PoTs & the Lightning Process

On Tuesday evening whilst having a look at member posts on the group I admin in,

a post popped up that deeply concerned me. Now obviously I only have this

members say so that this is the case, it may not be true or aspects of it may not

be true. However he alleged that a well-known UK doctor that many people pay

privately to see after getting nowhere with the NHS when they have PoTs, was

singing the praises of a clinical study that was using The lightning Process to

essentially treat / cure PoTs. My heart sank and if it is true, it has confirmed a

fear that a friend and I have shared for the last 4 years that research into the

treatment of PoTS in the Uk was moving towards a more psychological

rather than physiological model.

I am not naive enough to say that the mind does not play a role in health of

course it does. People with depression can manifest very physical symptoms.

I have found whilst dealing with anxiety and depression lately that my pain levels

are affected. On the days where I am really struggling my pain levels are higher,

when I am having a better day my pain levels are back to normal. Clearly mental

health and physical health are linked as they are all part of the whole system.

However to suggest a process that has many vocal detractors, that has had no

properly conducted medical trials that have been peer-reviewed or replicated

can treat / cure PoTs is just laughable. It’s like telling a person with terminal cancer

that thinking positive thoughts will cure them.

Now when you try to research The Lightning Process online it is very hard to

actually get any substantial information regarding what the process actually is.

I had to search for quite a while last night. Part of the problem is that those that

attend the courses ( that retail from between £500 -£750 for a 12 hour course

over three days) have to sign (allegedly) a non disclosure document. They are

also constantly told during the three-day course that sharing details of the course

with others will prevent them from becoming well. The lightning process up until

now has mainly been marketed at those with M.E, CFS, Depression, Anxiety,

OCD, and Multiple Sclerosis. The main website has fallen foul of the UK

Advertising Standards Authority and was forced to remove content that claimed

it had cured people of various medical conditions and that it had a success rate

of around 90%. From what I have managed to glean from online sources

( which I have provided the links for at the end of this post) it’s mainly based

on positive affirmations, cognitive behavioural therapy and emptying your wallet

of several hundreds of pounds. It uses a lot of impressive sounding terminology

such as neuro-linguistic programming (A discredited psychological therapy )  neuroplasticity

( changing pathways in the brain) and reducing Allostatic load (stress).

It sounds very impressive and when you are desperate, the sum

of £500 - £750 doesn’t seem that much if you are going to become well again

within three days. I say three days as many of the LP (lightning process)

practitioners claim that participants are well within three days.

From what I have been able to glean from some very limited research is that

it’s all based on breaking the cycle of negative thinking. So at its very basic level

its patient blaming, you are sick because you are trapped in a cycle of negative

thinking. The negative thinking pattern is causing your physical symptoms -

including MS, ME and now PoTs by the look of it, due to the fact you are

increasing stress on your body by continually activating your fight or flight

response. (http://lightningprocess.com/how-it-works/ ).

So for instance if you have the thought “ I feel terrible” you make the hand

signal to stop - catch yourself in the thought, you then rephrase it as in “I am

doing terrible” therefore making it your choice to be feeling that way ( see the

subtle language change that shifts the blame back onto the patient so even if

they claim that they don’t blame the patient the subtle change if language makes

the patient believe they are responsible for their physical state - what angers me

is there would be a national outcry if they tried this shit on with cancer patients).

You then tell yourself you have a choice to make you can choose to descend

into the pit ( where you allow your physical symptoms to take over your life

and continue with the negative thoughts and never get better) or you can

choose the life you love. Now what muppet wouldn’t chose the life you love?

Who wouldn’t want that in a heartbeat? However if you fail to respond to the

process you have effectively chosen to remain in the pit (of despair).

You also tell yourself positive affirmations such as “I am strong like a tree” or

“ I am a strong genius for choosing the life I love” as you visualise the choice

you have made. Sorry only one word for this Psychobabble. Can you understand

now why I am concerned that doctors who treat PoTs and Dysautonomia in the

UK are singing its praises?

A lot of research with PoTs has been around a faulty fight or flight response

so I can see why the leap has been made to the lightning process. As many

patients with ME ( I hate the term CFS ) have dysautonomia as part of their

symptoms, or possibly because many patients who were written off as having

M.E but actually have PoTs and EDS (and dubious claims have been made

about LP curing M.E), maybe these doctors decided that despite tilt table

tests proving PoTs, that somewhere deep within our subconscious we are

responsible for causing our own illness through a cycle of negative thinking.

If you aren’t offended at any level that it is being suggested that your negative

thought patterns are making you sick…….then there really is no hope for you.

The LP is so condemning of negative thoughts that to doubt or to criticise the

process is seen as a reason why you haven’t been cured. From what I have

read those taking part in the process are told to leave their analytical thinking

at the door. There is even a suggestion of a screening process before you are

allowed to attend the course. The practitioners claim that you have to be ready

to attend so this is why they conduct a home study ( a basic telephone interview).

Many of those who have spent the money to attend the course have

said that the interview is a test to see how compliant you will be. Those

who have attended the course and failed to respond to the process are quite

often told by others who claim to have been cured, that they didn’t try hard

enough, they didn’t implement it properly, they weren’t open minded enough

( whilst typing this I keep wanting to add “ to allow Jesus into your life”

because let’s face it, it sounds like a cult. Handing over your money to find enlightenment).

Furthermore I have to say on reading some of the testimonials from those who

say their illnesses have been cured by LP, sound very much like those people

who have been brainwashed in some religious cult. They all say the same thing

and usually end with the same accusatory tone that if the process didn’t work for

you then you a) didn’t try hard enough b) don’t want to get well. Back to the old

blaming the patient game for those of us who chose not to get better.

The major problem with the studies that have been conducted is that they

have been so informal as to have patients with no official diagnosis provide

a self diagnosis ( on it's on page at the bottom it shows that the patient results

are from people who have self diagnosed - so may not actually have the illness

they are claiming to have http://lightningprocess.com/research/ ) also due to its

technique of only accepting positive affirmations and to condemn anything that

could be perceived as negative of course when you question people about how

they are doing after spending so much money on what could be bought in the

self-help section of a bookshop, they are going to tell you that they have improved.

They have been told that to say that they are sick, worse not doing well is not

following the process……..how can they say anything other than they have

improved or are living the life they love?

I am always concerned when I find Doctors are conducting clinical trials on

psychological approaches to treat physiological conditions. To me it’s lazy

medicine, it's a chance to shift the focus away from the doctors lack of

knowledge / scientific breakthroughs and pushes the fault for the illness

or disease back onto the patient. Any doctor that suggests this form of

treatment to me will just get a punch on the nose.

Now again for the record I will state it was alleged in a group I am admin in,
that a certain UK Doctor who is famous in PoTs circles is singing the praises
of a clinical study into using the lightning process to treat / cure PoTS. How
true this actually is, I don’t know. So there is no need for panic stations
however I would love to hear from anyone in the UK who this treatment
has been suggested to (who has PoTs) or who is part of the clinical study.

I also wonder how effective saying stop and repeating positive affirmations
 will be when my blood pressure drops to 70/40? or when I dislocate a joint
 if it will pop back in if I tell myself I am strong like a tree?



Resources / Links
https://hubpages.com/health/The-Lightning-Process-Didnt-Work-For-me

https://frownatsmile.wordpress.com/2011/01/06/patient-experiences-of-the-lighting-process-links/

https://www.buzzfeed.com/tomchivers/inside-the-controversial-therapy-for-chronic-fatigue?utm_term=.bqrkDAmny#.ri1ZbXzVk

http://skepdic.com/lightningprocess.html

http://lightningprocess.com/ - official website