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Negative publicity on PWME - the motive?

Discussion in 'General ME/CFS News' started by currer, Sep 27, 2012.

  1. PhoenixDown

    PhoenixDown Senior Member

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    Indeed, it's quite difficult to prove somebody's intent, but quite easy to prove somebody's stupidity or irresponsible claims.
     
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  2. GhostGum

    GhostGum Senior Member

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    This is such a good point, endlessly making accusations/speculations about motives is basically trying to fight fire with fire which ultimately proves nothing and is emotionally very taxing. I think people can constantly feel like they are at war, when that new warped article comes out there is a real need to spray your thoughts/disgust over a comment section, assume the writer is compromised and as Stukindawski points out make some vague references to OI, nk cells, Rituximab ect. and the thousands of studies.

    People need to be much more patient and concise in their responses or even just leave it to those who they know will do a much better job anyway.

    Maybe we should have PR team, there is such great and informed minds on this site, they should get together and come up with something; would even hiring a PR firm to help/give advice be such a ridiculous idea. Stukindawski's idea of putting together a concise and condensed set of material to link to or give/refer to journalists referring to specific issues, research, subject matter and expert opinion/quotes is another great idea.
     
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  3. alex3619

    alex3619 Senior Member

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    Some time ago I put forward the idea of a global neuroimmune media centre. My current series of blogs is leading up to developing that idea. Bye, Alex
     
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  4. biophile

    biophile Places I'd rather be.

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    My own "knee-jerk reaction" to anything sounding like a "conspiracy theory" is that COIs can justifiably encourage a degree of suspicion, and dodgy practices are occurring and exposed all the time, but specific details are often not confirmed or can get distorted as in the "telephone game" (unintentionally or otherwise), so hard evidence is needed before committing to details. As alex3619 touched upon, it is better to present verifiable facts rather than speculate about connections and motives which may or may not exist.

    Unfortunately I think that the waters have been too poisoned, to the point where merely mentioning anything related to potential bias is going to be taken as a feverish conspiracy theory. However, I also think it would be naive to portray the insurance industry as a collection of companies whose main objective is caring for patients. Others may say that it would be naive to give these companies any benefit of the doubt at all. On the other hand, it is also unsurprising that insurance companies do not want to pay out money for illnesses which they may be genuinely uncertain about.
     
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  5. Firestormm

    Firestormm Guest

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    Another source for the media is of course the Press Association. I don't know the process for news dissemination, whether for example those wishing to announce contact the PA and they release - but it would seem reasonable to assume that if the disseminating source makes a mistake then those in the media are as unlikely to check as they would with something from the science media centre. Similarly checking would be deemed unnecessary I suspect - for an announcement as opposed to an in-depth feature - if you are including quotes or reporting details from a source that is attributed.

    However, not all media outlets necessarily report their source verbatum. And headlines I would suggest are most likey to get re-tweaked for reasons that seem to include sensationalism. Take the recent XMRV announcement. Now, the Press Association in this instance carried the headline:

    http://www.google.com/hostednews/uk...Pu32PbUUbr8_dkE1g?docId=N0221761347888241621A

    Compare that to The Daily Mail (and other snoozepapers):


    http://www.dailymail.co.uk/health/article-2204765/Viruses-blame-ME-Study-rules-old-theory-all.html

    Actually, it is rather interesting because when I received the alert from what I remember being the Press Association I am certain that they carried a headline: 'Viruses 'not linked' to CFS' Perhaps they went back and corrected it - or I am remembering incorrectly.

    Anyway, this was a source of some concern for some patients (the Daily Mail version) but it is an example of sensationalism and/or simply reporting verbatim the original headline they (and many others) were provided with.

    Next. I think we have to give some regard to 'time' and 'interest'. As I mentioned above - unless a media source is looking to write a feature article the time and effort they are likely to put into an announcement is minor I would suggest and even less so for something on the internet (that can be altered when commentators point to glaring anomalies) - indeed we are seeing this quite frequently.

    Finally, (lest I bore the pants off of you all) I wanted to return briefly to generalisations and opinion. If an article is reporting a scientific study, and there is an inconsistency - something that one can challenge with a direct quote from the paper - then fine; but if it is the interpretation of the paper (or the paper itself) that an individual objects to - then one is on rather shakier ground: opinion vs. opinion.

    Also just wanted to underscore a previous point above. In the Pemberton comments. I couldn't help but notice the 'usual' ploy of claiming the number of paper published as some sort of 'evidence' that our condition was 'real'. The rather prolific and somewhat renowned source of this latest example cited '8,000' from memory - which is something of a jump from what I recall as being similarly cited as '3,000' only last year.

    Now I am sure that she would claim to have far more awareness of these 'facts' that I could possibly dream of but the point is better made above. And anyway, the vast majority of those '8,000' (assuming there are that many - which I doubt) would I suspect be 'psychological' or certainly regarded as 'damning' and 'wrong' by some in the 'community' and therefore not really something that could support this argument.
     
  6. biophile

    biophile Places I'd rather be.

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    My rhetorical question for the day, playing on the claim that patients dismiss psycho>somatic explanations for ME/CFS because they fear the stigma of mental illness as not real to society:

    Do established proponents of psycho>somatic explanations for ME/CFS dismiss criticism because they fear the stigma of failure, as society tends to view being wrong as indicating incompetence?
     
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  7. currer

    currer Senior Member

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    The danger of looking for motives in a situation like ours is that given the incompetence of government (as a rule) there is a danger of providing motives for the other side that they did not know they needed.

    We have greater motivation to try to understand our situation in depth.
    Probably in government there has been no such effort. They may not have any other reason for maintaining their policy on ME other that it having always been so.

    Convenience and a reluctance to change?

    And yet....?
     
  8. currer

    currer Senior Member

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    ME is repeatedly brought up in parliamentary questions and reports.

    So the DOH is aware there is a political problem around this illness. I heard that no other illness is discussed in parliament in the way ours is.
    Individual illnesses are the province of the NHS and do not normally merit parliamentary discussion.
    Health policy, yes, but not an individual disease.

    So there is something very unusual about our case.
     
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  9. Jarod

    Jarod Senior Member

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    It seems to me there are two issues. The first issue is how to officially respond to the media and medical extremists who create this public relations mess for us. It probably more effective if they are responded to factually, and with references in a rational manner if possible.

    The second issue is if some people(not everybody) should casually pursue the why for the sanity, satisfaction, spirituality, and safety of the patient community and mankind.

    The root cause. The why.

    The why especially matters if powerful people have been breaking the law, and committing crimes against humanity. For instance, wouldn't it matter if we are sick resulting from a bioweapon or vaccine stolen and released by some extremist working at Fort Detrick? Wouldn't it matter if that extremist wears a suit and tie, and is still working in government and plotting some other bizarre terrorist attack? edit: those are extreme examples, but the why relates more to the psychiatry extremists and media extremists.

    Might sound far fetched to some, but it has happened right?

    Did the truth matter when it came to Bayer releasing the HIV infected drugs to Japan, France, Spain, and other countries knowing the drugs were contaminated?

    The Tuskigee experiment is also good example of terrible crimes against people.

    I think the conspiracy theory non-sense is "shock therapy" to shut people up in public meetings. The word has developed a negative connotation and is almost always used in a denigrating sense.

    The truth matters.
     
    currer likes this.
  10. In Vitro Infidelium

    In Vitro Infidelium Guest

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    A fine sentiment and we can all picture ourselves astride some barricade heroically wielding a flag emblazoned with the word 'truth'. But 'truth' is unfortunately rarely a simple and easily definable 'thing'. Questions such as 'Whose truth ?' , 'Matters to whom ?' and 'Tested how ?' all arise when the audience for some explication of 'a truth' is hetergengous, is possessed of multiple competing perspectives and shares no central binding philosophy or community of interest.

    Truth, as opposed to 'honesty (which we might define as truth about onself), is rarely a useful starting point if one wants to influence others. Human beings are far more likely accept a nuanced and gradualist introduction to an alternate view though of course Pauline convertions do happen, but they invariably produce zeolots whose contributions lead to the ossification of divisions rather than any breakdown of barriers. Truth tends to demand that someone is 'right' and someone else is wrong - the situation is instantly oppositional and the someone who the 'truth' demands must be 'wrong', has nowhere to go other than either concede defeat or contest the 'truth'. Even if one is in a 'winning' position, it may not be beneficial to create a situation where someone becomes, or is maintained as, an enemy. Giving the 'opposition' an 'out' is often by far the most effective way of reducing opposition, long term. This is especially the case where one is 'fighting' from a position of 'weakness', because one's chances of total victory are very small; an honourable truce, although it may be far less emotionally satisfying, may be by far the best outcome.

    IVI
     
  11. GhostGum

    GhostGum Senior Member

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    This is pretty much like what Alex has been blogging about here,

    http://forums.phoenixrising.me/index.php?entries/greenwashing.1258/

    It is like the whole establishment of the term 'alternative medicine' for anything outside the realm of a patent and FDA red stamp, regardless that all substances are unique in their chemical structures and should be judged on their own merits; amazing the job it does on the public too and how many people I hear mention 'alternative' in conversation about a supplement.

    Maybe we need to go over and really break down the semantics/perceptions that have been used against us over the years and also use this as a source of reference; it really would paint a damning picture I imagine.

    The whole problem with 'the why' as you point out is how well it is deflected through shock therapy or endless repetition of painting a perception of conspiracy, a fringe group, what did Michael Hanlon say, ME terrorists? Then when you put certain arguments forward you end up helping them paint the picture for them. As much I agree with your sentiments Jarod history shows time and time again it is not a productive form of argument, not that you are suggesting it is. I always hope that Hillary Johnson is following it all and 'the why' will go in a new book which is probably where it is much more suited as opposed to the media.

    In politics or the media the best form of offensive is probably a good defensive which is complete composure and point out the most obvious facts and observations about your opponents motives and views which the most average person can blatantly see and put together.
     
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  12. alex3619

    alex3619 Senior Member

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    Oh darn, there goes the secrecy about a section of my book. ;) Its one of the things I am currently researching, although I am only up to the early twentieth century.

    Bye, Alex
     
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  13. Firestormm

    Firestormm Guest

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    I don't have a problem with people touting 'alternative' remedies, lotions, potions, or 'cure-alls'. But I have to ask why these people are not submitting their products to clinical trial and approval. If there are as good as those who promote them ever seem to think - then they should spend their damn profits on getting them approved.

    Else-wise I am afraid I see exploitation written all over such practices and I am afraid that anecdotal don't cut-it with me and shouldn't with anyone with my condition. It is very hard not to refuse to 'try' said products when so 'many' are seemingly singing their praises - and not just remedies but unauthorised and largely 'bogus' tests too.

    This whole area needs to be critically appraised in my view. AND I include 'well known' practitioners in the ME-world and their laboratory practices (as well as clinical ones) also.

    Whenever I see in comments on newspaper blogs people claiming that such-and-such a person 'knows what they are talking about' or 'has helped cure me' or their unauthorised, untested, products I actually do cringe. Personally, it only undermines any attempt to legitimise our condition.
     
  14. GhostGum

    GhostGum Senior Member

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    Well in this instance I am referring to supplements being referred to as alternative which puts some people off I think because they are not being dispensed/approved by some doctor. I agree proper clinical trials need to take place but I am just endlessly annoyed when research papers come out showing very promising results (a lot come out of Universities) but then no one really takes much notice or follows up; half the time I do not see much difference with some of these over studies done for by some company for their product neither. Just appears to be shocking bias in the system to tout patented products as 'official medicine' while supplements are 'alternative' because they are free market chemical structures. At least this can apply for many mild conditions or especially in the realm of depression, anxiety, mood disorders; so many interesting safe options for mood elevation, compared to the track record of anti-depressants how could anyone go wrong? I also wonder how many 'medications' have been put out over the years touting great treatment with underwhelming results? Or dangerous results?

    But yeah, all the very large sup companies should put a coop together and do some large scale studies. Probably not part of their business plan though and they might be worried once something does officially look like becoming a treatment it could be clamped down on by the FDA and hand balled to a company. I believe this was tried with Piracetam since it is such an effective substance, a company tried to claim/patent it but failed, the DEA has even gone after some retailers selling it but they have probably given up now since so many different racetam's are on the market. What are the chances now it will ever be used for treating for anything regardless of its potential?

    Boy this is off topic :eek:
     
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  15. user9876

    user9876 Senior Member

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    I read one of wessely's early FSS papers and thought it would be fun to write it in a formal way and even do some proofs to show gaps in the reasoning. However that would be a bit task and I would need to put a lot of thought into an appropriate formalism. I just felt as I read it there were some major issues with the argument he puts forward which were covered over due to the style of writing. One of the things that impressed me about Lipkin was I felt that there was a precision to his statements that I have not seen from others.
     
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  16. natasa778

    natasa778 Senior Member

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    This is a hollow argument.

    Any idea how much a well designed clinical trial would cost, say a nice large scale placebo rct? (nothing else would do anyway ;))

    Any idea of the average profit margin on an average 'alternative product'? Just think about numbers and whether they add up ... And especially do the long-term cost-vs profit predictions, ie would the investment justify the cost in situations where patenting a substance is not possible, ie no way to recuperate the costs even if the product is approved? Do the maths.
     
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  17. currer

    currer Senior Member

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    It should interest people why a group in society gets stigmatised the way we do. It is a valid concern.

    Any unbiased observer can tell PWME are very sick.

    Why is this obvious truth denied? Who gains from it?

    Can anyone think of some historical parallells? Jews? blacks? illegal immigrants? communists?

    But why the sick?
     
  18. SilverbladeTE

    SilverbladeTE Senior Member

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    Dark, evil, twisted shit that goes, on, the real stuff, not mad conspiraciy stuff, you always need two consider one of two things

    1) FOLLOW THE MONEY!!!!
    who is making money off this, or, who is not losing money by this?

    2) CHANGE IS ANATHEMA
    it exposes previous corruption, it forces folk to do something, it brings change to a stinking system designed ot rot everything down to a baseline miasma of inactivity and collective save-ass lying bullshit that the shits can suck all the wealth and privlege they can get out.


    Disabled were the 1st to be collectively, cold bloodedly mass murdered by the nazis for money (save the rich scum who put the nazis in power a pittance in tax), hubris, manipulation (those who agreed wit this were for ever after compromised) and experimentation (could it be done?)

    [​IMG]

     
  19. natasa778

    natasa778 Senior Member

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    Aside from the insurance/financial incentive to keep ME in the Mental Health (ie their own fault and nothing we can do) domain, the other reason for stigmatising is down to the most primitive part of human nature = fear of the unknown. Human nature doesn't like the unknowns. A mysterious illness that cannot be explained or controlled is scary. In the olden times such a thing would have been explained away as the work of Satan. Nowdays, at least in the West, we prefer to declare health problems of unknown nature as either Not Real = In the Head (behavioural, hysterical – ‘psychiatric’ and such), or else any mysterious illness must be patient’s own fault. In that those who are sick are sick because of their faulty genes or because they (or their parents) did something bad to make them deserve it (remember ‘refrigerator parents’ theory of autism?). Or because they think bad thoughts, play with the devil etc.

    Scared little people try to ward off evil and falling pray to that same fate by convincing themselves that there is Nothing out there (this Thing is not real, it is in their heads) OR that the sick are sick through fault/s of their own. So they feel safe.
     
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  20. Jarod

    Jarod Senior Member

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    yeppers. :thumbsup:

    Howdy ghoast gum. Your icon cracks me up!

    I think we are on the same page. No need to bring up any major leaps of logic when responding to these rascals. Keep it factual and keep the more inquiring viewpoints in a different venue.

    Yes defense is good. I don't won't to get off course, but we could also consider being offensive and post articles of our own. Todays media is a low cost model and de-centralization that the internet allowsgives us more input than could be achieved 10-20 years ago.
     

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