The ME community can harm patients

lemonworld

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oh my gosh i'm shocked. what even is this world. i went to live landemarks facebook, i couldn't help myself, and she had posted that she had gotten a message from someone saying 'if you spread more lies, i will sue you'. which ofcourse is not very kind.*I do not support hate messages of any kind*

anyways, my point is that the comments on her posts by other people are horrendous. one doctor saying that ME patiens does not have the ability to see anything else than their own suffering, and are incapable of empathy and understanding for other people. I could not continue reading. i am so shocked. what is this kind of hate? seriously.

Am i even aloud to post this? tell me if i am not. this whole thing is just scaring me.
 

user9876

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oh my gosh i'm shocked. what even is this world. i went to live landemarks facebook, i couldn't help myself, and she had posted that she had gotten a message from someone saying 'if you spread more lies, i will sue you'. which ofcourse is not very kind.*I do not support hate messages of any kind*
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Seems quite reasonable if she is promoting her business that does harm to patients then she should be sued. In the UK people promoting the lighting process were forced by the advertising standards agency to change withdraw some of there claims after a complaint from the ME society.
 

TiredSam

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oh my gosh i'm shocked. what even is this world. i went to live landemarks facebook, i couldn't help myself, and she had posted that she had gotten a message from someone saying 'if you spread more lies, i will sue you'. which ofcourse is not very kind.*I do not support hate messages of any kind*

anyways, my point is that the comments on her posts by other people are horrendous. one doctor saying that ME patiens does not have the ability to see anything else than their own suffering, and are incapable of empathy and understanding for other people. I could not continue reading. i am so shocked. what is this kind of hate? seriously.

Am i even aloud to post this? tell me if i am not. this whole thing is just scaring me.
Since having ME my attitude has changed from letting other people believe in whatever psychobabble they want, to having zero tolerance for psychoquackery and anyone who espouses it - it's just too harmful to be acceptable. If it were possible to sue psychobabblers for the lies they spread and the harm they cause I think that would be a perfectly reasonable thing to do, nothing to do with hate at all. The law is there to bring people to account for the damage they cause, unfortunately it seems to be a bit of a pipe dream in this case.

Since having ME I have become grateful for many things, one of which is that I got it as a middle aged male, which means I've already done plenty with my life, and I also tend to be taken more seriously by doctors. The way teenage girls and young women with ME are bullied horrifies me. I have to take regular breaks from reading this kind of stuff because it makes me so angry.

And family and friends who don't get it is a whole other issue - I have therapists, reiki practitioners and amateur psychologists in my family and am seriously considering making some choices about who's in my life and who's out of it.

So much to deal with. Hang in there @lemonworld.
 

Snowdrop

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@lemonworld

:hug:

Your post about having done the LP was very good. Sharing your experience here may help someone new to ME when they are considering what to do.

Do not doubt your own experience. Others have been where you are now too; accepting the experts opinion on what will make us well.
And then blaming us when we don't improve.

To treat a patient that way is bullying. It is mind boggling when bullies push back with more bullying when confronted. But it's not unusual. If the treatment (LP or many other recommended treatments that don't work) were scientifically sound and truly did work and make people well the experts of such treatment would not feel at all threatened by a few disgruntled people. They would be confident and know that the results would speak for themselves.

At least you can hang out here and know that you are understood. We get it -- from experience.
PS I am sending you a PM (Inbox).
SD
 

Bob

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@lemonworld, that's a very powerful testimony you have posted about your experiences with living with ME and the lightning process as a young person. I'd love to see your forum-post published in the Norwegian newspaper. Thank you for sharing. Sorry to hear that you've had to go through all of that. It is a form of abuse. You can be certain that we all understand your experiences, and I think we would all totally agree with what you've said about forums; We all get massive value from the forum.
 
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alex3619

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Seems quite reasonable if she is promoting her business that does harm to patients then she should be sued.
Law suits seeking damages typically require you can demonstrate you have been harmed. Otherwise its really hard to get a win. Other options sometimes exist, such as injunctions, but again you have to demonstrate harm. This can be difficult, especially if you are engaging in legal action on behalf of others. That is more a concern for law makers, i.e. politicians. Its more a political matter than a judicial one. With appropriate laws then things can change.
 
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Liva Landmark announced today on twitter that her article lead to a lot of debate - and that she is writing "a reply" to this which will (later) be published in the same newspaper as the last time (VG).
I'm really glad that you @Jonathan Edwards replied to her first article!
This LP-Coach and ex-journalist Live Landmarkhas really made big problems for Me-sufferers and carers in Norway, with her campaign and lobbyism toward doctors, health personell, researchers and politicians, She has been very rude to the "ME-mammaene" - with statements like "ME-mothers behavior and symptom focus (of child with ME) are the cause of their child not recovering" etc. This is really sad.
 
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TiredSam

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"ME-mothers behavior and symptom focus (of child with ME) are the cause of their child not recovering"
So if a parent tries to help a child with ME but the child doesn't improve, it's the parent's fault.

If Live Landmark tries to help a child with ME but the child doesn't improve, it's the child's fault.

Who on earth needs this woman butting in and blaming everybody for an illness she obviously doesn't understand? What is the cost of this woman feeding her own ego, and why should anyone have to bear it?
 

out2lunch

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She has been very rude to the "ME-mammaene" - with statements like "ME-mothers behavior and symptom focus (of child with ME) are the cause of their child not recovering" etc. This is really sad.
This is the same "blame the mother" garbage right out of the fifties that plagued parents with autistic children:

"Autistic-mothers behavior and symptom focus (of child with autism) are the cause of their child not recovering."

What the hell is wrong with these people? And they seem to be everywhere! In all facets of society!

Instead of advancing the rights of minorities -- including the DISABLED -- these narrow-minded bigoted hate mongers are doing everything they can to time warp us back five or six decades to where no one had any right to "life, liberty, and the pursuit of happiness" but a small select group of privileged individuals. And anyone who falls outside of that small select group of privileged individuals becomes a ready target for attack, much like prairie cattle ranchers going after the indigenous wolf population.

There is now enough objective research data collected on ME/CFS/FMS to drop-kick this fallacious psychosomatic argument as was previously applied to autism. But unlike autism, we haven't yet reached a tipping point to where these non-physiological explanations get instantly discredited along with their tinfoil hat-wearing promoters. And I'm getting damned impatient for that tipping point to finally occur.

When will our patient cohort finally get the same acceptance as autism or MS or RA or lupus?

Why are those diseases accepted as physiologically-based illnesses but we still get labeled as lazy shiftless depressed malingerers?

When will we finally get the acceptance we deserve?

:mad::mad::mad:
 

deleder2k

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To suffocate debate


Published in VG 08.21.2015

In the chronicle "the ME community can harm patients" I mentioned an Internet based patient community. The source is a Norwegian study that has documented a ME-community with a common understanding of reality and a strong culture. The norm in the society is to present negative experiences, and there is little room for counter-voices. Research that does not match their understanding of reality that ME is primarily a "physical illness" are criticized.


I highlighted the challenge of such groups: Members can look at those who have a different view as "enemies" and thus trigger an unfortunate polarization.


Jonathan CW Edwards, a director of the world's largest ME Forum, demonstrates this in VG by rejecting my chronicle while he criticizes me personally. Thus he shows that the Norwegian study's findings may also apply to international relations.


While debating ME it pleasant to know who’s saying what. It is relevant to know whether posts originating from a patient, a relative, a researcher or a treat in the field. Since Edwards is retired, I mean it's untidy that he draws the professor card. It is also important to highlight that his colleagues at Kings College, do not share his view.


One of the studies I mention was both criticised by Edwards and the ME Association. Neither of them connect my point: the PACE Study shows no improvement at pacing, which is the prevailing recommendation from the ME Association, which is based on different user surveys.


The ME Association says that their members gets sicker of cognitive therapy and graded exercise. Research shows the opposite. The allegations show that the association's members experiences are not transferable to everyone diagnosed with ME.


The PACE study concluded that it is possible to recover from ME. This corresponds with recent studies, but there are unfortunately no single cure for everyone. The ME Association says that we who becomes healthy with mental techniques are not representative for the patient group. This is an unfortunate signal, that cannot be backed up with research evidence.


Critics seem to perceive that the chronicle are my opinions, while it is primarily based on extensive research. The claim that cognitive therapy and customized training has the best proven effect is based on the Knowledge Centre (In Norway) review of all international research in the field in 2011, and is supported in a recently updated Cochrane review. These are studies of studies, which is considered the highest level in research, but my approach is called pseudoscience by the retired professor.


Edwards encourage me to participate in the debate on the ME-forum and describes it as a serious debate arena. In a post on the forum, he asks me to "run away with my tail between legs" while the debate continues as follows: "She has terrorized us in Norway with similar articles in six years. It does not seem that there is some way to stop her. I wished she could, because every time she publishes a new article I become so upset and symptoms worsen. If anyone has an idea on how to stop this reporter, I am grateful for tips. "


In the chronicle I write that ME is a physical condition with physical plagues, and not a mental illness. Edwards argues, however, that I do not seem to be aware of this.


My point is that it may be harmful for patients to form rigid beliefs about ME. Edwards says that cognitive therapy has little support on the ME-forum, thus showing that they reject psychological mechanisms. This can prevent the use of treatment with proven efficacy, and thus recovery.
Translate by Google Translate and myself. @Jonathan Edwards, I believe the translation is fairly accurate, please ask if you have any questions.

Source: http://www.livelandmark.no/slik-kveles-debatt/ and todays VG 2015.08.22 (Print)

EDIT: 0035 CEST, swapped the word "chairman" with "director" (of Phoenix Rising). Translation mistake by me.
 
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Live Landmark is an NLP coach, Lightning Process practitioner... ... Here she has moved from promoting/marketing her coaching business to ineptly trying to validate the PACE Trial, cbt/get etc, criticising those who do not want to buy her wares, and insulting those who disagree with her.

Phil Parker (lightning process inventor) has also in the past resorted to insulting, even defaming, knowledgeable patients who are more than qualified to critique lightning process. It's uniquely aggressive behaviour from what are really NLP practitioners selling coaching courses (lightning), behaviour that is not compatible with the usually benign image of alternative practitioners.

Phil Parker has always insisted that Lightning is not Cbt, so what on earth is Live Landmark's motivation, at this precise moment, to embark on so very determindly bringing cbt/get/Pace to the attention of the Norwegian public? What is going on right now that a Lightning practitioner should so publicly try to discredit ME patient groups (those who do not want to buy a commercial coaching course, ie lightning).

There are many previous threads about Lightning on PR, including this one:

http://forums.phoenixrising.me/inde...n-me-by-six-norwegian-professors.34142/page-2

.
 
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alex3619

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My point is that it may be harmful for patients to form rigid beliefs about ME. Edwards says that cognitive therapy has little support on the ME-forum, thus showing that they reject psychological mechanisms. This can prevent the use of treatment with proven efficacy, and thus recovery.
Let me use the same reasoning, with the caveat that I am relying on a translation so might miss something.

"Antivirals have little support with behavioral modification practitioners, thus showing they reject biomedical mechanisms. This can prevent the use of treatment with proven efficacy, and thus recovery."

Anyone rejecting this claim, which I do by the way, has to reject the first claim. Its the same reasoning.

For those who are unaware, the preference of an RCT over case control series is that it has more checks against bias. Yet its also about response sizes. Antivirals, on specific subsets with proven viral presence, has an effect size most of an order of magnitude better than CBT. More patients respond, and the response size is larger. So within EBM provisions, PACE with all its limitations needs its evidence rating downgraded, and case control series of antivirals need their evidence rating upgraded.

Proven efficacy means more recovery? No, it does not. Show me objective outcome measures! As for "proven", I consider their data, rather than their claims, which shows CBT and GET are very poor therapies at best.

Psychological mechanisms? Show me the objective markers! Its unsubstantiated hypotheses.​
 

out2lunch

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The most irritating aspect of this attitude regarding our community's so-called "rejection" of "psychological mechanisms" is the presumption that none of us have tried psychotherapy in our attempts to get better.

Yeah, I've done psychotherapy. Lots of it. Both as an outpatient and inpatient. Plenty of problems... plenty of misdiagnoses. But... I got ME/CFS and FMS and MPS and MCSS, anyway. And who's to say that I didn't have these diseases when misinformed psychiatrists were absolutely rock certain I was this atypical bipolar patient who just happened to not improve with every single Big Pharma drug they tossed my way. Sound familiar? I'm sure it does.

So I'd like to offer one big extra special American west coast effyu to these herring breath blowhards who are so clueless about selling their stupid snake oil mindgames that they fail to realize ME/CFS does not cause rampant stupidity. Duh.

In other words... we can see through the smokescreen, geniuses. Try shilling your mental double shuffle on a patient group that doesn't get it. And good luck with that. :lol:
 

Valentijn

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Live Landmark said:
The PACE study concluded that it is possible to recover from ME. This corresponds with recent studies, but there are unfortunately no single cure for everyone. The ME Association says that we who becomes healthy with mental techniques are not representative for the patient group. This is an unfortunate signal, that cannot be backed up with research evidence.
Apparently she can't even read and comprehend the study she's quoting. So here's a brief synopsis:

CBT and/or GET have never resulted in objective improvements. At most (such as in PACE) patients answer questionnaires in the manner which CBT has taught them to. Patients are taught, over a period of months, that they will recover if they believe they are less fatigued or disabled. Then someone hands them a questionnaire asking them how fatigued and disabled they are. A few good little patient/students dutifully insist that they are feeling better, and give the "right" answers on the "test".

Yet there is never any improvement in objective measurements. There is no better performance on step-tests, or 6-minute walking tests, or employment/school attendance, or reliance on welfare benefits, or on actometers. In fact, the Wiborg review of several Dutch CFS studies showed that CBT/GET results in no improved objective physical capacity, even while dutiful patients agree that their physical capacity has improved.

The obvious and rational conclusion is that the subjective measurements are wrong due to various types of bias, and the objective measurements are the ones which reflect reality. Of course, some CBT and LP practitioners prefer to claim that only self-reported "fatigue" matters, ergo actual physical disability is presumably irrelevant. Pardon my English, but who the fuck really cares about fatigue? We care about our ability to sit up without tachycardia, and our ability to walk without staggering due to ataxia, and our ability to do minor chores around the house without having swollen lymph nodes and body-wide pain for days afterward.

But Live Landmark already knows about most of this, presuming she actually read Professor Edwards' reply. Thus the likely conclusion is that Live Landmark is a fraud who delights in her own ignorance because it allows her to indulge in her own delusions. 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 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.

If she thinks our response to her disgusting diatribe is inappropriate, she should try the same tactic with MS patients, or cancer patients, or Lupus patients, or any other forum for patients whose illness has been established to be biological to the same extent which ME has. Considering the outrageous nature of her behavior, our response has been exemplary.

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.
 
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deleder2k

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I wrote to Live Landmark on twitter:

Should you not be honest about the fact that PACE shows that patients don't go back to work and that CBT does not help patients walk longer than they did before? Healthy ???


Live Landmark:
I relate to the researchers' conclusion in the study. Results correspond with Rituximab, say those who have done som calculation
Not sure if I am shocked about this or not. She actually says that the result of the PACE trial is as good as what the preliminary studies on Rituximab has shown. Does she really think that a study that shows no change on walking tests are equal to the results of Rituximab? Didn't we discuss this in some thread? About SF36? Can anyone point me in the right direction?
 
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