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Hooper's initial response to White re PACE Trial

Discussion in 'General ME/CFS News' started by dasiymay, May 19, 2011.

  1. insearchof

    insearchof Senior Member

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    Hi IVI

    You have gone to some trouble here - citing case law, for the purposes of discussion, so I think it warrants taking the time to make a reply.



    I would like to hear more about why you believe it would be 'profoundly misguided''.


    As for a group focused action v an individual who runs a test case for the benefit of a class or group - I think is splitting hairs.

    However, I would say that class actions are far more powerful than individual actions for the sheer reasons of numbers, the attention the actions generate (and the resultant political pressure) and irrespective of any other remedies sought, the very significant damages claims that are generally sought and needed to compensate a large group. Collectively they cause such embarassment to the government and such political pressure - that they generally follow through with meaningful changes.


    Matters taken before tribunals can have limited application and tribunals have limited powers. A waste of time, if you want to make an impact against and encourage governments to undertake reforms.


    Rogers case was an application for judical review (administrative law) of a decision maker of a public authority. As a part of that action taken in administrative law, the Human Rights Act 1998 UK was pleaded. Thats not uncommon and you could plead breaches of any relevant statute, it just so happened to be that one on this occasion that was selected as having the most relevance. However the main action was not brought under that act - but administrative law (a branch of common law). In point of fact, at the end of the day breaches of the Human Rights Act were not even addressed by the Appellate Court:




    However the application brought in administrative law (ie seeking judicial review) succeeded.


    Again, Administrative law can produces narrow results. Not always an ideal choice, but it depends on the change you are trying to bring into effect and all changes that succeed against governments, are good changes IMO.




    The changes made will be in accordance with the incentive to do so.

    As stated previously, administrative law does not give a lot of wriggle room. So you challenge the decision of a decision maker under that area of law and the court says - ''ou made the wrong decision - go back and make the right one'' or in that case - ''your policy was irrational change it''.

    So thats fairly narrow, but I would not say that there was very little practical change.

    The decision resulted in a review and change of the Swindon NHS Primary Care Trusts policy. It made them spell out precisely who will fall into the ''exceptional circumstances'' category and therefore be eligible for funding for the drug in question. That will assist oncologists and patients in knowing whether to make an applications for access to that drug on those grounds and their chances of succeeding. With greater clarity on the part of both parties, there should be no delay in issuing the drug, which is important for cancer patients.

    Moreover, I am sure that they may not be so cavalier or sloppy in their decision making processes having been through a case at first instance and an appeal -when it comes to assessing future applicants. The ordeal of litigation for some of these organisations can result in massive shifts in their handling of matters. So whilst it may appear to have resulted in little practical change, I can tell you that this appearance will be quite deceptive.

    However, individual based actions do not nearly have the same impact on an organisation or government, in the way that a class action law suite might.



    Of course it is the prerogative of governments to do this.

    Governments make the laws and courts interpret and apply them. However, as stated previously, it does not happen often and this is a good case in point, as it has taken the UK government 17 years to get up the gumption to try. I also note that is all they are doing. It will be a long and arduous path for them, to succeed in doing so.

    Governments who try to take away and or diminish our common law rights, always meet with strong opposition. The move is never popular and most governments that try and or succeed, end up on the opposition benches at the next election, with the new governments usually getting in on a promise to restore such rights. I have seen it happen quite a few times here in Australia.





    You maintain that legal action directed at government will not be effective and would be profoundly misguided, but you are yet to explain why or put up anything I personally have found convincing in support of these claims. I would be interested to hear your views, but I am also mindful that this is taking this thread OT.
  2. Mark

    Mark Acting CEO

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    This is indeed off the topic of this thread. If somebody can propose a title for a new thread, and cite post numbers from this thread that should go into that new thread, that'll make it nice and easy for me to spin off a new thread on the legal questions.
  3. In Vitro Infidelium

    In Vitro Infidelium Guest

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    My principled objection comes not from the legal position but from a strategic view, in which my assessment is that collectively M.E/CFS affected people (at least as represented by the online discussions of the last ten years) have adopted positions about conflict with the authorities that are based on notions of justice and fairness which are grossly unpragmatic. I consider such positions to be wholly unsuited to transactions in political and legal arenas where choosing ones battles and being agile in both offence and defence is essential. Even if one can be adaptive to facilitate tactical advantage, for an identified group to force a win over a political or administrative body brings with it the risk that opportunities for future co-operation may be lost, thereby harming any strategic progress.

    If a group legal action were to be considered a valid strategic risk, and if the participants were agreed on a wholly pragmatic approach toward tactical gains, then the legal limitations come into consideration. The particular case raised by Bob is this:

    The government say that the MRC and NICE are independent bodies, and that the government can't interfere with medical and scientific decisions made by independent bodies.
    But this is a political decision, not a statement of fact. In order to change treatment and research for ME patients in the UK, I think we either have to persuade the government to change their ways, or persuade NICE and the MRC to change their ways. None of which we've been very successful with in the past.


    and

    A 'political convention' is a 'political decision' at the end of the day, even if it's a long-established political decision. And as you say, the government could take a lead and 'ask' NICE, or to put pressure on NICE to reconsider, for example, its views about which diagnostic criteria should be used for ME. But I agree that this is unlikely, and would likely be unproductive anyway. If the government decided to separate ME/CFS from idiopathic fatigue and chronic fatigue, then they could set up some sort of committee to look into this. There are many options that the government could take, if they were willing. They're just not willing.

    To identify what legal action could be possible we have to ask a number of questions, which include:

    1. Is there an identifiable harm/loss for which reparation could be sought ?

    2. Is there an identifiable failure of administration for which correction could be ordered ?

    3. If answers to either 1. or 2. are Yes, then who is the defendant ?

    Bobs proposition is that the administrative failure/source of harm is with the Government for not doing something which by convention no Government has previously done. If failure/harm can be established then the obvious route for complaint would be via Statute Law. Even if a complaint under Statute Law were to be successful there would be little prospect of achieving compensatory damages, which undermines the possibility of achieving funding for a case from commercial sources. If avenues other than Statute Law are to be followed then the failure/harm must be substantial and evident in effect on one or more individuals, moreover the point of complaint requires that failure/harm must directly result from the Government having NOT overridden expert consensus. The charge of Not having over ridden expert consensus would place an exceptional burden to prove failure/harm simply claiming that the failure to Not override isnt of itself an objective harm. (Some of these issues are dealt with directly by the Judge in Fraser & Short v NICE

    It seems to me to be improbable that the failure/harm that Bob has complained of could lead to an Administrative challenge to the Government (Secretary of State for Health) and that therefore the only frame for such a complaint is against NICE, which is where weve already been the train wreck in motion is obvious http://www.afme.org.uk/res/img/resources/Approved judgment NICE.pdf . The remaining option a claim under Common Law requires evidence of harm where the first defendants will be one or more Health Authorities, potentially enjoined with the Secretary of State for Health, and the relevant ministers in Northern Ireland, Scotland and Wales. If the harm can be established then such a case could be successful in providing restitution to the plaintives, but theres no guarantee of any administrative change taking place. As a side issue, class actions in the UK are subject to limitations not necessarily found in other countries see http://www.out-law.com/page-9344 and http://www.dac.co.uk/documents/reso...empt_to_widen_the_scope_of_collective_redress

    I shall leave all further arguments about this to others, but I really do wish that collectively we would learn to pick our battles and our enemies with a far better sense of strategic outcomes. Being right is not the relevant thing in Public Relations, in Politics or even in the Law, in these areas what is relevant is being able to advance a contestable argument which accords in some measure with the persectives of the audience and adjudicators. Heroic notions of standing up for the truth or our rights and freedoms (cue numerous Hollywood images, mostly built on lies) may be motivational, but they are not helpful when the better course of valour is retreat, or the most effective available action is a thumb in the eye of a deliberately chosen weaker opponent instead of a Queensbury rules stand up contest.

    IVI
  4. In Vitro Infidelium

    In Vitro Infidelium Guest

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    The break probably centres on ISOs post #70 - Individuals have used the judiciary to foster change upon governments unwilling to introduce the same. Therefore, a single patient group should have no trouble doing so either although it follows from Bobs #61 I do believe that the issue separating ME and Chronic Fatigue is a very fundamental one, and it goes beyond just arguing the case with the Lancet, who aren't interested in what we have to say. It involves taking the case for change to the government and government bodies. Id therefore suggest if you are going to split the thread that the new title is Using the Law to change UK Government positions on M.E/CFS.

    IVI
  5. insearchof

    insearchof Senior Member

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    Mark

    If you split the thread from Bobs post@#61 would be helpfulto new comers who wish to follow the thread of the discussion.

    I agree with IVI suggestions.

    IVI I will reply to your post after the thread split.

    Thanks.
  6. Bob

    Bob

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    I'd prefer that none of my posts were moved before my post #65. I'm happy for my post #65 to be moved.

    May I suggest that the posts onwards from, and including, IVI's post #64 are moved?
    IVI's post, #64, includes a quote from my earlier post, as an introduction, anyway.
  7. Bob

    Bob

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    BACK TO THE ORIGINAL SUBJECT...

    OK, I've found the reasoning behind White et al. comments about the PACE Trial not studying 'ME'.

    As I suspected, they weren't casual comments, but a carefully orchestrated ploy...

    It looks like it's a case of attempting to divide and conquer our community, and to isolate a section of the community, along with attempting to make us look ignorant and desperate... (So the usual sort of tactics we would expect from them)...

    This is not a brand new text, but it was published after the PACE Trial was published, and it looks like it explains their thinking...

    http://forums.phoenixrising.me/show...uot-incl.-PACE&p=174581&viewfull=1#post174581

    also here:
    http://www.facebook.com/note.php?note_id=10150175231391797&comments

    and here:
    http://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind1104D&L=CO-CURE&P=R1662&I=-3
  8. Angela Kennedy

    Angela Kennedy *****

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    Bob, you haven't even seen the full letter yet. And these threads do not explain any clever 'reasoning' on the part of the psychs. All this shows is that there are discrepancies in reasoning on their part! Discrepancies that make certain complaints about PACE stronger- as much as this seems to discomfit you!
  9. Bob

    Bob

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    Angela, I do not appreciate the way you have personalised some of this discussion in such a negative way. You have now posted a personalised, disrespectful and inaccurate comment about me, suggesting that I support the PACE Trail.

    You have totally misrepresented my position on this subject, and that is unacceptable.

    I take offense at the accusation that I am in favour of the PACE Trial, especially considering the work that I have been involved with to expose it's weaknesses.

    I do not understand why you have decided to make personal comments about me on this thread, instead of discussing the subject. I do not understand what your issue with me is. I cannot see that I have done anything to attract such personal comments.

    May I suggest that if you wish to discuss the issues, then please do, otherwise please refrain from making personal remarks about me.


    The purpose of me posting the information on this thread is so that we can gain insight into the nature of the authors' thinking, so that we can strengthen our arguments against them.

    I am not trying to dismiss the line of argument that you are taking against them in your letters, Angela. I'm doing the opposite... I am trying to understand how to strengthen our arguements against the authors.

    Apart from one small innocent casual comment that I made earlier in the thread, which was a valid opinion, but possibly misjudged, I don't know where you have got the idea that I'm against your arguments. I'm simply exploring the issues. I'm totally in favour of the arguements that Malcolm Hooper, and yourself, are using.


    I personally think it is naive to believe that these authors are not clever. If they weren't clever, then they would not have had such a total strangle-hold over ME/CFS, and the UK government, for the past couple of decades. I think we are unwise to underestimate them. I believe that they know exactly what they are doing, with these comments, and I am interested in exploring them, and gaining a deeper understanding of their position.

    Of course I agree that there are many discrepancies on their part. Like other people, I've spent enough time highlighting them on this forum. But they have always won the arguements as far as the establishment is concerned. So I believe that we have to be extra-clever with our counter-arguments, and it might be a good idea to try to stay one step ahead of them, rather than the other way around. For this purpose, I believe it is beneficial to have insight into their thinking.
  10. Bob

    Bob

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    This is the only comment/opinion (in bold) that I can think may have caused offense. But it shouldn't have done so, because I was only discussing and exploring the subject.

    I have actually misrepresented my thoughts and opinions, in the quoted post, as this hasn't been my opinion since the PACE Trial was published, and it still isn't my opinion.

    My opinion is that we should take all approaches to expose and argue against the PACE Trial.

    My questions have been about how receptive the Lancet will be to some arguements, and where the best place to make certain arguements is, but that doesn't mean that we shouldn't make all the arguements in all ways possible.

    I apologise if I've been perceived as attempting to undermine other people's work in these areas, which is the opposite of my intentions.
    My intention was to explore the issues in order to strengthen our arguements.
  11. Angela Kennedy

    Angela Kennedy *****

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    I'm not trying to be personal here at all - but I am trying to straight speak, because this situation requires it.

    What you're doing here, Bob, is raining on others' parades, by acting as if the psychiatrists' logic is unassailable and pre-planned, when the evidence demonstrates otherwise. I've tried to, rather cryptically, let you know that there are positive ramifications for my complaint (which you may or may not have read). You've been undermining that, partly it appears because you don't understand and I, understandably in the circumstances, am not letting too much out.

    I'm very glad you've apologised for your comments. Nevertheless they were potentially harmful- and it is understandable that I would be frustrated in your lack of understanding of what I'm trying to do. NOT 'miffed' in some trivial, personalised way, but really worried that my own work in this area could be sabotaged. I have my strategy in place anyway.

    Meanwhile, IVI comes on with his/her own speculations and various modes of 'you'll never win unless you collarborate' speech and personalised anti-Hooper insinuations - sorry to comply with Godwin's Law but what with your inability to keep mum and IVI's tendency towards the Lord Haw-Haw style of 'support'- it feels like WW2 all over again- I know, I wasn't there. I mean the film... (that's a joke)

    I don't know how to explain to you that the work I'm doing is important, without letting too much out in the open, in a place that Ive come to realise is not actually safe. You're not actually helping, not least because you seem in thrall to the psychs (like one of Dracula's victims- oh this gets worse, I'm comparing the psychs to Nazis AND Dracula now). For someone 'trying to strengthen our arguments- you've actually been endangering other people's work, because you're speculating and running off with the wrong ball, and frequently. Even your belief that the Lancet has to be 'receptive' to only CERTAIN arguments, is just not seeing the whole picture.

    And how 'clever' those devilishly handsome psychs are is NOT the issue here. We're talking structures of power nothing to do with their alleged charisma and cunning wisdom. It's science, and bad science, and strategies to address these. Not whether mummy establishment will listen to those clever boys and not us morons (which is how your writing has been going here- let alone ivi, who is sending us all off on a wild goose chase).

    If you could tone down the negative sounding 'help' and stop assuming that your speculations are correct and helpful- they've become a problem because they are (a) wildly speculative (b) wrong (c) really negative and demoralising - you need to stop going on about how clever you think the psychs are for one thing ( surely you understand that's the last thing this community needs, to feel the source of their oppression is somehow invincible in their logic, when they are really not?) you would be of much more help.

    Again - not trying to personalise - but this needs to be said, unfortunately.
  12. kurt

    kurt Senior Member

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    MOD - Several posts here include personal insults. This thread is on warning, please stop personal references to other posters. Everyone here has the right to their views and we do not tolerate personal attacks, no matter how carefully disguised. Please talk about issues and not forum members. There are ALWAYS cases where forum members disagree, and that is fine and to be expected, so please do not 'police' each other, but accept that there are conflicting views.

    If you have strong negative feelings about somebody's post, please take time to cool off before posting a reply, and address the topic without insulting the person you disagree with.
  13. Bob

    Bob

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  14. Bob

    Bob

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