Article: An MD on the Lightning Process

You can view the page at http://www.forums.aboutmecfs.org/content.php?114-An-MD-on-the-Lightning-Process

 

Cort, the issues can be summed up quite briefly:

1. It's unethical

If there is going to be a study undertaken, it should first be carried out using adults.
(See MRC Medical Resarch Involving Children)​

2. It's unethical

There is no data on which to assess likely benefit and potential risk to children with CFS/ME; with no data, parents, and children considered competent to give consent, are not in a position to give informed consent.​

3. It's unethical

The program invalidates the disease and the child's experience of illness by ignoring the child's symptoms and reframing them as something the child is only choosing "to do" and can therefore choose, or be trained "not to do".

That is psychological manipulation of a vulnerable patient group and it is shocking.​

And yet you express astonishment that this discussion is still continuing and stick a smiley on the end of it.

Absolutely....the fact that more and more 'professionals' are endorsing L.P is incredibly worrying. There have been several articles stating that M.E could be caused by an overproduction of Adreneline and by undertaking the L.P and controlling the 'fight or flight' mechanism through thought patterns the body then produces endorphines and reduces the adrenline output. This theroy is similar to the Amydgala retraining programme. In adults perhaps the adreneline theroy might explain certain symptoms but in children - their hormones and the glands that produce them are not fully developed yet. My niece is 8 years old and is showing signs of hormone inbalance already and is developing far too fast - if a child has problems such as this as well as M.E and is merely shoved onto an L.P program, blaming "thought patterns" for symptoms then whatever is underlying causing these symptoms will never be explored which is dangerous.

My M.E Clinic are champions for the Lightening Process, one doctor and my rheumotologist wanted to send me on the course due to experiencing really strange symptoms equating to something wrong with my adrenal gland. But my gut instince was that something is really not right. The M.E Clinic dismissed it as idopathic "pseudosymptoms", my G.P said it was agrophobia panic attacks (I worked in PR and media for years and have no social issues whatsoever!) and only on a desperate jaunt overseas to see a doctor did they find something wrong with my pituitary and want to rule out a possible pheochromocytoma. My G.P refuses to believe that there might be one of these present in my body due to the catecholamines test being inconclusive. The specalist I saw overseas wanted to repeat this test every month yet I am refused it over in the UK. Therefore by promoting the Lightening Process and not looking into patients actual symptoms, serious conditions such pheochromocytoma and even thryoid conditions will be chucked in the dustbin forever for patients if they carry on trialling it out and using it as a one size fits all treatment.

 

Bob
I am surprised that you think we need to explain that ME is different to vague "CFS" definitions. Surely we all know that and this is our (ME) forum not an all welcoming "fatigue" drop in centre like the ones run by the NHS in the name of ME.

Cort
please can you outline the purpose of this forum and whom it is supposed to be serving. Once and for all can you tell us whether you think a neuro immune disease and various stressed emotional psychological conditions should be carried, particularly here, under the same banner. I don't want a wishy washy mind body dualism answer. Lets put it like this, if this was an MS forum would you be happy with MS being grouped together under various fatigue state conditions. Cort in my opinion you are seriously running the risk of diluting this forum down into something that resembles the ME Association and various other so called ME advocacy groups. Why are you happy to do that?

If that is what it is I am not sure I want to be here anymore.

 

re Recovery and people saying they are better than they are on LP

OK a few examples of this problem. Participants are supposed to say they are no longer "doing ME". This is part of the process. A few comments from people who attended courses:

Here are some relevant comments from here

http://www.sayer.abel.co.uk/LP.html

We were told to cut off all contact with other M.E. sufferers and when asked about LP to say we were cured. We were told to ignore symptoms and keep saying we were cured regardless. I know this sounds crazy but the coach was excellent at his job of VERY high-pitched sales and the people he was selling to were very desperate to get better. The product he was selling us was positive thinking; nothing more, nothing less.

There are a lot of positive testimonials on the website. I have not studied them all but a lot of them have been written soon after completing the training, usually within several months. I must admit that I too would have written a glowing testimonial during the five weeks after because I was still 'geed up' by the process. Also, because the process instructs you to only concentrate on the positive, it is a very convenient method of filtering out any negative and adverse comments. For instance, Phil asked us to email him a few weeks after our training with a progress report but he specifically told us to only mention the positive things that had happened to us and not to mention any negative feelings, symptoms or experiences we'd had, obviously with the laudable aim of concentrating our minds on the positive. It also has the convenient benefit of providing purely positive testimonials for the LP

The first thing was to take responsibility for our illness. I had to stop saying I had M.E. Instead I have to say I am 'doing M.E'; I wasn't tired, I was 'doing tired and doing muscle aches' - the implication being if I am doing it I can stop doing it. I wasn't sure what I thought about this, but it didn't matter because I didn't get to put it into practice much on the course as you are not encouraged to talk about how you are. This was because we are going to concentrate on the positive, which at the time seemed fair enough.

She also told us that no matter how she feels she tells everyone she "feels fabulous". I wasn't quite ready to tell people I felt fabulous but equally I didn't tell anyone how much the first day had tired me because that is a negative thought and that must be countered, so I did my thirty processes, went for a walk and then to bed.

The second day when I turned up there were three big posters saying, "DON'T TALK ABOUT HOW YOU ARE UNTIL THE SESSION STARTS". I soon realised once it did start that is so the tutor can control everything. She didn't ask me if I felt better; she asked what I did the night before, I said, "I did the Process and I went for a walk." She said, "Sally, went for a walk, hooray!" - like it was a victory for the Lightning Process. But as I said, my M.E is moderate and I go for a walk every day, but no-one would have known.

Also, I realised when you fill in the form you have to say whether you question things. This is because they don't want anyone on the course who does. They need to control everything. You are not allowed to talk about how you are because that is being negative. In the session anything I even hinted to this effect was countered with the comment that I was being negative.

 

Bob
I am surprised that you think we need to explain that ME is different to vague "CFS" definitions. Surely we all know that and this is our (ME) forum not an all welcoming "fatigue" drop in centre like the ones run by the NHS in the name of ME.

Cort
please can you outline the purpose of this forum and whom it is supposed to be serving. Once and for all can you tell us whether you think a neuro immune disease and various stressed emotional psychological conditions should be carried, particularly here, under the same banner. I don't want a wishy washy mind body dualism answer. Lets put it like this, if this was an MS forum would you be happy with MS being grouped together under various fatigue state conditions. Cort in my opinion you are seriously running the risk of diluting this forum down into something that resembles the ME Association and various other so called ME advocacy groups. Why are you happy to do that?

If that is what it is I am not sure I want to be here anymore.

I'll second this, I'd also like to know the direction this forum is taking.

 

One more from elsewhere

Early on during the first session trainees are told that they must not say 'I have ME/CFS' - they are told they are 'doing ME/CFS'. I have no problem with this but remember this when watching videos and the people are asked on film "Do you have ME now?" People are expected to say 'No' - or they would be told they are being negative, something you are not allowed to be. "

"I would like to point out from our experience that trainees are only allowed to say positive things. So when the trainee tells the camera all the things they have done the day before, they are not allowed to say anything negative. For example someone may have walked half a mile, but they are stopped from saying how they may have struggled while doing this, or stopped for rests at every bench on the way

 

I am surprised that you think we need to explain that ME is different to vague "CFS" definitions. Surely we all know that and this is our (ME) forum not an all welcoming "fatigue" drop in centre like the ones run by the NHS in the name of ME.

Hi flex,

You and I, in our own minds, may know what we mean when we talk about the differences between ME and CFS... (although I'm not so sure that I do).
But other people may not have a clue what the differences are...
I was just suggesting to Gerwyn, for the sake of clarity for everyone who might stumble across this website, that we are all clear about what we mean when we use the terms ME and CFS when relating to a specific diagnostic criteria.
I just think it gives more clarity to the discussion, especially to people who may not know as much about ME or CFS as we do.

Gerwyn doesn't have to take any notice of my suggestion... it is just a point of discussion that I've raised.
Really all I'm pointing out is that he seems to be very firm in his own opinions, without fully explaining what he means or how he has come to those opinions.
I might agree with his opinions if I knew exactly what he meant.

I usually use the term 'ME' when I mean CFS/ME (UK NHS diagnosis)... and I know that many people on the forum use the term 'CFS' because they have a CFS diagnosis, whereas I would say they have 'ME', and Gerwyn, for example, might consider that they have ME if they conform to certain criteria.

And I'm not actually sure what Gerwyn does mean by 'ME', because I've never seen him clarify...
He might just be referring to the outbreaks, such as the Royal Free and Lake Tahoe outbreaks, whereas I would be referring to the ME diagnosed by the Canadian criteria.

It's all very confusing, and I'm simply suggesting that we try to make it less confusing...
This is just my opinion... and people don't have to agree with it... but a discussion might be nice.

Bob

 

I'll second this, I'd also like to know the direction this forum is taking.

Knackered, are you seconding the bit that relates to me?
If so, I have posted a reply which I hope clarifies my opinions.

 

with respect talk is cheap what we need is objective evidence of effectiveness and potential to do harm

I agree.........

 

LP summary Objective evidence of effectiveness none objective evidence of harm plenty

What is your definition of objective evidence?

 

Gerwyn:
with respect talk is cheap what we need is objective evidence of effectiveness and potential to do harm

I agree.........

Well, at least this is something that we can all agree on!

 

This is my first go at using the forums so bear with me. I am so angry with all this talk about LP. I have had M.E. for 10 years now and can honestly say I have tried EVERYTHING to get better. I attended a private clinic where numerous tests were done confirming low NK cells with severely decreased function and many active and latent infections. I know this does not prove I have M.E. but certainly points in that direction. I had an acute onset and went from a hardworking person to bedbound overnight.
In a desperate attempt to recover I decided to try LP after reading stories of severely affected M.E. patients who had recovered. It all sounded so convincing and after a phone consultation with a LP coach I felt very positive I was doing the right thing. I borrowed the money from my parents, 880.00 as I had long lost my job, and went for it.
There were 3 other m.e. patients at the same course none of these people nor myself recovered. The course was over 3 days from 10am-2pm with a break at lunchtime for tea and biscuits. We were told not to discuss the content of the course with each other during the breaks. We learned the 'affirmation' and stood on the floor on paper circles with key words written on them.
Here is the big secret of what we had to say while standing on paper circles - WHEN YOU FEEL A SYMPTOM
SHOUT- STOP! (stand on the paper STOP)
SAY- I HAVE A CHOICE ( stand on the paper CHOICE)
SAY- YOU CAN CHOOSE THE PIT OR THE LIFE YOU LOVE ( you then stand on the LIFE YOU LOVE circle)
SAY- I CHOOSE THE LIFE I LOVE
SAY- WELL DONE, YOU ARE A FANTASTIC GENIOUS, YOU ARE ON TRACK! I AM WITH YOU EVERY STEP OF THE
WAY (you are being your own coach here)
ASK YOURSELF - WHAT DO I WANT?
ANSWER YOURSELF- I WANT ENERGY AND HAPPYNESS LIKE (you say something that means energy etc. to you)
ASK YOURSELF- HOW WILL I GET THIS?
TELL YOURSELF- BY STOPPING EVERY NEGATIVE THOUGHT
EVERY NEGATIVE EMOTION
AND DOING THE LIGHTNING PROCESS.

There are a few more short affirmations and that's it you are cured of M.E. We all DID leave on the third day full of hope and newly found confidence and told that no-matter how we felt in the future ALWAYS SAY WERE WERE CURED OR THE PROCESS WILL NOT WORK !!!! These coaches are very good at their job but I can assure you they can not cure you of M.E. Think about it PAPER CIRCLES AND AFFIRMATIONS. The four of us all were 'high' for a few weeks or months and did indeed do more than usual but sadly all relapsed.

 

Bob
I am surprised that you think we need to explain that ME is different to vague "CFS" definitions. Surely we all know that and this is our (ME) forum not an all welcoming "fatigue" drop in centre like the ones run by the NHS in the name of ME.

Cort
please can you outline the purpose of this forum and whom it is supposed to be serving. Once and for all can you tell us whether you think a neuro immune disease and various stressed emotional psychological conditions should be carried, particularly here, under the same banner. I don't want a wishy washy mind body dualism answer. Lets put it like this, if this was an MS forum would you be happy with MS being grouped together under various fatigue state conditions. Cort in my opinion you are seriously running the risk of diluting this forum down into something that resembles the ME Association and various other so called ME advocacy groups. Why are you happy to do that?

If that is what it is I am not sure I want to be here anymore.

If this is too open ended for you then that's the way it is. MS is in an entirely different category - it has biomarkers, a recognized locus of central trauma.... CFS, on the other hand, has diagnostic criteria that allow many different types of people to be diagnosed with it. Even the Canadian Criteria allows that - Coxy, I believe noted that she had PEM and cognitive problems as did Berit. That will be as true as long as we don't have verifiable subset and can break the disease apart. (I'm hoping that the Treatment Review program we're trying to get together will help to identify those). So long as people are being diagnosed with CFS then they are welcome here to talk about their treatments - hopefully in a safe environment. That is the bottom line of these Forums.

If you need a less open environment then maybe its not for you. I would note that many many different treatments are expressed here. These threads draw an enormous amount of attention but quantitatively speaking they are at the very bottom of the list of treatments discussed here.

 

This is my first go at using the forums so bear with me. I am so angry with all this talk about LP. I have had M.E. for 10 years now and can honestly say I have tried EVERYTHING to get better. I attended a private clinic where numerous tests were done confirming low NK cells with severely decreased function and many active and latent infections. I know this does not prove I have M.E. but certainly points in that direction. I had an acute onset and went from a hardworking person to bedbound overnight.
In a desperate attempt to recover I decided to try LP after reading stories of severely affected M.E. patients who had recovered. It all sounded so convincing and after a phone consultation with a LP coach I felt very positive I was doing the right thing. I borrowed the money from my parents, 880.00 as I had long lost my job, and went for it.
There were 3 other m.e. patients at the same course none of these people nor myself recovered. The course was over 3 days from 10am-2pm with a break at lunchtime for tea and biscuits. We were told not to discuss the content of the course with each other during the breaks. We learned the 'affirmation' and stood on the floor on paper circles with key words written on them.
Here is the big secret of what we had to say while standing on paper circles - WHEN YOU FEEL A SYMPTOM
SHOUT- STOP! (stand on the paper STOP)
SAY- I HAVE A CHOICE ( stand on the paper CHOICE)
SAY- YOU CAN CHOOSE THE PIT OR THE LIFE YOU LOVE ( you then stand on the LIFE YOU LOVE circle)
SAY- I CHOOSE THE LIFE I LOVE
SAY- WELL DONE, YOU ARE A FANTASTIC GENIOUS, YOU ARE ON TRACK! I AM WITH YOU EVERY STEP OF THE
WAY (you are being your own coach here)
ASK YOURSELF - WHAT DO I WANT?
ANSWER YOURSELF- I WANT ENERGY AND HAPPYNESS LIKE (you say something that means energy etc. to you)
ASK YOURSELF- HOW WILL I GET THIS?
TELL YOURSELF- BY STOPPING EVERY NEGATIVE THOUGHT
EVERY NEGATIVE EMOTION
AND DOING THE LIGHTNING PROCESS.

There are a few more short affirmations and that's it you are cured of M.E. We all DID leave on the third day full of hope and newly found confidence and told that no-matter how we felt in the future ALWAYS SAY WERE WERE CURED OR THE PROCESS WILL NOT WORK !!!! These coaches are very good at their job but I can assure you they can not cure you of M.E. Think about it PAPER CIRCLES AND AFFIRMATIONS. The four of us all were 'high' for a few weeks or months and did indeed do more than usual but sadly all relapsed.

This is post is highly critical of the LP and that's fine! No one is personally denigrated. No one is accused of being a troll. No ones diagnosis is treated in a disparaging way.. This is a good post in my opinion.

 

Why astonished, Cort?

In the UK and elsewhere many of us share enormous concerns about the proposed pilot study for children when no RCTs have been carried out on adults - this pilot is due to start in September.

So discussion will continue at least until the pilot is halted. I should know in ten days or so, whether research ethics approval has been obtained or is pending - either way, discussion will continue, because many of us are very, very angry that Dr Crawley considers that it is OK to expose children as young as eight to this untested, unregulated program and we are not prepared to sit back and let it happen.

Suzy

I apologize if I sounded belittling. I simply thought LP had been pretty much been bashed to death here.

 

Hi Cort,

No answer yet from you in EM or PM, but as to ...

there are a lot of clear relevant definitions here

Philosophical Dictionary
http://www.maartensz.org/philosophy/Dictionary/Philosophical Dictionary.htm

Just a tip that just might help some for some...

Best,

Maarten.

I assume Gerwyn is talking about study evidence - of which there is none. If he's talking about anecdotal evidence I'm sure there's evidence on both sides. We have heard from two people that did improve from it and from people who didn't.

 

This is my first go at using the forums so bear with me.

Hi lazybones... a big big welcome to you... I'm glad that you decided to post a message...
(You've picked a bit of a stormy discussion forum for your first post! But your message is valuable.)
Hope you will continue to post messages,
Bob

 

Hi flex,

You and I, in our own minds, may know what we mean when we talk about the differences between ME and CFS... (although I'm not so sure that I do).
But other people may not have a clue what the differences are...
I was just suggesting to Gerwyn, for the sake of clarity for everyone who might stumble across this website, that we are all clear about what we mean when we use the terms ME and CFS when relating to a specific diagnostic criteria.
I just think it gives more clarity to the discussion, especially to people who may not know as much about ME or CFS as we do.

Gerwyn doesn't have to take any notice of my suggestion... it is just a point of discussion that I've raised.
Really all I'm pointing out is that he seems to be very firm in his own opinions, without fully explaining what he means or how he has come to those opinions.
I might be able to agree with him if I knew what he meant.

I use the term 'ME' when I mean CFS/ME (UK NHS diagnosis)... and I know that many people on the forum use the term 'CFS' when I would say 'ME' because they have a CFS diagnosis, but Gerwyn, for example, might consider that they have ME.

And I'm not actually sure what Gerwyn does mean by 'ME', because I've never seen him clarify...
He might just be referring to the outbreaks, such as the Royal Free and Lake Tahoe outbreaks, whereas I would be referring to the ME diagnosed by the Canadian criteria.

It's all very confusing, and I'm simply suggesting that we try to make it less confusing...

Bob -

The only criteria and definitions set forth for ME that I am aware of are those of Ramsay, Ramsay-Dowsett (very similar) and Hyde (rarely, if ever, used by other clinicians - no knock on Hyde, just a fact); the Canadian Consensus Criteria are for an entity they labelled ME/CFS that is almost the same as Ramsay ME, though less particular about onset type and suspected mechanism (though I think Ramsay would ultimately have approved of the CC Definition).

There is no such thing as a definition or diagnostic criteria for CFS/ME. The term "CFS/ME" was actually promoted by the Wessely school after they failed to get the term ME changed to CFS. (They rejected the notion that there was such a thing as ME, or else, like Reeves and the CDC, chose to define it as an acute neurological disease very different from the ACTUAL disease observed by Ramsay and others for decades -- rewriting or whitewashing history, as usual.)

Therefore Gerwyn and others really cannot specify further what they mean by ME, as there is not much difference between the few definitions of it. However, it would be useful for those who refer to CFS to define what they mean. Obviously not everyone is aware of the different criteria, but I think we can survive any confusion as long as those of us who know agree to stick to the accepted clinical definitions.

Clinically speaking, ME and CFS are different entities that overlap considerably as a result of the vagueness of the CFS definitions. The CC's ME/CFS captures those with Ramsay ME plus some more in its umbrella, but is far more restrictive than any "CFS" definition. It is really the only scientifically valuable definition among the currently 'popular' ones (i.e the "CFS" ones). And it is important to point out that many or most clinicians who diagnose CFS (or ME) do so without paying much attention to which criteria they are using, if indeed they use any criteria at all.

Bottom line: ME is ME, CC ME/CFS is CC ME/CFS (similar to or the same as ME), but who the heck knows what CFS is.. it depends on which of the definitions is used, and which of the groupings of subcriteria are satisfied by a given case -- and even then it is hopelessly vague.

Now, as regards scientific evaluation of the Lightning Process -- it is essential to know into which of the above categories the people who have claimed improvement with LP fall. It is also important to know their medical history in general, and that includes psychiatric history. But it is also important to consider the potential effects of the behavioral conditioning that is at the heart of LP, as these are designed to directly impact an individual's subjective appraisal of their own condition. There are a variety of ways people can be made to think they are better than they actually are; CBT research has revealed this (patients have reported improvement after CBT despite showing zero objective improvement in measurable functional ability). Therefore it is essential that NO ONE take the claims of improvement on LP or on any other behavioral therapy or treatment at face value.

If I understood you correctly (and I'm sorry if I did not), you seem to have had at least two major points this week: (1) that we should use terms that are as inclusive as possible within our general community, even if that means altering our definition of ME, and (2) that we must be more accepting of subjective experiences of other patients, without subjecting them to personal scrutiny if they post them here. But neither of these ideas is scientific, and neither will get us anywhere but into more confusion and further from a real understanding of any population in question.

 

The four of us all were 'high' for a few weeks or months and did indeed do more than usual but sadly all relapsed.

Hi lazybones,
You have given what seems like a very neutral, honest and balanced overview of the Lightning Process...
Based on your experience of LP, and taking the above comment into account, would you recommend the Lightning Process to anyone with CFS/ME?
If not, could you tell us why not please?
Bob

 

Hi Gerwyn,

CFS/ME (as diagnosed in the UK) is a vague disease/s because they do not use the Canadian criteria in the UK, but they still name it CFS/ME.
When people talk about 'ME', we are not always referring specifically to the Canadian criteria, but we mean CFS or CFS/ME.
In your mind, ME is one specific disease process, but not everyone understands that point of view, especially if they are referring to CFS or CFS/ME.
Personally, I believe that ME (Canadian criteria) is probably one single disease process, but I imagine that CFS might encompass quite a few subsets.

I agree that it is good to discuss the diagnostic criteria etc., but I think it is helpful if we explain what we mean if we say ME is a single disease... because otherwise it just leaves people confused and none the wiser.

I'm just saying this because I think you lose people from your argument when you say that ME is definitely a single disease, if you don't explain what you mean.

Just my opinion, meant in the spirit of support and friendship.

no worries Bob but calling it a vauge heterogenous disorder is not helpful.Me is a single disease.CFS does not exist in any real way it is a purely subjective label.If in medicine you recieve a diagnosis then you have a particular illness.There may be different symptomatic presentations but the illness is the same.What conditions are subsumed under the totally artificial CFS banner the lord only knows

If CFS can be diagnosed 4 different ways then it suggests that there different conditions involved.neuroimmune endocrine symptoms are mandatory in a diagnosis according to the canadian criterea and not CFS.this is clearly a different diagnosis and suggests a different illness.One illness does not have heterogeneous causes.If heterogeneous causation is mooted then it strongly suggests different illnesses lumped into the dustbin caused by a diagnosis of exclusion with idiopathic fatigue at the core.Chronic fatigue syndrome as diagnosed by the Oxford critrea is in mind independent terms idiopathic chronic fatigue.Which is in fact fatigue of no known cause.They have chosen to attach the subjective suffix of syndrome

 

I don't want to speak for lazybones, but I think he already did:

These coaches are very good at their job but I can assure you they can not cure you of M.E.