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Lady Mar writes to Prof Wessely

Discussion in 'General ME/CFS News' started by Peter Kemp, Dec 4, 2012.

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  1. Bob

    Bob

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    I might not know all of the exact details about the following, but you seem to be ignorant of some of the events from the past:

    Some time ago, Jonathan Kerr specifically stated that his research funding application had been blocked by psychiatrist/s (I can't remember how many) on the MRC's funding review board. His application received high scores from the non-psychiatrists, and low scores from the psychiatrist/s. The psychiatrists' low scores blocked the application. (My memory might be wrong about this but I seem to remember the non-psychiatrists awarding a scores of about 8/10, and the psychiatrists awarding about 3/10.) If my memory is correct, the psychiatrists' specific issue with the application was that Kerr proposed to use biomedically-oriented diagnostic criteria (possibly the CCC?), and that was their reason for the low score/s.

    This has all been discussed on the forum in the past.

    So this relates directly to some of the issues we have been discussing, and the evidence that you have been asking for:
    1. Psychiatrists having a negative influence on our lives.
    2. The use of alternative/additional diagnostic criteria being blocked.
    3. Biomedical research being blocked.


    Insensitive to the members of the forum, and the lives that they lead.
    My perception, and opinion, is that you are sometimes insensitive.
    Obviously, you can take this on board and make adjustments, or you can ignore it, as you wish.


    The LP SMILE project has been discussed repeatedly.
    IMO, LP is clear example of direct abuse of children with CFS/ME by the medical profession.
    A explanation of LP, and why it isn't suitable for either any children, children with CFS/ME, or any CFS/ME patients, would explain why exposing children to experimental LP sessions is an abuse of the medical system.
    I'm not going to go into details here, as it's been discussed before, and it requires its own thread.
     
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  2. Holmsey

    Holmsey Senior Member

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    Something of cross purposes Valentijn, when I said we let them, I meant by not co-operating and by so doing blowing the whole argument out of the water.
    I'm not suggesting this could ever happen but use it to make my point. Imagine being able to broker this scenario, you go along to a cabinet meeting where you represent the 250,000 UK sufferers of ME/CFS, you agree that if the funding and facilities are put in place those 250,000, keen to have their lives back, will submit to the prevailing thought on thier illness. Your only proviso is that there are biological testing available to stop treatment on physical proof of a deterioration in well being and that anyone deteriorating to a given point below baseline is deemed as a treatment failure. Attention then turns to the proponents of PACE, and Government states, clearly this is a costly endevour and for that cost there must be a return so from this 250,000 how many will be returned to work, social activities, sport?

    Who do you think would walk out of that meeting most worried? That's what I meant by 'let them' we do not call the bluff.
     
  3. Mark

    Mark Acting CEO

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    Not all proposed cause and effect relationships require evidence to justify reasonable belief in them. A reasonably obvious chain of logical cause and effect can make such beliefs quite rational. I can quite reasonably propose that the belief of one racial group that another racial group is inherently inferior is a significant cause of racial oppression of that group. It's not a proposition that I feel I need to justify with evidence. If somebody doubts an obvious proposition like this, the onus is on them to come up with evidence that it is not true. So, IVI: what evidence do you have that this apparently obvious proposition - that a psychiatric model of ME/CFS inevitably leads to less belief in ME/CFS as a biomedical disease or illness, and thus to neglect, abuse, and underfunding of medical research - is false?

    Roughly speaking, the psychiatric model of ME suggests/argues/postulates that the chronicity of ME/CFS is caused/perpetuated by 'faulty illness beliefs' on the part of the patient. The school that has pursued this line of inquiry for the last 25 years has unquestionably received the lion's share of state funding for ME/CFS research. Nuances aside (since weasel words, linguistic games, and the empty circular reasoning of the hypothesis itself make it virtually impossible to say anything about the 'psychiatric model' without it being disputed as an accurate description of the ever-changing presentation of the model), in essence the psychiatric model can fairly be characterised as focusing on the patient's own behaviour or beliefs as the most important factor in perpetuating the illness. Whatever the intended meaning of the psychiatric school's words, and whatever their interpretation of their own research, that research - the dominant model in the UK - quite plainly is widely interpreted and understood by many people as suggesting or confirming that ME is an illness that is 'all in the mind' or 'all in the behaviour' rather than a regular 'physical illness' or 'disease'. Quite obviously the dominance of a psychiatric model in research and treatment has this effect. And quite obviously, if this model is false, then it will cause neglect, abuse, and underfunding of appropriate research.

    Evidence aside, and thinking about this simply from logic and from common sense, it beggars belief that an intelligent person can seriously question that the dominance of this model causes abuse, neglect, and failure to fund medical research.

    It really should be quite obvious to anyone that the popularity of this 'faulty illness beliefs' model, this way of thinking about ME/CFS, increases abusive situations for patients, encourages neglect of patients' medical needs, and discourages fund-holders from recognising the need to pursue medical research. This would be the case even if the Wessely's followers did not explicity say - as they do - that patients should be encouraged to 'push through' and try to ignore their feelings of pain (abuse), that practitioners should be 'economical with the truth' when communicating their beliefs to patients (abuse), that patients should not be given further medical tests because that may reinforce their faulty beliefs that they are sick (neglect), and so on and on and on. It would also still be the case even if it were not the case - which it is - that the panels assessing research funding proposals have historically been dominated by psychiatrists who have voted down proposals for medical research (see evidence above, which is unfortunately somwhat circumstantial and incomplete simply because the actual evidence of research proposals and rejections is conveniently not available to the public).

    What kind of evidence could be sufficient to confirm Currer's cause and effect proposition? We have evidence of correlation - the dominance of the psychiatric view coinciding with a failure to fund medical research - but correlation doesn't prove causation. But then, what evidence could prove this? A statistical historical analysis, looking at various countries, finding consistent correlations between the dominance of the view that ME/CFS is imaginary/psychiatric and low levels of funding for (bio)medical research? Would that prove the proposition? But then, when you think about it, the two things we're trying to correlate here are more or less the same thing. If the 'functional' hypothesis is dominant, the biomedical model is less so, necessarily.

    Surely the reason why there's no such evidence is that nobody would waste their time trying to prove a very obvious correlation between a proponderance of heads and a paucity of tails? Most people would consider such propositions too obvious to require 'evidence', and I can't really see what there is to doubt about this particular cause-and-effect argument. Doubting and questioning things that seem simple common sense to most reasonable people can sometimes lead to great historical breakthroughs in understanding, but the great minds that achieve such breakthroughs have to put a convincing alternative explanation as well as merely doubting. In the absence of such a credible alternative hypothesis, scepticism of apparently obvious propositions tends to just look ridiculous.
     
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  4. Holmsey

    Holmsey Senior Member

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    I have never doubted, psychologically abused or offered treatments that are useless or dangerous. I object to being answered in such a was as to imply I have, I object to being answered in such terms.
    You are correct one of the functions of this form is free and open expression, and I have used personal expression in doing so. I do not dismiss personal experience, as is demonstrated by my replies over the past two days, I drew attention to the difference between objective evidence and subjective account. Clearly the forums are a good place to not only talk, but to target anger. I do not know you, I have had no influence in your life other that what you choose to personalize from my posts, I have never neglected you, doubted you or dismissed you. Feel as angry as you want, I do not feel angry back, if you hate me all the more for that I cannot stop you from doing that.
    I may hold views which widen the horizon for this forum, if it is the opinion of it's members that such views are unwelcome, uncomfortable, I will happily remove myself from your reach.

    Zee.
     
  5. notinfinite

    notinfinite Guest

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    I don't mind reading your views, I just disagree with you - I don't feel your views concerning SW widen the horizon, on the contrary, they narrow the field of view and generate disagreement - I have spent years listening to well meaning individuals (shrinks not included) and it aint got me anywhere.

    I would lose something if you decided to remove yourself (where to?) from posting, I find your arguments troubling and struggle to understand why you write the way you do, (yes, this is my problem), on the other hand I actually quite enjoy yours and IVI's MO - you are both obviously intelligent individuals and you are stating an opinion which is vital for discussion, - I would rather take part in a forum where I would feel comfortable expressing myself, otherwise what's the point in participating so carry on being you.

    I feel you may be somewhat premature in your vision of harmony and trusting SW et al to do as they will without us kicking and screaming in response.

    Admittedly there is no treatment for me ......... yet, but neither have I seen evidence from the shrinks they know anything about my illness and I do not intend to let them continue believing they can ride roughshod without my consent.

    All this thread has proved is that SW is considered to be a major player in the politics of ME - we knew this - he always has been and he will continue to be until he either pops his clogs, the scientists hit lucky or someone discovers something interesting via unorthodox channels. What this thread really shows is that SW is 'in the way' - I feel he is something like the M6 or M25 on a Friday afternoon - the guy is a traffic jam.

    Much love.
     
  6. Kina

    Kina Moderation Team Lead

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    Who says I am angry at you. I believe I said I was frustrated. Just because I find words frustrating doesn't mean I hate you. It is possible to be frustrated by somebody's words and not have any negative feelings about the person who said them. I can't hate a person I don't know but I can be frustrated at their words.

    If anybody feels I have breached our rules with anything I post, please report me as you would anybody else.

    Now let's get back to addressing the topic of this thread.

    Thank you.

    Kina
     
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  7. Bob

    Bob

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    Holmsey, you (perhaps unintentionally) dismissed the personal experiences of all the members of this forum, stating (incorrectly) that personal experiences are not 'evidence', but are just 'stories'.
    In general, I think that dismissing patients' personal medical experiences as being simple 'stories', is insensitive at best, and aggressively offensive (abusive) at worst.
    I see from your later posts that you did not feel that you were being aggressively offensive, and I think you were probably only making a narrow point, that had the potential to be misinterpreted.
    This is a forum for a group of patients who have had their personal experiences of illness dismissed ever since they became ill, in a way that seriously undermines their sense of integrity, and seriously undermines the healthcare that they receive. So if you are going to dismiss all of our personal experiences, whatever point you were trying to make, then you should expect a strong reaction. A little more sensitivity might go a long way towards keeping the forum a pleasant place for all of us to use.

    (I finished with the subject now, but I expect you'll want to tell me where to go.)
     
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  8. user9876

    user9876 Senior Member

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    Sometimes I wonder if the psychiatric model and papers using scientific language are just fluff that describe a couple of beliefs that seem to be wide spread and often in the medical profession. That is one of mind over matter - people seem to want to believe they can control things with their mind hence all the possitive thinking stories This is reflected in language such as how people fight cancer and were strong. The other one is around what we don't understand we dismiss - hence all the problem with 'you don't look ill", lack of simple tests and biomarkers and a doctors discomfort at a disease that medicine cann't explain.

    Going to the doctor with ME or something else if they can't easily identify what is wrong they will often dismiss a patient (that is my and my friends experiance). This not only leads to the dismissal of ME but also failures to diagnose things like Cancer early.

    I wonder if the sucess of the psychiatric model in gaining traction within the medical and scientific community is becasue it resonates with these basic beliefs. The danger of it is that their 'sickness belief' theory plays to these biases but by wrapping it in a scientific language they legitamise these beliefs dispite the lack of evidence. But as a circular argument because the theory is based on these beliefs of need to understand and mind over matter it becomes intuative and therefore unquestioned. This is where science should step in and say but what is the theory, what is the evidence in support of it. In fact on reading papers I would say there is no sickness belief theory or model because it is not well enough specified to be a theory or model. Instead I would argue that it is just a pieces of text expressing their beliefs that can be reinterpreted in different ways.

    I guess the question in my mind is why has the work of this group of psychiatrists become so entrenched so quickly.
     
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  9. Valentijn

    Valentijn Activity Level: 3

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    They're selling a product that the government wants to buy (cost cutting via denying proper medical care/research) and they're marketing it very aggressively.
     
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  10. adreno

    adreno 3% neanderthal

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    The thing is, even if they knew (or know) that their therapies are ineffective, they can't back down now, without losing all credibility. They have painted themselves into a corner, and I believe they will defend their ideas to their deaths.
     
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  11. user9876

    user9876 Senior Member

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    I think its more complex than the government wanting to save money. I've often felt a big driver in organisations is just not doing anything. There are so many decisions that need to be made those that are avoidable are often avoided. I find it hard to explain but I see it like a todo list. There are many things to do and those where people are hassling you get done first. If the list is long and someone comes along and says here is the solution or I will do that then that option is what looks good. So I don't think anyone in government thought if we follow that route it will be cheaper but when it was offered as a route it was just taken because it was the easy thing to do.

    One of the things that struck me about the national archive records is how little is in them. So I only flicked through them quickly but there were not really any policy discussions. Much of it seemed to be responding to letters from Wessely and an MP (William Walgrave I think) with a lot of it being about brushing them off and not really making decisions.
     
  12. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Hard evidence of abuse would be covered up but the smoking gun is all the ME sufferers and their experience. I think all this warrants a government investigation by an independent source, but would we see that happen?? it would prove the govt/SW wrong i guess and open up thousands of claims for suing the buggers. They are too far gone to admit their mistakes now, they passed the line of negligence to abuse and discrimination of patients and blocking good scientific research. I dont know how one could get something like that going, Erin Brockovich?? David, famous for belting gallioth??
     
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  13. user9876

    user9876 Senior Member

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    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.
     
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  14. barbc56

    barbc56 Senior Member

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    Mark, what may be "obvious" to you may not be "obvious" to others. One person's common sense is another's nonsense. Your statement implies there is only one right way to look at things and that also implies that any other way is only wrong.

    I think there is legitimacy in thinking critically about a situation, call it brainstorming if you want, where you can be critical of the issue but not the person. This is how solutions are generated.

    I think that pointing out certain fallacies that may be getting us nowhere as far as advocating for our illness are the legitimate alternatives you speak of. Stating these isn't dissing anyone's personal experience. It's not the personal stories, I have mine, too, I am criticizing but that we need to stop certain strategies, which I feel are detrimental to our cause.

    I don't want to start a "he said" point fingers, here, but I feel, I, can't speak for others here, have also been dismissed not just on this thread but others as well, with certain preconceptions that since I might have views that have a bit different perspective, that I can't be ill, I am new to me/cfs forums which I am not and have been on cfs/me forums for years and that I must side with Simon Wessely, etc. etc., etc.I should not have to state these disclaimers to feel a legitimate part of this forum.


    But so what? A different opinion is a different opinion. Nothing more, nothing less.

    I don't think anyone is saying that personal experiences aren't important at least from what I have read on this thread but do we have to tiptoe around, hoping we won't offend someone's experience just because it might be their interpretation that any criticism of a situation is also a criticism of them when that may not be the intent?

    TBH, there have been threads where I am absolutely stunned that people feel they are being personally criticized.

    We are all in this together!!

    Barb C.:>)
     
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  15. Wildcat

    Wildcat Senior Member

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    "We" are NOT "All in this together" Barb!!
    .

    Not when you and others on this Forum reflexively dismiss high status Reports on the mistreatment of ME patients, ie the Tymes Trust Childrens ME Charity Reports that I posted.

    .

    Critical thinking ?? ???

    .
    It would appear that you did not even read the Reports, let alone critically evaluate them!

    .
     
  16. Stukindawski

    Stukindawski

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    That is a slightly selective interpretation of what was written I think. I can't see a battle of interpretations on either side becoming more than a sequence somewhat fruitless self-satisfying quests. Since some things have been removed that I can't personally review, the picture is also incomplete.

    I can perfectly understand the attraction toward analysing information and identifying its strengths or weaknesses from a practical point of view (free of emotion) entirely.

    Mark however makes a great point about the need for a common experience to disproved. I know logically even this has issues, but logic is a learned response to information rather than a natural one. By applying the rules of logical fallacy, a lot of doubt can be cast on even the things people feel most certain of. Since the application of strict logic isn't practical or desirable for human beings in general, it is neither ubiquitously deployed or understood.

    Personally I've had some abject experience with various Doctors.

    But I do understand that my interpretation of how Doctor deals with my condition is fallible, and if it follows a sequence of bad experiences I might be prejudiced by a previous appointment.
    Also since I haven't experienced an appointment in my adult life as a non-ME patient, I have nothing in my experience for comparison.
    If I came in to an appointment expecting my Doctor to do nothing and harboured anger from a previous appointment, did I show possible symptoms of a psychological issue, I might not have without that prejudice. Nothing definitive, but enough to encourage my Doctor to pursue a psychological explanation before any other.
    Even someone like Dr Byron Hyde for instance, will exclude psychological conditions in a patient as a matter of routine.

    Also there'd be the issue of just how widespread a problem is, one or even a few bad doctors, logically isn't an indictment of a system.

    I think a high volume of subjective report evidence however deserves the response of curiousity. Though as is this case with the er, PACE trial, subjective data is merely a stepping stone rather than a means to definitive truths.

    The question I'd ask you Holmsey, is it more practical to educate each passing forum member, that your logical approach isn't personally dismissive but just a professional criticism, or do you qualify any criticism with some sympathy and apply as much tact as possible to keep them reading and prevent an adversarial position.

    Whether anger is right or wrong, targeted or not - it is a pretty common human reaction, one I'm plenty guilty of. Logic often comes much much later.
     
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  17. Holmsey

    Holmsey Senior Member

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    natasa778 said:
    Oh come on people, we know by now that personal stories do not count as evidence in IVI's world.​
    Given the number of posts now quoting my reply I feel for my own sanity that I have to re-post it as above, in perspective.

    My feelings when I read Natasa's reply to IVI were that it was somewhat sarcastic but not offensive, Natasa, like myself appears to hold the view of IVI that things are close to black and white, personally I like his no nonsense approach.

    Having expected it to be a throw away comment I gave it little thought, if I were to re-post it I would put it this way instead.

    'Hard evidence is objective proof, stories are always subjective accounts'.

    Now that I have given the context in which I posted these words, and explained my thinking at the time can we all accept that I have not dismissed personal accounts, that I do not think them worthless or deny anyone's personall suffering. I have made a point regarding the use of language in response to what was in itself a throw away reply.

    Thanks, Zee.
     
  18. adreno

    adreno 3% neanderthal

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    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.
     
  19. Bob

    Bob

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    Let's have the full context...
     
  20. Holmsey

    Holmsey Senior Member

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    Actually Bob, what I said was 'stories are subjective', when you establish a rational argument that proves this statement is false without writing a new dictionary I'll eat my crash helmet, until then read my posts.

    Beyond that, please supply the post where I do the things you're accusing me of doing, I'm getting more than a little tired of people telling me that I'm responsible for things I'm cleary not, and IMO I post with more respect and accuracy than you do, this post being a prime example.

    As to the rest of your post, am I included in this group? Where do you get this collective information to speak so athoritatively regarding what everyone feels or what there experience has been. Do you know it, feel it, beleive it or did it just feel good to write.
     
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