Article: Lightning Strikes a CFS Patient

Angela Kennedy
Orla said:
Thanks Willow.



[Orla - this "explanation" of ME/CFS is very similar to the "catasrophic thinking" and misinterpretation of bodily sensations" view of the CBT school on ME/CFS. Bascally we are thinking ourselves "sick" when there is nothing organically wrong with us. In LP you are obviously not suposed to Pace, as that would involved a degree of planning based on assessing likely reactions to certain activities, including bad reactions. But in LP they are saying that we don't have an organic disease causing a bad reaction to activity, we just think we do, and it is this thinking that is causing our symptoms.

So with LP we are supposed to stop thinking "negatively" about our possible bad reactions to activity. Basically, if we stop worrying about how we might react badly to certain activities, or the amount we do of activities, and apply the process, we will be fine and we won't have a bad reaction. Of course one argument against this is that most people will have done this at some point in their illness. This will be either in the early stages when they didn't make a link between activity and feeling bad, but the activity still caused them to crash, or when during a good patch a person with ME/CFS might think some activity is going to be fine, so just go and do it, but they end up feeling bad afterwards, even though there was no negative thinking or catastrophic worrying involved.]
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Hi Orla

Yes- this is exactly what is happening - a belief, by LP or CBT proponents, in catastrophic thinking. The belief that patients 'catastrophize' it itself due to circular reasoning or affirming the consequent. What is 'catastrophization' is itself unstable also, in the way researchers think about it! (There's no agreed definition as such, for one thing!)

And I think your argument is correct. When people first get ill (especially children), there does seem to be a lot of people just thinking they've recovered, carrying on as normal, then becoming adversely affected. Even then they may not make the link between activity/exertion and those adverse effects because that sort of problem is NOT publicised in the press, for example, or told to them by doctors. Post exertional adverse effects is not a well known phenomenon in lay knowledge discourses! So they have no reason to be 'catastrophizing' as such. It is only as they become iller and iller that they MIGHT start to realise what's happening (it might take years!) . THEN they get labelled as fear avoiders or catastrophizers.

But while people are NOT making a link between their symptoms and exertion, they might be thought of as maladaptively 'driven'!! Years later, they get accused of both fear avoidance AND being compulsively 'driven'!!

When you look at it like that, it's horrific. Sadly, I know of which I speak. My daughter was an active 12 year old enjoying her life when she got ill - she certainly did NOT make any connection between exertion and symptoms, nor did I, and her 'driven-ness' was to do going out with friends, playing badminton and going swimming, playing with our dogs, shopping, watching TV, doing very well in some subjects at school, not in others. Not worried about that (god it was only religious education lol!) etc. etc. Yet somehow, she found herself speculatively psycho-analysed when her illness started interfering with her getting to do what she wanted, and she was blamed for that (as was I). But it took us YEARS to work out her increasing disability was linked to exertion!

The point I'm making is, the circle of fear avoidance and catastrophizing was only occurring in the minds of psychiatrists and the doctors who are influenced by them, not in me or my daughter. The model of deconditioning dreamt up seems to be divorced from the experience of most people, not only as 'CFS' sufferers, but in communities in general. People with flu might take things easy for a while, for example, but they know, usually, that they will recover eventually and be able to get back to what they are doing. Many 'CFS' ers experience, initially, flu-like or other viral illness.

While people diagnosed with 'CFS' are peered at through the lens of a psychiatric paradigm in which circular reasoning, magical voluntarism, second-guessing and victim-blaming are key components of distortion, issues like this get missed and their actual experiences of the illness are misrepresented. So thank you Orla for actually bringing that up - it's an important point.
 
Athene
I know everyone has made this point already in a more eloquent form, but I need to vent. This is all just snake oil in another guise.

How can any amount of amygdala training kill the strep and staphylococcus and candida in my intestine? How can it make my number of NK cells go up to normal? How can it stop blood coming out of my bottom when I eat gluten or dairy? How can it make my heart beat regularly and my mitral and tricuspid valves pull themselves together and stop being so leaky?

If you have a physical illness, you have a physical illness. In terms of making yourself feel better, positive thinking can get you so far, and no further.

I am glad to hear of someone who feels better by joining this secretive money-oriented cult called "The Lightning Process". Personally, I am holding out for solid scientific research published openly for peer review in a respected scientific journal.
 
U
Back to Berit and her recovery, I'm just sorry that after suffering for 13 years and (with a cardiologist husband) clearly having the financial security to be able to cope with it better and try whatever treatments she wanted she sees fit to charge sufferers $1500 for 3 days LP training. In addition, knowing how variable symptoms can be she is not refunding any of the $1500 if people cancel within 10 days. I would have thought she would have more empathy with fellow sufferers after 13 years - i know I would.
 
M
ukme said:
Back to Berit and her recovery, I'm just sorry that after suffering for 13 years and (with a cardiologist husband) clearly having the financial security to be able to cope with it better and try whatever treatments she wanted she sees fit to charge sufferers $1500 for 3 days LP training. In addition, knowing how variable symptoms can be she is not refunding any of the $1500 if people cancel within 10 days. I would have thought she would have more empathy with fellow sufferers after 13 years - i know I would.
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I'm afraid that I can't see this "article" as anything other than an advertisement for LP and for Berit. The fact that she couldn't tell her story without linking to her business and the LP empire is eloquent proof. I find it really heavy handed. It leaves a bad taste for so many reasons.
 
Dx Revision Watch
FOI request 16.04.10

On 16 April, I submitted a request for information under FOIA in relation to the Dr Esther Crawley led LP pilot study. I will update when I have received a response which is due for fulfilment within 20 working days of receipt. It may be necessary to submit a further response based on information provided.

A copy of the full request is posted in this thread:

Lightning Process to be Evaluated in Research Study on Children

@ Post #172

http://www.forums.aboutmecfs.org/sh...tudy-on-Children&p=75528&viewfull=1#post75528
 
Dx Revision Watch
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