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A Little Poisoning Along the Road to ME/CFS
Looking at my symptoms, many of which are far less these days and some are gone, it would be easy to figure that I'd just been dealing with some heavy-duty menopausal issues.
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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. peggy-sue

    peggy-sue

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    I can't remember the quote exactly, or who said it, but...

    It is impossible for a man to believe the truth when his income depends on believing a lie.
     
  2. user9876

    user9876 Senior Member

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    I don't think a comparison was being made with hitler. One device for reasoning about an argument is to look at extreme cases and see does the argument hold there. Hence I think someone had argued that is a historical position that Wessely shouldn't be held to account for. Hence looking at how this argument holds with extreme analogies such as with whether Hitler should be excused as it was historical. I think this would lead to the question of is there a threshold of what someone has done or behaviours that would excuse someone from responsibility for their past actions?
     
  3. barbc56

    barbc56 Senior Member

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    Let me start out by saying I don't think what anyone wrote was done intentionally to hurt but I want to say something that I think is important.


    We have to be very, very careful when comparing someone to Hitler. Please keep in mind that some of us are Jewish or have family and friends who are also Jewish. This has nothing to do with how I feel about Wessely. I don't particularly like what he stands for. But comparing him to Hitler only serves to trivialize what happened during the Holocaust.

    I think the following quotation says it better than I can.
    http://blogcritics.org/politics/article/the-imprudence-of-comparing-to-hitler/page-2/

    This post may be moderated and I will accept that. But I think this is an important point to consider when writing posts.

    Barb C.
     
  4. alex3619

    alex3619 Senior Member

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    While I agree that comparing individuals, even obliquely, to Hitler is dangerous and can backfire, there is danger in not comparing social changes in general society to those that occured in early Nazi Germany. A lot of changes occuring in the west have similar authoritarian aspects. Nazi Germany is a warning. We haven't fallen into that situation politically, yet, but when church, state and big business become inseparable and are bound to highly "moral" leaders in government, there are huge risks. Modern politics is trending that way in many countries, and communist thinking may also be rising in counterpoint. Both are political extremes.
     
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  5. barbc56

    barbc56 Senior Member

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    I think that goes without saying. We learn from History. I'm not sure I agree with you on your take but do not want to debate that in this thread.

    Barb C.
     
  6. Holmsey

    Holmsey Senior Member

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    Unfortunately this is the reality until something significant changes, the UK Government had just proposed a 1% cap on benefit increases, that's all benefits. Inflation is running at between 3% and 4% on official figures alone.
    My daughters father in law, only 1 year short of the official retirement age in the UK, and having been in receipt of disability benefits for more than 14 years, who routinely collapses due to a work related back injury, who has been seend and treated by numerous hight ranking NHS spinal specialists, has just been deemed 'fit to seek work' by ATOS.

    We have an unexplained illness, and until a killer paper comes out which changes the perception from 'unexplained' to 'expalined and serious' we shouldn't expect to fair any better. Sadly it seems doubt is more prevelant that trust in the modern world, and so you are always going to be at odds when you meet officialdom with what is an untestable disability.

    As to SW and his part in this, he didn't convince other Governments, he didn't even convince ours, he provided the excuse they required to save public money. Whether he's being honest or dishonest in his stated views I cannot say, but this site recently carried details of a perviously sealed letter from SW arguing that 'we should not be denied benefits, that we did indeed have a serious and debilitating illness'.

    No one can tell you how to live or how to think, but there comes a time when SW's responsibility for what he says or has said ends, and that responsibility falls instead to those who act based on his comments, accepting only those and none of the other evidence out there.

    We're not denied benefits due to SW, we're denied benefits due to lack of evidence and a lack of public funds.
     
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  7. In Vitro Infidelium

    In Vitro Infidelium Guest

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    Whatever the failings of the NHS mental health services, no one gets 'sectioned' for a belief. The substantial checks and balances provided for under the Mental Halth Act ensure that there has to be some evidence of a potetnial for harm to self or others. Of course there are elements of M.E/CFS that could be wrongly interpreted as evidence of self neglect or self harm, and the question then is what is an approapriate intervention, but to characterise the whole complex process of detaining someone under the Mental Health Act as 'sectioned for false illness belief' is to profoundly misrepresents what actually happens.
    Isn't there a danger of embracing a fallacy that's based on reversing cause and effect in this case. We don't know what SM's physical and psychological health was, other than the estimation of her mother - if rather than the 'stable' position the mother perceived there was actually a slow decline was already underway, then 'before' and 'after' the inpatient interlude may have no relationship being treated as inpatient.

    IVI
     
  8. user9876

    user9876 Senior Member

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    I don't think a comparison was being made. I read it as questioning a statement :
    "W should be forgiven for doing S as it was historical"
    Then testing this statement by binding an extreme example of a person and cirumstance to W and S as a way of judging the assertion.

    I do agree though that using hitler as an example in an argument is not a good idea as it is still an emotive subject that upsets people.
     
  9. Enid

    Enid Senior Member

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    I would like to know under which category you place - picked up in the street, collapsed in A & E - 3 junior docs and psycho diagnosing "all in your mind". No checks and balances there I can assure you.
    (IVI @ 327)
     
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  10. In Vitro Infidelium

    In Vitro Infidelium Guest

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    Firstly, there are perhaps two (no more) cases where a coroner has allowed that M.E was a contributory element to a death. However even in these cases it is not clear that the Coroner intended M.E to be understood as being a direct organic cause, rather than a complicating psychiatric condition. The list of dead M.E/CFS suffers that is maintained on one internet site, makes no distinction on the bases of cause of death. Everything from accident to age related death is potentially included. We have no idea what role M.E/CFS may play in premature death, other than there appears to be an increased risk of suicide.

    The only certain autopsy work is reported here: ME Association News that’s just four cases, and note that causes of death were: suicidal overdose, renal failure due to lack of food and water, assisted suicide and probable poisoning ! Of those four cases just one showed definitive evidence of dorsal root ganglionitis. Whatever people may believe, there is not yet sound evidence that M.E/CFS is fatal in the commonly understood sense.

    Such exceptional mortality as appears to exist, seems to be very strongly related to psychiatric co-morbidity, or circumstance suggestive of potential psychiatric involvement i.e – suicide or self neglect. On the face of it ‘cause of death’ doesn’t seem a particularly promising route for separating psychiatric factors from organic disease, and it raises some substantial problems with sourcing autopsy subjects. Those who die young, particularly by toxic ingestion may not be at all representative of the wider patient population.

    IVI
     
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  11. alex3619

    alex3619 Senior Member

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    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. Nor are agencies or governments. The scientific community is mostly silent. So is the media and public. Most of us also don't do very much to try to change this. So where does responsibility start, and where does it end? The whole system appears dysfunctional to me.

    There is real danger that attributing most of the blame to individuals like SW, despite what we think of his research, is akin to scapegoating. I do not like what he does, nor how he does it, with respect to ME and CFS, but I know almost nothing about the man personally.

    I think people like SW, in respect of the ways we dislike his views, are almost an inevitable consequence of the system. It allows this to happen, and even promotes it, not intentionally, but by virtue of flaws in how things work. I am trying to understand those flaws. They need to be fixed.

    Bye, Alex
     
  12. In Vitro Infidelium

    In Vitro Infidelium Guest

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    I don't understand the relevance. You had a bad experience in A&E is that right ? But that didn't lead to you being subject to the provisions of the Mental Health Act did it ?

    It's foolish to argue for the system being perfect - failure is always possible in human mediated activities. What is important is to sift out those failures that are a product of poor practice ( and ensure that redress is given and the practice improve) from those faliures which are systemic, where the system itself needs (and actually can be) change(d). However badly the few reported cases of sectioning of M.E/CFS patients in the UK may have been handled, we do not have evidence that failures (if they exist) are systemic in nature. If you were treated badly in A&E, then that's a matter for the management of that service, I don't understand how the Mental Halth Act would apply to action that would be need to improve that service, censure staff guilty of professional failings or provide you with restitution.

    IVI
     
  13. Enid

    Enid Senior Member

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    And are you ignoring the fact that "all in your mind" is not some suggestion of a "mental health" problem. And yes my experience but even more so as local sufferers were offered cognitive behavioural therapy or nothing.

    I mean to say the whole point of the Countess of Mar, Prof Hooper and all has been and is the playing with psychology/diagnosing "psychology" to the detriment and willing ignorance of hard science findings. That is psychiatry that is it's limitations - they are not specialised nor research scientists - a side show.

    Any chance of a psycho sorting out my GI, muscular, joint problems ? And comitted to something not diagnosed (as yet) hard science will continue to replace their claptrap
     
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  14. barbc56

    barbc56 Senior Member

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    Sophia was certainly physically ill with CFS/ME. However, she became suicidal refused to eat and she thought she was allergic to water. She was a danger to herself. She died of renal failure caused by not getting fluids and any inflammation could have been explained by this. A tragic tragic story but not the same as the forum meme that circulates to prove a point of how we are mistreated. Yes, mistreatment happens and even one case is too much. I believed this story for many years.. At what point are we going to be like the boy who cried wolf and nothing we say will be seen as being credible.

    Barb C.
     
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  15. Enid

    Enid Senior Member

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    It's an illness - millions suffer - much research now revealing pathologies - who cares about the SW's of this world.
     
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  16. currer

    currer Senior Member

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    As someone who lives in Britain, and has worked in support groups helping ME sufferers directly, I can say that there is plenty of medical abuse and neglect of ME patients here, and the psychiatric model of ME is directly responsible for both this abuse and neglect, and the refusal to fund adequate medical research for over a generation.

    Some ME sufferers do become suicidal but this is a direct consequence of the way they have been perceived and treated.

    I find arguments that try to push responsibility for this appalling situation back onto the individual sufferer highly offensive.
     
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  17. In Vitro Infidelium

    In Vitro Infidelium Guest

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    Is that your opinion, or do you have some shareable evidence ? What medical research has been refused ? Where has any viable research project been put forward in the UK and refused funding ?

    Blaming everything on psychiatry is just 'bunker thinking'. There hasn't been research because there has been no researcher with a valid project to fund - and that's not because of psychiatric propaganda - it's beause there's been no conception of how to pursue the problems that M.E/CFS presents. There is an issue in th UK as to why no adequate epidemiology has been undertaken, but even that has its roots in the difficulties of definition.

    Evidence ? People become suicidal for all sorts of reasons and no one is immune (as far as anyone can tell) from endogenous depression. Having M.E/CFS doesn't stop you from getting a mental illness, irrespective of how the world treats you.

    And these arguments are where ? Digging about in the guts of something often means dealing with "highly offensive" stuff, - best thing is to hold your nose and get on with it.

    IVI
     
  18. Bob

    Bob

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    IVI, I can't quite believe your last post, as we've been over this stuff repeatedly, and given examples repeatedly.

    Never mind evidence from third parties, many of us have got personal stories to share re the medical/welfare systems, as evidence of disinterest/neglect.

    And just look at how they are 'treating' children with LP, for an example of medical professionals acting totally inappropriately, and with utter ignorance.

    Again, we've been over this repeatedly. I refer you to the CDC, the MRC, and Jonathan Kerr.

    Again, there is evidence of biomedical research being blocked by psychiatrists. (Refer to Jonathan Kerr.)

    And why is there an issue with definitions? Because they've been ignored, or neglected, or perverted, or blocked (or all of these), over the past few decades, persistently. Research is still being carried out with the Oxford definition, and the CCC/ICC are only just starting to be used as experimental subsets.
    If my memory is correct, attempts to use criteria other than NICE/Fukuda in biomedical research has been blocked by the MRC, in the past.

    I think this is insensitive of you, IVI.
    So many of us have horror stories to tell about our experiences with the medical services.
    But being treated well by both the medical system and the welfare system, can take an immense amount of pressure off patients, and can make a vast difference to the quality of a patient's life.

    I've also seen this sort of attitude (that currer mentioned) on the forum, repeatedly. It's usually a subtle message, that comes about indirectly, as a result of nuanced arguments. And, as such, those making the comments may be unaware of the implications of their arguments/opinions. But sometimes they seem like quite direct accusations.

    I have, numerous times, directly highlighted this sort of attitude, of placing blame on patients, but I don't do it every time I see it.
     
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  19. alex3619

    alex3619 Senior Member

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

    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 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 reponses 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 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.

    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!

    Bye, Alex
     
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  20. Holmsey

    Holmsey Senior Member

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    In Britain, and I'm sure elsewhere, there is abuse and neglect in health care for sure, but it's certainly not limited to ME/CFS. I'm not sure how you can jump from that to the psychiatric model of ME being directly to blame, as I said, it's not limited to ME/CFS so there's not direct link between neglect and a psychological view of illness.

    I'm sure the psychosocial model has been a great excuse for a lack of investment in biological research, but someone in a governing role has to make that decision, the Psyc's don't make it. So we're left asking, are they swayed by the Psychological model or simply using it as an excuse to save money, but again that's not the Psyc's.
    Likewise individual clinicians will have been swayed by powerful arguments and a supportive press, but you are again left asking, is there dishonest collusion or do they 'genuinely' believe that ME/CFS is a psychological illness.

    If in the end you conclude that they are not all colluding against us then you are left with no other choice but to recognize that we are loosing the battle of persuasion, loosing the battle of advocacy. Only by bringing others to the point we have reached, getting them to consider the research, getting the research into the main stream will we ever convince them otherwise.

    I find the assertion that suicide is somehow a direct consequence of the way others perceive us hard to accept, but having never been that low I can only speculate. It seems to myself at least that the absence of a life, and years of illness without hope of a cure coupled with the constant presence of pain would likely render most sufferers numb to any consideration for how others may perceived them, but I confess I don't know.

    All systems have faults, the larger the system the larger and the more subtle the faults but faults don't necessarily equate to neglect, can we ever fault someone for a genuinely held belief simply because the belief is eventually shown to have been wrong?
     
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