Understanding the Lightning Process Approach to CFS/ME; a Review of the Disease Process and the Approach

Jonathan Edwards said:
Indeed the 'literature review' seems to consist of scanning pubmed for reviews and picking one by contributors here and attributing to it a lot of stuff it did not say. After mention of such stuff our paper says that frustratingly none of this stuff has been validated.
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I did look into some of the other studies he's citing and they don't really support his claims.

I can grant him that meditation can lower blood pressure, but it's questionable whether that is best understood as conscious control of physiology. It's certainly not evidence that people can learn to affect whatever physiology they wish.

He cited some mindfulness effect on blood sugar studies which totally did not support his argument. One large study foudn no effect but he still cited it, one underpowered pilot study found a minimal effect (0.48%). Another large study of "mindful eating and exercise" found a meaningful effect but that cannot be attributed to mindfulness when exercise is known to be effective at lowering blood sugar. At this point I got tired and stopped.

It looks like he is not reading the studies he's citing. Neither are the peer reviewers. It's all creative writing, with minimal effort to make it look like science is being done. There is a term for that, and it's pseudoscience.
 
To long here, but LP is so fascinating because l’ve experienced the madness and the danger of it. I don’t want that to happen to any ME-patient (PEM and other cardinal symptoms).

Read/glimpse of the paper. It is so frustrating not having the marker(s) reading this. Per se we have to put up with (over exaggerated) vagueness of Parker and his like, that gives way for almost everything. It’s a little like what is ME to you and what is ME to me?

Parker not defining CFS/ME is deliberate, but has for obvious reasons all sorts of problems. For Parker himself it ought to be a paradox that it is impossible to find any value in the paper. That should stand out, but does not when the agenda is not about science and “truth”.

Some thoughts:

First I think everyone experiencing ME (PEM and other cardinal symptoms) will agree to the idea that homeostasis is out of control. That is obvious. The problem is when Parker is describing homeostasis gone completely wrong as a cause. Parker talks about “disrupted recovery process” and PER (physical emergency response)? Yes homeostasis is out of control, but a symptom, not a cause.

Parker describes that earlier thoughts, was that one could not really impact the homeostasis, but that research has showed the opposite if training, with a lot of references. I have no knowledge of the possibility of this, but if so, then I find it so unbelievably interesting, that you should try to impact and re-route this by LP? Here is where the whole model falls apart and into the absurd. If able to impact, then I would understand why meditation or similar more calming exercises would work. And many people do report that such strategies if not improving a lot, at least could sort of calm/re-balance homeostasis. May not be true, maybe placebo or whatever, but the idea that LP should restore homeostasis is just weird. It is hard to describe the process clearly, but LP is a very active method. In that sense, it could if not given to the right patient, be just the opposite of what they need, be harmful and dangerous because it in no way is re-routing homeostasis out of control. On the contrary LP so to speak just fuels homeostasis the wrong way.

I do think that LP in some cases seems like the magical key to ME (PEM and other cardinal symptoms), but this is complex and it often has to do with short duration and the luck of proper management early on. The latter is often a combination of the luck of meeting a doctor with knowledge and a “dark room situation” over some time. LP could at last stand out magic, but there are other explanations.
 
Peter said:
To long here, but LP is so fascinating because l’ve experienced the madness and the danger of it. I don’t want that to happen to any ME-patient (PEM and other cardinal symptoms).

Read/glimpse of the paper. It is so frustrating not having the marker(s) reading this. Per se we have to put up with (over exaggerated) vagueness of Parker and his like, that gives way for almost everything. It’s a little like what is ME to you and what is ME to me?

Parker not defining CFS/ME is deliberate, but has for obvious reasons all sorts of problems. For Parker himself it ought to be a paradox that it is impossible to find any value in the paper. That should stand out, but does not when the agenda is not about science and “truth”.

Some thoughts:

First I think everyone experiencing ME (PEM and other cardinal symptoms) will agree to the idea that homeostasis is out of control. That is obvious.
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I don't.

As discussed elsewhere, I am not alone in thinking ME is likely more than one illness. I can only then speak for myself, but 'homeostasis out of control' means absolutely nothing to me. The whole article, to me, is utter gibberish.
 
JohnTheJack said:
I don't.

As discussed elsewhere, I am not alone in thinking ME is likely more than one illness. I can only then speak for myself, but 'homeostasis out of control' means absolutely nothing to me. The whole article, to me, is utter gibberish.
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See your point. I was to categoric in my attempt to say what I think everybody sort of feels, a great imbalance. Won’t say more on that, other than agreeing that “homeostasis out of control” is bad wording. What we can agree upon maybe is that the article is awful.
 
Dr Carrot said:
This isn’t strictly related but as we’re discussing the validity of the lightning process I thought I’d contribute this thought.

There are lots of people who say they’ve benefited, even been cured by the lightning process. I know of two myself, both of whom are fit and well, and working full time. What are we to make of this? I know that they don’t have the same illness as me (whatever my illness is anyway), but they were clearly ill and are now well.

The only reason I’m so interested in this, is if diagnosis / testing wasn’t such a mess my hunch is that these people would be put into a different pile from people with my specific presentation of symptoms.
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"......different pile from people with my specific presentation of symptoms>" Sheep or goats...?
 
In the long distant past when I was doing microbiology at university it was taken for granted that infections often had a slow recovery. Later this was formalised as a post viral syndrome (for about 10 minutes until the BPSers interfered) After I had been ill for 7 years my husband took a very bad flu but we had a horrible GP who wouldn't give him a medical certificate (he had been shaking so much with fever the bed was banging against the wall!) As a result he was weak, pale, thin and fatigued for about ten months. He could only walk a few yards before having to rest and spent all his time in bed when he wasn't working.

It never once crossed our minds he had the same disease as me as I did not experience fatigue that way but had lots of neurological things. Nowadays he would be diagnosed as having CFS and could easily decide that whatever he was doing when he started to perk up had "cured" his ME.

If you have the damaged aerobic system that has been shown in the Workwell studies, nothing in the LP could fix that so if you get better (really better not just living off adrenalin before a major collapse) then you might have had CFS but not ME.

I suspect that a lot more people say they are better when they have just improved a bit (like Esther Rantzen's daughter) Every time I manage a weekend with my son's family I come home thinking about all the things I want to do as they begin to seem possible, but, sadly, it is just adrenalin and i have to spend the next few weeks recovering same as always.
 
rvallee said:
So... NHS is all in on pseudoscience? Anything goes? Where's the limit? Is there any?

You could not make a better example of how to ruin health care if you tried. Fuck it, let's bring unicorns to the mix! Who even cares anymore?
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Pretty much unicorn land on all fronts here in UK just now, so perhaps only to be expected.

As soundbites are all that matters in MSM and politics, you can perhaps see where the chants of LP would fit right in.

Add the all enveloping grey fuzz of plausible ( to others) deniability and stage is set for a snake oil boom.
 
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