We'll have all the answers about CFS after EHPS psychology conference in Sept ... or maybe not!

[A.B.]

When I said this was mainly because of lack of funding, all I got was a blank stare. So it doesn't seem to me like they're going to be changing their mind any time soon. Can't wait for the day science catches up...

You should have said: they actually have to deal with reality, so it takes some time.

 

[JaimeS]

That would be an unhelpful cognitive and behavioural response.

Oh dear!

The questioner would be diagnosed and shamed in public, and the audience would start singing and chanting.

RUNRUNRUN!

Or, uh, if you have moderate to severe ME, get someone to wheel you away post-haste!

-J

 

[JaimeS]

I mean, those people (=the biomed crew) keep SAYING there is, but really there isn't. They have nothing to base anything on. Nothing at all.' I asked her if she read the latest research findings that came out this year (Hornig etc.) but she kept saying: 'These findings are useless because they are unable to reproduce the findings! They're just unable! Totally un-able!' When I said this was mainly because of lack of funding, all I got was a blank stare.

Is this like the doctor who looks at all your lab tests, some of which are wildly off-centre and still claims that there is nothing wrong?

A really good study should be reproduceable, of course it should. But when you get one that looks well-designed, the immediate assumption should not be that they must be lying. Instead, you should think, "hmmm... I ought to consider this."

You know. Like a real scientist.

-J

 

[JaimeS]

You should have said: they actually have to deal with reality, so it takes some time.

BURN.

 

[Effi]

wildly off-centre

off-centre is FINE! you are FINE! stop complaining!

 

[JaimeS]

off-centre is FINE! you are FINE! stop complaining!

Oh...! If only I could conquer this negative state of mind! *swoons*

 

[SOC]

Why wait?

-J

So we can work from a stronger position?

Currently we are still fighting "that has not been reproduced" and "the evidence base doesn't support that". When the day comes that biomedical evidence has been reproduced and the evidence base clearly shows the physiological basis for this disease, those idiots will no longer have their artificial constructs to hide behind.

If I'm honest iwth myself, though, I have to say that I'm expecting them to try "Oh, we weren't talking about those ME/CFS patients. We always believed them. We always meant the people without neurological or immune symptoms or abnormal lab tests. The fact that those ME/CFS patients have a neuroimmune illness does not negate our research into CFS patients because CFS patients don't have neuroimmune illness. All those patients never had CFS/ME. They were misdiagnosed. We know this because CFS/ME is a psychological condition and those patients have a biomedical illness." CYA with circular reasoning at its best.

 

[Effi]

I'm expecting them to try "Oh, we weren't talking about those ME/CFS patients. We always believed them. We always meant the people without neurological or immune symptoms or abnormal lab tests. The fact that those ME/CFS patients have a neuroimmune illness does not negate our research into CFS patients because CFS patients don't have neuroimmune illness. All those patients never had CFS/ME. They were misdiagnosed. We know this because CFS/ME is a psychological condition and those patients have a biomedical illness.

This is actually already happening. Very slowly, very quietly. In research, and in real life. I recently heard this from a patient of one of our local cfs treatment facilities (formerly classic 100% GET/CBT):
doctor: 'we don't do cfs/fibro anymore as a diagnosis here.'
patient: 'then what is your stance towards the issue today?'
doctor: *pretending not to hear patient, refusing to give an answer*

So patient turns to centre's extended info leaflet in search of answers. It says the same thing about not 'doing the cfs thing anymore'. Also: 'We do not use GET anymore in our approach.' A couple of paragraphs further on there is a description of the treatment along the lines of 'gentle movement/slowly progressive/reinsertion into employment'. Their idea of scientific proof is: 'from a logical viewpoint central sensitisation is to be considered as explanatory'. So basically the same old nonsense in a camo jacket. It's well hidden but it's still very much present.

My take on this is they are still doing exactly the same thing, just calling it something else/nothing at all. They know biomedical proof is around the corner and are trying to make sure they don't look like complete fools. When the time comes they'll do the whole 'oooh but we knew this all along'. The perfect crime.

 

[JaimeS]

I have to say that I'm expecting them to try "Oh, we weren't talking about those ME/CFS patients. We always believed them. We always meant the people without neurological or immune symptoms or abnormal lab tests.

When the time comes they'll do the whole 'oooh but we knew this all along'. The perfect crime.

And THAT'S when we pop out of the woodwork and get to point out the idiots? I'm sorry, it's just that I'm so impatient.

Seriously, these people engaged in a massive attempt to defraud the public. And honestly, apart from their own psychological problems, I really still can't grasp why. The only answer that makes sense is, "they're crazy." I'm aware that our research isn't incredible, but there are certain lab findings that are consistent. This makes more sense to me as a hard scientist than their 'woo-woo' crap.

Still, I heard someone say today (a doctor in training), "a study with 350? What do they think that proves? Nothing, that's what it proves. It's a joke. A joke." (He was talking about the state of Lyme treatment/diagnosis.) While I agreed, I began to wonder a bit what is considered 'significant'. I have a line in my own head, but maybe I've drawn it arbitrarily. Okay, you science people: weigh in. How many subjects would have to be in a study before YOU took it seriously?

Assuming, please, that this is your only criteria: that all other things are equal.

-J

 

[SOC]

How many subjects would have to be in a study before YOU took it seriously?

Statistical significance is SO much more than mere number of subjects in the study. Your doctor-in-training is grossly oversimplifying the situation and probably knows next to nothing about what makes a quality research study.

My brain is not up to details of statistics at this point, but maybe one of our statisticians will chime in here. All I remember (damned cognitive dysfunction) of that stuff is that there's a whole complex set of decisions and requirements to work through to figure out what number of samples is needed in a particular situation in order to achieve statistical significance in your results. Some of it involved the nature of the members of the sample. Sheer numbers isn't it.

 

[JaimeS]

Sheer numbers isn't it.

....I had a feeling someone was going to say that. (Sigh.)

Yes, he was a tiny one. Fresh out of medical school and very sure he knew best, although at least he wasn't an idiot.

-J

 

[Effi]

How many subjects would have to be in a study before YOU took it seriously?

I am not a statistician, but I do know that 350 is better than 0. That's how all complicated research starts: small. It is not fair to not take an illness seriously UNLESS there's a gazillion $ poured into research and there's endless patient cohorts being studied all over the place. Decent research in a previously pretty much unexplored medical field is not something you just pull out of your hat. Oh, wait, they actually do this. Just researching made up stuff using questionable patient cohorts with an outcome that just perfectly fits their expectations, every single time. [...] Excuse me, what did you just say? [...] Oh right, that that is not real science.

 

[alex3619]

study with 350? What do they think that proves? Nothing, that's what it proves. It's a joke. A joke

This comment shows the joke is on them. Size of study is related to how well the study establishes a large outcome. Large effect sizes can be reliable with small studies. Subtle effects require really large studies. They do not understand the topic.

Longitudinal studies are important too. I could argue, with some justification, that the only first class interventional studies are generations long epidemiological studies, involving huge numbers in the population, that look at long term outcomes of clinical interventions.

I am relatively untrained in statistics and evidence based approaches. Yet its easy to see most doctors know even less. Most of the platitudes I hear are just wrong. Someone trained in evidence based practice would not make these mistakes. I suspect evidence based medicine is dumbing down doctors.

 

[duncan]

If that conversation about critiquing a Lyme study for only employing 350 subjects was accurate, I wonder what this young med student would think of the entire IDSA Lyme treatment protocol. It is predicated upon four RCTs:

Two by Klempner et al, which totaled 129 patients, so an average of about 65 each;
A study by Krupp et al which employed 55 subjects;
A study by Fallon et al which had 37 subjects.

The dogma which proclaims prolonged abx treatments are generally not beneficial for Lyme patients is pretty much derived from these four RCTs. Together, they totaled 221 subjects - substantially less than 350. And yet there are some who would argue an entire treatment philosophy is built upon the strength of those four small studies, right or wrong.

 

[JaimeS]

It is not fair to not take an illness seriously UNLESS there's a gazillion $ poured into research and there's endless patient cohorts being studied all over the place.

The dogma which proclaims prolonged abx treatments are generally not beneficial for Lyme patients is pretty much derived from these four RCTs. Together, they totaled 221 subjects - substantially less than 350. And yet there are some who would argue an entire treatment philosophy is built upon the strength of those four small studies, right or wrong.

To be fair to the young man, he was making this very point - frustrated with the state of Lyme research, not claiming Lyme doesn't exist. Though he did say that Lyme as we know it is limited to the east coast of the US. I'm not sure if his point was that there was some other infectious organism to blame or not - he moved on too fast. He was a fast talker! He also said that he believed Lyme was mischaracterized as a spirochete. He did research on Lyme in school.

He also gave me the line that he was born and raised here and didn't know anything fancy, but honestly he already knew a lot more than most doctors I see, so good on him. Also, the line that amounted to, "I'm a simple country doctor" made me flash to Bones.

Last but not least, he correlated Alzheimer's plaques to the punctate white lesions found in ME, which I think was a total mistake, but at least his brain is open and functional. Which, again, is more than I can say for others.

Also, I told him about PR, so let's keep it friendly.

-J

 

[jimells]

The world should know these people made money and prestige off of abusing the weak and helpless.

Abusing the weak and helpless is the very foundation of Western "Civilization". Society celebrates such abuse. Who gets to be "king" - the peacemakers or the killers?

The psychobabblers are simply doing what they are "supposed" to do. They didn't get to their positions by being troublemakers, and once there, much effort must be expended to stay on the top of their dungheaps. It's too bad about the weak and helpless, but *somebody* has to be at the bottom of the pecking order.

 

[jimells]

Seriously, these people engaged in a massive attempt to defraud the public. ...I really still can't grasp why. The only answer that makes sense is, "they're crazy."

How about, "They're greedy psychopaths"

 

[JaimeS]

How about, "They're greedy psychopaths"

I have an inherent issue with believing that psychopathy is that common. People can be selfish or cruel, but the idea that promoting oneself to the exclusion of all others being a trait that all social-model psychotherapists share leaves out the foolish, the uninformed, the deliberately misled, the people who have backed themselves in an ethical corner from which they cannot escape: that is, the people who have dug themselves so deep into this belief system that leaving the foxhole means exposing themselves to enemy fire.

These are human beings, and approaching them as such is the only way to change their minds - if that is even possible, which I certainly hope it is. When we characterize them as inhuman beasts bent on our destruction, we lose all hope of convincing them. (And from our own point of view, what would be the point of trying to convince them, if they are just monsters looking to profit off of us until they've murdered us all? Trying to work on the unmovable would be illogical.)

I guess in this way, I am doing just as they do, and supporting the point of view that results in the most favorable outcome for me: believing there is more to the GET approach and the diagnosis of somataform disorder than malice + profit. However, when I go searching for data, therapists apparently are one of the ten professions least likely to house psychopaths.

I mean, I guess all the psychopaths could all have gone into the study of ME, but somehow... I don't know. Maybe psychopathy is the wrong 'diagnosis'. I'd say to go into any of the helping professions (and I include my own, educational background in this assessment) there is a tendency to develop a God complex - that you know better what is best for others than they can determine for themselves - and probably a tendency towards narcissism (look at how awesome I am; look at how well I take care of others; look at how amazingly I do so despite their virulent protests; woe is me, for they do not appreciate the awesomeness that I am; yet I continue to persist; look at how noble I am, how I continue to work despite any thanks; they'll thank me someday. Someday, when they're cured. *Cue noble fantasy of ex-patients thanking therapist with tears in their eyes* + = )

Perhaps I'm splitting hairs, but I think which one it is, matters.

I'm working on the assumption that we care about convincing them. I mean, it's very tempting to throw up our hands and say, 'screw it - they are psychopaths, they can't be reasoned with'. But we don't have the time to just wait for all the stupid ones to die off. It'll be another generation of mistreatment.

Psychopaths just need to be persuaded it's in their best interest. "The tide is turning and you know it. Back away from the GET quietly to avoid future litigation." (As previously commented, this is already happening, due to what their lawyers are saying - law, BTW - one of the professions MOST likely to house a psychopath.)

Narcissists have to believe that this will not impact their importance. If you can convince them that they can be a voice for the voiceless or something, they'll jump right on board - so long as you can convince them that will lead to greater importance yet potential for martyrdom than they currently experience.

-J

 

[Effi]

I'd say to go into any of the helping professions (and I include my own, educational background in this assessment) there is a tendency to develop a God complex - that you know better what is best for others than they can determine for themselves - and probably a tendency towards narcissism (look at how awesome I am; look at how well I take care of others; look at how amazingly I do so despite their virulent protests; woe is me, for they do not appreciate the awesomeness that I am; yet I continue to persist; look at how noble I am, how I continue to work despite any thanks; they'll thank me someday. Someday, when they're cured. *Cue noble fantasy of ex-patients thanking therapist with tears in their eyes*

nicely phrased, @JaimeS ! I think we all have come across a few of these species...

 

[jimells]

I'm working on the assumption that we care about convincing them.

I want to bury them, not convince them (evil laugh).

No, seriously. When the Weasel School is done with us, they will find another group of patients to abuse, like they have previously with autism and MS, for example.

I mean, it's very tempting to throw up our hands and say, 'screw it - they are psychopaths, they can't be reasoned with'. But we don't have the time to just wait for all the stupid ones to die off. It'll be another generation of mistreatment.

You are right that waiting for the stupid ones to die off is not sufficient. Freud the Fraud died decades ago, and just recently I heard the present day president of the American Psychiatric Assoc. singing the praises of Freud on CBC Radio's Sunday morning program. We must drive a stake through the heart of the Psychosomatic House of Dung.

Psychopaths just need to be persuaded it's in their best interest. "The tide is turning and you know it. Back away from the GET quietly to avoid future litigation." (As previously commented, this is already happening, due to what their lawyers are saying - law, BTW - one of the professions MOST likely to house a psychopath.)

Ha, ha, yes. When I was faced with losing my home in a lawsuit, I wasn't particularly looking for "Mr. Nice Guy" lawyer. My main concern was keeping my home so that I could stay alive. Severe ME patients can not survive long under a bridge.

I didn't mean to suggest that all the conference attendees are psychopaths, I was thinking more about Sir Simon and gang, and the corporations that own them. I saw an interesting documentary on corporations a few years ago. The basic premise was that corporations are psychopathic. It went into some detail regarding symptoms and how they present themselves in corporations.

Personally I think psychopathy is the nature of hierarchies of any kind. Even if that is not so, corporations have come to dominate pretty much all of our social institutions, and infected them with a very bad disease. At the top of the pile of misery sits Goldman Sachs and Lloyd Blankfein "I'm doing God's work".