The ME community can harm patients

Bob

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Let's not toss all the water out with the baby... .
I would be very happy to toss all the water out with this baby.
Don't mean to be pedantic, but aren't you supposed to avoid tossing the baby out with the water?
Hehehe... Anyone who can work out what's wrong with "tossing all the water out with the baby", gets a Phoenix Rising prize for having a good brain day! :trophy: :) (Warning - the prize might be disappointing.)
 
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Hip

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I think the odds of curing me/cfs by the lightning process are about the same as the odds of actually getting struck by lightening.
I read that even Lightning Process therapists don't talk much about cures these days, but rather amelioration of ME/CFS symptoms; in other words, they are being more realistic, probably as a result of years of experience of not curing the vast majority patients, but perhaps improving the symptoms of a reasonable percentage of ME/CFS patients.

We will have to wait for the results of Esther Crawley's trial of the Lightning Process to get a better handle on how many patients it may help.


Certainly it's not unusual to use psychological techniques to help treat organic diseases. For example, stress management techniques may help those with heart disease. Though once therapists cross the line, and start trying to convince ME/CFS patients that their disease is not organic, but rather is caused by their own thoughts, beliefs, or state of mind, well, that's when those therapists start to lose traction with most of the ME/CFS community and ME/CFS researchers.
 

jimells

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Whatever therapists following this line of argument are doing, it is completely irrelevant to solving the corresponding public health problem, except possibly in the same sense as shooting sick people reduces public health problems.
No need for health authorities to shoot sick people when we can do it for ourselves, or maybe call the police and let them do it instead. My next-door neighbor's brother was depressed and killed by cops inside his own house. The investigation hasn't been released it, but it will probably conclude "suicide by cop", with the cops being completely blameless, of course.

I'm starting to think that perhaps suicide is becoming official state policy. Our Dear Leaders know damn well their policies directly contribute to patient despair and suicide, and they can't even be bothered to give lip service to the problem.
 

Bob

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I'm starting to think that perhaps suicide is becoming official state policy. Our Dear Leaders know damn well their policies directly contribute to patient despair and suicide, and they can't even be bothered to give lip service to the problem.
I don't want to take this thread off at a tangent, but what annoys me about the assisted suicide debate that were having in the UK at the moment is that many patients and elderly aren't offered comfortabe and dignified "assisted living" whereby they are enabled to live in safety and comfort in a facility where the fear of being unable to look after oneself is lifted. e.g. we need hospices for ME patients where we can be looked after when times get (unbearably) tough. I think this could have avoided a number of suicides of our friends and associates.
 
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jimells

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They all keep an eye or ear on what goes on here one way or another. ... We are usually 'that forum' rather than PR, but why should we complain. After all we even have the opposition writing articles about how naughty we are.
"That Forum!" Hahaha, I love it!


Mahatma Gandhi said:
First they ignore you, then they laugh at you, then they fight you, then you win.
 

Bob

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I read that even Lightning Process therapists don't talk much about cures these days, but rather amelioration of ME/CFS symptoms; in other words, they are being more realistic, probably as a result of years of experience of not curing the vast majority patients, but perhaps improving the symptoms of a reasonable percentage of ME/CFS patients.
I think the ME Association in the UK has been instrumental in making that change: The ME Association has made complaints that were upheld by the appropriate authorities in relation to inappropriate promotional material that mentioned 'cures', 'recovery' and 'treatment' etc. So I'm not sure if it was a willing and proactive change on the part of the lightning process practitioners: it was forced upon them by legal process.
 
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A.B.

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I read that even Lightning Process therapists don't talk much about cures these days, but rather amelioration of ME/CFS symptoms; in other words, they are being more realistic, probably as a result of years of experience of not curing the vast majority patients, but perhaps improving the symptoms of a reasonable percentage of ME/CFS patients.

We will have to wait for the results of Esther Crawley's trial of the Lightning Process to get a better handle on how many patients it may help.
The Lightning Process could simply be a highly optimized method for obtaining strong placebo effects. This would create a temporary impression of improvement in disease, as long as one avoids objective measures, long term follow ups. It's also impossible to compare these psychological interventions to a placebo.

I don't think the LP study can strengthen the case for LP.
 

SOC

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The Lightning Process could simply be a highly optimized method for obtaining strong placebo effects.
AKA temporary brain-washing. Messing with the minds of the gullible. Sick mental manipulation of the desperate.

I think it's established that brain-washing (if only temporary) can be achieved with the right skill set, on the right people, under the right circumstances. That doesn't make it a cure, or a medical treatment... or ethical. It's just sick.
 

Hip

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The Lightning Process could simply be a highly optimized method for obtaining strong placebo effects. This would create a temporary impression of improvement in disease, as long as one avoids objective measures, long term follow ups. It's also impossible to compare these psychological interventions to a placebo.

I don't think the LP study can strengthen the case for LP.
It could be, but it's interesting that even with all the hype touting CBT as a successful treatment (thus creating the right expectation conditions for a strong placebo effect), if you look at the ME association survey I cited above, only 2.8% said they were greatly improved by CBT, compared to 25.7% for the Lightning Process.

If were just the placebo effect, why that order of magnitude difference?
 
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Hip wrote: "I read that even Lightning Process therapists don't talk much about cures these days, but rather amelioration of ME/CFS symptoms; in other words, they are being more realistic, probably as a result of years of experience of not curing the vast majority patients, but perhaps improving the symptoms of a reasonable percentage of ME/CFS patients."



Lightning process Trainers don't talk about curing ME any more, not because they are "realistic", but because they would be breaking the law. The UK Advertising Standards Authority found the Phil Parker Group (Lightning Process) and other Lightning Trainers guilty of making false health claims. The only advertising left for Lightning Trainers is testimonials.

There is enough documented material on Lightning on this site for regulars to know to what extent Lightning trainers have exploited the 40% plus misdiagnosis rate in the UK.

The Advertising Standards Authority (ASA) found the Phil Parker Group (Lightning Process) guilty twice of making false claims in its advertising for Lightning Process. Other Lightning Trainers have been “done” by the ASA too.


ASA Ruling:

“The claims must not appear again in their current form. We welcomed the decision to remove the claims. We told Phil Parker Group not to make claims on websites within their control that were directly connected with the supply of their goods and services if those claims could not be supported with robust evidence. We also told them not to refer to conditions for which advice should be sought from suitably qualified health professionals.”


http://www.asa.org.uk/Rulings/Adjudications/2012/8/Phil-Parker-Group-Ltd/SHP_ADJ_158035.aspx

http://asa.org.uk/Rulings/Adjudications/2013/3/Phil-Parker-Group-Ltd/SHP_ADJ_210374.aspx

http://www.meassociation.org.uk/201...tion-on-phil-parker-group-ltd-22-august-2012/
 
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Phil Parker even attached himself and his Lightning Process to XMRV publicity in 2009, 'hypothesising' that Lightning Process appeared to be having an effect on a retrovirus!


MEAgenda: "chutzpah - he's got it in spades"

https://meagenda.wordpress.com/2010...es-lightning-process-and-scientific-research/


Mr Parker’s scientific opinion on the Lightning Process and XMRV:

Slide presentation: xmrv cfs |8:30 mins

17 slides, no audio


Lightning Process - Phil Parker - xmrv cfs


thephilparker | 27 October 2009

Phil Parker, designer of the Lightning Process discusses the latest research into the xmrv virus and cfs


@ Slides 13 and 14

How this relates to the Lightning Process

• If we assume that on average:

– 67% of the cases of CFS clients that are seen with the LP have the XMRV virus,

– And according to our findings 85% of these people recover their health in the 3 days of the LP programme

LP and XMRV

The LP must be assisting these people to deal effectively with that infection in some way (we would hypothesise it is a resumption of good immune and neurological function)


~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
 

A.B.

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It could be, but it's interesting that even with all the hype touting CBT as a successful treatment (thus creating the right expectation conditions for a strong placebo effect), if you look at the ME association survey I cited above, only 2.8% said they were greatly improved by CBT, compared to 25.7% for the Lightning Process.

If were just the placebo effect, why that order of magnitude difference?
As I've said, it could simply be due to LP being designed to elicit greater placebo responses.

I remember reading about a LP practitioner that was screening potential customers to make sure they had the right mind set, even refusing skeptical patients. I wouldn't be surprised if this is a standard practice. Just by selecting the right patients one can make a treatment look really effective. CBT, outside of a research setting, doesn't have this advantage (or at least less of it). Patients are being referred for CBT even when they are not motivated or skeptical or have heard from other patients that it doesn't work.

The indoctrination also seems much stronger in LP. It goes as far as instructing patients to knowingly pretend to be healthy, telling them that this is necessary for the treatment to work.

Treatments that are more expensive also tend to elicit greater placebo responses (possibly because the more expensive the treatment, the more likely it is that only very motivated patients decide to try it).

One has to compare treatments in a controlled setting to eliminate as many of these influencing factors as possible.

PS: also very important: it is easier to produce placebo effects in children, and children are presumably more likely to spontaneously recover, and I suspect teenagers are also more likely to report fatigue states that aren't CFS. I don't think it's a coincidence that LP is being tested on children.
 
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MEAgenda again in 2010:

https://meagenda.wordpress.com/2010...es-lightning-process-and-scientific-research/



‘Mr Parker’s scientific method of resolving CFS and ME, as recounted by a disappointed Lightning Process “trainee”:


Phoenix Rising forum thread
[…]


I had an acute onset and went from a hardworking person to bedbound overnight.

In a desperate attempt to recover I decided to try LP after reading stories of severely affected M.E. patients who had recovered. It all sounded so convincing and after a phone consultation with a LP coach I felt very positive I was doing the right thing. I borrowed the money from my parents, £880.00 as I had long lost my job, and went for it.


There were 3 other m.e. patients at the same course none of these people nor myself recovered. The course was over 3 days from 10am-2pm with a break at lunchtime for tea and biscuits. We were told not to discuss the content of the course with each other during the breaks. We learned the ‘affirmation’ and stood on the floor on paper circles with key words written on them.



Here is the big secret of what we had to say while standing on paper circles –


WHEN YOU FEEL A SYMPTOM
SHOUT- STOP! (stand on the paper STOP)
SAY- I HAVE A CHOICE ( stand on the paper CHOICE)
SAY- YOU CAN CHOOSE THE PIT OR THE LIFE YOU LOVE ( you then stand on the LIFE YOU LOVE circle)

SAY- I CHOOSE THE LIFE I LOVE
SAY- WELL DONE, YOU ARE A FANTASTIC GENIOUS, YOU ARE ON TRACK! I AM WITH YOU EVERY STEP OF THE WAY (you are being your own coach here)
ASK YOURSELF – WHAT DO I WANT?
ANSWER YOURSELF- I WANT ENERGY AND HAPPYNESS LIKE (you say something that means energy etc. to you)

ASK YOURSELF- HOW WILL I GET THIS?
TELL YOURSELF- BY STOPPING EVERY NEGATIVE THOUGHT
EVERY NEGATIVE EMOTION
AND DOING THE LIGHTNING PROCESS.


There are a few more short affirmations and that’s it you are cured of M.E. We all DID leave on the third day full of hope and newly found confidence and told that no-matter how we felt in the future ALWAYS SAY WERE WERE CURED OR THE PROCESS WILL NOT WORK !!!! These coaches are very good at their job but I can assure you they can not cure you of M.E. Think about it PAPER CIRCLES AND AFFIRMATIONS. The four of us all were ‘high’ for a few weeks or months and did indeed do more than usual but sadly all relapsed. ‘



~~~~~~~~~~~~~~~~~~~~



https://meagenda.wordpress.com/2010...es-lightning-process-and-scientific-research/


Mr Parker’s scientific opinion on whether medical professionals can assess whether you are “ready” to undertake the scientific Lightning Process:


From the [Lightning Process site] FAQ: Can my doctor assess me for readiness?

If your doctor or health care specialist is trained as a Lightning Process Practitioner then of course they can assess you for readiness to take the programme. If they are not trained in the programme they will not have the requisite skills or knowledge base about this very specialised field to assess you.


A large part of the training for LP practitioners is to train them to appropriately assess potential trainees for their suitability for the process, as it is essential to ensure, as far as is possible, that only those who are ready to get benefits from the training program are enrolled in the training.
.
 

Snowdrop

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If they are not trained in the programme they will not have the requisite skills or knowledge base about this very specialised field to assess you.
I'd roll on the floor laughing but I just don't have the strength. So thank goodness for the virtual world.
:rofl: :rofl: :rofl: :rofl: :rofl:

I sure hope the LP cures delusions.
 

Hip

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Lightning process Trainers don't talk about curing ME any more, not because they are "realistic", but because they would be breaking the law. The UK Advertising Standards Authority found the Phil Parker Group (Lightning Process) and other Lightning Trainers guilty of making false health claims. The only advertising left for Lightning Trainers is testimonials.
Fair enough.



Phil Parker even attached himself and his Lightning Process to XMRV publicity in 2009, 'hypothesising' that Lightning Process appeared to be having an effect on a retrovirus!
Sounds a very wishy washy hypothesis. Although being on these forums during the XMRV heyday, I noticed quite a few patients here were trying to link the various drug and supplement treatments they were taking to possible anti-XMRV effects, so I think many of us went a bit overboard with the XMRV virus.



As I've said, it could simply be due to LP being designed to elicit greater placebo responses.

I remember reading about a LP practitioner that was screening potential customers to make sure they had the right mind set, even refusing skeptical patients. I wouldn't be surprised if this is a standard practice. Just by selecting the right patients one can make a treatment look really effective. CBT, outside of a research setting, doesn't have this advantage (or at least less of it). Patients are being referred for CBT even when they are not motivated or skeptical or have heard from other patients that it doesn't work.

The indoctrination also seems much stronger in LP. It goes as far as instructing patients to knowingly pretend to be healthy, telling them that this is necessary for the treatment to work.

Treatments that are more expensive also tend to elicit greater placebo responses (possibly because the more expensive the treatment, the more likely it is that only very motivated patients decide to try it).

One has to compare treatments in a controlled setting to eliminate as many of these influencing factors as possible.

PS: also very important: it is easier to produce placebo effects in children, and children are presumably more likely to spontaneously recover, and I suspect teenagers are also more likely to report fatigue states that aren't CFS. I don't think it's a coincidence that LP is being tested on children.
You make some excellent points.

I guess if the Lightning Process could be shown to improve some objective ME/CFS measures, such the two-day CPET test results, then that could validate it.



Here is the big secret of what we had to say while standing on paper circles –

WHEN YOU FEEL A SYMPTOM
SHOUT- STOP! (stand on the paper STOP)
SAY- I HAVE A CHOICE ( stand on the paper CHOICE)
SAY- YOU CAN CHOOSE THE PIT OR THE LIFE YOU LOVE ( you then stand on the LIFE YOU LOVE circle)

SAY- I CHOOSE THE LIFE I LOVE
SAY- WELL DONE, YOU ARE A FANTASTIC GENIOUS, YOU ARE ON TRACK! I AM WITH YOU EVERY STEP OF THE WAY (you are being your own coach here)
ASK YOURSELF – WHAT DO I WANT?
ANSWER YOURSELF- I WANT ENERGY AND HAPPYNESS LIKE (you say something that means energy etc. to you)

ASK YOURSELF- HOW WILL I GET THIS?
TELL YOURSELF- BY STOPPING EVERY NEGATIVE THOUGHT
EVERY NEGATIVE EMOTION
AND DOING THE LIGHTNING PROCESS.
That cult region aspect of the Lightning Process certainly makes it look a bit unsound; but I understand the course comprises a series of various different techniques, including techniques to help you lower your arousal levels. Techniques like the arousal lowering may be providing beneficial health effects, whereas others like the positive thinking / positive affirmation technique described above may be more keyed on the placebo effect. Although the positive thinking might also be releasing endorphins, which in turn may have a physiological effect.

I actually use some psychological and breathing techniques to reduce my arousal levels during socializing with people. Socializing always gives me mental PEM for the next day or two, and my hunch is that the high brain arousal levels that occur during excited socializing may be causing this PEM. So during socializing I try to counter high arousal with certain mental relaxation techniques.
 
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