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Professor Simon Wessely says he is misunderstood

Discussion in 'General ME/CFS News' started by Daisymay, Nov 27, 2012.

  1. barbc56

    barbc56 Senior Member

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    Why should patients or the medical community be believed, if what they say are not grounded in facts?

    I have not seen anything on the Bad Science Forum that suggests patients are "bad". However there's lots of interesting debate on the site.

    Supposedly, and I will try and find citations, the child who was forced/thrown into a swimming pool was getting water therapy and was hesitant to get in the pool. The staff were trying to sooth him but some have made it seem that the child was being forced. I saw the video on YouTube a long time ago.

    The psychosocial crowd are not the only ones taking things out of context. Here's an oft repeated quote from Wessely:


    (my bold)
    http://www.badscience.net/forum/viewtopic.php?f=3&t=15791&hilit=ellipses&start=200

    I think the bottom line for all sides is credibility. Credibility grounded in facts, the science as well as medical knowledge based on how the body works.

    I guess the adage of "Judge not lest you be judged" also applies.

    Barb C:>)
     
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  2. alex3619

    alex3619 Senior Member

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    The complexities of analyzing and explaining just what is wrong are why I think my book will take another nine years (if I remain brain fogged and poor).

    We cannot stop people making off the cuff comments. Complaining how this is doing us no good itself does no good. People need direction. So we need more people to take initiative. If someone thinks they have a better way of doing advocacy, great. Show us, don't tell us, and maybe more will do it your way.

    My own proposals are taking a lot of time to get ready ... my first real proposals are expected early next year. Then I will have to try to get people interested, which is a whole different issue. In general I have several guiding heuristics. Whatever it is has to be possible to be done from home by a house bound patient. Individual contribution has to be in a range from uncomplicated for the moderately sick and brain fogged, to slightly more intense for the more well. Its the person who decides the role, they know their health. I am also concerned to structure things so there will not be too much pressure and people may fail to pace themselves.

    So I guess what I am saying is, if you think there is a better way than what is already being done, why aren't you doing it? A really good idea might come from anyone, even someone too sick to actually enact it. If someone very sick has a good idea for advocacy, why not let others know and maybe someone can help you make it a reality?

    Bye, Alex
     
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  3. maryb

    maryb iherb code TAK122

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    :):)
     
  4. user9876

    user9876 Senior Member

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    Wessely's letters for the case
    http://mindykitei.cfscentral.home.comcast.net/~mindykitei.cfscentral/letters/Wessely, June 10, 1988.pdf
    http://mindykitei.cfscentral.home.comcast.net/~mindykitei.cfscentral/letters/Wessely, August 5, 1988.pdf
    Video including interview with Ean Proctor


    Edited to remove rant I only intended to link to info
     
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  5. barbc56

    barbc56 Senior Member

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    This situation occurred in 1988. That's twenty four years ago!! When Ian was sanctioned, Wessley felt he didn't fit the criteria used at that time to diagnose ME. We really don't know how accurate Wessley's statements,diagnosis and treatment plan were nor what other factors were involved in this case. There's probably a lot of missing information that legally could not be revealed to the public.

    This video is basically a one sided commentary. We don't know how much is factual and how much is spin. Ian was at an impressionable age of twelve when this occurred. His parents were the ones who diagnosed him.

    Surprisingly, I didn't find the letters to the court as negative as I thought they might be. But it's difficult to discern this as once again we don't know all sides of this case. Wessely states that the court is not the venue to settle medical questions. He also states that he believes the parents feel what they are doing is out of love. So at least those are positive statements.

    Lest I be accused, once again, that I'm only taking Wessely’s side, rest assured, I am not But overly emotive videos and stories such as this will most likely not convince others and that doesn't get us closer to a solution for our illness. I don't like to go by who I think is a “goodie” or a “baddie” as we all have different biases and perspectives which color what we think about issues. The world would be so much easier to handle if everything was black and white but the reality is that the world is in shades of gray and most likely many more than fifty. :rolleyes:

    I'm sure that Wessely and company have spun information to their advantage. It's a human trait that's almost impossible to avoid.

    As someone said above, why are we, and that includes me, wasting our energy on this debate which just keeps going around in circles, when we could be expending that same energy on proactive advocacy?

    Barb C.:>)
     
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  6. Firestormm

    Firestormm Guest

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    I can do better. I have been accused on several occasions of being 'son of Sam' i.e. Simon's spawn :) Oh how I lurve the internet sometimes - not.
     
  7. Firestormm

    Firestormm Guest

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    Adam. No one is 'pretending' anything. Those that post comments that are wrong, or taken out of context, want/expect/demand others like me, to take them seriously and to treat them as fact. To immediately accept that they are more aware of the context than me and that I do not 'have a clue'.

    You see how far that will get you when confronted by those whose opinions you are hoping to influence, to challenge and to change. It take only ONE instance of a common meme about Wessely to be proved wrong - by him especially but by others too - for your whole house of cards to collapse.

    The house of cards being credibility. There is so much 'out there' now about what Wessely did or did not do when it comes to expressing an opinion about ME. And you want me to trust all that? Just because you think I should, because all ME patients, should? Are you kidding me? I expected better from you I really did.

    This isn't judging patients who are reposting, and re-tweeting, what is proved to be incorrect, as 'bad'. It is about fair criticism. If you take a quote from text and use it as a headline, with the context within your main argument, and an explanation as to why you don't agree - nowt wrong with that.

    If you take a quote - especially one that is wrong - and simply use that quote out of context - or a summary of some example of Wessely's evil-doings - which is wrong - and repeatedly drive it down the throats of those whose views you are seeking to influence - you are plainly nuts.

    Not 'you' of course. This is all about credibility. This is all about 'us' (those with ME and those who are 'on our side') trying to make a case to others that we are in need of their help. We ain't gonna get any help if some or all of the crap that gets used is built on dodgy foundations.

    Every time I see a quote, or an interpretation of a quote, that is inherently wrong, being used as 'evidence' of this man's evil-doings, being used as a 'reason to support our desperate plight' I want a new diagnosis!

    This kind of thing merely underlines the irrational behaviour that is seen by some as being representative of the whole. And the same is true of anything claimed as being 'correct' that isn't - things that do not apply to Wessely - da evil bogey-man.

    It is wrong. It shouldn't happen. And if it takes other patients to say so - then so be it.

    Son of Sam signing off :)
     
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  8. Adamskitutu

    Adamskitutu *****

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    Firestormm, the good people over on Bad Science, and Wessely himself, I would say are indeed pretending these comments are benign and just misunderstood.

    The comments are not benign. If you look at the full context of what is written, the whole articles, the comments are really not benign at all. And then you have to factor in all the other articles - in the hundreds - where Wessely's comments are blatantly not benign. I note the Bad Science people are not doing that.

    The situation here is like saying that, because some people were hateful towards Japanese citizens of the US in world war 2, the allies had no case against the axis. At the end of the day it is clear supporters of Wessely are trying to smear patients, and some people here are expecting patients to walk on egg-shells in an impossible game of 'never be wrong'. They are unwittingly helping those who are smearing patients.

    I don't like seeing this focus on patients as irrational here - just because some people have got the wrong end of the stick.

    As for Ean Proctor - the facts are there. It was 20 years ago. It does not excuse what happened. Proctor as a man felt the need to add his account of his ill treatment as a child. Or are we to deny the devastation on that man's life now in order not to make Wessely uncomfortable? What about the Jimmy Saville, Cyril Smith cases? Adults giving accounts of what was done to them as children, after all.
     
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  9. Firestormm

    Firestormm Guest

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    If you post an opinion, Adam, about me for example, then it's your opinion that can be debated. If you post what you are purporting is a 'fact' about me and that 'fact' is inherently wrong, then your opinion upon which it is based is left wanting. Dangerously so - even without getting into matters pertaining to libel.

    If more than one, several, many, purported 'facts' that comprise a general opinion of a specific person are wrong or have been subjected to interpretation; then any argument that has been built around that persons beliefs and behaviour - will be seen as wrong. Or at least as being far less right.

    This is true of 'life' but we need to acknowledge - at least - that we are aware of the 'other side' of the argument. And that part of our own argument can and will be challenged. We need to be aware of that and not consider such challenges as personal.

    The argument being forwarded about Wessely is that, over a great many years, he simply 'doesn't get it' and rather more ominously - he doesn't get it deliberately with some other motivation. That his opinions and more - his 'power' - have directly led to my condition and patients with my condition with whom he has been involved - as being undermined and mistreated.

    For those who cling most ardently to this central tenet - there is no 'other side' to any of the arguments being advanced. There is only a blinkered full steam ahead approach. There is no acknowledgement that they are only expressing an opinion. To them it is 'fact'. He is the devil.

    Now look at the report from the Science Media Centre. The reported threats and harassment etc. made against Dr Crawley following her published intention to look at the Lightening Process for possibly treatment in kids: http://forums.phoenixrising.me/inde...versay-brochure-threats-of-persecution.20704/

    People are so against the Lightening Process that anyone who looks into it is deemed to be irresponsible - or worse. And why? Because the LP has been deemed as undermining what is believed by some to be the real cause of their condition and by association - Dr Crawley is evil. How can she even be considering taking this approach to kids? How dare she! How potentially damaging and dangerous etc. etc.

    The only acknowledgement that the LP has had any positive effect on those who have tried it - was to say at the time - that such people can't possibly have had ME. That this study might demonstrate the LP to have no measurable effect on children is not even considered - generally - in the comments that I read on-line around the time this study was announced.

    And anyway, Dr Crawley, was already deemed the devil by some fools, because she had been pooh-poohing the WPI. And of course 'XMRV' was numero uno at the time too.... enough said about both of those.

    'We' - the online ME community - are so quick to deem a person as 'anti-ME' that once tarnished in whatever way possible - we will disregard their opinion or work that is subsequently produced. Despite the fact that some real people might be helped by whatever intervention or part they might play.

    Such people have no less right to declare themselves as having ME as we do. They receive a diagnosis as we do. They are as desperate as we are. They will take a 'suck it and see' approach as we will all in reality do - if a treatment is being recommended to us by our own doctor.

    I read, for example, Wessely's supposed speech to the UNUM conference (?). I thought to myself, what a bloody dumb subject to speak about. 'Collusion' between doctors and patients. Who on earth dreamed that one up? I could well imagine the impression that those in the audience (supposedly those who processed claims relating to medical conditions), would have left the conference with.

    I could also well imagine the reception to that speech that would have been engendered from doctors! But was this really what Wessely thought was happening in the WHOLE of the NHS for example? Did he really mean that all doctors were intentionally colluding with their patients to invent things to mislead - to ensure that things might be recorded as worse than they really were in order to ensure the insurance paid up? Did he?

    Is this a reflection of what can happen? Will you at least consider that it might? That my doctor (one or all of them) want me to be as supported as they can hope for me to be - and that they will help by writing reports reflecting how hard my life has become - and that in doing so, they are indeed in 'collusion' with me?

    Are they 'guilty' of exaggeration? Are Atos at my medical assessment (on the other side of the fence)? Were the Tribunal panel at my Appeal - both of the separate Appeals - both of which I 'won'?

    Consider disability aides. I recall (like the 'collusion' above - and I haven't returned to study either of the texts previously advanced so this is all based on my wonky recollection and general impression - but that's what we're talking about here, right? Impression and generalisation.) that Wessely is often deemed to feel that the provision of disability aides serves to reinforce the notion a person is disabled when they'd be better off struggling on - with help - to overcome this incorrect belief.

    Now, I believe it has been concluded from this, that Wessely therefore feels it inherently wrong to see a person with ME in a wheelchair for example. And that may indeed be a logical extension of his notion. It might also be wrong. Over and above the evidence that, for example, other doctors and specialists might have recommended a wheelchair to a person with ME (an individual and not everyone with the condition), there is - as at the present moment in time - NO consensus evidence that for example, ME results in (i.e. causes) an erosion of the muscles to the extent that patients can no longer rely on them to support their weight - for example.

    Wessely, and those same prescribing doctors, might believe in individual cases, that other factors and that when taken as a whole - all have led to a person being unable to maintain mobility. That as a whole a person's disability has become so dire that they might endorse such a move to a wheelchair or indeed to any other aide that helps with mobility - such as a stick to help with support and relieve the 'vertigo' - or indeed a motor-scooter to help people get out and about under their own steam (more or less) or to remain upright for longer or able to walk for longer and get some exercise.

    We don't know. We only have that piece of 'evidence' that Wessely feels that disability aides reinforce (from my wonky memory) illness beliefs. And it is an opinion that is worth - outside of the box - some consideration. Are all people we see in the street - or from our bedroom windows - in need of the aides that they use? As an exercise in lateral thinking and without judging anyone it might be worth a thought or at least a nod that the notion does exist.

    How many people who do use wheelchairs have had them recommended to them by specialists? Does that recommendation make their use of such aides any more or less valid? Every time I venture outside for a walk - do I need my stick? Do I? What would happen if I didn't take it? Well, I would not feel I could continue walking as far. But I consider the notion that I could be depending too much on this aide and that it might be holding me back.

    Do such consideration completely screw and occupy my thoughts? Yes. There is a great danger that they do. It's an easy and short route to thinking 'Am I making this all up?' and 'Do I need to constantly prove to people that I really am unable to walk very far?' Simple truth is that I do. I also and more importantly, need to do this for myself. And I do that by trying. But that's just me. Others are less fortunate.

    I, and you, might disagree with everything that Wessely has written (not that we can ever say we have read everything - something else that is frequently overlooked - opinions are based on a few examples - unless you are a Wessely scholar and I'd suggest he isn't worth that kind of attention - nobody is!); but we should at least acknowledge his point - in that instance and from that source - at the time it was said - unless he has said it since.

    What has happened is that ALL these bits and pieces of 'evidence' have been loosely brought together and advanced in such a way as to gain support from others. Namely, that Wessely is not only 'anti-ME' and the devil but he is responsible personally for the mistreatment of patients!

    No. I don't have to agree with what is said or assumed. Even and especially as a patient with ME. And if someone on any forum or Wessely himself, takes a quote, that has been used and posted by someone else, and shows the quote in context with it's correct meaning - then I don't really care who does it.

    It is the person who sends the quote around the internet out of context, or incorrectly, enforcing their own opinion (or that of the originators) of it on others who don't or cannot check the source themselves; those are the ones that I will seek to correct. Not their opinion of the person concerned but the quote they are repeating.

    My personal opinion is that personalities should remain outside of any argument and we shouldn't label any individual. And I haven't even been talking about the threats, their substance or the reaction to their coverage by some of my 'fellow patients'....

    Son of Sam :)
     
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  10. user9876

    user9876 Senior Member

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    I think Ean was treated very badly its hard to say exactly what happened. I've not rewatched the video but I seem to remember the interview as being interesting. The interview (rather than the whole video) along with the letters form what I would describe as the only actual evidence I've found that is publically available. I think people need to make up their own minds about how to judge a childs retrospective account in forming their beliefs.

    I tend to find things Wessely writes less shocking than his reputation. My main argument against him is that he claims science on his side but makes huge unjustified leaps of faith in the way he describes his reasoning in papers.

    I think the letters do give some interesting insights into how Wessely is thinking. My assumption is that they represent his entire involvement in the case. For example the way he says that it cann't be a neurological diseases since some muscles such as heart and lungs are working fine. Also in the letter to the court he talks about a psychological and physical approach to treating ME and that it is currently being evaluated in a trial. It seems to me that we still hearing this message 20 years on.

    The really shocking thing is that children with severe ME are still being reclassified as having pervasive refusal sydrome and locked up.
     
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  11. In Vitro Infidelium

    In Vitro Infidelium Guest

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    I actually think it's worth exploring the question, just so that maybe some kind of defintive answer can be arrived at. What bothers me most about it is that M.E/CFS advocacy has in part become linked with anti psychiatry 'protest' , and in such a way that this 'tail' is in danger of 'wagging the dog'. There is also a very unhealthy subtext in which certain personal histories are presented in ways that verge on 'martyrdom' stories.

    My own take on Isle of Man case is that irrespective of what was an appropriate diagnosis, the boy in question was treated in ways that amount to abuse by the health service in the Isle of Man. That Wessely had no role in the delivery of treatment (abusive or otherwise) in that case, is patently true - however one would hope that in any comparable situation, any medic that had volunteered an unsolicited opinion that may in turn have affected the treatment direction for a patient who was subsequently mistreated - would be vocal in their concerns about the consequences of their given opinion. Professor Wessely has to my knowledge never publicly expressed any concern about the possible historic failings of Mental Health and Pediatric services in the Isle of Man, and that is in marked contrast to his energetic defence of his own involvement. My conclusion is, that I'd hope more from a professional in Wessely's position. But if the question is one of advocacy, then we have to ask 'what relevance is any of this now ?'

    The answer from those who are enthusiastic about 'targetting' Wessely seems to be that there is a need to 'cauterise' the 'infection' of psychiatric involvement in M.E/CFS and that by using Wessely as a convenient 'representative', a strategy of exposure of his underlying 'unfitness' will prompt somekind of 'sea change' amongst politicians, health administrators and non psychiatric health professionals. I agree with those who have already argued - this is a false proposition that can not be translated into an effective pro M.E/CFS advocacy position.

    Health Services are vulnerable to failure, there are a very few documented cases of critical failures where individuals with an M.E/CFS diagnosis have either recieved neglectful or abusive treatment from the NHS. There do not seem to be any comparable records for other health providers/countries, so with just a few documented isolated cases spread over decades, there is no substantial case on which to build a campaign. To be effective - even within just the UK, let alone trying to achieve international relevance, one would need tens of (documented) fatalities or hundreds of incidences of demonstrable abuse within a discrete times frame - 10 years maximum. To date that kind of data has never been in evidence. It means there is nowhere to go. Critiques of psychiatry may suffice for 'anti psychiatry' protest but such critiques can not usefully underwrite effective M.E/CFS advocacy. Campaigning on the basis of disparate past health service failings, although not intended as such, will without documented ongoing evidence of failure, be seen by the intended audience as just so much shroud waving.

    IVI
     
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  12. user9876

    user9876 Senior Member

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    Talking with parents with children with ME there are quite a few cases where children are reclassified as having pervasive refusal syndrome and locked up in a mental health unit. A condition of getting a child out is to acknowldge all the problems are psychological. Other cases parents have been accused of munchausans by proxy (of FII as it is called since MbP was discredited). But because this is all in the relms of the family courts it has a veil of secrecy over it. The reclassification as PRS is being done by at least one doctor claiming to be an expert in CFS/ME saying things like "She had CFS but its been going on for too long so it can't be that. ... Its psychological disassociation caused by the trauma of being ill"

    But some parents live in fear of saying anything due to the child protection system.
     
  13. alex3619

    alex3619 Senior Member

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    Let us suppose Wessely retired, today. How long before there was a difference? Would there be any noticable difference? To some extent Wessely is just a figurehead now, the damage is far wider than one person.

    I do not agree with ascribing motivations, but I do think we can cite arguments that are patently flawed.

    For example, and I think (I am not sure I read so much) that Angela Kennedy points this out in her book, CBT and GET are frequently called evidence based medicine, and its implied that its gold standard. Yet gold standard RCTs in EBM require double blinded experiments. The fact that no psychological study can ever do that (unless someone really clever figures out a way) means that none of them are gold standard. Some are so poor that I have used the term "lead standard".

    Moreover what does the evidence show? It shows that in a small minority of patients there will be some improvement of their attitude toward CFS but not their functional capacity. Indeed every study I have read that measures functional capacity has shown either no improvement or a worsening of capacity, depending on the study. This means that, according to the evidence base, there is no improvement in functional capacity, and any claim of such improvement, or implication of such improvement, is wrong. A proper analysis along these lines, submitted for publication, would do us a lot of good.

    Bye, Alex
     
  14. Firestormm

    Firestormm Guest

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    You are being too kind. It is wagging the dog. So much has been written for so long, that it's all become a mess. Old meme's are still transmitted as if they were fresh examples of 'new' instances and 'evidence' of the whole. When they are not.

    Also, there's a very good reason why - what might seem to be a very frustrating term of avoiding an issue is employed - is used. That term being 'we cannot comment on individual cases'. Other than expressing my own abhorrance at the way in which this young kid was treated when it was reported - I adopt I am afraid the same practice in public.

    On private forums (i.e. not here) and where individuals are reporting poor examples of healthcare that have been experienced by themsleves - then my response might indeed be different. With that in mind, I won't comment on what you have said, except to say, of this young man's treatment - that it was indeed abhorrent and more so was the APPARENT lack of any action taken against the individuals concerned at the time it happened.


    It wasn't intended I am sure, but your comment above, brings again to mind the current 'documentary' being put together by Sonia Poulton.

    At some point, someone who was advising her, from our 'ME-world' hit upon the subject of children being forcibly removed from their parents and placed into care by Social Services. Together they thought this was an issue worth highlighting over and above others. Or maybe it was more newsworthy - then I am a cynical buggar.

    Anyway, it seems to have developed some 'legs' as they say, and the project has been approved, so work is progressing towards production. Unfortunately, there has been repeated appeals for someone - some suitable parents - to come forward.

    To me - as I've said previously on Facebook (and I'm not immune to the reasons behind any reluctance), it rather smacks of this being potentially viewed as a 'crying wolf' situation and perhaps not something unique to parents with a child who has a diagnosis of ME.

    How many examples of this are we seeing and is it solely relative to our condition? Is it an 'ME issue' or an issue about the system behind removal of children? And one that is based solely upon the opinion of those involved - social workers and related health professionals - and completed on an individual basis irrespective of the actual diagnosis i.e. ME?

    What are the issues that matter concerning ME if the ones that are raised are represented by the campaign against psychiatrists and now against social workers? I generalise of course but potentially this might be how things are viewed.

    It should not need to be said but these comments of mine are meant for debate - they are not judgements y'all. And neither do they belittle the actual experience endured by parents whose children are taken from their care. The fact I need to say such a thing, appears to me rather unique to this community.

    This was the last appeal from Facebook. You can I am sure read more on Sonia's own page - simply need to befriend her I understand:

     
  15. Firestormm

    Firestormm Guest

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    Crossed posts User - but my own is obviously related to the subject matter of yours. Pure chance it seems.
     
  16. user9876

    user9876 Senior Member

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    I've seen appeals going round but I've also heard that she has people for her programme.

    The child protection issue does not just relate to ME but it is particularly bad for ME patients. It really relates to things that are difficult to diagnose or in the case of ME where there are no definitive biomarkers. I've read a well documented case of a child with a brain tumor whose parents were accused of FII. This was the doctors perferred diagnosis and it stopped them looking any further for quite some time. I've read a similar case with a child with Crones disease and talked to a parent with a child with a different GI disease. Bad things happen when a diagnosis is not made and doctors blame parents.

    I think this is different from the problem with pervasive refusal syndrome. I don't understand what motivates doctors here but I wonder if they simply don't really accept ME and hence don't understand how severe it can be. .

    The common factor is that there are two highly disputable psychological diagnoses which overlap other diseases but lack evidence to support them.
     
  17. madietodd

    madietodd Senior Member

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    I think it's time to drown Wessely in kindness. We can all send him email and snail mail telling him how well we can relate to his being misunderstood. We've been misunderstood for years, and we understand how unfair it is. We could each provide one example of a doctor telling us (eg) to stop chasing medical remedies and go see a therapist, or of a personal disaster with PACE.
    And then we could say how sad it is that some people are also treating him badly.
     
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  18. Wildcat

    Wildcat Senior Member

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    .

    The Tymes Trust childrens ME charity works with educating schools and social services about ME as well as informing and supporting children and families... there is a helpline, but as always resources are thin in the ground. The problems often start with school absence..... and then can escalate into wrongful official investigations..... Educating schools teachers, social workers and medical professionals


    Child Protection Issues:
    A Presentation to the All Party Parliamentary Group on ME (2008)
    http://www.tymestrust.org/pdfs/childprotectionissues.pdf

    Jane Colby
    Former Headteacher
    Executive Director, Tymes Trust

    Joanna Smith recommendations,
    misunderstandings over parental or carer influence, and the personal
    experiences of a parent of a Tymes Trust member. Welfare Rights Advisor, Brunel University

    The Young ME Sufferers Trust
    Registered Charity 1080985
    Founder Patron : Lord Clement-Jones CBE

    Abstract
    On 2nd July 2008, Jane Colby and Joanna Smith gave presentations by
    invitation of the All Party Parliamentary Group on ME on Child Protection
    Issues, covering Child Protection procedures ...


    .

     
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  19. Wildcat

    Wildcat Senior Member

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    The Tymes Trust UK ME Childrens Charity Tweets about ME Children Child Protection, July 12 2011

    Tweet from Jane Colby, Director of the Tymes Trust ME Childrens charity:
    Jane Colby: Another Child Protection case Today. Had 68 recent ones - 100% innocence. Will pursue this injustice. Reviewing older cases


    TYMES Trust and AYME presented jointly on the issue of child protection at the last APPG on ME meeting, 22nd June 2011.
    http://www.meassociation.org.uk/?p=6724




    The Briefing Paper regarding child protection issues is available here:
    http://www.meassociation.org.uk/wp-...PROVED-APPG-brief-child-protection-2011-2.doc

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  20. Wildcat

    Wildcat Senior Member

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    The Forgotten Children A Dossier of Shame.

    Tymes Trust ME Childrens Charity Report 2003:
    http://www.tymestrust.org/pdfs/theforgottenchildren.pdf





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    www.tymestrust.org/pdfs/metheillness.pdf


    http://www.tymestrust.org/pdfs/ourneedsourlives.pdf



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    From the ME Association site:
    The Royal College of Paediatrics and Child just this year made a statement made in the recent mini-review of the NICE Guideline on ME/CFS that ME/CFS is a psychological illness with physical manifestations with clinical experience suggesting that the incidence appears to be falling in children and young people.


    After intervention by the Countess of Mar the Royal College retracted its earlier statement in the NICE Guidelines mini-review.

    In a letter sent to the Countess of Mar on 21 April, Cambridgeshire paediatrician Dr David Vickers a member of the Royal Colleges Presidents Advisory Group writes:

    I have reviewed our submission to the NICE consultation and can confirm this comment was from one individual who assisted in our response. As such it does not represent RCPCH policy, and in retrospect should not have been included. The phrase as a psychological illness with physical manifestations was unhelpful.



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    The 1999 Panorama Survey and programme in conjunction with the Tymes Trust
    The 1999 Panorama Investigation Sick and Tired

    http://news.bbc.co.uk/1/hi/health/509670.stm

    ME children treated as mentally ill

    Some 25,000 children in the UK are estimated to be suffered from the syndrome, also known as M.E.

    An exclusive survey for the BBC's Panorama programme found that 60% of families of children with CFS were told their symptoms were a result of psychological problems.

    ME children treated as mentally ill

    Children suffering from chronic fatigue syndrome (CFS) are being pressurised into having psychological treatment which may not be appropriate, according to a BBC survey.

    Some 25,000 children in the UK are estimated to be suffered from the syndrome, also known as M.E. (myalgic encephalomyelitis), and it is recognised by the Department of Health.

    However, doctors are divided on how it should be treated and many do not accept that it exists.

    An exclusive survey for the BBC's Panorama programme found that 60% of families of children with CFS were told their symptoms were a result of psychological problems.

    In a disproportionate number of cases, doctors had suggested that the children's parents had Munchausen's Syndrome by Proxy - a condition which causes parents to harm or fake symptoms of illness in their children in order to gain attention.
    Some who had opposed psychological treatment for their children had been threatened with having them taken into care.

    <Snip>


    NB: 60% of 25,000 = 15,000. Please bear in mind the figure 25,000 is a 1999 figure. New cases of ME/CFS are diagnosed every week.



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    The 1999 Panorama Investigation Sick and Tired

    http://news.bbc.co.uk/1/hi/health/509670.stm

    ME children treated as mentally ill


    The producer of this program stated that they were overwhelmed with the number of families who contacted the programme maker before the programme was made, but obviously could only use two or three cases in the programme, but that doesnt mean there were only two or three cases of very inappropriate psychiatric treatment of children with ME.



    TRANSCRIPT - PANORAMA "SICK AND TIRED"

    http://news.bbc.co.uk/hi/english/st.../panorama/transcripts/transcript_08_11_99.txt



    MATTHEW HILL
    A child is taken to a locked psychiatric ward against his parents' wishes.

    DOCTOR FRANKLIN
    Why go to those extreme and draconian measures? It's horrendous.

    M.HILL
    Doctors divided over the best way to treat children with chronic fatigue syndrome.

    GEORGIE SHELDON
    M.E. SUFFERER
    I came out a hundred times worse.

    M.HILL
    Tonight on Panorama: "Sick and Tired" - the families caught up in a medical dispute.

    Georgie Sheldon developed a brain tumour when she was ten years old. It was removed at one of the county's leading children's hospitals - Great Ormond Street. Although her cancer was cured, her recovery didn't go the way her doctors expected. After a series of viruses,

    Georgie developed an illness called M.E., or chronic fatigue syndrome.

    Continues..


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    The 1999 Panorama Investigation Sick and Tired

    http://news.bbc.co.uk/1/hi/health/509670.stm

    ME children treated as mentally ill

    Children suffering from chronic fatigue syndrome (CFS) are being pressurised into having psychological treatment which may not be appropriate, according to a BBC survey.

    Some 25,000 children in the UK are estimated to be suffered from the syndrome, also known as M.E. (myalgic encephalomyelitis), and it is recognised by the Department of Health.

    However, doctors are divided on how it should be treated and many do not accept that it exists.
    An exclusive survey for the BBC's Panorama programme found that 60% of families of children with CFS were told their symptoms were a result of psychological problems.

    In a disproportionate number of cases, doctors had suggested that the children's parents had Munchausen's Syndrome by Proxy - a condition which causes parents to harm or fake symptoms of illness in their children in order to gain attention.
    Some who had opposed psychological treatment for their children had been threatened with having them taken into care.

    <Snip>

    .

     
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