Lightning Process - discussion thread

A highly undesirable feature. We now have the breakaway and an original LP coach running workshops at a GP continuing education conference* - or should that be "education" - a sneaky double act Somebody please make it stop!!!

Mel Abbott: https://whova.com/embedded/speaker_detail/DSQ8e1dyB4uPPnrqCzvS8chcCDu2rY4akjC1Rt2SB9o=/20077978/

Jenny Oliver: https://whova.com/embedded/speaker_detail/DSQ8e1dyB4uPPnrqCzvS8chcCDu2rY4akjC1Rt2SB9o=/20077978/

*http://www.gpcme.co.nz/programme.php (the workshop programme is in the pdf downloadable from this page)

 

The organisers have already been made of aware of the NICE recommendation against LP as well as of the patient surveys showing deterioration for many LP participants (not the Norwegian site though). So far they're refusing to take any action. Which tells us all we need to know about what they truly think about ME.

Below is the info based on which doctors sign up to the workshops. It really defies belief anyone, let alone someone who studied what an evidence base is supposed to be, falls for it.

[The odd and unprofessional formatting is on the original page.]Links in post #101.

 

This is worse than the dumbest stuff about detoxifying, which at least has some loose basis in reality. The creep of alternative medicine and pseudoscientific beliefs has actually produced worse quackery than most pseudoscience out there.

This is nothing less than dereliction of duty. Medicine is actually even more dysfunctional than it appears and that's saying a lot.

 

I agree. It has been pointed out to the conveyor of this CME, by local patient groups, that LP and it’s off-shoot The Switch, is a pseudoscience, against NICE Guidelines and has the potential to cause harm.

I have seen Mel Abbott’s online interview by the NZ Doctor magazine when she presented at a GP conference a few years ago - she likes to promote herself as an ally to GP’s by saying how burdensome we and all our symptoms are and how hard it must be for them. (Sorry can’t find the link)

Unfortunately she has convinced an orthopaedic surgeon of her wonders…and he is now promoting her to ACC (who provide money for treatment of health conditions following accidents) and to the medical community. https://www.stuff.co.nz/national/he...y-from-chronic-illness-back-to-perfect-health

And despite some good advocacy in NZ on TV and national press promoting resting and pacing by local ME/long covid experts Prof Tate and Dr Brooks, they have ignored them for two LP’ers!

 

And as if all the above wasn't bad enough, Mel has also started teaching medical students at Otago University - that's the same uni Prof Tate is at. So the students get a lecture from him and a lecture from Mel . I'm aware complaints have been made but am not privvy to the details or outcome.

Aaaand Richie Barnett, the "face of ANZMES", has gone and become a life coach and NLP practitioner. His claims are much more modest than those of Mel and the LP practitioners but he trades on his ME connection and that's problematic. https://www.richiebarnett.co.nz/about-1

 

My stepsister mentioned LP a few years ago as she had a friend/ colleague at a former employer who had recovered via LP.

I asked her to check if this person was back to pre ME/ CFS lifestyle .

Turns out they had recovered, but from a blood disorder . They had never had ME/ CFS.

Misdiagnosis ( up to 40% in UK historically) , will also play a big part.

 

You mean I have to eat tripe to get well??? Little wonder then I'm ill, I eat pescetarian

 

How. Patronising.

Stop telling people what i believe. And what my voice and body language are. You never met me! And you're Wrong.

 

"People with CFS believe that they need to conserve energy because there is not enough in the bank"

So this sounds like someone read a CBT explanation on how ME/CFS works and came away with false understanding. The explanation being roughly that "it's merely a belief, and if they ignore the belief all will be well".

The exhaustion is not merely a belief. It's also a sensation in the body, sometimes overwhelming so that I can do little but lay on the bed and rest until it improves. Every day I live confirms that there is a relationship between my level of exhaustion and how active I am. I've not noticed that good mood makes a large difference to my exhaustion. I don't feel exhausted all the time either, I and use the moments where I have more energy to do what is needed or what I enjoy. What helps somewhat is rest and more and better sleep.

Exhaustion is also just one problem. Another other problem is that my body has only a limited ability to tolerate being in a more active state, which can mean physical activity but also socializing and having a lot of fun. Stressing the body in this manner will lead to postexertional malaise. I really do not need any friendly tips on how to stimulate my mood because that is not an important limitation. What I need is to find some way to allow my body to tolerate being in a more active state, physically or mentally.

The idea that I can think myself out of being tired is absurd. When I say I'm exhausted, it's not an a metaphor for an emotional state. Of course my emotional state is also different when exhausted but it's not driving this state.

I suspect that these people have no idea what the fatigue of chronic illness is like because they've never experienced it. I never experienced it until I got the illness.

 

I have been lucky enough to be able to think myself a bit better over the years. One of the helpful thoughts I have had is to stay well away from the lightning process and any other such woo.

 

That reminds me of a comment I recently came across, I can't remember by whom. They speculated that homeopathy was so popular back when it was invented at least in part because the crude medicine of the time as often as not made patients a whole lot worse than they were in the first place. So by comparison a "remedy" with zero effect looked really good. If a pwME was determined to try either the LP or homeopathy and couldn't be persuaded to drop both ideas I'd steer them towards the latter.

 

I've been on a course of homeopathy for 8 years now. In Germany homeopathic remedies are delivered free to all households via the kitchen tap.

 

I, personally, take the advanced form. It's made of crystals and that must mean it's, uh, at least... 6x as effective. Probably.