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Medical harms poll (Potential for class action law suit regarding CBT/GET)

Discussion in 'Action Alerts and Advocacy' started by Research 1st, Sep 30, 2016.

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What type of harm can you prove, having being personally advised CBT/GET is safe & effective?

  1. Documented relapse in my illness (e.g. from moderate to severely affected).

    4 vote(s)
    36.4%
  2. Temporary documented medical event from engaging in CBT/GET (fainting, chest pain, seizure etc).

    1 vote(s)
    9.1%
  3. Development of Mental Health Problems (PTSD, Depression, Self Harm, Anxiety, Agorophobia etc).

    4 vote(s)
    36.4%
  4. Blocked from further medical tests and diagnosis due to disbelief by other pro CBT/GET doctors.

    6 vote(s)
    54.5%
  5. Discovering in my medical records lies written about my mental health which lead to further harm.

    2 vote(s)
    18.2%
  6. Discovering in my medical records lies written about my parents/carer which lead to further harm.

    1 vote(s)
    9.1%
  7. Disability benefits cut from 'mental' accusation of pro CBT/GET accessor, suffered financially.

    1 vote(s)
    9.1%
  8. Physically abused in Hospital (refusal to prescribe meds based on disbelief of symptoms).

    2 vote(s)
    18.2%
  9. Mentally abused in Hospital (refusal to alievate your fears, speak to you, threatening you).

    3 vote(s)
    27.3%
  10. Sexually abused in Hospital (self explanatory) by psychiatric ward staff prescribing CBT/GET.

    0 vote(s)
    0.0%
  11. Developing a NEW diagnosed disorder that would have been caught earlier but was never investigated.

    1 vote(s)
    9.1%
  12. Developed life threatening event that required Hospitalization due to neglect (due to only CBT/GET).

    1 vote(s)
    9.1%
  13. Being thrown out of a GP's care for arguing against CBT/GET as an appropriate therapy for me.

    0 vote(s)
    0.0%
  14. Being thrown out of a Hospital consultants care due to the same as above.

    3 vote(s)
    27.3%
  15. Previously took legal action against the NHS or allied services due to harms, but lost case.

    1 vote(s)
    9.1%
  16. Other reason not listed - I prefer not to explain online

    1 vote(s)
    9.1%
Multiple votes are allowed.
  1. Research 1st

    Research 1st Severe ME, POTS & MCAS.

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    Hello everyone.

    Due to recent developments of the forced release of the PACE data by QMUL I intend to take matters further legally, to protect myself from further harm from the NHS approving a therapy that has no evidence base and is thus unsafe for clients with organic causes of their ME CFS.

    Ideally, this would not be necessary. The UK NHS would have withdrawn CBT/GET, via a NICE ruling, but we know they won't as then it exposes the fact there is no treatment at all for ME CFS in the UK, a somewhat embarrassing situation that would then retrospectively admit, patients have been neglected for decades using harmful therapies due to a massive lack of biomedical research funding (funding there was, was siphoned off largely by psychiatry).

    Sadly, CBT/GET will stay. If under pressure as to why, the NHS can blame NICE and NICE can blame the DOH the DOH can blame the MRC. Of note, the DOH, MRC, DWP were all responsible for PACE. It is 'their' brainchild. Nothing will change as it cannot do, due to the consequences. (Changing the medical advice, admits they were wrong, and victims will demand compensation).


    Possible roads to legal action against Health Agencies who back CBT/GET, proven to have a null effect.

    Potentially this could be groups of harmed patients and with the help of a legal team. I cannot do this on my own, although I have an unusual amount of abnormal tests, which puts me in a good position to trounce CBT/GET as an effective management 'tool', most don't. I need to find two types of patients discussed below. 1) Physically harmed, and 2) Mentally harmed - or both.

    What I need is other people to come together, to form a group. In law, although the term is no largely defunct we refer to this as a ''class action''.

    Before I start canvasing support to inform a legal team to consider the options we have against the fraudulent medical therapy (CBT/GET) used in the UK and around the world, of which I was assured (in writing) was effective by various specialists I have met I wanted to do a brief poll here to see your potential experiences, if they differ, if they are similar.

    1 person might respond favorably, 20 might. What we need, ideally is 100's of people, from all over the world who can prove in a court of law, that they were harmed physically or psychologically, on a personal level, due to their contact with doctors who followed the Biological Psycho Social perspective of CFS, commonly known by the acronym as 'BPS'. The birthplace of this is the UK, known as the 'Wessely School',

    The questions I have made on the poll are obviously examples and not specific, and you can answer the poll in the box or add your own ideas and answers as well.

    As sad as it is, (you have all been harmed as no medical research has taken place due to psychiatry 'owning' ME CFS), in medical law, you need evidence of personal injury to start a case though.

    I have been down this route before with ME in the UK, and have a basic idea of the system having failed before hand. I failed, as then I had little knowledge and was trying to 'prove' ME wasn't CFS.

    Times have changed. Now I am proving that CBT GET doesn't work for organic states of ME CFS. Now there is evidence for this.

    The two types of people that are useful to make a successful group of sufferers claim are mostly:

    Physical disease evidence you have in your possession not explained by ''unexplained chronic fatigue'' (the requirement of CFS) and in which CBT/GET would be useless. Ideally I am looking for people who are research savvy, test obsessed, and have a great archive of appalling medical health!

    Mental health issues that came on after the diagnosis, due to bad treatment:
    People who can prove beyond all reasonable doubt, they have suffered mental harms because of doctors ignoring them (neglect) and making prejudiced decisions against them (misdiagnosis), are also useful to our cause. This would be bolstered by an 'experience', that triggered a diagnosed mental health condition.

    E.g. Your experience of Hospital A, lead to the development of PTSD
    E.g. Your experience of GP b, lead to the development of major depression.

    The physical neglect often leads to the mental health problems.

    Lets see where we get, as a basic scoping exercise.


    Staying safe online when discussing personal medical health and legal matters pertaining to your health:

    Always go offline, to discuss your health problems, with legal professionals.
    Professional legal representatives have to be accountable for professional behavior and must keep your information confidential.
     
    lauluce, ghosalb, BurnA and 9 others like this.
  2. Asa

    Asa Senior Member

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    What about harm(s) associated with -- and not sure how to best phrase it, but -- a culture of CBT/GET?

    So that a patient (in one or more appointments) is told some version of: Your symptoms are imagined. You need to be more active, socially and physically. You need to exercise. You need more exercise. Etc. Now, go away. And if you return, you're again berated as mentally, morally, socially deviant and physically innactive. Etc.

    It's the cheapest, most abbreviated version ever of CBT/GET.
     
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  3. Countrygirl

    Countrygirl Senior Member

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    As I was reading the first post, I too was wondering if this major class of patients could be included somehow, at least as back ground information. The culture of GET/CBT and the influence of Wessely and his henchmen have shaped the attitude of the medical profession since the early 90s and before that we were all ignored anyway and often treated appallingly. Many have never recovered from the trauma of those days and many committed suicide.

    Most of us however have not been subjected to GET as our doctors, influenced by the BPS school, remain atheists regarding ME and consider we are not worth bothering with and that treatment would be a waste of resources. The advice was and is to ignore our illness and continue to work ........a disastrous approach that resulted in severe and permanent disability.

    Way back in the late 80s B.W. (Before Wessely) I was approached by a London barrister (arranged by the then wonderful AFME.....those were the days!..........who put a great deal of work into our case of medical abuse and negligence (recorded in the 'Secret Files') as they wanted the ME patients in my town of SIdmouth in Devon to sue the medical practice for the huge harm that they inflicted on us that included the death of the vicar. (Dr Charles S also offered to come to speak to the doctors but they refused to meet with him.) One of the major daily newspapers planned to publish the story, but the patients in the end were too intimidated by the behaviour of the doctors to continue. The county medical authorities even refused to take a complaint from us as 'we don't accept complaints from ME sufferers'. Children were locked up and were denied food by the local Wonford Hospital in an effort to force them to function, until a wonderful paediatrician from hundreds of miles away helped me 'spring' the children and organise a dash out of the county to the safety of his home. At least I received an unsolicited phone call from a member of the GMC to say how disgusted they were with the behaviour of the Sidmouth doctors.

    Maybe targeting one particularly bad medical practice or clinic as a test case could be considered again.

    Although the negligence and abuse of the many cannot be used here as GET was only a twinkle in the eye of Wessely and co at this stage, I think their history could be used as a background history along with the story of those who are subjected today to negligence and abuse aka known as 'standard medical care' as the culture of GET damages even those who have not been forced down this dangerous route.
     
    Last edited: Oct 4, 2016
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  4. helsbells

    helsbells Senior Member

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    Not me, only the usual awful experiences of being told I was hysterical and now being phobic of hospitals which probably accounts for a huge amount of us in the UK who've been ill decades. I just wanted to lend support for the idea, I've always thought this if possible, would be be an ideal scenario, inoculation rather than keep trying to chip away on their terms but I know in truth difficult course.
     
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  5. Countrygirl

    Countrygirl Senior Member

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    I have just read the responses for the above questionnaire, and feel frustrated that I cannot participate as I could give a positive response to a number of them on account of the behaviour of medical professionals fostered by culture of the belief that GET and CBT are appropriate in ME, but I have been ill too long to have been coerced into this regime of treatment. I am sure this is true of most of us. The damage caused to the majority of the patient community is 'hidden' as this has had an indirect rather than a direct impact on us. I wonder if another questionnaire would be more applicable that records the 'indirect' harms inflicted on patients by a medical profession which have been mislead by White and co over the decades.

    As one example, as some of you know a long-standing friend of mine took his own life on 23rd August after becoming ill in October of last year because, despite all his and my efforts, we couldn't get a doctor to take him seriously. I can't help but place much of the responsibility for his death at the feet of White, Chalder, Sharpe, Crawley and Wessely who have shaped the climate of opinion in the medical profession.
     
    Last edited: Oct 4, 2016
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  6. PennyIA

    PennyIA Senior Member

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    I'm in the US, so I'm not sure if my information matters here. But I didn't quite find the one category for voting in. Medical neglect as a result of CBT/GET culture and disbelief that my symptoms were real that required more than ten emergency room visits before a doctor found that I actually had gall stones and due the year and a half of neglect, it became emergency surgery. (doesn't quite fit in the category Developed life threatening event that required Hospitalization due to neglect (due to only CBT/GET)... because the life threatening event was pancreatitis and liver enzyme -- preceeding liver failure was the result of untreated gall stones and not due only CBT/GET).

    BUT, if my symptoms had been trusted, I would have been tested for gall stones far earlier and never had a life threatening event - in fact, I could have possibly handled it with dietary changes instead of having to go through surgery at all.
     
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  7. Countrygirl

    Countrygirl Senior Member

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    @PennyIA Yes, this is the major problem that has harmed the majority of us. It is not so much the actual impact of GET which few of us have experienced, but the culture it has fostered.
     
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  8. medfeb

    medfeb Senior Member

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    In the U.S., doctors may not recommend GET specifically, although the CDC sit still recommends it. But I've seen a number of doctors tell patients to exercise and even when patients report back a negative reaction, tell them to keep it up.

    The other harm is to patients whose symptoms of cancer, heart disease, etc are dismissed until its too late because ME patients are not believed, taken seriously, etc.
     
  9. flybro

    flybro Senior Member

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    pluto
    I avoid 'medical care' at all cost.

    As bad as this sounds, I think I would prefer death over a trip to hospital.
     
  10. PennyIA

    PennyIA Senior Member

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    To be honest, I was part of a trial at Mayo. And while the acronyms were never used they absolutely were what I've heard as described as CBT (ignore your symptoms and live your life fully, you should be happy as to how healthy you really are) and GET (start really, really low but gradually increase your effort every single day). The minute I crashed, they dropped me from the study (no idea if I would have been included in 'adverse effect' or just dropped altogether) and I'm not sure they ever published anything about their study.

    That said, the crash was minor and I threw the idea of trying harder out the window immediately. So, the short-term consequence of GET wasn't enough that it would justify much compensation for me personally. But the culture of just ignoring symptoms and these people only believe they are ill and have a psychological issue has definitely been a trademark of a lot of the treatment I get. Untreated gall stones was the most severe of those. Trying desperately to try to get someone to help me manage my symptoms (because no one was) and getting told that I needed to go through psychiatric evaluation first or getting told by a neurologist and a cardiologist - "you don't look like you are sick, ergo you aren't sick' as opposed to trying to test and diagnose me. Rheumatologists won't touch me with a ten foot pole even though I've been told by two radiologists I have the beginning signs of what looks like rheumatoid arthritis. .. medical neglect caused by a culture of dismissing concerns because we can't possibly be ill is something far too many of us have to deal with.
     
  11. taniaaust1

    taniaaust1 Senior Member

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    I personally to believe that the only way to the terrible treatment what is going on is by a class action lawsuit (a worldwide one sounds good to me).

    like some others here though are saying Im being and still majorly are being abused, due to the CBT and GET culture out there. I know those who didnt help me as much as they shouldnt tried doing so (then allowing neglect and harm to occur to me) were under this culture. Ive been told I need to "try harder" by the states disability service.

    Im now suffering from mental health harm (I believe I now have PTSD over the ME/CFS abuse as I fit the diagnostic criteria for that though I cant get to a psych for assessment) and have some maybe lasting physical harm due to this neglect and of being basically medical abandoned in many ways as I cant get support services for ME/CFS.. this has lead to me even possibly needing surgery.

    eg I torn a tendon and couldnt get to a physio as i was denied any support to help me get to one (Im housebound due to the ME and cant leave my house without a support worker) and I couldnt find a physio who visits my location and now have its all healed wrong and I now have limited movement of an arm. Drs told me for a while I needed physio but now due to the time which has gone on with me unable to get the support to get to a physio, Ive now been told I probably need surgery. (I cant get the support services I desperately need and cant now get medical care).

    I know this CBT and GET culture affects me as Ive seen drs go to the CDC while Im there in an appointment and read the ME/CFS info on there which included the CBT and GET and then ignore my physical health issues obviously cause they have got the impression this illness is a mental health one. I have the states disability service saying and acting like I dont try hard enough and they ignore how severe I am.

    it took THREE different drs speaking to them (and I was ending up in hospital a lot collapsed) before they'd even agree for a wheelchair for me but they STILL to this day refuse to support that Im physically disabled and wont give me ANY support at all for ME/CFS (my state disability service only will recognise that I have aspergers.

    I didnt fill the survey out above as though I can prove I have had many abnormalities on tests eg low glucose, severe autonomic issues with my BP etc, abnormal EEG (common ME finding), hyper-reflexiaetc etc . as I said its the GET and CBT culture which has affected me.

    When I went to get a disability pension, I got a rejection based on "insufficiant treatment". They didnt write down CBT or GET thou but I really think it was that as I was seeing a CFS specialist at the time and we were trialing supplements etc but there wasnt much else he could do. So think they rejected me due to me not having had had CBT and GET but how do you prove that when they didnt specifically say that and just state "insufficiant treatment"?

    I was so sick I couldnt even stay seated at centrelink appointments or at assessment appointments so was laying on floor not to faint but got rejected for disability at least twice.. one of the assessment guys actually said that he would make sure I never got disability!!! he didnt believe in ME/CFS!!!!!,.. then stuff went missing from my files supporting my case when I appealed rejection, I believe this guy took it out/

    My case ended up having to be heard in a different state and the new assessment guy was horrified I didnt get it first time.

    While my disability rejections were being appealed I was forced to work part time under threats I would otherwise recieve no money at all while and that other who worked at my local centrelink office even refused to accept my drs sickness certificates and threatened me to be but off Newstart (job seekers) if I didnt work part time (6-8 hrs per week). This then resulted in me smashing up TWO CARS due to trying to get to work too tired in fear of his threat and of fear of then having no money to live off of. (I lived in country area where there wasnt a good bus service and I couldnt be away from home all day anyway so was forced to try to drive then when I knew I was unsafe to do so).

    I believe due to this culture that this illness is a psych problem and not a "real" problem is perputrated by the how its been put out that CBT and GET helps us.

    Then my CFS specialist once told me about the PACE trial which showed that we can get better by exercising. (he never pushed me to exercise as I'd been insistant I cant but Im sure him believing in the PACE trial stopped him from advocating for me strongly to get the support services I needed (he did advocate but not very strongly so ive left completely medically abandoned at this point).

    Due to this I'd love to join a class action as Ive been so badly mistreated due to the flow on affects of the GET and CBT though I was never pushed to do it.

    Is caused people who should of helped me not to believe in this illness, its caused drs not to treat me as I should of been treated, its caused smashed up cars, its caused me getting onto disability to be delayed so lead to worsening ME, its caused me now to have limited arm movement.

    its caused a much worsening of ME cause I couldnt get the home support I need so have to push myself too much over my limits often, its causing now me not to be able to get medical care (not just for ME but for other serious progressing health issues too and its endangering my life), its caused me even to "have chosen to go to jail" twice (Ive spent 12 weeks in jail all up now) just so I can get the needed break from trying to take care from myself when I so arent coping.. so sending myself to jail is now an option for me.

    I can probably prove this as I think that the psychriatrist which did the court assessment has that in my psych report that I was so desperate for ME/CFS support that I was refusing to leave jail (I refused bail and even stayed there one time for something I didnt do).

    When I cant look after myself, staying hospital isnt an option for me as they just give me a drip and kick me out, they've even kicked me out and sent me home unable to walk on one occassion (on other occassion they send me home hardly able to talk and falling). I was then left having to crawl up my driveway to get back inside my house from a taxi. Ive been left crawling on floors cover in shit and vomit.

    Many of the drs at the hospital do not take ME seriously as they they its a psych illness (even with the many abnormalities I have which have showed up on test results).. and the CBT and GET culture are adding to this.

    In my case thou GET and CBT these those arent forced onto me at all due to my ME/CFS severity (most drs wont tell someone who uses a wheelchair and needs pushing to do those) and the fact we dont have anyone in my state "working" with ME/CFS patients in this way, we dont have like the CFS clinics which have been set up in England.

    So you are just left abandoned by drs due to these beliefs its a psych illness and they believe things like that due to reading things like the PACE trial and that the CDC has GET and CBT listed as treatments. (as I said Ive had drs mention PACE to me or seen them reading the CDC info). Im being abandoned.

    Ive even been in communications (with a member of parliament doing the letters for me) with my states health minister STILL TRYING to find out which service in my state gives help to ME/CFS patients. The first letter I mailed asking that was sent out Jan/Feb this year and now they've been sent 3? or 4? letters as the member of paraliaments office has done more for me

    I cant even get a straight answer from them!!! My MP has now told me yesterday to take it to commonwealth level as we arent getting nowhere dealing with the health minister or disability services etc here in this state.

    PACE I think did a huge damage to things. I'd like to see those authors or the ones responsible for putting out this FRAUDULENT info sued which has caused countries to not give any help to those who have ME/CFS and are leaving us like myself abandoned by services. Im not sure being one of the ones who has coped a huge fall out from this, Im not sure if I can be in a class action or not but I want to be as I know it has impacted on me.

    I cant even be assessed properly by the physio I have now as she is ignoring my illness obviously too due to the GET and CBT culture.

    (Has my whole states health services ignored ME/CFS and its severity eg no home or care services to ME/CFS patients due to this culture???? Im still trying to find out why my state has abandoned us here in Sth Australia).
     
    Last edited: Oct 4, 2016
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  12. RogerBlack

    RogerBlack Senior Member

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    My understanding on the legal side - limited though I looked into this from a benefits administration in my case point of view.

    'Class action' - if this is action brought in the UK - there is no way in hell the UK courts would permit decisions made by other national bodies, affecting other nations patients to be relevant - the harm is simply too distant.

    Class actions are also far more limited in the UK than the US.

    What might in principle be possible is a Judicial Review.
    If you can find someone, who within the last six months has clearly been harmed in the UK by NICE recommending BPS, then you can request a Judicial Review of NICEs decision not to act on new information about PACE, on the grounds that this is disability discrimination under the equalities act, and a failure of their anticipatory duty.

    However.
    NICE guidance has all over it caveats and 'all patients may not benefit', which is going to raise hideous problems.
     
  13. Jan

    Jan Senior Member

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    I was going to start a thread on this subject, but did a search first and found this thread . Would it not be better to start with just patients harmed within the UK and trying to pursue a case from there? I think people in the US should do the same there.
     
  14. RogerBlack

    RogerBlack Senior Member

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    Basically - there is no way in hell - unless someone involved actually comes out and says 'I did it because I hate the disabled, and want them to suffer' that they will face any censure more serious that at most having their papers retracted. And even this is unlikely in most cases.

    In order for a legal action to succeed, someone needs to have inarguably done something wrong, usually with intent.

    In the case of BPS, there isn't really a formal association, and the bar needed to get over 'intentionally abusing patients' (when the obvious defence to such an allegation is that thousands of clinicians agreed with them) is probably insurmountable.

    I would love this to be wrong, but just because a lot of people did something bad does not mean that there is anyone legally liable unfortunately. Legal boundaries unfortunately further complicate this.

    It would need to be a conspiracy. And you can't prove a conspiracy over lots of people doing dumb things.
     
  15. Valentijn

    Valentijn Senior Member

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    You're suggesting that they need a motive (not merely intent to mislead, etc), and that is completely untrue. Motive only matters to the media - it's irrelevant in court.

    And "intent" doesn't mean that the outcome (harm) was necessarily intended, but just that the action (deception) which led to the outcome was intentional.
     
  16. Countrygirl

    Countrygirl Senior Member

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    Soooo..............if we had:

    a hypothetical patient who was told by a doctor that GET was a suitable treatment

    that patient asked whether there was any evidence that GET could cause harm

    the doctor said no, it is safe and moderately effective ( absolutely right because the UK's leading paediatrician says so)

    patient complies and relapses severely

    that patient could sue?

    Problem is exactly what scientific evidence is there in the UK (research from elsewhere is not relevant, I suspect...........I mean...............its foreign :bang-head:) that could be used as evidence that GET causes harm? I don't think the MEA survey would count, would it?

    I think any legal challenge would have to be elsewhere. Even then it couldn't be used as a precedent in the UK, of course, again................. as its ..........foreign.
     
    Last edited: Oct 26, 2016
  17. Daisymay

    Daisymay Senior Member

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    And another problem is how would you objectively prove you were harmed by GET?
     
  18. Countrygirl

    Countrygirl Senior Member

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    Balance of probabilities perhaps? But, yes, it would be very difficult, especially without recourse to research from other countries.
     
  19. Valentijn

    Valentijn Senior Member

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    Maybe. The question would be who the patient sues. Did the doctor know that GET causes harm, or have a duty to know that? More likely the doctor (reasonably) believed the ME "specialist" researchers who claimed that GET doesn't cause harm.

    A self-described ME specialist acting as a clinician and researcher would be the easiest target. They probably would have a duty to know about the material published in their field of expertise, and that would include the published accounts of the patient surveys which show that a very large number of patients are harmed by GET.
     
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  20. Jan

    Jan Senior Member

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    Why would research from elsewhere not be relevant in a British court?
     

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