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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. alex3619

    alex3619 Senior Member

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    Angela does not mention Stockholme Syndrome in her book according to the index and what I recall. I think as a syndrome its way overused, and may even be dubious. People like to simplify things. If such simplification comes with a convenient label, so much the better. In particular identifying motivations can be very problematic.

    I do however think that in select cases there are ME and CFS patients who have been terrified into submission. There is real fear in many patients around the world. In those cases I am aware of this has not resulted in a change in attitude, only in fearful behaviour. Behind the scenes these patients still say what they always did, they just wont say it to an official. So for the limited cases I am aware of I could not call it Stockholme Syndrome.

    I am much more worried about patients who have such faith in the established medical system that they just blindly follow along. I was like that too for some years. At some point though a realization dawned in me that most of what I was hearing was rubbish. At that point a patient will begin examining their information sources carefully.

    There are however political agendas that promote cooperation. Sometimes this works and leads to effective resolutions. Sometimes its to sideline opposition into ineffective strategies - on occasion I wonder if that is what CFSAC is. In particular any time the politics of fear is used in an election campaign you can see this in action. Cooperate with us, vote for us, support us, or bad fearful things will happen.

    Bye, Alex
     
  2. adreno

    adreno 3% neanderthal

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    Because of the rise of individualism - managing the "project" of your life - reliance on experts for guidance has become the norm. At the top of the expert hierarchy are the doctors. They are truly the new clergy.
     
  3. biophile

    biophile Places I'd rather be.

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    The idea of ME/CFS patients being held "hostage" by medical professionals may sound outlandish, but please spare a thought for the severely affected patients who have been sectioned against their will, the families that have had children forcefully removed from their homes, and adults patients who have in some way or another been subjected to or dependent on the questionable whims and practices of medical professionals in the real world. I am sure others can take the metaphor further when thinking about the stranglehold that certain influential people have in paternalistic UK when it comes to opinion and funding in relation to ME/CFS.

    I mostly base this on anecdotes I have read about, and it is difficult to comment on individual cases without all the details, but can you imagine the horrors of being severely affected and then having the police banging at your door or being forced to a place where you will most likely be coerced into dangerous activities or unhelpful environments which may make you even worse? The situation seems even more common and problematic for children, for example:

    "Tymes Trust has evidence that the very systems set up by the government to help sick children and young people are being interpreted in ways that either ignore children with ME, or threaten, bully and intimidate them."

    "Out of 84% of our families who felt bullied or threatened by professionals, 88% specified doctors as being even more responsible than teachers."

    According to some figures presented, Munchausen's Syndrome by Proxy affects 0.001% of families, but 4% of questioned ME families were accused of Munchausen's Syndrome by Proxy, and 7% of the questioned ME families had been subjected to child protection proceedings which were either threatened or actually carried out.

    the forgotten children - a dossier of shame:
    http://www.tymestrust.org/pdfs/theforgottenchildren.pdf
     
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  4. In Vitro Infidelium

    In Vitro Infidelium Guest

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    The Tymes Trust surveys came up recently in another thread . There a major limitiations on what can be drawn from the TT material - http://forums.phoenixrising.me/inde...-he-is-misunderstood.20654/page-5#post-315063 . Unfortunately the limitations have not been acknowedged and this material now contributes to the maintenance of numerous memes which support false notions about 'what is known'.

    I don't where 'police banging on the door' could possibly come from. The only circumstances of police involvement in detention under the mental health act is where there is reported threat of serious harm to self or others. In the case of chidren there may well be over enthusiastic intervention - but that is inevitable in a society that is profoundy anxious about carer harm to minors. This is certainly not an issue specific to M.E/CFS and authoritarian intervention in carer/child relatonships in health contexts in the UK is set to increase http://www.bbc.co.uk/news/uk-20846317

    However even with medical and social services staff keyed up for intervention, there are very significant limits on what would trigger removal of childen to 'places of safety' or in patient treatment - quite simply there are not the spaces to achieve this on anything but a minimal scale. The same thing applies to adult mental health detention. That systems 'misfire' on occasion is inevitable - the systems are run by fallible humans, but in the UK at least, the capacity for either child protection of adult mental systems to become extensively invasive is limited, if by nothing else (and there are substantial safeguards), a simple lack of resource. Still I do hope that Frances Farmer Will Have Her Revenge on Seattle .

    IVI
     
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  5. biophile

    biophile Places I'd rather be.

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    Probably from my memory of the case of Sophia Mirza's sectioning.

    As for the Tymes Trust literature, I have not looked at it in depth yet. Obviously self-selection bias is a potential problem for any survey, but I cannot comment on how much this affected the results on child protection proceedings.
     
  6. In Vitro Infidelium

    In Vitro Infidelium Guest

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    Trouble is we end up with a mythology rather than anything that people can respond to pragmatically. Is it that the Mirza case is representative of a systematic approach to M.E/CFS ? Was it an outlier of rare gross misconduct or something based on administrative confusion ? Or an appropriate action taken in circumstances where an individual was reasonably believed to be of likely harm to themselves ?

    There are certain realities that we can't escape from. In the UK a least, there is a strong societal expectation of intervention - basically people don't like the idea of those with mental health challlenges being left alone to t inflict harm upon themselves . Thus doctors, social workers, housing officials and the police have legal requirements to intervene - that includes entering premises by force if necessary. I don't think the police act as though they are coming to arrest somebody, and although the claim in the Mirza case is that "the police broke in" - usual practice would be to employ a lock smith to drill out the lock, in rented premises this would likely involve the landlord. Of course this may be terrifying for the patient, but then the assumption is that they are in danger and action to protect them is necessary.

    I don't think we should confuse the fact that M.E/CFS sufferers have contact with psychiatrists because there is a lack of more appropriate services, with a notion that radically interventionist psychiatric approaches to M.E/CFS are routine. Something that has to be bore in mind is that M.E/CFS can be comorbid, or at least depending on definition, sequential to/from serious psychiatric illness - that means in the UK there will be several hunderd patients every year who may have M.E/CFS but who quite separate from any M.E/CFS impairment, will require in patient treatment for a mental health condition. I doubt anyone can say what exactly the situation was in the Mirza case, but to assume that because Sophia Mirza had an M.E/CFS like illness prior to her hospitalisation, that the doctors/social workers/police acted wrongly is misguided.

    IVI
     
  7. Roy S

    Roy S former DC ME/CFS lobbyist

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    I wonder who is "misguided". Sophia's family is still continuing their efforts for all of us in memory of their daughter. That I respect.
    http://www.sophiaandme.org.uk/
     
    Meanwhile, with Wessely getting his knighthood I'm wondering what the Countess of Mar's next move will be (and whether she knew it was coming). After rereading her letter at the beginning of this thread I think she does have more to say.
     
    Min likes this.
  8. Roy S

    Roy S former DC ME/CFS lobbyist

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    Bob likes this.
  9. peggy-sue

    peggy-sue

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    I have a friend who got sectioned because of having "false illness beliefs" (having ME).
    Sophia wasn't the only one.
     
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  10. Holmsey

    Holmsey Senior Member

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    I have a close friend who walked out of a supermarket job after what he saw as an attempt at bullying by a manager, he went back to his flat packed a bag and took the next train south to spend some time with his mother while deciding what next. In the interim, a co-worker confussed by his quiet nature, and the fact he did not return to work the following day decided he was a potential suicide risk. If you knew him you'd find that laughable but the co-worker didn't, and IMO, given the circumstances, acted with best intentions. No locksmith, no landlord, real information so no messing, when the Police didn't get an answer the door was kicked in.
    I'm wholey with IVI on this, you have to understand the full circumstances around such an entry, and where there's doubt you have to accept that the Police will act as is seen to be appropriate and without delay, doors can always be fixed, people can't.
     
  11. peggy-sue

    peggy-sue

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    Sophia couldn't be "fixed" after her sectioning. That was the last straw for her.
     
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  12. Bob

    Bob

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    There can be no doubt that the medical profession sometimes (and maybe often) doesn't know how to best deal with complex and severe cases of ME. There's no doubt that the authorities often don't know how to deal with children with ME. They don't even know how to deal with mild or moderate ME. The best my doctor can do is to admit, sensitively, that there's nothing she can do to help me, beyond helping secondary symptoms, such as depression, pain, and sleep patterns, etc. There's also no doubt that many in the medical profession, esp in the South East of England, consider CFS/ME to be a psychological or psychiatric illness.

    So it seems very obvious that it must be easy for the authorities to get it wrong with complex cases, when someone is severely ill. I can't see that there is any debate there. Considering all of these issues, then of course they are going to get it wrong sometimes, or often. If the medical profession feel powerless to help severe or complex cases, because they are ignorance about the issues, and there is a belief that the illness has psychological origins, then they are sometimes going to get it massively wrong.

    So we need to minimise the situations where things go wrong for CFS/ME patients, in terms of encounters with the authorities and medical profession.

    If honest and helpful information about CFS/ME is propagated, then the medical profession, and other authorities, are less likely to get it wrong. If misleading or deceitful information is propagated then this increases the chances of the medical profession, and other authorities, getting it wrong.
     
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  13. Kina

    Kina Moderation Team Lead

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    Please note, a few posts have recently been removed from this thread. This thread is about Lady Mar's communication with Simon Wessely. However, it turned into making negative off-topic comments.

    It's fine to disagree with another member, it's not okay to post negative comments about a member just because they have a different opinion.

    Respond to the content of a post without making negative personal comments about the person who posted them. After all, it's really the ideas being presented that you may find problematic. You may feel very passionately about a particular issue, and to make a persuasive case, you should focus on the facts. Simply posting negative comments does nothing to add information and these comments will be removed as per our forum rules.



    Thank you.

    Kina :)
     
  14. taniaaust1

    taniaaust1 Senior Member

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    IHi alex,
    Ive no idea if he's cited Beard in any of his papers but he certainly has a thing for him in his (Wessley's) book http://simonwessely.com/Downloads/BookChapters/Viruses_Fatigue.pdf
     
  15. taniaaust1

    taniaaust1 Senior Member

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    Those they have died from this disease and they have altopsied.. dorsal root inflammation has often been found in those cases. Many of us DO actually have markers of inflammation in test results. It is luck of funding and lack of studies into good biological research and the fact that this illness isnt being well defined which is causing the issue.... the past 25 years have been focused on psychological studies which has gotten most of us nowhere.

    I personally think the whole issue is that there is many different things currently put under the illness banner and the further one goes back in time.. the more things probably was lumped under whatever banner they were choosing to call patients who had the symptoms complexes we do. Going back 50 years ago.. maybe we then would of even have been being confused with MS patients. We nowdays have the science to be doing better (science they have not have had 20-30 years ago) and more studies but just dont have the funding (most of the funding has gone into psych studies) and till they start subgrouping.. that too screws things up.

    No money/funding to do all the follow up studies we need. There are probably too more important studies to do then "proving" their is inflammation in ME. (im more interested in them finding out the what is causing this inflammation being found in some)

    These things are the "whys", on why there is so much confusion and why nothing has been clearly proven thou things like dorsal root inflammation being found in some ME altopies, certainly cant be disputed.

    Most of us who have had this illness long term.. have done just that. I know Ive read every single ME/CFS study I could get my hands on over the years and used them to form my opinions along with my own experiences too.

    Would it be at all wise to put hope not on the "physical" explainations and treatments if one CLEARLY has a physical illness which has been shown via having many test abnormalities? Many of us including myself, have many different test abnormalities due to the ME. Things like having no normal reflexes, unequal pupils during ME flares, abnormal blood test results (i have a whole folder full of abnormal test results Ive had), other abnormal neurological signs etc etc put one in a situation in which one needs to be looking for physical causes.. psych issues cant cause these kinds of things. Hence why many of us are lookign for a physical cause. Many who do have ME, do have abnormalities which cant be explained by a psych model of the illness at all. And to many of us who do have abnormalities.. Wessely's views have been quite harmful.
     
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  16. taniaaust1

    taniaaust1 Senior Member

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    If he's changed his views he should make a public retraction over his past views as after all his past thoughts are affecting the medical field today.

    All people wanted was a simple clear answer to her question.

    maybe Hilter should be excused too then even if he'd still been alive today as after all its historical and all something which cant be changed.
    Yes WE ourselves cant change that past but Wessley still can.. He could call a media conference, the media loves him and Im sure if he wanted to make a very important retraction announcement he could get heard. If he dont nowdays agree with previous things he's said, which are still quoted by people who believe it still.. he should do a public retraction.

    I can say in my case I WAS turned down twice for disability due to that I had ME/CFS and it wasnt a turn down due to gov trying to save money. The ones I had for assessors didnt believe in ME/CFS and believed I was even faking needing to lay on the floor as I couldnt sit in a chair while being interviewed on my capabilities. I meet all the disability requirements and should of been instantly approved but instead.. due to the name of the illness, I kept being not approved (one cant say that someone who cant even sit up..is fit for work).. they didnt look at all at my lack of capabilities but rather focused on the name. I even got one of the rejections I think over not doing GET, one of the rejection grounds came on the grounds that I hadnt taken up ME/CFS treatment. That was even after I'd gone to a physio and been injured due to what was supposed to be a specially tailored phyiso exercise program for ME/CFS suitable for a severe patient. I was injured on the very first exercise I did.

    I even got told "You will never get disability for that" (meaning CFS) by one of the gov people there working with my case.

    When my case ended up being heard out of state which I think is quite unusual..most who are far abled then I was, get disability 2nd attempt, so their cases dont end up going to another state..mine ended up having to go to head australia place for centrelink as there was no way I could give up getting disability so could only just keep on appealing over and over), the guy making the decision was horrified that I hadnt been instantly approved and said I should of been due to the severity of my symptoms (he actually said that). Discrimination and wrongful biased in my case would of been able to be proven in my case if I'd been well enough to have put in a complaint. What is usually a 3mth disability process for most had taken 8-9mths due to all this.

    My states gov (Sth Aust) is STILL discriminating against ME patients.. they recently decided offically that those who have ME/CFS dont quality at all for the heating and cooling rebate which is given to illnesses in which heat or cold is an issue (I think even FM qualifies for it). I go actually unconscious in heat at times and got the knock on the ground on having ME/cfs (the gov letter sent to me actually states that). Ive now got my local ME/CFS society trying to deal with the gov on their ruling against ME/CFS patients.

    Its very easy for some to say we should be all moving on from the Wessely stuff from the past, but some of us such as myself are clearly still being very affected evidenced due to the biased, due to the views he's got out there and the impacts he's made by them on governments.. ones who arent even in his own country.
     
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  17. taniaaust1

    taniaaust1 Senior Member

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    Before receiving a ME/CFS diagnoses, things like depression and mental health issues being the cause of "all the symptoms" are supposed to be ruled out. I dont think many of us would disagree with that being done and if there needs to be a psych to do that.. so be it. A doctor himself shouldnt be making judgements or guesses if he isnt sure and none of us like the amount of people who recieve a false diagnoses of ME/CFS.

    A ME/CFS diagnoses should only happen if one has ME/CFS symptoms which can not be explained by another illness.

    Im not in agreeance thou that more confident doctors necessarily mean more correct diagnoses. Overly confident doctors who dont know much about an illness are more likely to misdiagnose whereas an unsure doctor may be more likely to send someone to a specialist for a diagnoses opinion. Correct diagnoses is more about doctors having good knowledge.
     
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  18. taniaaust1

    taniaaust1 Senior Member

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    I thought he was being serious about the Stockholm Syndrome thing myself as I cant understand the rationity of a few people here and that would explain things.

    anyway. I'll continue to wonder.

    * Note, this isnt the put down of anyone. All I know is this illness and dealing with it and dealing with others due to it.. can have mental health affects on people. I myself believe I had PTSD for a while due to this illness and experiences around it. If its serious enough to give some of us PTSD.. maybe some are actually getting something like Stockholm Syndrome and no matter what they are told or learn... may want to still be defending some who have done some terrible things.
     
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  19. Valentijn

    Valentijn Activity Level: 3

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    I think he cites Beard in most, if not all, of his CFS history/neurasthenia papers. Maybe throws in a comparison in some of the other papers too. I'll be rereading his work soon to compile a list of flaws that I can spot, and will add Beard to the list of things to look for :p

    Example: in one study they explicitly only select patients believed to be "suited to CBT" :confused:
     
  20. barbc56

    barbc56 Senior Member

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    That would be nice wouldn't it? However misguided, Wessely is, he truly believes he is right as much as we think he is wrong. If you go by that logic, does that mean we owe him an apology for any beliefs we held in the that held in the past that have changed today? Absolutely not. People don't apologize if they think they have nothing to apologize for, That's not how life works and we need to work around this by persistence, presenting facts, advocating for studies that focus on the physical side of me/cfs. Attacking him is just spinning wheels and will get us nowhere. Valid criticism is much more effective.

    I know, it's not quite as simplistic as that as well as easier said than done.

    I feel uncomfortable when people start to compare other's who have different beliefs to Hitler. You can't compare the two situations, This does not mean what has happen isn't distressing as it is. Maybe his opinions were evolving just as many of ours have over the years.. As I said at the beginning of this post, he won't apologize if he thinks he is not wrong and no matter how much we scream and shout that he should, it.s just the reality of human behavior.

    Barb C.:>)
     
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