The ME community can harm patients

[deleder2k]

@seaturtle, thank you so much! Your post should have been published in a paper.

 

[alex3619]

Nothing wrong with doubting, especially the research. That's what scientists do, doubt and test, and keep testing. Nothing wrong with doubting your own judgement. Certainly nothing wrong with doubting the media and doctors.

I endorse this view. Doubt, by itself, is a virtue not blameworthy. When self-doubt is mixed with self-blame, which some psych approaches can lead to (including positive thinking) then it can make people very unhappy.

Doubt is good. Blame is what causes a problem.

We live in a very complex and uncertain world. Questioning things is our edge against reality and our perception of reality.

 

[jimells]

It appears that she would happily continue to physically harm and psychologically demean people with a demonstrated pathological response to exertion which has been repeatedly and independently replicated.

How come this sounds a lot like malpractice or even child abuse? I found @lemonworld 's testimony here to be very compelling. And it sounds like there are many more young people with the same experience. Their stories need to be told as well.

 

[jimells]

Its very hard to show fraud. Here is why. Aside from cherry picking data without telling us, some of these studies tell you exactly what they are doing (e.g. PACE) but in language that obfuscates this. Its up to you to figure out what is wrong with it. You need to know more than what is in the study to figure it out. Doctors tend to be too busy. So they often fail to see the problems.

Yes, funny how most corruption is "legal". Very convenient for the corrupt. Not so good for the honest.

 

[jimells]

@lemonworld there is every reason to believe that young ME patients will live to see real treatments become available. They won't come from the NIH or NHS, but from privately funded research that seems to be increasing. An anonymous donor just gave $500,000 to study severely ill patients, so that is a great leap forward.

Meanwhile, troublemakers will keep rattling the cages of the babblers and demanding respect and funding from our national research agencies.

So try to get some rest and go easy on yourself - we're all hanging on together.

 

[serendipitycat]

How hard can it be for her to read the Canadian Consensus Criteria, the International Consensus Criteria, or the Institute of Medicine report commissioned by the CDC and NIH in the US? Every one of those clearly lists the biological abnormalities found in ME patients, based upon reputable and quality research. The links to that research is even given in the documents. There is simply no excuse for her ignorance, beyond that it benefits her to remain ignorant.

She twists and turns everything that is being said, never answers critical questions. Makes a big point that @Jonathan Edwards is RETIRED. Does she really think that people will accept her retired = irrelevant argument?

She seems so angry with the ME-patients! Like we are the most stupid people ever, not even able to see what is best for us. But SHE will tell us. SHE, with her enormous ME-expertise!

To be perfectly clear, we don't want to shut her up because we can't handle her "truth". We want to shut her up because she is engaged in false advertising for her own profit, and she is making false and harmful medical claims which she is completely unqualified to make. We want to shut her up to end the medical and social abuse resulting from any ignorant bystanders who believe she is a medical authority. And we especially want to shut her up to protect the new and still trusting ME patients who might fall victim to her dishonest and fraudulent tactics.

Exactly.

Oh, I just want someone to dissect her answer....point by point...

 

[Gijs]

Professor Edwards you really upset this lady. She's very mad at ME patients. Where does this anger come from? Showing her domination by this letter doesn't make her idea more credible. She has no sense of objective science. Everything stands or falls with a pure selection of patiënts. The Oxford criteria (chronic fatigue) isn't. So we have selection bias. Cochranes meta analysis are limited also. Even if some patiënts have benefit from CBT/GET still some doesn't. Why can't she not accept that CBT/GET can harm some patiënts and doesn't work for a significant number of patiënts? Lets found out why CBT/GET doesn't work for this group -rather then getting so angry and blame the victims- like a real scientist would do.

 

[A.B.]

Why can't she not accept that CBT/GET can harm some patiënts and doesn't work for a significant number of patiënts?

She isn't a scientist. She sells therapy to patients. Admitting that psychotherapy doesn't work for at least some patients decreases the number of potential clients.

 

[user9876]

Professor Edwards you really upset this lady. She's very mad at ME patients. Where does this anger come from? Showing her domination by this letter doesn't make her idea more credible. She has no sense of objective science. Everything stands or falls with a pure selection of patiënts. The Oxford criteria (chronic fatigue) isn't. So we have selection bias. Cochranes meta analysis are limited also. Even if some patiënts have benefit from CBT/GET still some doesn't. Why can't she not accept that CBT/GET can harm some patiënts and doesn't work for a significant number of patiënts? Lets found out why CGT/GET doesn't work for this group -rather then getting so angry and blame the victims- like a real scienetist would do.

I think there was a time where ME patients would criticize those pushing things like the LP process or CBT and GET but no one who was in a medical position of authority ever said anything. So we got to a situation where patients views and opinions were just dismissed.

As some in the medical world (including Jo Edwards but also through things like the IoM report) are criticizing views then some seem shocked. They are not well positioned to defend their views because they have not had to answer the difficult questions because they were able to dismiss those asking them.

On the Cochranes meta analysis - they are as flawed as the methodology of the trials they are combining results from. They have not questioned the use of subjective measures for non-blinded trials with treatments aimed at changing patients views on symptoms. This means they have little value. On a more technical note they also repeat statistical mistakes and assumptions about the properties of scales (i.e. assumptions scales are interval scales) which have not been justified in any of the initial trials.

 

[Gijs]

She sells a fairytale

 

[Wildcat]

.

http://sallycats.hubpages.com/hub/The-Lightning-Process-Didnt-Work-For-me

 

[TiredSam]

@Wildcat that article is absolutely excellent, and should be referred to whenever the lightning process is discussed. Now I know why Live Landmark just keeps repeating herself and ignoring everybody else - it's what she's been trained to do. Never question, never doubt, keep sending the money. Why doesn't she just start a religious cult and have done with it?

I now can't see how anyone could become a lightning process practitioner unless they were either a) incredibly gullible and stupid, or b) greedy and evil.

 

[Wildcat]

https://frownatsmile.wordpress.com/2011/01/06/patient-experiences-of-the-lighting-process-links/
.
More detailed first hand experience exposees of the Lightning Process by ME patients who have done it.
The Lightning Process hard sell NLP scam has had far too much publicity and influence in Norway and the UK.

 

[Snow Leopard]

She sells a fairytale

At $2500 it sounds more like a nightmare.

 

[A.B.]

https://frownatsmile.wordpress.com/2011/01/06/patient-experiences-of-the-lighting-process-links/

There are also many reports of success of the LP also to be found on the internet, however, many such reports are found to have been posted by LP vendors themselves

I have suspected this for some time, but would like to see some evidence. These recovery stories are often basically miracles and therefore not very credible when posted by anonymous people on the internet.

Wasn't there also a marketing person that posed as patient for Phil Parker?

I don't think all reports of improvement are made up. I think they are sometimes written by people who are still high because they sincerely believe that they're about to leave their illness behind. And occasionally someone will recover by chance while they're doing LP (or any other therapy), especially if they're younger, mildly affected and had the illness for a short time.

 

[Marky90]

https://frownatsmile.wordpress.com/2011/01/06/patient-experiences-of-the-lighting-process-links/



I have suspected this for some time, but would like to see some evidence. These recovery stories are often basically miracles and therefore not very credible when posted by anonymous people on the internet.

Wasn't there also a marketing person that posed as patient for Phil Parker?

I don't think all reports of improvement are made up. I think they are sometimes written by people who are still high because they sincerely believe that they're about to leave their illness behind. And occasionally someone will recover by chance while they're doing LP (or any other therapy), especially if they're younger, mildly affected and had the illness for a short time.

I don`t think we really need evidence for that, it`s just very plausible that they try to sell their products on big forums like Phoenix Rising. I agree with the rest of your post, some participants go into some form of a remission. But they usually relapse pretty hard.

 

[mermaid]

I am not a fan of LP, not least due to their inflated prices and egos, but around 6 yrs ago when my symptoms worsened and I began to research more on the net, I found out about LP. A friend of mine had been ill for several years and had a diagnosis of CFS and I told her about LP and she went and did it! She was not young (in her 50s then) and she did get much better and has sustained her improvement.

I know this is true as she is a very old friend and I have seen her since. However it's also true to say that her symptoms were not quite like mine - she didn't seem to have the frequent immune issues that I did, and neither did she have any longstanding autoimmune things that I have.

I am pleased that she is better, but I don't feel tempted to go down the same route. I just think that we don't all have the same things wrong with us without decent testing, and without a proper diagnosis how do we know that it won't cause us harm? (or how do they know, more to the point!).

 

[Bob]

It's not surprising that some people with chronic fatigue report benefit from an LP course. That would be expected from most types or faith heading or positive thinking courses. i.e. there are bound to be some anecdotal reports of some people experiencing amazing recoveries, or whatever, after many different types of alternative interventions.

But anecdotal positive reports about the benefit of an untested intervention are no way to assess the value of a potential treatment. That's why we spend millions on clinical trials - it's to try to rule out multiple potential biases. Biases and random events can include such things as: reporting bias, therapeutic allegiance, placebo effect, natural health fluctuations over time, changes of perception re personal abilities, stretching/testing one's self-imposed personal boundaries, and random changes in health.

There are so many reasons why someone with a chronic illness might feel better after attending a positive thinking course, or a faith healing session. But, by any stretch of the imagination, positive thinking, or faith healing, or brain washing, are not treatments for biomedical illnesses such as cancer, HIV, MS, or ME etc. (The reports of cancers reducing in size because of positive thinking have been discredited, to my knowledge. And I always found such reports to be abusive anyway.)

That's not to say that such patients wouldn't benefit from such things, i.e. in terms of increasing the subjective quality of their lives, if such an approach appeals to them - For example, before I had ME, I had a reiki session once, just out of interest - I was interested from a psychological point of view (e.g. a session a calm relaxation and positive vibes - I thought I might benefit from it psychologically, to enhance my subjective sense of well being). And I enjoyed it very much. But it wasn't supposed to be a treatment for anything, and it wasn't sold as a treatment.

However, the major potential danger with LP for ME patients is that it trains patients to believe that they are well, and to ignore their symptoms. And ignoring symptoms can be catastrophic, as we all know too well! It's the opposite of pacing.

Ignoring one's symptoms is not advisable for ME patients because they need to monitor their health in order to avoid post exertional exacerbation.

There are many different reasons why a person might experience fatigue. If someone doesn't experience post exertional exacerbation, then they don't have ME/CFS as defined by the IOM report (which is to be adopted by the CDC.) And I can't comment on how patients without ME/CFS might benefit from LP. I just hope that people understand that it's not a treatment, and is little more than a positive thinking course, and it cannot treat a biomedical illness.

 

[mermaid]

However, the major potential danger with LP for ME patients is that it trains patients to believe that they are well, and to ignore their symptoms. And ignoring symptoms can be catastrophic, as we all know too well! It's the opposite of pacing.

Ignoring one's symptoms is not advisable for ME patients because they need to monitor their health in order to avoid post exertional exacerbation.

I forgot to say re the friend above who got well after LP...... she gave me a very clear description of what happened in the group and what the 'training' consists of. At the end of it she certainly was NOT told to pace when she started out doing exercise, but she is sensible and decided that she WOULD pace her recovery. She began to walk but did it very carefully and did not do too much in one go. She found that she was doing OK and not getting symptoms.

My guess is that she really had Post Viral Fatigue Syndrome perhaps at one time and that she had in fact got better after resting a lot and but had become scared of doing exercise in case her body could not cope.

So maybe some people are recovered but don't know it and the symptoms they still have (before they do LP) are the nervous system overreacting when in fact they are physically better. I have a gut condition that has been labelled Non Ulcer Dyspepsia and I wondered if it's similar in some way - there is nothing really happening there any more physically (I did have gastritis but don't now) but the nervous system has not learned how to turn off its alarm signals (ie pain in my case).

What I am saying here is that we don't know who is still physically ill and who isn't because our testing systems are so clumsy and antiquated still for ME- in the NHS in the UK at least, and many other medical systems do not do the right tests that do exist if we could pay for them. So the LP is dangerous for some people with ME because they have no way of knowing who is physically safe to do it and who isn't.

 

[alkt]

Yes, her response is weak, and desperate and almost made me giggle. I do not trust Landemarks claims, I do not trust her reserach and still it seems that my brain is much more tempted to believe Live Landemark and her claims, than not. It is just a lot easier. Because the alternative is just too messed up to wrap my head around.

Friends of my facebook friends are commenting on live landemarks posts saying they had ME and was cured by the LP. These people are girls my own age, that tell their stories that are so very similar to my own, and how after so and so many years they finaly found a way back to their life. And I can't help to think: but if they did it why can't I?

One explanation is of course that we might not even have the same illness/cause. I personally think it's very possible that there are many illnesses under the term ME. Research haven't come so far that we can say for certain that we are all sick the same way? or? And here comes one of my biggest problems with this whole thing: Live Landemark and other LP praisers talk about it like it will cure everyone with ME, and if you weren't able to you did it wrong or weren't trying. But they have no way to even know that we had the same illness. Yes, we were diagnosed with the same criteria, but those criterias aren't that specific yet, are they?

Even though i have tried LP and it didn't work for me and I no longer trust Landemark, i struggle to trust myself. Everytime she comes out in media with these claims, my anxiety towards the illness comes back. "Is it my fault after all?"

I guess i'm just a perfect example that articles like these have immense power, they don't even NEED to make reasonable statments, they dont NEED credible research. These things have so much power.

And I imagine that when I feel this way, people that are not very familiar with the illness or very new to it, of course they want to believe this. It is just so easy in so many ways.

I doubt my self. i doubt the illness. i doubt research. i doubt the media. i doubt the doctors. it's not pretty.

some skepticism is quite sensible in the modern world where many people will sell their souls/conscience in order to get rich even from the suffering of others. you should not doubt yourself however the fact that you have managed this post says a lot about your desires for a better future and not from selfish needs. a great shame so many have no empathy for others.please take care of yourself.