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(Incl. 3 LP cases) Worst Cases Reported to NAFKAM Interntnl Registry of Exceptional Disease Courses

Dolphin

Senior Member
Messages
17,567
Glob Adv Health Med. 2012 Mar;1(1):30. doi: 10.7453/gahmj.2012.1.1.008.

Worst Cases Reported to the NAFKAM International Registry of Exceptional Courses of Disease.

Fønnebø V, Drageset BJ, Salamonsen A.


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Full text (from: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3833488/)

The National Research Center in Complementary and Alternative Medicine (NAFKAM) International Registry of Exceptional Courses of Disease (the Registry) related to the use of complementary and alternative medicine (CAM) has to date received 5 reports of exceptionally “worst” courses of disease from patients who have attributed their negative health experience to the use of CAM. The monitoring of unfavorable outcomes related to CAM treatment is seen by NAFKAM as important to ensure that treatments offered are associated with low risk of harm. This is particularly important when the conditions patients suffer from are not life threatening.

If the Registry receives 3 negative reports of patients using the same treatment for the same condition, a “warning” is submitted to the health authorities. The same is done after only one report if the condition is life threatening.

Three of the 5 patients had been diagnosed with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME), and all of them have related their unfavorable outcomes to the treatment method called Lightning Process (LP), a 3-day training program designed by British osteopath Phil Parker.1 They had all followed the recommendation given by the LP instructors during the treatment to ignore what they sensed as their bodies' symptoms of being pushed too hard. The patients had been diagnosed with CFS/ME 10, 2, and 7 years, respectively, before attending the LP treatment. Six to 12 months after the treatment, all

3 experienced a strong relapse of their CFS/ME symptoms. One patient expressed that “to follow the advice from the LP instructor eventually became a direct risk to my health.”

The other 2 patients had both been treated with homeopathy. The first patient had sought homeopathic treatment for sinusitis problems and a desire to reduce her conventional medication. After using homeopathic treatment for 1 year, she was diagnosed with a necrotizing vasculitis, and she believes that she might have been diagnosed and treated earlier had she sought conventional treatment. The other patient had sought homeopathic treatment for prostatitis symptoms and used homeopathic remedies for this condition in combination with chemotherapy for hemato-logic cancer. He reports a number of symptoms (vision coordination problems, tinnitus, memory loss, and hiatal

hernia) that he ascribes to an interaction between the homeopathic remedy and the chemotherapy.


The 3 “worst” cases reported with regard to LP are consistent, and there is reason to suspect a causal relationship. The 2 other reports are less specific and will need to be supported by additional cases before any conclusions can be drawn.

Contributor Information

Vinjar Fønnebø, Vinjar Fønnebø, PhD, is professor of preventive medicine at and director of the National Research Center in Complementary and Alternative Medicine (NAFKAM), Department of Community Medicine, University of Tromsø, Norway.

Brit J. Drageset, Brit J Drageset, BSc, is a consultant at NAFKAM.
Anita Salamonsen, Anita Salamonsen, MSc, is a researcher at NAFKAM.

REFERENCE

1. Parker P. The Lightning Process: the complete strategy for success. London: Nipton Publishing; 2007.

Articles from Global Advances in Health and Medicine are provided here courtesy of Global Advances in Health and Medicine LLC

KEYWORDS:


CFS, Exceptional Courses of Disease, Lightning Process, ME, NAFKAM, Registry, case reports, chronic fatigue syndrome, hematologic cancer, homeopathy, myalgic encephalomyelitis, necrotizing vasculitis, prostatitis, sinusitis, worst cases
 

A.B.

Senior Member
Messages
3,780
They had all followed the recommendation given by the LP instructors during the treatment to ignore what they sensed as their bodies' symptoms of being pushed too hard.

Isn't that what GET patients are told?
 
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1,446
@ Snow Leopard:


GET is GRADED Exersise which is based on the deconditioning model of ME. There are no different 'forms' of GET.

But there are continuing smoke and mirror tactics which have attempted to disguse GET; and smoke and mirror tactics that wrongly portray pacing as a form of Graded Exersise lite. The tricky ways of adhering to the deconditioning model that we have seen in the UK (and we have so much experience) are endless.
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
@Wildcat I am confused. Does that mean they use a bulldozer to grade patients down to dust? :confused: ;) 'Coz thats what it seems like sometimes.

Sadly even doctors who don't use formal GET recommend inappropriate exercise, to the lasting detriment of untold numbers of patients .. untold because there is no formal register for harm from GET. Maybe we should start one?

In theory some forms of GET are about staying within limits, but the problem is that GET presumes patients will improve, not reach a ceiling or fall through the floor. So I think many doctors might push too hard in their advice.
 
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1,446
Staying within limits is pacing. What I'm saying is that GET is incremental increase in exersise whether or not one is able. Thats what GET is. The idea of different forms of GET has come about due to the trickiness of certain medics trying to fool us with the idea that our limits are important to them, whilst still adhering to the 'ideology' that increasing exersise or activity will improve us.

Hope that makes sense.
 

Snow Leopard

Hibernating
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5,902
Location
South Australia
Staying within limits is pacing. What I'm saying is that GET is incremental increase in exersise whether or not one is able. Thats what GET is. The idea of different forms of GET has come about due to the trickiness of certain medics trying to fool us with the idea that our limits are important to them, whilst still adhering to the 'ideology' that increasing exersise or activity will improve us.

Hope that makes sense.

All I'm saying is that there are publications calling their "techniques" GET, which utilise pacing aspects. Such as those by Karen E Wallman.

I agree that therapies that explicitly ignore limits are harmful.
 

Dolphin

Senior Member
Messages
17,567
So even by the standards of CAM, LP is dodgy?
That's one way of looking at it.

For any "placebo" CAM, which I think are a lot/most of them, they may not help but they may not make you worse directly* (except in terms of loss of time or money), while LP for ME certainly has the potential to make people worse.

*they may make you worse indirectly if there were other better treatments you could have done instead.
 
Messages
1,446
I get what you were saying, now, Snow Leopard.

We have noticed a blurring of the boundaries here in Britian. Its confusing for some patients at our UK clinics, where, many of the clinics are teaching what they call pacing, but it has more in common with GET - and the patients then reject it and say it doesn't help, its too difficult, and they say they don't rate pacing!

We have to keep explaining that what they have been taught is not actually pacing!
 
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