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The ME community can harm patients

Bob

Senior Member
Messages
16,455
Location
England (south coast)
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.
It's not just a placebo effect that will skew the apparent effects of the lightning process; but reporting bias is built into into the therapy. If children are instructed to believe and say that they are well, and if they then get a negative response from adults (in a position of responsibility - their care givers) when the children report that they are no better, then the children are most likely to report improvement even if there is no change. It has the potential to be an abusive misuse of authority. And goodness knows what detrimental developmental effects might be involved in training children to ignore symptoms of pain and fatigue, and to believe they are well when they are in fact unwell. Teaching a child to ignore and distrust their reality doesn't seem like a good idea to me. Telling a child that they are wrong when they say they are unwell goes against all the fundamental basics of care giving. It's seems more like child abuse. And that's not to mention that the lightning process is akin to faith healing, and why it's seen as acceptable to use faith healing for children (or anyone) with ME/CFS when it would be considered abhorrent to promote faith healing as a medical treatment in e.g. adult cancer patients.
 

A.B.

Senior Member
Messages
3,780
It's not just a placebo effect that will skew the apparent effects of the lightning process; but reporting bias is built into into the therapy. If children are instructed to believe and say that they are well, and if they then get a negative response from adults (in a position of responsibility - their care givers) when the children report that they are no better, then the children are most likely to report improvement even if there is no change.

I'm using the term placebo effect to mean any factor that can give the false appearance of improvement. Flawed methods, cognitive biases, regression to the mean, answers of courtesy, subordination, fear of negative repercussions, etc. are all placebo effects. The sum of these effects is what one sees in the placebo treatment group.
 

Hip

Senior Member
Messages
17,871
Here is an example of a Lightning Process success story:
Linda Morgan, 61, suffered with ME for 43 years. At 18 she was a professional rider but fell ill with glandular fever and never recovered. She heard about the technique on BBC Radio 2's Jeremy Vine Show.

'For 43 years I had tried absolutely everything, different kinds of alternative and conventional medicines. Nothing worked. So I took myself to Wales with very little hope.

'I remember sitting with Amir and very suddenly feeling a coolness at the top of my head that went down my spine and all through my body.

'The next morning I woke up feeling refreshed and well for the first time in 43 years. And I am still well today.'

Source: Could ME be caused by too much adrenaline?
 

Hip

Senior Member
Messages
17,871
I'm using the term placebo effect to mean any factor that can give the false appearance of improvement.

I think the placebo effect normally refers to the psychological or physiological effects produced by the patient's expectation of a positive outcome from a treatment.

If you don't have positive expectations, I don't think the placebo effect can occur.
 

Aurator

Senior Member
Messages
625
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.
Yes, there is more about that here:

'Ann was critical of the application process. “Even if a person does decide to go for LP, you have to fill in a detailed questionnaire first, and they then select you based on whether they think you are suitable. This goes some way to explaining their apparent high success rate, because they are hand- picking those they ‘cure.’”'
 

A.B.

Senior Member
Messages
3,780
If you don't have positive expectations, I don't think the placebo effect can occur.

Suppose you're studying a condition with fluctuating symptoms, where a flare up typically lasts three months. The condition is considered incurable and patients have low expectations of improvement.

A false appearance of improvement can easily occur just by selecting those patients as study subjects that are in the middle of a flare up. If we only wait a few months, we will find that most patients report feeling better compared to the beginning of the study - even if the treatment being studied is totally ineffective.

These factors only become apparent if we compare the treatment to a placebo and blinding isn't broken. We will then see that the placebo group somehow did fairly well despite not being treated.

And in practice, this is what the placebo effect is. To avoid misunderstandings and the magical connotation, some have proposed to use the name "contextual effect" instead.

The idea that placebos can cure people was born just in this way - the researcher simply assumed that the only possible explanation for the apparent recoveries in patients getting a fake medicine was a mysterious mind body effect.
 

A.B.

Senior Member
Messages
3,780
Regarding the success stories: these would be more credible if they weren't claiming what are basically miracles (and if there wasn't "For more information about the Lightning Process, call 020 8341 9800." written at the bottom").

Anybody can make up success stories and testimonials.
 

jimells

Senior Member
Messages
2,009
Location
northern Maine
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!

This is great! An imaginary "training program - not a treatment" miraculously cures a non-existent infection using a secret method that patients are trained not to reveal. What happens if they spill the beans? Are they in breach of contract and subject to legal sanctions? Are they afraid Mr Parker might use voodoo on them in retaliation?

Since the theory is supposed to be "calming the stress response", why don't they measure cortisol, ACTH, adrenaline, etc. before and after treatment? Surely being scientists and all, they are not afraid of what the results might show...
 
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jimells

Senior Member
Messages
2,009
Location
northern Maine
Anybody can make up success stories and testimonials.

There are now companies that specialize in this kind of baloney. If you open a store across the street from mine, I can hire people to write all the negative reviews I can afford.

On my first exposure to the internet in 1995, my assessment was, "miles and miles of shit". Twenty years on, I'm still shoveling, since I do see occasional glimpses of the pony buried underneath, but my original assessment hasn't changed much...
 

Snowdrop

Rebel without a biscuit
Messages
2,933
According to people who make it their business to watch for and note this sort of marketing behaviour the term is called 'astroturfing' and it is apparently done quite often with things that don't rely on objective measures.
 

Hip

Senior Member
Messages
17,871
A false appearance of improvement can easily occur just by selecting those patients as study subjects that are in the middle of a flare up. If we only wait a few months, we will find that most patients report feeling better compared to the beginning of the study - even if the treatment being studied is totally ineffective.

I think I understand where you are coming from.

I did read one interesting article or paper years ago that argued some of the placebo effect was due to many illnesses or symptoms having a natural tendency to get better over time. So if you go to your doctor with some vague pains, even if he gives you no treatment for it, the pains may just clear up on their own. We all have had symptoms that come and go in that way.

So the idea is that if you are performing a study on the efficacy of a sugar pill to make pains disappear, that study would appear to show some efficacy, just because in many patients, those pains will soon disappear anyway.

On top of that, you also have the psychological effect of positive expectations on your symptoms.
 
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Stretched

Senior Member
Messages
705
Location
U.S. Atlanta
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.)

'Need a break - tongue 'n cheek. Otherwise, too many babies in the article. :confused: ...
a 'booby prize?'
 

panckage

Senior Member
Messages
777
Location
Vancouver, BC
I gotta agree with @Stretched here. I think this forum is overrepresented by those who have the more severe forms of ME. The advice they give is great for those who in the same situation, but for those with the milder forms of ME its different...

As someone who has a milder form of ME I can fully confess that reading these forums gave me an unrealistic fear of exercise. I consequently reduced my exercise and my symptoms worsened. Problem with ME is I wasn't conscious of this worsening so it took me quite a while to figure out! Certainly I've found the community helpful in many ways but I do find it is a double edged sword
 

SOC

Senior Member
Messages
7,849
As someone who has a milder form of ME I can fully confess that reading these forums gave me an unrealistic fear of exercise. I consequently reduced my exercise and my symptoms worsened.
Do you get PEM from exercise?
A. Postexertional neuroimmune exhaustion (PENE pen’-e): Compulsory
This cardinal feature is a pathological inability to produce sufficient energy on demand with prominent symptoms primarily in the neuroimmune regions. Characteristics are as follows:
1. Marked, rapid physical and/or cognitive fatigability in response to exertion, which may be minimal such as activities of daily living or simple mental tasks, can be debilitating and cause a relapse.
2. Postexertional symptom exacerbation:e.g.acute flu-like symptoms, pain and worsening of other symptoms.
3.Postexertional exhaustion may occur immediately after activity or be delayed by hours or days.
4. Recovery period is prolonged, usually taking 24 h or longer. A relapse can last days, weeks or longer.
5. Low threshold of physical and mental fatigability (lack of stamina) results in a substantial reduction in pre-illness activity level.
Operational notes:
For a diagnosis of ME, symptom severity must result in a significant reduction of a patient’s premorbid activity level.Mild(an approximate 50% reduction in pre-illness activity level),moderate(mostly housebound),severe(mostly bedridden) or very severe(totally bedridden and need help with basic functions). There may be marked fluctuation of symptom severity and hierarchy from day to day or hour to hour. Consider activity, context and interactive effects.Recovery time: e.g. Regardless of a patient’s recovery time from reading for ½ hour, it will take much longer to recover from grocery shopping for ½ hour and even longer if repeated the next day – if able.
Even mild ME requires a 50% reduction in activity level. That makes exercise beyond stretching and mild strength exercise in very small increments beyond the capability of the vast majority of people with ME. We need our remaining 50% of activity for activities of daily living. It is not only reasonable, but wise for all people with ME to limit exercise for the sake of exercise and to avoid cardio exercise entirely. It is not a question of fear of exercise, it is intelligent management of a very serious health condition.

What kind of exercise were you doing and for how long? Was it cardio, stretching, lifting...? What symptoms got worse when you quit and improved when you increased exercise again -- pain, GI, exhaustion, brainfog, dizziness...? Knowing what kind of exercise and which symptoms improved might explain why exercise helps you when it harms most people with ME.
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
As someone who has a milder form of ME I can fully confess that reading these forums gave me an unrealistic fear of exercise. I consequently reduced my exercise and my symptoms worsened.
I wonder if you would mind expanding on that please, because I can't understand how reducing exercise levels could worsen ME symptoms? I assume you continued to participate in a range of daily activities, as it's almost impossible to entirely stop daily activities, unless severely ill. (I mean, I can't imagine that you stopped activity altogether and took to your bed for months on end?) If you continued with daily activities (e.g. walking to the sofa, showering, walking between rooms in the home, picking up your post, doing occasional laundry, making a cup of tea a few times a day, walking to the garden or to the local shop, etc.) then you wouldn't have suffered from any long-term muscular deconditioning, and I can't see how your health would have been adversely affected.

Do you specifically mean that 'exercise' rather than 'activity' helped improve your symptoms? If you mean that actual 'exercise' improved your illness, then it suggests that you don't have 'ME' as defined by CCC & ICC, or 'SEID' as defined by the IOM, or CFS/ME as defined by NICE, as they all require a post-exertional exacerbation of symptoms for a diagnosis. If your illness responds positively to exercise, then obviously that's great, but it suggests that you don't have ME, but that you experience fatigue due to some other mechanism or illness. (Edit: I never find it attractive to question people's diagnosis, and perhaps I'm being unfair to put these questions to you, but your comment baffles me.)

As an aside, i've always struggled to reduce my activity levels; As soon as I'm feeling slightly better I go bounding off and cause yet another relapse. It took me years to learn (the hard way) to slow down. I think most of us struggle to reduce our activity levels such that we avoid causing relapses.
 
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TiredSam

The wise nematode hibernates
Messages
2,677
Location
Germany
I gotta agree with @Stretched here. I think this forum is overrepresented by those who have the more severe forms of ME. The advice they give is great for those who in the same situation, but for those with the milder forms of ME its different...

As someone who has a milder form of ME I can fully confess that reading these forums gave me an unrealistic fear of exercise. I consequently reduced my exercise and my symptoms worsened. Problem with ME is I wasn't conscious of this worsening so it took me quite a while to figure out! Certainly I've found the community helpful in many ways but I do find it is a double edged sword

I have a milder form of ME too. I don't do any exercise at all, including lifting shopping. This is not based on fear, unrealistic or otherwise. The only place I have heard avoidance of exercise called "fear" so far is in the BPS bullshit. It is based on prefering to accept my limitations while I still have some degree of control over my situation and making the best of what limited energy this illness has left me with.

There is a wide range of severity at PR, I don't see how anyone can be "overrepresented" - if there are a lot of severe sufferers that's the way it is. If I don't find their posts relevant to me I skim over them or ignore them and move on to the stuff that interests me. As far as I know some severe sufferers started off as mild sufferers like me, so their experience is relevant and their warnings are well worth heeding.
 

lansbergen

Senior Member
Messages
2,512
I gotta agree with @Stretched here. I think this forum is overrepresented by those who have the more severe forms of ME. The advice they give is great for those who in the same situation, but for those with the milder forms of ME its different...

As someone who has a milder form of ME I can fully confess that reading these forums gave me an unrealistic fear of exercise. I consequently reduced my exercise and my symptoms worsened. Problem with ME is I wasn't conscious of this worsening so it took me quite a while to figure out! Certainly I've found the community helpful in many ways but I do find it is a double edged sword

How do you know the severe did not start as mild?

How can patients saying it is importent to stay within one's limits cause exercise fear?

It is simple. If you have what I have you will be punished for overdoing.
 

Little Bluestem

All Good Things Must Come to an End
Messages
4,930
20 different sets of criteria for ME / CFS were reviewed. The conclusion was that there are no scientifically documented evidence that some criteria are better or more accurate than others.
So it doesn't matter what criteria you use to select subjects for a research study. :bang-head:
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
Telling a child that they are wrong when they say they are unwell goes against all the fundamental basics of care giving.
This was my story from an early age. "You can't be tired." "You've had plenty of sleep", "Don't be lazy.", which meant that when my ME, or pre-ME, went from mild to problematic I just kept ignoring it and pushing. Which drove my health down.