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ME: bitterest row yet in a long saga

Discussion in 'General ME/CFS News' started by Omar88, Nov 25, 2012.

  1. Stukindawski

    Stukindawski

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    Pragmatism doesn't tend to be very intoxicating.

    It's mostly aimed avoiding this type of scenario:- (if you're sound sensitive, turn it down - if you're stray expletive sensitive, do the same)



    The SMC, or any lobby institution that positions itself as an 'authority', I have difficulty being happy about. But I also accept that it exists and have to accept what it is capable of.
    Jarod likes this.
  2. Min

    Min Senior Member

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    In the UK we have no chance of Ampligen.

    Please does anyone know of an M.E. forum where we don't have to plough through threads with long posts of pro-Wessely/Sharpe/White etc propaganda, because I am too ill to cope with it?
    Wildcat likes this.
  3. Sasha

    Sasha Fine, thank you

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    We don't now but if the FDA approves Ampligen, we'll have a very good chance of successfully pushing for it here in the UK and in other countries too. If there's an immune system drug being used and being shown to be effective, it will change perception of our illness and make it very hard to refuse it to patients elsewhere. Really, this is a big deal for all of us.
    Purple likes this.
  4. Jarod

    Jarod Senior Member

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    Hi IVI,

    According to the SMC website,they get government funding.

    Dr Esher Crawley and Simon Wessley work at the SMC. Cutting back SMC funds would do more to stop the negative press for CFS/ME, and other related illnesses than anything else as far as I'm concerned.

    Thank you.

    I'm sure a case could be made how management's selection of articles or research has been against public interests and use of taxpayer funds.

    If Fiona Fox is still involved with Marxism or communism it may be a conflict of interest, and what democracy is supposed to be all about.
  5. Firestormm

    Firestormm Guest

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    If you think that what I have written is 'pro' any of those names you are mistaken, Min. If you do not like what is written, what you feel you must 'tolerate', then report the offending comment.

    Ampligen will stand a better chance in the UK - if it gets past the FDA later this month. If anyone is taking bets, then I would have to say, I bet that it will not result in approval. But I'd be happy to be proved wrong.

    Hemispherex will be asked to produce more and better clinical evidence. If some want to interpret this further delay - should it indeed happen - as in some way "reflective of the prevalent opinions and power in the ME-world" i.e. your defined 'psych-social lobby' - then fine. But you'd be wrong. Just saying. Does that make me a 'bad boy' of the 'psycho-social camp'? :)

    You know, if you read my last post and what it contained from Prof Hooper you might find some comfort. Then again you might not. As ever these debates all boil down to opinion, semantics and interpretation. There is unfortunately - and I mean that - a great absence of evidence for anything in the ME-world. You think I don't want some answers, Min? After 15 years? You'd be wrong to assume I didn't.

    Though I have to say, as above, some of what Hooper (or whoever did write this latest piece), is worthy of note. Again it depends on your perspective and interpretation. Hence, debate. I like to debate, Min, what can I say? Here I am basically stuck, trying to do what you no doubt are trying to do, coping as best I can. If we disagree over something then fine, call me on it. I am a quite reasonable and rational person - though some might disagree :)

    Extracts from Hooper's latest:

    You see here (bolded) I think that 'he' perhaps intentionally misses the point. To say this he is endorsing what he later believes to have been the case, that of an impasse between the 'psychosocial model supporters' and the 'biomedical' white knights. But then I've said this above. Interpretation. Opinion. Whatever...

    Indeed. Now is that not what I have been saying? Is that not also a concern that I have shared? Whatever... It is nice to finally see an acknowledgement from this 'side' and source of the reality of the situation. That there were indeed 'wholly unacceptable actions of a few people'. One might say, 'Finally' and 'Thank the gods' that this at least has been forthcoming, of course you might not - you might want to see 'evidence' of these actions? I do not need them to know that they happened and the effect they have had: namely all the negative 'exposure' this has led to in the press and elsewhere in recent times.

    If I was to say that I also agree these 'unacceptable actions' have 'undermined the efforts of those who...' would you also agree? If I was to suggest that he could have gone further and said that these actions have undermined all scientific engagement and involvement regardless of the opinions being advanced or expressed - would you agree? Perhaps you wouldn't.

    Anyway... I'm in need of a rest. Been struggling with on-line ordering of popular toys for the munchkins. What a nightmare. And I thought shopping on line was meant to be easier! :)

    Oh and David? I did indeed begin a riposte earlier today, but got sidelined - as I do - by a need to rest and then a need to shop. Well, not so much a need to shop, more of a.... oh hell - you'll have to take a raincheck :)
    Holmsey likes this.
  6. Jarod

    Jarod Senior Member

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    Probably a political forum section would be a good idea.
    Min likes this.
  7. Enid

    Enid Senior Member

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    Thanks for the link Firestormm (at 85) and Prof Hooper's response (meactionuk). Superb as always. Will it be published do you know ?
  8. In Vitro Infidelium

    In Vitro Infidelium Guest

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    Er ... yes. Which is goes with what I wrote: "any public service would be entitled to enter into a contract with SMC for provision of services or to support some specific initiative. Government Agencies = public service.
    I asked above, what the objective for attacking SMC funding would be. If your argument is so that NHS employees would be inhibited from contributing their free time to a Registered Charity, then you have just advanced a proposal that is almost as harmful as proposing physical violence as a campaign strategy. I understand that you may not quite get the UK culture - but what you are suggesting is credibility suicide. The SMC has numerous supporters, any complaint against it is going offend many people in UK science and medicine, not to mention the media and the Voluntary (Charity) Sector.
    I don't have the energy to give you a full presentation of the freedom that is accorded under UK Charity Law, but what you suggest would have no bearing on complaint process. The term one would have to address is not 'public interest' but 'public benefit' - challenging that with legal force is onerous.

    MCCarthyism never really took hold in the UK - people are allowed to be employed by organisations, and to start Charities and Businesses - without the State interfering or questioning the motives of the organisation, charities and businesses because of the beliefs of their employees or founders. You have very, very strange idea about democracy. Frankly associating such ideas with M.E/CFS advocacy would be as wlecome as proposing treatment via child sacrifice.

    IVI
  9. Min

    Min Senior Member

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    Firestorm said
    I'm sorry but I don't read much of your many lengthy posts Firestorm as I can't make any sense at all of them, As I said, I am very ill.

    It is the pro Wessely etc members arguing here that is difficult - the forum never used to be like this.
    Wildcat likes this.
  10. Jarod

    Jarod Senior Member

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    Hey IVI,

    I hope your comments reflect on only you.
    Wildcat likes this.
  11. alex3619

    alex3619 Senior Member

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    I like what Hooper wrote on on the second.

    It should never be forgotten that potentially many millions of patients are angry for a reason. The doctrine we are angry with is not serving our interests. It doesn't matter how many pro-doctrine supporters sign letters to a newspaper, the facts are not going to change, the experiences of patients are not going to change, though it might be hoped that over time we become more sophisticated in how we respond. Its a learning experience. It wasn't really till the late 90s that advocacy really started to become something, though thats just my opinion. That is about when people began to wake up to the issue in numbers. We are not only learning we are also sick to very sick.

    This is a fight over the legitimacy of debate over science couched in political terms. It involves the creation of centralized authoritarian sources that tell you what science is. It requires a political strategy to combat it, not just a scientific one. Just in case there is any doubt, yes I meant to use "combat". We are fighting for survival, for basic human rights and dignity, for an end to suffering and abuse, and for transparency in science.

    If we accept the pro-doctrine claims, then science is a closed club, only legitimate members can comment, and in an insular field like CBT/GET that means only pro-CBT/GET scientists can comment. Everyone else is harassing them! The abuse must end!

    Bye, Alex
    Jarod, allyb, Valentijn and 2 others like this.
  12. Esther12

    Esther12 Senior Member

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    I think it's good to have as wide a range as views as is possible (although I don't think that I've seen any pro-Wessely arguments). Unfortunately I've come down with a cold, so haven't been able to read much of the stuff being posted over the last week. When I'm not up to reading through things, I just skip them.
    DaiWelsh likes this.
  13. Peter Kemp

    Peter Kemp

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    Wessely is also the Science Media Centre 'expert' on M.E. and CFS. It was their press-conference held for the publication of the PACE Trial in the Lancet that led to inaccurate claims in UK national newspapers.
    Sean, allyb, ukxmrv and 2 others like this.
  14. taniaaust1

    taniaaust1 Senior Member

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    Min.. I suggest to just block any members that you think are pro so you dont have their posts affecting you so much. Thou I understand that is hard as others will often quote the parts of the posts which upset people so one ends up seeing them anyway.

    Best probably just to avoid any threads completely which is likely to be political eg by the title of this one one can see it would probably contain debate.. and concentrate on other areas of the forums.
  15. Firestormm

    Firestormm Guest

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    Jarod, it isn't usually my practice to comment on behalf of others but I can assure you that IVI is a patient and has been one for a considerable length of time. Of course IVI could have been lying - repeatedly and for many years - about this - but then again so could I and you and every one else here who uses an avatar.

    You know I spent yesterday evening expressing my disdain on another forum for people who had made a similar assumption because I wasn't prepared to 'follow the party line' based on the 'evidence' that had been advanced. Simply because you and others may not like what I or anyone else says about something that is deemed essential to believe in, to in some way validate one's claim to being a true sufferer of ME, does not and should not lead you to doubt automatically that I or they are not holding the same diagnosis as you.

    On the other hand I personally have never claimed to be an 'advocate'. I think the term is overused and misused and rarely afforded enough thought by those who see their actions as in some way valid and representative of others. There are rather too many assumptions being made by people who appear to feel that being 'advocates' affords what they say some greater legitimacy and protection - when it doesn't.

    Having said all that, you have yourself a good day :)
    DaiWelsh likes this.
  16. user9876

    user9876 Senior Member

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    Isn't this what the SMC is all about. Creating a source for disemination but the great unwashed public shouldn't question and certainly shouldn't take part in the scientific debate. In the past it was never an issue as the public couldn't easily get hold of the scientific papers, now they can.

    One of the things I find uncomfortable about the latest bad science debates is they look to blame big pharma for bad methodology because it couldn't possibly be all the academic scientists. Its a club looking for someone else to blame for their failures (phama might fund trials but academics and universities often do the work and help in covering up or legitimising results). I wonder if there is some of this attitude behind the lack of critisism and acceptance of the PACE trial - that is there is no one else to blame for the corrupted process.
    alex3619 likes this.
  17. Stukindawski

    Stukindawski

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    Having an opinion 'online' and in 'public' seems to have earned the perception of advocacy. Those who reply to ME articles often do so in part based on the belief that they are advocating, or representing the issues of ME patients.

    The mere act of influencing opinion could be seen is advocacy. The semantics of the words advocate and advocacy are probably both varied and complex, with the latter being subject to additional colloquial meanings.

    If one has the desire to address another's opinion, in the very least one is advocating on their own behalf.

    Perhaps it is better to distinguish between organised advocacy and ad-hoc advocacy.

    From my perspective, the opinions of others have brought about changes in my behaviour and encouraged me towards activity (such as writing, charity voting, letter sending). Even your own Firestormm ;)

    The phrase: "the pen is mightier than the sword", might be well worn, but it is no less true.

    I would simply say to people that are uncomfortable with the opinions of others (and if I can infer from that, the influence that they might have) - you need to get comfortable. Cognitive dissonance doesn't help anyone, you have to learn to look the beast in the eye and not fear it. Also remember that arguments are not won and lost in the moment. Just because there is not a good response today, it does not mean there might not be a good one tomorrow. It is often better to spend time considering an opinion that you're uncomfortable with, and attempt to address it once the initial emotion towards it has subsided.

    In my experience sometimes it can take several close readings to truly grasp what a person actually means as well.
    DaiWelsh, Jarod and Firestormm like this.
  18. Firestormm

    Firestormm Guest

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    Well you can blow me over with a feather. I 'liked' one of Stu's comments. Damn that Christmas Fairy wreaking goodwill to all and all that stuff :p :D
  19. alex3619

    alex3619 Senior Member

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    Stukindawski, the blog after the one I will be reseasing shortly has a tentative title Pen and Sword. Information is power. Diplomacy and politics are means to exercise power other than war and violence. That blog is in part on the doctrine of separation of powers, and how it is failing us.
  20. Valentijn

    Valentijn Activity Level: 3

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    I prefer to ignore the status (or claimed status) of someone making controversial statements, and instead to focus on the content of those statements. For example, the administrator of the "fatigue" (burnout) center I was going to insisted that he has ME and that going to an orthostatic hypotension clinic for diagnosis would be of no use to me, because he claimed to have done the same thing without any useful results.

    Instead of focusing on his status as a dodgy guy trying to make money by pretending that "ME = fatigue = burnout", it was quite easy to evaluate what he was saying. And as there has been reputable research showing the vast majority of ME patients have OI, it was easy to value that research over his personal experience, regardless of whether or not he actually is an ME patient running a clinic based on the psychosomatic theory of ME.

    Similarly, IVI's beliefs regarding the essential place of psychiatry in the routine care of ME is also simple to reject, without reading anything nefarious into his strongly pro-psychiatry stance and seeming expertise in the area of psychiatry: The evidence in favor of psychiatric dysfunction in ME is somewhere between weak and non-existent, while the evidence in favor of purely physiological causation and perpetuation of symptoms is extensive and generally of much better quality.

    The same goes for much of what IVI says regarding advocacy. The general message from him seems to be that we should be quiet while the professionals deal with it - yet the history of medical advocacy for ME and other diseases suggests that a change in attitude and more serious research for a neglected disease comes after noisy rebellion, not soft-spoken and polite disagreement.

    So I think I'd give more credence to the extensive objective evidence available, instead of one person's subjective opinions, regardless of that person's status.
    allyb and alex3619 like this.

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