain that Changes itself’ (or find the available online documentaries about it) to see how the field of Neuroplasticity now radically changes our view on what is possible in health and the role our brains play. I see the Lightning Process as being part of that new movement. The Lightning Process is not affirmations, positive thinking or psychotherapy. Nor is it a miracle cure. It is a training that addresses how the body and brain interact and the influence we can have over our health.

Neuroplasticity has changed everything. The Multiple Sclerosis Resource Centre in the UK recently published an article about some of their members who have got success with the Lightning Process. (Read New Pathways Issue 61 May/June 2010) It is early days of course and lots more work needs to be done. But proceeding with caution is very different to dismissing things that don’t seem possible as it slows progress.

It is interesting that I can give a talk about the Lightning Process in a Chronic Pain Physiotherapy Department of a hospital and be seen as really offering something to the field of pain management / Fibromyalgia yet still be seen as some sort of charlatan by others.

My hope is that further research can be done in all areas of ME/CFS without bias. And on behalf of those who I have seen reclaim their lives, I would also suggest that until we fully understand ME/CFS, then it is not very scientific to assume that when someone gets success with ME/CFS (through whatever means) that they can’t have had it in the first place.

Ian Cleary

Lightning Process Practitioner