MrMagoo
Senior Member (Voting Rights)
Seems like you’re trying to apply logic to nonsense!
Criticisms of DecodeME in the media - and responses to the criticisms
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MrMagoo
Senior Member (Voting Rights)
But he didn’t say FND is ME, he said ME is like it’s a functional disorder, you see. He didn’t say which functional disorder.
Some of you are too tied to the idea of facts, and things “making sense” and Alan spouting BS! Classic Functional Making Sense Of Things Disorder.
Jonathan Edwards
Senior Member (Voting Rights)
That is one argument - and valid.
But the other argument is also valid - that the 'ME/CFS/' cohort contained a significant number of people with some other problem with a genetic basis. The main argument against this is that the genes pulled out by DecodeME are not picked out in conditions likely to cause interference. The pain gene may be the same variant picked up in fibromyalgia but that would be a not unexpected overlap.
Yann04
Senior Member (Voting Rights)
You find similarly high rates in ME if you look at twin heritability studies.
And similarly modest ones to decodeME if you look at GWAS heritability in depression and anxiety.
Fundamentally he’s weaponising two very different ways to measure heritability. It’s like comparing degrees celcius to degrees farenheit.
Hoopoe
Senior Member (Voting Rights)
What would Carson make of the observation that the following things are typical of ME/CFS but not typical of depression?
Having to lie flat at least some of the time
Delayed worsening of symptoms in response to activities
Rest in a quiet, darkened room improves symptoms.
Can have significant functional impairment and symptoms with normal mood, for long periods of time.
PEM episodes follow a very different time pattern than depressive episodes.
The healthcare system is oriented towards detecting certain symptoms typical of depression, but has not been trained to look for certain problems typical of ME. When one only looks at things like fatigue, sleep issues, cognitive impairment ME/CFS does resemble depression, but when other things are considered it begins looking different.
Having to lie flat at least some of the time
Delayed worsening of symptoms in response to activities
Rest in a quiet, darkened room improves symptoms.
Can have significant functional impairment and symptoms with normal mood, for long periods of time.
PEM episodes follow a very different time pattern than depressive episodes.
The healthcare system is oriented towards detecting certain symptoms typical of depression, but has not been trained to look for certain problems typical of ME. When one only looks at things like fatigue, sleep issues, cognitive impairment ME/CFS does resemble depression, but when other things are considered it begins looking different.
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Some depressive co morbidity is to be expected in long term illness. Open question as to whether it worsens non depressive features. My bet is that any study of , say, MS. or sarcoid will cover numerous with depressive states.
Depressive co-morbids in the absence of genetic signatures for depression strengthens the argument against depression as initiating factor at least. The more the merrier. For a Prof of NPs I would think this would be an obvious immediate observation.
I think the question as to constitution of cohort is valid and I wonder whether I as a sarcoid sufferer with a fatigue state illness well established before sarcoid diagnosis have shown the ME signature or not.
I think there is a difference between conceptualisation and what is going on bilogically in individuals. So, C might focus on stress handling and a few of Garner's Recovery crew might fit in there, but even the Recovery crew allow that the kind of biophysical aspects addressed by Alex Howard's clinic are varied , that treatment may be necessary and such aspects may be making people sick by direct mechanisms and as general stressors.
Why " ME is a FSD" rather than "FSD is found in ME"?
Some posts have been moved to this thread:
General news about Fabricated and Induced Illness syndrome (FFI)
General news about Fabricated and Induced Illness syndrome (FFI)
Jonathan Edwards
Senior Member (Voting Rights)
Another one who needs to go and boil his head.
Barry
Senior Member (Voting Rights)
Moved posts
Another question here, this time more of a devil's advocate one.
To be very clear, I do not in any way believe ME/CFS is a psychological condition whatsoever, my wife (who is the ME sufferer) having demonstrated that day after day for many years.
But it occurs to me the psych brigade could try to argue this study does not disprove anything of theirs, and I would like to understand what the counter argument to that would be.
The GWAS basically shows that ME/CFS sufferers have a genetic predisposition towards suffering from the condition. But what if the psych brigade simply argue: "Well, all that shows is they have a genetic predisposition to having unhelpful beliefs". What is the counter argument to that? Are there mental/behavioural conditions that might show a genetic predisposition to?
Again to emphasise, I do not believe that in the slightest, I know it not to be the case. But I would like to understand.
Edit to clarify: As my post has been moved to the "Criticisms of DecodeME in the media - and responses to the criticisms", I would just like to clarify that this post of mine is not a criticism at all, simply a request for further understanding. The whole point is that I don't understand the issue enough to even make such a criticism
.
Another question here, this time more of a devil's advocate one.
To be very clear, I do not in any way believe ME/CFS is a psychological condition whatsoever, my wife (who is the ME sufferer) having demonstrated that day after day for many years.
But it occurs to me the psych brigade could try to argue this study does not disprove anything of theirs, and I would like to understand what the counter argument to that would be.
The GWAS basically shows that ME/CFS sufferers have a genetic predisposition towards suffering from the condition. But what if the psych brigade simply argue: "Well, all that shows is they have a genetic predisposition to having unhelpful beliefs". What is the counter argument to that? Are there mental/behavioural conditions that might show a genetic predisposition to?
Again to emphasise, I do not believe that in the slightest, I know it not to be the case. But I would like to understand.
Edit to clarify: As my post has been moved to the "Criticisms of DecodeME in the media - and responses to the criticisms", I would just like to clarify that this post of mine is not a criticism at all, simply a request for further understanding. The whole point is that I don't understand the issue enough to even make such a criticism
.
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"Great, maybe people with ME/CFS have a genetic predisposition to unhelpful beliefs. Unfortunately, none of the treatments you have suggested have worked, so lets examine the specific mechanisms through which these genes cause ME/CFS. The genetics seem to be pointing to people with ME/CFS having something different about genes in the brain, so lets see if we can figure out what specifically is physically different in the brain or elsewhere to try to come up with a treatment."
Kitty
Senior Member (Voting Rights)
My response would be that they'd use the same tactics whatever DecodeME showed.
Literally, it could have turned up that we're all from bloody Venus and they'd still find ways to say it's the result of unhelpful beliefs. I think we should stop worrying about them; they're beyond help.
There are people who currently share their viewpoint in the sincere belief there's an evidential basis for it, and they're probably not beyond help. They're misinformed rather than indoctrinated, and when we have a clearer story we should do our best to make sure they hear it.
Jonathan Edwards
Senior Member (Voting Rights)
Genes might predispose to beliefs through a biological mechanism. No problem. (Genes might predispose someone to the belief that they are weak if the genes encode for muscular dystrophy.)
But perhaps the strongest conclusion one can draw from PACE is that beliefs are not the problem in MECFS. So they are not unhelpful. The trial showed that you may be able to talk people into thinking differently about their health, or at least talking as if they did, but it makes no difference to more objective measures of how they are. They didn't get better. So the flaw in the argument is the invocation of unhelpful belief.
The BPS approach pivots on the idea that you can separate 'psychological' and 'social' causation from biological causation. Note that depression that is not explained as a reaction to circumstances is called "biological". Psychiatrists treat it as such. But "psychological" in the BPS sense is not psychiatric or mental, it is some causation that can be treated as outside biology. Genes are biology. So we expect biological depression to link to genes. We can also reasonably expect genes to determine how miserable someone becomes after being made redundant or losing a loved one.
But that still doesn't make reactive depression fit "BPS". Nobody is likely to say that your depression "is psychological" in a BPS sense. The BPS guru does not claim that someone isn't really depressed, and just have this mind set that they are miserable when really they are a bundle of fun. The psychodynamic therapist might claim that you believe everything is terrible when in fact it is fine and that that is the problem. But most of us in medicine long ago went over to the view that having an abnormally negative take on things is driven by biology - neurotransmitters, synapses, and so on.
If BPS people start scoffing at DecodeME and saying that, so what, lot of psychological illnesses show gene links, what I would say is that what they mean is psychiatric illness And if they are suggesting that MECFS is on a par with those why are MECFS patients dying of starvation because they are denied feeding support because their illness is seen as not psychiatric but functtional or biopsychosocial. Why do people with psychiatric disorders get full on long term care and life support when MECFS patients are just sent home to die?
Whether or not MECFS is a psychiatric illness doesn't depend on causation, it depends on the presentation of the illness. And by and large we can say pretty clearly that it is not psychiatric because it does not involve disordered thought in the way that neuroses and psychoses do but, for instance, dementia and Parkinsonisn do not. It is not an illness of derangement, but it does interfere with people's cognition. So it isn't a psychiatric disorder and never looked like one. Whether it is a bioposychosocial disorder is a completely different question, which does depend on what you believe about causation, and one which PACE answered with a fairly clear No.
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Barry
Senior Member (Voting Rights)
Yes, my wife exemplifies this. And you are right, her beliefs are fine, the key point is that they align with her very real condition, nothing unhelpful about them at all. Sensible pacing relies on this. And I've said before, she always does as much as she can, never as little.
I suppose the point is that the genetic anomalies are indisputably physiological anomalies, no matter what their manifestations or what part of the body point to.
Jonathan Edwards
Senior Member (Voting Rights)
And perhaps that depression is also indisputably physiological and those who use BPS explanations and treatments have no business to be managing depressed people either.