Lady Mar writes to Prof Wessely

[Holmsey]

It can be debated whether any evidence is "objective". Certainly in the case of politics, there is no "objective proof". Not even a signed document from Mr. Wesseley, stating that: "I have abused and neglected patients" is objective proof of anything, other than him admitting to having done so. Whether someone is deemed abused or neglected will always be a subjective judgement, depending upon which criteria you apply.

Hi Adreno, IMO, objective evidence would be where a result can be reliably predicted from a fixed set of conditions. You take a sample of blood, you treat it with solution x, you examine it with equiptment y, and the result will be a, b, or c depending on whether it's modulated by d, e or f.
I agree, a subjective discipline such as politics or psycotherapy cannot produce objective evidence.

 

[Shell]

Our stories ARE evidence. No one goes to court with just the CSI stuff- which can be subjective anyway. They have the witness statements, their stories, as part of the evidence.
The same goes (or did) for when we were nursing people. We took their stories of what had happened as evidence about their disease and then added the evidence of stories from family members.
Nearly every damn medical page I've read about getting a dx for POTs, dysautonomia, Mito disease, etc. etc. begins with "the doctor must take a detailed history," That's the story part! The reason so many of us don't have full assessments or the proper dx, let alone treatment is doctors don't take histories - they are stuck in the "machine" model where stories don't count. The flamin' computer can't dx us if we can't tell our stories. The computer is a stupid machine that can only give out what is put in. If we are not allowed to tell our stories as evidence, there will never be any evidence.
At my dear friend's inquest the bulk of the evidence was the stories from police and others of what had happened.
To say stories are not evidence is simply wrong; in medicine in law and in plenty of other areas stories are the main evidence.
I am sorry but I get a nasty sense that those who say "stories are not evidence" are accusing us of telling lies. If you want to accuse us of lying - show the evidence.

 

[Bob]

Interesting statement that I could interpret in different ways. A simplistic interpretation would be that scientists and trials produce evidence and patients produce stories. But I have an alternative interpretation:

Evidence is the fact, what is observered and measureable - although there may be error within the measurement. Stories are the discourse that subjectively select and interpet different combinations of evidence.

So a patients experiance is made up of facts (x happended, test said y) along with the story of how it fits together. The story is subjective because in is a framing for individual facts and often involves a choice of facts or an interpretation of them.

I don't see a clinical trial being a great deal different - although a little more planned,. Ok so things happen and are observed and various facts are created. The trial protocol then should form the subjective story around selected facts that is how the authors would like them to be interpreted. Concerns around trials exist because the subjective story should be formed before seeing the facts rather than afterwards. However, as we have seen from the pace trial this is often not the case.

We then have algorithms for combining facts (usually stats). These need to be very carefully chosen. In a patients situation we only have a few individual data points so the suggest the existance of an event rather than something that can be treated quantitively. The existance of experiance from multiple or many patients should let us make statements such as "at least x patients reported y". If we knew total number of patients with a particular disease it would allow us to express a lower bound. With a trial this should be done within a fixed framework but we should be very careful about statements being made. For example "trial x, with selection criteria y using randomisation process r processed results using algorithm a found ..." The choice of all the caveats in this stratement are part of the subjective story and should be stated. Sometimes they are wrong. For example it is simply wrong to quote the mean and standard deviation for the chadler fatigue scale hence the choice of the algorithm deriving results from the PACE trial is wrong and the results are therefore meaningless.

This leads me to believe that all the data from trials should be published so that others can process them in different ways.

I think it's very difficult, and maybe impossible, to distinguish 'stories' from 'evidence' or 'facts'. As you say, even high-quality medical trials contain a certain amount of 'story', or interpretation. But even hard 'data' is only created within a context.

Some 'facts' are more factual than others. Some evidence is more reliable than other evidence. A story, or hypothesis, or theory, or evidence, only becomes unquestionable 'fact', as far as an overwhelming number of people are concerned, when it has an overwhelming amount of unquestionable evidence behind it. Some 'facts' remain irrefutable for centuries, only for science to later find out that the 'facts' were wrong.

And one person's 'fact' is another person's dogma, fallacy, lie, or misrepresentation of the truth, etc.

We build a picture of evidence, with the more information that we have.
Personal 'stories' help to build a picture of the world.
People's individual experiences, and their interpretations of their experiences, is what forms people's opinions, and ultimately leads to how we construct our communities.

This is how politics works. Politics often reacts to the majority opinion. Opinions that are based on personal experience, or personal 'stories'.

I don't know if it's true, but I heard an interesting story on the radio the other day.
(I think they said it was originally written by a Financial Times journalist, and I haven't checked for the original article.)
It was a story about a competition in which competitors had to guess the weight of a bull. It also applies to guessing the number of jelly beans in a jar.
(There was a moral behind the story, but I'll just stick to this narrow interesting feature of the story.)
It said that, although it is rare for an individual to correctly guess the weight of the bull, or the number of jelly beans, if you have enough people involved in the competition, the average guess will be very close to the actual answer.

So, this illustrates, that subjective evidence, or personal stories, when correlated from a number of people, can form an accurate view of the world.

It would be interesting to see if that story is true.

(There's also a major counter-point, and flaw, to this specific interpretation of 'group opinion' though, as I never put my faith in the majority point of view The majority are so often very very wrong!)

 

[In Vitro Infidelium]

Its possible to view this as "bunker" thinking too. Most of your questions have been answered time and again.

How is it "bunker" thinking ? It doesn’t require a defensible position, it is entirely open other than not accepting de facto, that the claimed cause is responsible for the implied effect. Saying that ‘questions have been answered time and again’ is inaccurate – responses may have been given but I’ve seen none that amount to evidential support of what Curer is claiming. In effect what you are saying is that some people who write on this forum have given an opinion, and that opinion is to be treated as closing the subject. You have written in this very thread: “One of the issues we face is that while psychogenic illness proponents might be pushing certain views, the rest of the medical profession is not pushing back.” which I assume implies you consider that non psychiatric specialisms are contributory to the causality that Curer claims and, that contribution may therefore extend to the ‘prime mover’ of the development of the psychiatric model which is the source of the claimed causality ?

Most of us do not just blame psychiatry. That does not mean that we do not think false views within psychiatry are not partly responsible. It is almost certain they are, which I have written hundreds of posts about and given many examples over the last several years. Its not either/or. Its a complex interplay of issues, one of which is the psychiatric profession, one of which is psychogenic medicine, etc.

I don’t understand the relevance of ‘us’ – Curer advanced a very specific proposition, how does a collective of belief affect that ? I agree with your ‘interplay’ analysis – but that is not part of Curer’s proposition which is a claim of simple cause and effect.

I am sure you are aware that diabetics used to be put in asylums? They are clearly crazy. I mean, they claim they are always thirsty! What nonsense! MS patients were also institutionalized. They clearly suffer from hysterical paralysis, those crazy women! I am not aware of psychiatric responses to RA and Lupus, but the theories were similar so I suspect many similar things happened. Its also been shown that most with "hysteria" in the early days fit clear diagnosis of epilepsy and other disorders.

You Cannot Be Serious. Really, we arere going back to the 19thC to show how terrible psychiatry is ? And you even resort to canards about generalised responses to diabetes and MS. Hypoglycemic fugue can produce aggressive and self harming behaviours, something which was of course mysterious until an understanding of insulin was achieved. Undoubtedly this led to numbers of people with diabetes being treated as mad - but that has no bearing on M.E/CFS, unless you are suggesting that aggressive and self harming behaviours (are there any apart from a few rare cases ?) by M.E/CFS patients are the product of metabolic or other physical processes. After Charcot’s work, MS patients diagnosed as such, were not routinely hospitalised, although of course some were but not because of a psychiatric doctrine about MS.

I don’t understand, even if it could be argued that the pre 1960 ‘mental institution’ context is somehow relevant to M.E/CFS in the 21st C, how the issues of social, economic and ‘moral’ controls that underwrote th develoment of the ‘containment’ hospitals can easily be seperated from implied depredations of psychiatric theory – surely this is wholly Frances Farmer territory ?

You assert that things are different now, apparently. You ask that we provide proof they are not, other than selected instances. I assert that to find out we would need to do an in depth investigation of the whole system, as its the nature of the system to keep this from the public eye. Such an investigation has never occurred.

Different from when ? I’m not even sure what context is envisaged as supporting Curer’s proposition ? Is it the last 150 years of clinical practice and research ? Is there really just a single system that applies globally ? To me it all sounds like - once upon a time in galaxy far far away. And I most certainly haven’t asked for ‘proof’ – I asked for ‘evidence’ to support the claimed proposition; I don’t actually expect the evidence to be forthcoming, with the consequence that Curer and anyone supporting her/his proposition, might then actually acknowledge that the proposition does not actually command certainty. It's one way of looking at thing, if people are happy with a low evidence test, that's fine but at least let's have an acknowledgement that it's perspective driven, not evidence supported.

I am aware of at least one case (probably more but my memory is fubar) where scientific paper/s on CFS were not published in one journal but in another. So what you might say, it happens all the time! One reviewer thought, great paper. The other said it had no value, as CFS was psychiatric. Its wrong to think psychogenic hypotheses have no impact. They influence the entire medical profession, its regulating and associated bodies, and government decisions on medical matters. To assert it has no impact is absurd, its the same as asserting that a pervasive field of medicine used by doctors everywhere is not used by doctors everywhere. So you cannot be saying that, yet its a subtle implication in what you are writing.
I agree that we need better evidence of many of the issues we are claiming. However my response is: let us go find that evidence!

And where in this thread has anyone argued that ‘influence’ of whatever source or character has not had an impact, but that is very different condition from X leading to Y in a definitive process that produces definitive results. Put simply (and ironically) the world is far more complex than that. Curer’s proposition demands a simple X = Y, in which case it should be eminently possible to show evidence of this in practice. Curer’s proposition doesn’t appear to implicate the subtleties of ‘journal acceptance ( yes weird stuff re: publication choices does happen all the time) rather Curer claims definitive refusal of funding for research has taken place. To accept that has happened I want to see some evidence that places the active interdiction of viable research, as substantially more causative of an absence of physiologically focussed M.E/CFS research, than (historically) the commanding lack of testable hypotheses supported by interested and competent researchers.

This latter point isn’t an academic issue – fighting a war against psychiatry might actually have merit if Curer’s proposition had supportable evidence, absent of that, then the challenge to develop large ongoing research base involves a very different challenge. From my perspective Curer’s proposition leads M.E/CFS advocacy into an equivalent of the Teutoburg Forest http://en.wikipedia.org/wiki/Battle_of_the_Teutoburg_Forest when something far more challenging (if less fatal) is actually required.

The problem with 'looking for evidence' is that one invariably finds it, the challenge is how rigourously one is prepared to apply scepticism and parsimony before ascribing value to it.

IVI

 

[Undisclosed]

Please note:

This thread has now been permanently closed. After reviewing the thread, it was obvious it went off-topic quite early on and stayed off-topic to a large extent. The thread became more contentious as it became more off-topic so we thought it would be best just to leave it closed to avoid any further problems. It is not possible to start new spin-off threads from this one as it would be too complicated. We have edited and deleted some of the more recent entries as either personal attacks or related to off-topic moderation issues.

If Lady Mar should continue her conversation with Wessely with some new correspondence, then a new thread can be started.

Thank you.