1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Time Change Equals Jet Lag, ME/CFS Style
Jody Smith marvels at how much difference one hour can make to those with ME/CFS, as much of the world has endured The Time Change in recent weeks ...
Discuss the article on the Forums.

Hooper's initial response to White re PACE Trial

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

  1. Bob

    Bob

    Messages:
    6,256
    Likes:
    6,527
    England, UK
    I understand and agree with your points Justin.

    But this is a discussion forum, where I thought that issues were supposed to be discussed and explored, before arguments and cases were finalised.

    I don't believe for a minute that White's comment was casual, and if it was then he will probably withdraw it. What's important is the evidence in the paper, not a single comment of White's which he can withdraw at any time. If he sticks by his comments, and we can use them in our favour, then that will be great news. I look forward to him campaigning for NICE to separate ME from idiopathic fatigue and dodgy CFS definitions.

    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.

    There is a strong case to be made against the study and the authors, that they are endangering the health of ME patients by saying that CBT & GET are safe and effective, and it's a case that definitely needs to be made. I'm very grateful for the work that Hooper is doing, and Angela is doing on this.
  2. Angela Kennedy

    Angela Kennedy *****

    Messages:
    1,026
    Likes:
    149
    Essex, UK
    Thank you Bob for your kind comments.

    Again though. Peter White's comment will come back to haunt him. It IS highly significant, and just because you don't understand it's importance, and it hasn't been 'published', doesn't matter. You do seem rather pre-occupied on telling us all how 'unimportant' you think White's comments are in this context and that they can't be used! They are of VITAL importance. I suspect when the full letter comes out- there are going to be more gems.
  3. Bob

    Bob

    Messages:
    6,256
    Likes:
    6,527
    England, UK
    Angela, I'm discussing and exploring the subject. It is a discussion forum after all.

    If someone can tell me why White's comments are significant and how his comments can be used (taking into account my previous comments), then I will gladly take that on board and use the information constructively.

    What I say in this discussion thread is not going to have any baring on the bigger picture.
  4. In Vitro Infidelium

    In Vitro Infidelium Guest

    Messages:
    646
    Likes:
    280
    The role of Government in such a change is highly limited, in fact probably non existent. A recent question by Margaret Marr produced clear exposition of the established separation between the policy role of Government and the clinical independence of health professionals.

    Fred Curzon (for the Government)
    Clinicians are responsible, within their area of competence, for diagnosing medical conditions and for advising patients on the treatment options available. They are expected to take account of best professional practice, guidance from the National Institute for Health and Clinical Excellence and authoritative advice from other relevant bodies, including the World Health Organisation (WHO).
    The department has no obligation, or powers, to enforce recognition of WHOs classification throughout government.


    IVI
  5. Bob

    Bob

    Messages:
    6,256
    Likes:
    6,527
    England, UK
    Yes, unfortunately the government are not interested in taking a lead in this subject.
    But that isn't because they can't take a lead, it's because they won't take a lead.

    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.

    NHS clinicians closely follow NICE's guidelines, and NICE set out guidelines for how ME/CFS should be diagnosed and treated in this country.
    For example, NICE recommends GET and CBT as treatments for what they call CFS/ME, and so doctors prescribe it.
    NICE say that there are no objective tests for ME, so doctors don't provide objective diagnostic tests.
    NICE recommends that the CCC are not used for diagnosis, and so doctors do not use those criteria.
  6. In Vitro Infidelium

    In Vitro Infidelium Guest

    Messages:
    646
    Likes:
    280
    Rather than a 'political decision', it is a 'political convention' - basically it's an agreed position by all the main Westminster Parties. There has been considerable concern in the past when politicians have sought to overstep their authority - the Prison Service and NHS have both been the focus of such concerns - and it needs to be remembered that the UK system of Government is based on a permanent, politically neutral Civil Service whose existence is dependent upon administrative independence, similar to the function of the Judiciary. I can't see much chance of changing a system that's got a 150 year track record simply for the interests of a single patient group - no matter how deserving we are - any time soon.

    Engaging with Government is a process of talking the Government's language - in the UK we essentially have time limited absolute monarchy masquerading as Cabinet Goverment - so it's question of framing everything in the 'deliberation de jour' if one wants to be heared. It is feasible that the present Government could be encouraged to ask NICE to 'look at' recommendations on a particular illness, but the 'ecouragement' would very likely need to be framed in a 'cost efficiency' presentation. As it happens that is where CBT/GET is vulnerable, though any broader issues are unlikely to be considered by Government or Civil Servants without some compelling medical data supported by a number of notable clinicians, I'm afraid Mal Hooper is not in that league.

    IVI
  7. Bob

    Bob

    Messages:
    6,256
    Likes:
    6,527
    England, UK
    The PACE Trial results give us many arguements to take to NICE the next time that they review the CFS/ME guidelines - cost effectiveness being one of them.
    But also the minimal results achieved, the lack of curative action, and also the issues surrounding selection criteria come into play, along with the FINE Trial results.

    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.
  8. Angela Kennedy

    Angela Kennedy *****

    Messages:
    1,026
    Likes:
    149
    Essex, UK
    @ IVI. Thanks for your musings and speculations. You're off on the wrong track, but nevertheless it is useful to see your reasoning.
  9. Esther12

    Esther12 Senior Member

    Messages:
    4,872
    Likes:
    4,167
    I expect that the government will want to speak a language that absolves them of all responsibility for a complicated, heated, and uncertain topic. Much better for them to presume that these matter can be decided objectively by independent experts.

    And that's where it goes wrong.

    I think we do need to challenge the presumptions that underpin politician's approach to CFS - because these assumptions will lead to problems when there is not good objective evidence for how to proceed, or there are expert's whose approaches are influenced by their own biases or emotional commitments.

    I just don't know how we can effectively do this.
  10. insearchof

    insearchof Senior Member

    Messages:
    598
    Likes:
    2
    I agree with Bob's last comments to IVI. A political convention, simply represents a long standing political decision.

    I agree with your views as well Esther.

    To address your last statement Esther, I wish to highlight IVI's remarks.

    IVI is correct about the West Minister system and the doctrine of seperation of powers on which it is based. IVI rightly points out that the Judicial arm is a part thereof, right before making this statement:

    That is precisely what the Judicial arm is for.

    That is how effective change is made when political conventions fail.

    The West Minister system of government was intentionally structured this way, to provide this measure and to ensure the necessary checks and balances are present. It is the very rationale for the structure of the system.

    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.
  11. Bob

    Bob

    Messages:
    6,256
    Likes:
    6,527
    England, UK
    A legal challenge would be one way to go about it, but it would be an extremely complex, expensive and drawn out process, without guarantee of success.
    We did have a legal challenge to the NICE guidelines, by two patients, a year or two ago, but it got thrown out of court, basically due to a lack of resources on the part of the patients, and a very unhelpful and unsympathetic judge.
    The establishment-friendly judge basically decided that the patients were time wasters without properly considering the evidence.
  12. Esther12

    Esther12 Senior Member

    Messages:
    4,872
    Likes:
    4,167
    I don't know anything about the last judicial attempt (and personally I think the NICE guidelines weren't too bad considering our starting point, and would have helped avoid the worst parts of my own medical care), but, from what I know of British judicial culture, I think that would be a difficult approach for us.

    Maybe we'd be able to find a sympathetic journalist, and provide them with resources for worthwhile stories? The trouble is, it's all so complicated that it's tricky to come up with something that can be written up in a page.
  13. Bob

    Bob

    Messages:
    6,256
    Likes:
    6,527
    England, UK
    Yes, we don't have a single sympathetic, or informed, national journalist in the UK, do we?

    It would be nice to find one.
  14. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

    Messages:
    2,486
    Likes:
    1,136
    NYC (& RI)
    Interesting discussion. I didn't know, for example, that the civil service agencies are supposed to be independent minded. It's not like that in the US (for the most part). Thanks, guys.
  15. In Vitro Infidelium

    In Vitro Infidelium Guest

    Messages:
    646
    Likes:
    280
    It is rather an exaggeration to say about any aspect of how Government functions in the UK that it was intentionally structured, the whole thing is a mass of historical conventions that have been tweaked to sort of work, sort of suit the ruling elite, sort of not make the populace feel disenfranchised, sort of make organisational sense . There is no written constitution, no explicit statement of where the power of the Judiciary applies or where the power of Government is limited. The system has strengths, it is robust although that makes it difficult to change the many democratic deficits that exist within it. For all practical purposes for any group outside of the system the only option is to deal with the system as it is that doesnt mean that the system is fair, or that change is warranted, its just that it simply an impractical stance for a group that needs a political solution to base that solution on a change to the system.

    Firstly the Courts in the UK are very unwilling to accept cases based on group opposition to policy positions, a process which is seen as appropriate to the political and not the Legal arena. Certainly policy change has been required of the UK Government as a result of individuals and groups of individuals seeking the upholding of their individual rights. However what tends to happen in these cases is that Governments simply see the Court ruling as having identified a legal loophole and subsequently bring in new legislation to make the Law read as they want it to read, not as the Courts previously interpreted it. As has been mentioned a legal case was attempted re: the NICE CFS/M.E Guidelines, frankly that case was doomed from the outset and stands as fine example of how to lose in an English Court.

    One of the noticeable things about M.E/CFS patient groups is how poorly they make alliances with, and how poorly they learn from, other interest groups, something which in dealing with political and legal processes is essential if one is to have any success.

    "Independent minded" is probably an overstatement. The UK Civil Service is permanent at all levels and must therefore be politically neutral - at a UK General Election, within 12 hours of the result being known a Prime Minister with diametrically oposite views to the previous incumbent can be leading the Government, all the Senior Civil Servants have to be as ready to serve that Prime Minister as they were the outgoing one. This actually makes Civil Servants very powerful, albeit in rather subtle ways. The important thing for any advocacy group is to understand the system one is dealing with, and if the discussion is cross National boundaries, then it's essential to be clear about what works where - one can't simply transfer a campaign style from the US to the UK or vice versa and expect it to work.

    IVI
  16. insearchof

    insearchof Senior Member

    Messages:
    598
    Likes:
    2
    Hi IVI

    Thanks for the lesson on the West Minister model, but some of what you are saying seems to be directly at odds from what I studied -though it was many years ago now

    IVI from my memory, what you are saying is only partly correct. The development of the other arms of government came about to provide balance and checks and balances. The separation of powers doctrine enshrines this notion.

    No need to acquaint me on how the legal system operates in the UK IVI, I am well versed on it.

    This statement is, to put it politely not only totally wrong, but is likely to mislead a lot of people not familiar with the legal systems not only in the Uk, but in other commonwealth countries.

    Unless a cases is vexatious or without just cause, the courts do not turn litigants away, irrespective of whether the matter could be processed in a political manner. There is no power in executive judicial staff, to determine that a claim would be better dealt with via an executive arm of government on the basis of existing conventions.

    Aside from frivolous or vexatious claims, it is every citizens right to initiate action and have it be heard in court where the plaintiff can establish BEFORE THE COURT that they have a valid complaint. This is found and framed in a statement of claim. If the applicant/plaintiffs lawyer fails to set this out successfully, it can be challenged by theother side , but it is not done by executive judicial staff it must go before the court as it is acknowledged that all persons have legal rights to be determined by our courts not executive arms of the judiciary or government.

    As for legal loopholes they generally relate to the interpretation of statute. Statue is only one part of the law IVI. There are two additional bodies of law that run alongside statutory law: common law and the law of equity. Remedies under statutory, common and equitable law can all be very different indeed. Not all litigants will be able to frame a case and or seek remedies in all areas of the law, but most times, there is sufficient scope to be able to do so under one.

    Common law and the law of equity as applied in the UK, does not have loopholes, it is built up on the basis of case law and precedent which must be applied and is binding upon lower courts in the judicial heirarchy. Where precedent exists on a point of law in respect to a governmental failure for example, then the courts are bound to apply it. If they fail to do so, the appellate process allows higher courts to redress the issue and ensure that the precedent is applied, in order to ensure consistency, certainty and fairness in decision making and the application of laws.

    As for the government then introducing legislation to address an unsuitable outcome by the courts, this does not happen as often as you are suggesting. If if did - it would only be paying lip service to what the doctrine of the seperation of powers represents and the public would not tolerate this. Moreover, if it were happening with the regularity you suggest, parliament would be swamped and unable to pass new legislation and money bills etc

    If I recall that was a challenge under the principles of administrative law,and succeeding under those laws can sometimes be hard.

    As to why that was doomed at the outset I have no idea.

    However, I will say this. There are lawyers and there are lawyers. There are those that specialize in various areas of law in the UK, just as there are doctors that specialize. Who you choose, and how your legal action is framed will also determine your success.

    There are some steps you can take to lesson the risk of an unsuccessful outcome. One thing that you cannot change, as Bob rightly points out is what Judge you get at trial.

    People should also consider that one of the reasons the NICE case may have failed, may have been in part due to the fact that it was framed and tackled on the basis of administrative law. That is not to say that this was the wrong approach or the wrong cause of action. From the little I read, it appeared at the time to be an appropriate cause of action. As stated, sometimes that area of the law does not leave a lot of wiggle room, but it may have been deemed the best option available at that time.

    It may well have failed for no other reason than the Judge did not see it in the same way the applicant did. A lack of funds would also mean that an appeal may have been out of the question. However, my point is, that this failed attempt, should not deter people from considering other possible causes of action, other defendants and or other legal attempts.

    As for expense, many of the larger plaintiff focused law firms in Australia have a number of litigation investors (for want of a better word) who will fund the litigation where an assessment of a successful outcomes is considered reasonably good. I would have thought some thing similar existed in the UK.
  17. In Vitro Infidelium

    In Vitro Infidelium Guest

    Messages:
    646
    Likes:
    280
    Well I certainly hope no-one who is seriously considering legal action is going to take advice from an Internet forum. But I can't see how what I had written could suggest that the Judiciary would dismiss cases in terms of "go see your MP, this isn't a mattr of Law". The relevant point is that which you identify - it's a matter of Statute - as I also wrote "Certainly policy change has been required of the UK Government as a result of individuals and groups of individuals seeking the upholding of their individual rights." which is precisely where there are non Statute based remedies, some of the problems are illustrated by this case High Court refuses charity permission to bring JR over Supporting People cuts The question of legal action as it relates to this thread was raised by you as a possibility of compelling Government to take action - it isn't obvious how outside of Statute any legal action could be pursued that would compel the UK Government to break with the convention of Parliament that the Government does not take a roll in defining clinical issues. The issues are not those of achieving remedy for an individual or group of individuals, it is about how Government and Parliament operates.

    The Government doesn't lose that often, so the amount of 'adjusting' legislation that's needed isn't huge. In legislative areas where there have been challenges in the past, there has been increasing willingness on the part of all UK Governments of the last 30 years to move contentious areas from the face of Parliamentary Bills to a provision for Order in Council allowing Ministers change legislation without the bother of having to appease Parliament.

    Litigation Funding is not as yet well established but even if were it is generally only available in cases where remedy involves financial reparation - a case based on getting Parliament or Government to operate differently is hardly likely to yield significant compensatory damages, although of course the winning side would likely be awarded costs.

    IVI
  18. insearchof

    insearchof Senior Member

    Messages:
    598
    Likes:
    2
    Hi IVI


    I do not believe anyone here would be that niave IVI. However, what you wrote certainly could have conveyed the very notion that you now seem so keen on tap dancing away from and deterred some people in the UK, from giving consideration to possible further legal redress and remedies...... as another strategy in this sad and sorry saga.





    I agree with you there. It would not necessarily be ''obvious'' to a person with out the legal knowledge.

    Governments also, must abide by both directions and decisions of the court. An injunction directing a government to do x y or z, is often a very effective legal remedy, I understand.




    ''The government does not loose that often'' - is a line the government would trott out and or would like you to believe. Lets not forget all the out of court settlements with non disclosure clauses shall we?

    I like the way how you start with - ''there is no point taking legal action because the government will legislate back to a position it wants'' - to: ''oh they do not do it all that often - so no big deal''.


    As for statute IVI. I think I made that pretty clear that the answer lies in common law and equity .


    As for costs - litigation funding might not be 'well established'' but it appears to exist in the UK.

    Dont know about your assertion as to its limited availability. Something for those in the UK who are keen to look into this matter further, might be interested in taking up.

    But kudos to you, for trying to put this idea to bed.
  19. insearchof

    insearchof Senior Member

    Messages:
    598
    Likes:
    2
    Hi Bob

    I would say, expensive - yes (but a litigation investor would take the edge off this immediately if available in the UK), drawn out - possibly, but not certainly - without guarantee of success- yes - but there are no guaranteed outcomes in life - only death and taxes, as they say.
  20. In Vitro Infidelium

    In Vitro Infidelium Guest

    Messages:
    646
    Likes:
    280
    Your concern over my intention is I think misplaced, people reading what Ive written can make of it what they will, if it makes sense and its relevant to their own thinking then maybe theyll seek further confirmation, otherwise what Ive written will be dismissed or argued against - as you have done.

    For what its worth, my opinion is that pursuing legal action to attempt to change the way the UK Parliament and/or Government operates, for the specific interest of a single patient group, would be profoundly misguided. However that has nothing to do with potential actions that are focussed on the interests of individuals. An excellent example of what can be achieved is the case pursued by Eric Mallinson, supported by the CPAG (Mallinson v. Secretary of State) which had the effect of securing DLA payments for a much broader range of disabled people see http://www.actionforblindpeople.org...oads/mallinson-house-of-lords-ruling-2006.pdf and http://www.dwp.gov.uk/commdecs/ - drop down boxes Decisions in series A and R(A) 3/94. That case followed the Tribunal process rather than being heard in the Civil Court and was therefore of very limited scope, nevertheless it demonstrates how the Judicial process, particularly in the higher Courts (the Lords is now replaced by the Supreme Court ) approaches matters of Law in relation to the decisions of Parliament (Statute Law) when the Government prefers a different interpretation of Statute. A very different case was that of Anne Marie Rogers (R v Swindon NHS Primary Care Trust [2006] EWCA Civ 392) who brought an action based on the Human Rights Act. Although Anne Rogers won and despite a great deal of hyperbole in the media, there was very little practical change in the way the NHS operated (http://www.ethics-network.org.uk/commentaries/buying-life-the-herceptin-case-in-the-court-of-appeal ) as a result of that win.

    The Mallinson gains having been of benefit to several million disabled and chronically ill people for the last 17 years are now under threat because the Government is intent upon introducing the kind of restrictions that the Mallinson judgement removed a loop hole is being closed, albeit by the Government of the day changing the playing field. That individuals (Anne Rogers) can achieve beneficial outcomes in respect of their own health status via legal actions, is not in doubt, but such actions are directed at public services and the administration of those services, and not at Government or the Law, they therefore have little momentum to effect change either in the process of Government or the administration of the Law.

    IVI

See more popular forum discussions.

Share This Page