The ME community can harm patients

[A.B.]

I think she is forgotten the refrigerator mother theory a widely discarded theory that autism was caused by a lack of maternal warmth.

The person who came up with this idea was Bruno Bettelheim, an Austrian psychoanalyst. He wrote books with titles such as "Love Is Not Enough" and was nicknamed "Brutalheim" due to physical abuse he inflicted on the children at his clinic. Other psychiatrists knew but did nothing. His theories about autism have been discredited and the claims of curing autistic children were most likely fabrications.

What I find disturbing that breaking contact between children and their parents was part of Bettelheim's treatment, and this is still being done today in "psychosomatic" conditions (see Justina Pelletier, or Karina Hansen cases). The thinking seems to be "guilty until proven otherwise".

Of course, when psychiatry has a bad reputation it's only because of the stigma of mental illness .

 

[Never Give Up]

Me thinks the ME community is harming their rapid wealth acquisition plan.

 

[Sidereal]

After all we even have the opposition writing articles about how naughty we are.

You know you're doing something right when you get haters.

 

[Never Give Up]

At scientific meetings everyone is polite, even when bad research is presented...

I guess that must vary by specialty. The first time I attended sleep medicine scientific meetings I was shocked at how attendees lined up at the microphones to rip the research to shreds. As time went on I came to see it as an effective way to improve research quality and improve the knowledge base. Later when I was presenting posters of unique, but telling cases, I knew to expect and prepare for intensive critique.

 

[alex3619]

The trial was not a gold-standard double-blinded placebo-controlled trial, and the small number of participants who reported feeling better after treatment in subjective self-report assessments, could be explained simply by the weaknesses in the study design.

These points need to be repeated again and again. Particularly about this not being gold standard. As usual they define the term to mean what they want it to mean.

 

[alex3619]

Of course, when psychiatry has a bad reputation it's only because of the stigma of mental illness

Countries do lots of good things for their citizens. Yet when countries do some of the things psychiatry has done they get lots of people investigated for crimes against humanity. We need psychiatry, with the current state of the world we cannot do without it, but what we need is compassionate, evidence based, rational and scientific psychiatry. What we have is very different to that.

 

[worldbackwards]

One of the things that really annoys me about this stuff is this idea that the patient groups are all powerful and conning people into believing them.

If you become ill, you go to a doctor. They are the gatekeepers to both information and treatment. To be honest, if the doctors were pedalling treatments that worked, the patient groups and forums would be an extremely hard sell: Do this treatment and recover over time vs You can manage your illness better but you like as not won't really get well - which would you choose?

I remember the first time I saw the extremely gloomy message of the support groups on the internet. I was put off; I was already very ill at the time, trying to get on with my life as best as possible and getting worse fast by following "medical advice" ("just you keep busy and it'll all go away in a couple of years") but what did the support groups offer me? Quit college, go home, do nothing and you may feel a bit better but your life is basically over for the foreseeable? Oh yeah, I jumped at that.

The reason in the end I had to come back to it was, once I had completely ruined my health, it was indisputably true. And given the alternatives (basically someone sitting me down to explain that my severe disability that their advice had made as bad as it possibly could be was a fantasy that they refused to believe in), it was all I had left. The support group position, the realistic position, on ME has no comforting appeal. It's where you end up when there's nowhere left to go.

And I still went back and did GET for a bit. And it still made me unwell. Such is your power.

I blame the MEA and PR, scumbags that you are.

 

[alex3619]

We are a fractured, divisive and almost powerless community. What has got some worried, I think, is that "almost powerless" part, together with the advances in the science.

We have the core of advocacy communities around the world. If Rituximap passes phase three trials as we expect then this discussion is going to get a whole lot more interesting. Advocacy will again have a theme most of us can rally around.

Let me give an example. There are maybe a million patients (or the lower ME figure) in the US. How many of them are here? If we were that powerful most of the less sick patients, maybe 700,000 of us, would be here. That is not even counting the rest of the world, like here in Australia or New Zealand, the growing presence in Japan, or much of Europe.

 

[SOC]

Knowledge is power. What these psych-theory people are afraid of is the knowledge we gain talking to each other, in particular the knowledge that their quack treatments are NOT, in fact, working for PWME and are in many cases doing harm. If we were raving about how effective their quack treatments are, I'm sure ME communities would be considered valuable social outlets for us. They don't want us to have the (admittedly limited in our case) power that comes from sharing information and experience with other patients.

Any time someone suggests you should avoid communication/information/knowledge, you know something is very, very wrong. It's even worse when they consider themselves the gatekeeper who determines which knowledge is good and which is bad.

 

[Hip]

Certain people who've had a good experience of the Lightning Process (and possibly been fortunate in having a particular type of ME in the first place that others don't have) love to trumpet its success at providing a cure, but I'm pretty sure the much repeated assertion that "these therapies depend on the patient's motivation and active participation" is not just a cynical disclaimer; I suspect there is evidence to suggest it's simply untrue. Does anyone have dependable statistics on the Lightning Process' failure rate for pwME who participated fully in the course? If they continue to argue that people who have lasted the course and yet still fail to get better do so because they're insufficiently motivated, then there's really no way anyone can take the treatment seriously in the first place.

There is a current clinical trial underway, headed by Esther Crawley in Bristol, to assess the effectiveness of the Lightning Process. Cort wrote a blog article on it.

Also, in an ME Association survey (see page 9) on the efficacy of various ME/CFS treatments, the Lightning Process did very well, with 25.7% of people saying they improved greatly of the Lightning Process, and 18.8% saying they improved. Interestingly, 12.9% said they became much worse after the Lightning Process.

As points of reference, only 2.8% said they improved greatly from CBT, and 8.1% said they improved greatly from the immunomodulator inosine / Imunovir.



The Lightning Process involves re-training your mind to switch off or reduce the constant state of over-excitation and arousal that Phil Parker, the originator of this treatment, thinks is playing a role in ME/CFS. Obviously this would require a certain level of patient motivation and active participation, more than say just taking a daily oral medication for ME/CFS, which requires minimal effort.

The principle behind the Lightning Process seems sensible; what I don't like is when some therapists and patients turn the Lightning Process or similar therapies into a religious faith, with the idea that if you don't completely and totally believe that this therapy will work, then it will not.

Nor do I like it when any success in treating ME/CFS with the Lightning Process or similar therapies leads therapists or patients to conclude that ME/CFS has a psychogenic origin, ie, that ME/CFS is "all in the mind". That conclusion is definitely a non sequitur.

However, I think it is correct to say that if you were to try the Lightning Process, you would need active commitment, and you would need to apply yourself to it, in order to stand the best chance of it working for you. I would think it is not the sort of therapy you can do with your brain switched off.

 

[duncan]

There is very little about the Lightning Process that seems sensible to me - even less that seems relevant to ME/CFS.

 

[Stretched]

This was published in the biggest newspaper in Norway today by the therapist and former journalist Live Landmark. She has been "educating" and "curing" patients with Lightning Process for years. She was recovered from ME herself by doing the "process" herself... .

Unfortunate polarization

ME-society prevailing view is that ME is primarily a "physical illness". Members spreads information that matches their understanding of reality and criticizes research that do not.

One advantage of internet forums is the feeling of being united. The challenge is that it reinforces a group identity, where the consequence can be a devaluation of "the other side". This means that those who participate in the ME community can come to look at those who have a different view as real "opponents". This forms the basis for an unfortunate polarization, affecting researchers, clinicians and patients.

Let's not toss all the water out with the baby... .

No doubt, there is psychobabble here. OTOH, there are also parts here that make a lot of sense, namely the sociological aspects of unifying with like-minded segments (often political in nature). So, this observation by this therapist rings true (to me).

However, in many cases these segments are akin to followers of Ashnan Tegamoti and his high flying minstrels. They put on a good show and the followers show up. Then they behave exactly as the article states AND they gain power over maverick thinkers who may be more on track (Lipkin, Chia come to mind).

Never mind these sects of the faithful aren't 'true PWC's'... . In the end a lot of bad information gets passed around and many on the 'outside' have to deal with cryptic messages from a diverse and often questionable population. It's a real problem and needs highlighting even if it has to be pulled out of context!

 

[Hip]

Live Landmark's following remark is not correct:

A follow-up study concluded that one can fully recover from ME.

As has been discussed, the authors of that study redefined the word "recover" to mean "recovery from the current episode of the illness". Such "recovery" falls well short of what people normally mean when they say they have recovered from an illness. It is a bit of con that the study authors redefined that word in this way.

 

[barbc56]

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.

Maybe this is what the LP/psychobabble folks have been saying all along and we've just been misinterpreting what is being said?

Barb

 

[TiredSam]

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.

Maybe this is what the LP/psychobabble folks have been saying all along and we've just been misinterpreting what is being said?

Barb

I thought it was called the lightning process because they are lightening our wallets.

 

[user9876]

Live Landmark's following remark is not correct:

As has been discussed, the authors of that study redefined the word "recover" to mean "recovery from the current episode of the illness". Such "recovery" falls well short of what people normally mean when they say they have recovered from an illness. It is a bit of con that the study authors redefined that word in this way.

They didn't just redefine recover to mean recovery from the current episode of the illness. They completely redefined the idea of recovery to include people who would have been able to join the trial. They changed thresholds for recovery on their scales from those in the protocol so that they were so low that they were at or below the trial entry criteria. According to them a large number of patients no longer met the Oxford criteria including a significant number who were even below their new very low trial entry criteria. This suggests the criteria are at best flakey in consistency which is perhaps why they lost so many patients in their recruitment process.

They made clear factual errors in the reasoning about how they reset threshold and they know this as does the journal who published the paper but both have failed to withdraw or correct their paper. They have also claimed it is harassment to write letters to journals criticizing their analysis and to ask for them to release recovery data that was defined by the clinical protocol.

I cannot see how they can think that they are not misleading doctors and patients with their claims.

 

[Valentijn]

This has to be one of the stupidest ME/CFS psychobabble pieces I've ever read. Not just because it's wrong, but because Live Landmark does a shockingly good job of undermining her own position.

She starts by stating the biological viewpoint for causation. Bad move, psychobabbler! Now her audience has an alternative framework in mind which makes a helluva lot more sense than what she very vaguely and sloppily proposes

Then she describes ME patients too sympathetically, as being both desperate and stigmatized. She proceeds to do quite a bit of the stigmatizing herself, by opposing medical treatment, biological research, and online patient support communities. She's really looking like a dick at this point

And she provides us with a decent summary of pacing. Patients reading her crap will now know that it exists, and probably figure it's worth a try after being put off the author's own bizarre assertions

She makes it sound like pretty much everyone except herself and a few study authors are in the biological camp. Patients, clinicians, researchers, and even government authorities are all specifically mentioned, and apparently on the same side! Camp LP Quack is starting to look a little lonely

Now she provides her proof that psych therapies are the cure ... surely it's all over for the rest of at this point! But no, it's just the PACE trial, which showed no objective improvements resulting from CBT, and sure as hell didn't show anyone actually recovering. So her only support for her psychological hypothesis is a widely discredited trial, which actually showed that CBT is a failure. It's not going to look good when someone publishes a response pointing out her major errors in that regard

And finally she takes the IOM report very badly out of context. Not a "classic" mental disorder, and still cured with CBT? The IOM completely refuted the concept of it being anything except a biological illness, and have stated so plainly and repeatedly. But it's very kind of her to lead people to a document which so blatantly contradicts her

Anyhow, most readers will be at least skeptical of her claims, due to the manner in which she presents them. She comes off looking like a raving paranoid loner, actually ... does LP claim to cure that too?

 

[TiredSam]

Any time someone suggests you should avoid communication/information/knowledge, you know something is very, very wrong. It's even worse when they consider themselves the gatekeeper who determines which knowledge is good and which is bad.

When someone disagrees with / questions their views, it seems to be a common reaction among psychoquackers to respond by diagnosing, invalidating, insulting and abusing their target group still further. When people in other walks of life behave like this it doesn't usually matter, you can just let them have their hissy fit and ignore them while they make a fool of themselves, but the problem as I see it with the psych brigade here is that when they behave like this towards ME patients they are given credence, publicity, and influence when deciding policy. This is an absolutely horrendous and unacceptable situation.

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. At PR there is space for people who want to discuss alternative remedies (including amygdala whatever, tapping etc), spirituality, and a wide variety of discussions on different approaches to managing symptoms. Healthy debate. Sometimes a consensus is reached among a majority of members, so what?

This article is no more than a typical strawman + ad hominem argument from someone who's got nothing else - make up a negative view of the culture of the forums and attack / blame the disagreement with her ideas on that, instead of answering any points of substance.

 

[seaturtle]

You all know this already, but I think we can't repeat it enough...

The lowest level of physical functioning permitted by the (post-hoc) definition of 'recovery' for the PACE trial, actually indicates deterioration after treatment (which is obviously the opposite of a 'recovery'), and it's a level of functioning that would have allowed recruitment onto the PACE trial (so a patient is hardly 'recovered' if still ill enough to be classed as having CFS/ME and recruited into the trial), and also it's a level of physical incapacity has been described as 'severe' in other literature (see first link, below). The (post-hoc) 'recovery' definition was determined using a flawed statistical method, and it was justified by using a factually incorrect interpretation of normative data; These are errors that should have been corrected by now if the authors and journal were doing their job properly, since they have been highlighted in published literature (see second link below).

Published literature that confirms the above info:
http://journals.cambridge.org/abstract_S003329171300127X (see second column).
http://link.springer.com/article/10.1007/s11136-014-0819-0#page-1 (click on 'look inside' for preview of full text).

 

[TiredSam]

Let's not toss all the water out with the baby...

Don't mean to be pedantic, but aren't you supposed to avoid tossing the baby out with the water?