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Negative publicity on PWME - the motive?

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

  1. currer

    currer Senior Member

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    Since the debate about the negative press on ME on other threads I would like to start a thread to examine the motives for this publicity campaign against us in more detail.

    I think it is important not to fall into the trap that is being prepared for us.

    I believe the real motive is to manipulate the perceptions of other doctors and researchers who otherwise might take an interest in researching this disease.
    The motive is to delay or prevent a proper examination of the biological underpinnings of ME.

    This is what we need to state in our response to these unpleasant articles - and not to fall into the never-ending debate about what ME is.
     
    Wildcat, Kati, leela and 8 others like this.
  2. currer

    currer Senior Member

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    It interests me to see that whenever there is a danger of fresh research interest awakening in ME that a noisy publicity campaign follows in the papers - not in medical journals, where a modicum of decency is necessary - to misrepresent the research and deflect interest back into "safe" psychiatric areas.

    The problem has always been that not enough young researchers are developing an interest in ME
    Medics need to see that there are good career opportunities for them in this field that will be rewarding.
    It is not yet certain which medical specialty PWME belong to. Should we be referred to immunologists or infectious diseases specialists?

    If no specialty other than psychiatry sees us as potential patients the biomedical research so necessary to move understanding forward can not occur.

    I believe this is the reason for the publicity assaults on PWME.
    It is to put new doctors off from developing an interest in our disease and to ensure that basic research that can change the politics around ME does not occur.​
     
  3. currer

    currer Senior Member

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    Why is there so much noise made about how dangerous and insulting we are as a patient group?


    Are doctors going to wish to specialise in a disease where they are warned that they will be stalked and threatened by psychotic pateints?

    No.
     
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  4. pollycbr125

    pollycbr125 Senior Member

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    I think the crux of it is there are a lot of people with a hell of a lot to loose if it can be proved 100% that ME is not a psychiatric illness. therefore painting patients in as bad a light as possible and making joe public believe that were not really sick , just malingerers and really mentally ill but denying we are we gain no public sympathy . This also keeps other researchers and doctors away as well . Its very clever ill give them that .

    what urks me most is that research on stuff like CBT or GET gets such high publicity yet biomedical research barely see the light of day especially in the UK press .

    CBT and GET though as treatments really are as cheap as chips whereas treating us with drugs thats where the big bucks come in . The mystery of ME could have probably been solved 2 decades ago had the likes of wessley etc not got a stranglehold on the illness . makes me very angry by the time I became ill and prob many others here there could have already been treatment in place and maybe we wouldnt have become as ill as we are ? its a travesty
     
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  5. user9876

    user9876 Senior Member

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    I think that much of the basic research will be done anyway. The immune system is an interesting area for scientists (biologists as well as medics) and one where the science has started to progress. Ok its not ME research but having the basic research into the immune system and all the different messaging along with sensing or detection methods will help. As the basic research develops it may not take much to apply it to ME.

    Often the really hard thing about research is asking the right question Thats why the work of Wessely et al is dangerous because they don't want to change their question even given their results and they don't like others looking at different aspects. I'm thinking as the immune system is studied the questions become obvious.
     
    Min and currer like this.
  6. Firestormm

    Firestormm Guest

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    I think this thread can only function if you provide specific examples of what you consider to be 'negative publicity' and not opinion pieces published on blogs designed to (as IVI said) 'poke the ants' nest'.

    There are 'journalists' or people employed by e.g. newspapers whose underlying aim is to 'stir up' opinion in whatever way they can. To irritate and inflame and generate 'hits'. They thrive off of 'rants'. It is their job e.g. Rod Liddle who I understand sided most recently with the Tory Chief Whip!

    If you are thinking about the media reporting relating to the PACE Trial well there you have a 'legitimate' research study reaching conclusions that were disseminated amongst the media and reported verbatim. The headlines were then 'tweaked' to sensationalise - which is primarily what particularly the 'media' thrive on.

    If anyone complains then they can 'legitimately' point to their 'legitimate' source. Now, if a study was published, financed by the state, that reached another conclusion about e.g. the cause of ME or posited a new treatment that comprised some new drug; then you might see similar headlines.

    The simple fact is that nothing along the lines of PACE has ever been forthcoming from any 'legitimate' e.g. government source. ME is dogged by 'expert' opinion and very little else.

    What you consider to be 'negative publicity' is largely in my opinion - opinion. If you are confining your search to the likes of Liddle and Pemberton then you are too narrow. These individuals are not likely to take any time to better consider what they write on a blog designed to inflame sentiment or to attract those who share their warped and dismissive views.

    Maybe you should ask what you would consider to be 'positive publicity'?
     
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  7. currer

    currer Senior Member

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    I agree with both Polly and user.
    It is upsetting for long-term sufferers to think that had research progressed as we had a right to expect, we could have treatments available now. Which I believe.

    It is true that other research areas will cast a light on ME eventually, especially immunology. I hope the Lipkin -led research does not focus too exclusively on pathogens, because i suspect that no one pathogen will emerge. We have been there before.

    To answer Firestormm - I think we had a right to expect fair reporting of the Lipkin results - which did not claim that "viruses are not associated with ME"
     
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  8. currer

    currer Senior Member

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    "The headlines were then 'tweaked' to sensationalise - which is primarily what particularly the 'media' thrive on."

    I cant believe you interpret the response to the PACE trial in this way, firestormm - the PACE trial results were systematically distorted from the outset.

    This took more management than a few irresponsible journalists could do by themselves.
     
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  9. currer

    currer Senior Member

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    Bob stated in the Pemberton article debate that he could not find any tweets from patients that were offensive in tone, despite Pembertons claim.

    "For the record, I've looked through all the recent Tweets that include his username, and I don't think I've seen any that are abusive, rude, harassing, impolite or unreasonable.

    You can see them all here:"
    https://twitter.com/i/#!/search/realtime/@MaxPemberton
     
    Min likes this.
  10. Firestormm

    Firestormm Guest

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    Currer. My point was that what was fed to the media was what the media primarily used in their headlines from a (seemingly) credible source.

    When it comes to 'science' and published papers I have yet to see ANY journalist EVER dissect a paper beyond what is given them on a plate by the body that is priming the media outlets - now that can be the Science Media Centre or any organisation behind a publication.

    Some media will at least attempt to include 'both sides' or opposing opinion in their coverage of any 'event'. When it comes to sensationalism that is not always the case and when it comes to opinion blogs or columns it invariably is not.

    What you see as 'negative publicity' is I suspect anything that expresses a view you consider 'distorted' 'unrepresentative' or simply not in agreement with something you personally hold a view of.

    Consider all the 'negative' reporting about XMRV over the past three years if you like. At the time 'many' people who hold the notion of retroviruses being responsible consistently undermined any attempt to report that there was no association.

    And yes, consider CBT and GET if you like. All those who comment that these two therapies are in various ways detrimental to our recovery - you have to ask if a) they have ever engaged in either or both therapies themselves, and b) why they do not accept that some of their fellow diagnosees have felt them to have been of benefit.

    Look more broadly and outside of our condition at the reporting of I don't know something that you feel is not being disseminated in accord with your own opinion.

    What is it generally that you want to see more of in the media? As I said before perhaps if you provide an example of a 'positive' report it might help.

    Personally, I appreciate some attempt at balance in a general article or news report. At least a representation of any opposing views and interpretations. But again, even (especially) when it comes to scientific papers it is often (in my opinion) the 'interpretation' part of the paper that is the cause of most contention and the same is true in the media.

    We might not agree personally with the words used to report. We might think we could have done a far better job of it. But what is it about 'negative publicity' that is most irksome to you?
     
  11. currer

    currer Senior Member

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    Well I suppose the Sonia Pulton articles are positive publicity.

    And I think this sympathetic reporting in the press is what generated the immediate response in the Telegraph. (nasty tabloid that paper has become.)
     
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  12. alex3619

    alex3619 Senior Member

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    The issue of journalists uncritically copying press releases, known as churnalism, is a big one if the press releases are not reliable. I think that, shock jocks aside, we should be looking at press releases, interviews of scientists, doctors and government officials, and so on. Its not just the fault of the media.

    Motivation is very hard to judge. Its only possible to say that it might be something or other. Its easier to point out flaws, and then ask why. Then when we can show a repeated pattern of the same flaw, ask why they keep getting it wrong. Accusing someone is not always effective. Asking them to explain "incompetance" is better in my view.

    Bye, Alex
     
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  13. SilverbladeTE

    SilverbladeTE Senior Member

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    Somewhere near Glasgow, Scotland
    Same bloody motive that's been around for millenia:
    destroying a type of Human being's reptutation, respect etc, so you can destroy THEM.
    Whether to rob them for profit, to kill them out of mad xenophobia, or because they are merely a thorn in the side youd rather didn't exist, scum have silenced, lied, spewed bile, tortured, banned victims from having jobs or income or religiosu comfort or housing, ridiculed and eventually slaughtered them, for millenia.
    We are "inconvenient" to some, so we must be wekened, to be silenced, to not "cause waves"
    inevitably though, that demand to silence, evolves even if not intentionally, into murder. because the victims' lose their "voice" in society, become weakened, become victims...it's inevitable.
    hence, true, decent, inclusive, funcitonal democracy is *inclusive*, it is about emancipation, not segregation!

    if the truth on ME is known, HEADS WILL ROLL. this is not wanted by those with power.
    whatever the initial reasons were aren't pertinent, the conspiracy of silence must be enforced, or the Sheeple will be woken up and get angry, and take it out on the dumb ass bastards they keep voting in
    As I keep saying: If you want to make enemies, try to change something.
    ergo, we must be made to appear in the media to be lazy, attention seeking hysterics, psychotics, effette "poofs" (*), cowards, blasphemers of the great God Science, wastrels of "hard earned taxes", and so on.
    (*) I use that in regard to way such is manipulated, gays run the normal gamut of the Human spectrum, but playing upon the "perversely effete" is an old trick.

    Who are our enemies? psychiatrists/psychologists, who are..master manipulators. Who work for Public Relations and advertizers to manipulate and sell you bullshit every gawd damn day.
    And yes, they are *enemies*. They want our silence, or to use us as guinea pigs for their filthy, perverse pseudo-science, and that means our *deaths*.

    Same damn thing, in different ways throughout history, doesn't matter if the bastards were a white coat or a black jacket with silver runes, or a white robe with a pointed hat.
    "Jews sacrifice christian babies to the Devil!"
    "The Kulaks horde food and let you starve!"
    "The liberal burgeois intellectuals can teach you nothing, leave your schools and universities and learn from the peasants, and kill those who oppose you!"
    and we cna go on in such for a looooong time, and damn well does include, at times, scientists and doctors, as much as any group of people (see the Eugenics movement)

    We may never know the actual, original WHY this all occured. Indeed it may well be a mix of things
    personally I suspect a conflux of interested parties:

    1) State and insurance companies not wanting to pay out disability
    it doesn't occur to them the long term cost of this are vaslty worse than if they had worked on a short term cure.
    Alex has spoken about this before.
    It's "pass the buck, we don't want to deal with this hot potato! just hush it up and it will go away!" type of idiocy.
    Very seriously, go watch the old UK TV show "Yes Minister" it had a lot of actual examples of the crazy crap that goes on behind the scenes of bureacracy and politics.

    2) mentally perverse psychiatrists and ilk who wanted a group to control, call their own, experiment and use as proof of their bullshit theories.
    Like it or damn well not, Mengle and those nazi maniacs were not unique, they were just another example of "the ends justify the means", as I've said, in reality, many enter science/medicine as a "religious" sort of ideal which can of course be good...but can can also, be bad, and "Science" itself as a Human endeavour (it's not some "perfect clean angelic being" as many portay it) has one utter BULLSHIT stupid record of ethic and moral abuses that pisses me off endlessly, grr.
    There must be a simple, clear universal Hippocratic Oath, but in legal binding terms, worldwide, for medicine and science. No damn "wiggle room", no cop outs, no opt outs no freakin "U.N. Veto vote", hard set of laws that apply to all sicence and medicine to prevent abuse.

    3) to keep secret biological weapon tests or merely just the fear that such pathogens had escaped, or an ally had done such, ie, UK may have started this crap believing rightly or wrongly the UK's own Porton Down, or US allies had had an accidental release, or deliberate one.
    The Left hand literally often does not know what the Right hand is up to...and the UK/USA's biowarfare strategy was moslty on incapacitating/famine-causing/economic reduction agents, not simply killing agents, and as I have said, the UK was a far more secretive, stupidly so, nation during the Cold War than even the US or Russia was.

    4) Control, simple arrogant demand/need to control: less the populace knows/fears, the better for the assholes in charge
    possibly they had seen many vaccine and/or organophosphate trials on Humans resulting in ME, so squashed such information,for again, greed and arogance.
    many morons would think "the ends justify the means" so silence things they may consider a threat to "vaccines which save millions!" likewise with aggro-chemicals...when in fact all such does is increase harm exponentially in the long run...as other problem-causing agents are also silenced...and the populace is slowly polluted with toxic effects from many sources that should have been exposed and dealt with as harmful.
    So, you may have ME plus...hundreds of other problems.


    the crap of the "Yellow press" of times past, the scumsucking tabloid rags of today, etc should all inform you of the reality of how the Public are manipulated and by whom and for what.
    anyone who's ever read UK tabloids will know what I mean...and my sympathy, lol
     
    jimells likes this.
  14. Jarod

    Jarod Senior Member

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    Pertaining to CFS/ME. I think Dr Kenneth Friedman's video testimony about the elephant in the room illustrates how there is a concerted effort to prevent education around ME/CFS. He talks about how he has been personally prevented and punished for trying to educate about ME/CFS.

    However, I'm convinced the motives go way beyond CFS/ME, and go beyond denying us insurance benefits or treatments. So far beyond, I don't think we will be able to honestly discuss it here.

    I'll just leave it where Alex touched on the other day. We've been systematically lied to for years.

    Many, many lies. Diseases, wars, drugs, psychology, history, education, news....... It just goes on and on for over a hundred years.

    And we are not the Talaban for trying to figure out the truth you Aliens!:alien: My dry sense of humor....:)
     
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  15. currer

    currer Senior Member

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    Could be an autoimmune reaction to adjuvants in vaccines.

    http://www.the-rheumatologist.org/d...SIA_A_New_Way_to_Put_the_Puzzle_Together.html

    Autoimmune (autoinflammatory) syndrome induced by adjuvants provides a diagnostic framework for enigmatic conditions

    "For years, adjuvants have been used by physicians and scientists to boost a desirable immune response, either in experimental models or during medical interventions, most classically, immunization.
    Infectious agents are probably the environmental factors most closely associated with autoimmunity and autoimmune diseases."9

    "Recently, Rose proposed that, in addition to the known mechanisms by which infections elicit autoimmunity, an infectious adjuvant mechanism may play a role in immunopathogenesis.18 For instance, complete Freund’s adjuvant is a water-and-oil emulsion that includes killed mycobacterium. This adjuvant has been used to induce autoimmune diseases in many experimental models"


    "From these observations, it appears that the activation of the immune system by natural adjuvants (e.g., infectious agents) or pharmaceutical ones (e.g., vaccines containing alum or silicone), while usually followed by a desired activation of the immune system, could, in certain situations, trigger manifestations of autoimmunity or even autoimmune diseases itself."3,10

    "Yet the appearance of these diseases in association with exposure to an adjuvant is not as widespread as could be expected. This inconsistency may depend on the adjuvant itself, the genetic susceptibility of the exposed individual, and the rate of diagnosis and reporting such plausible associations"


    Now if there were fear that upon investigation that adjuvants could prove to be a problem, and patients would deserve compensation for their disability, that would merit the intensity of the campaign against uncovering the underlying cause of this disease.
     
    Min likes this.
  16. Stukindawski

    Stukindawski

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    I've been impressed by the information produced by the community on this forum, particularly work done on the PACE trial. I enjoy reading Bob's contributions.

    I think this point has started to be made and it's something I've thought for a while that the common reference to 1000s of papers on biological abnormalities, or whatever general sign is being hung around them, is a little played out. It's great to a point, but I feel like, I'm not trained, nor are many to answer the inevitable follow up question. Like I could rattle on about orthostatic intolerance, nk cells, irregular PET topologies - but it's not something I know substantial information about, and I lack the professionalism to map their relations to our disease or the human body as a whole.

    I would like to see the community, a community, maybe this community to produce a condensed but substantial material that could be passed onto journalists, medics and scientists (perhaps you might have more luck with students in particular) that puts together things like, the issues with epidemiology, the biological abnormalities and their relation to other recognised diseases and of course, a good list of quotes from the best scientists working in the field of biomedical ME/CFS research.

    I think it is also possible to co-opt at least some of the psychological research on ME. For instance, a paper might talk about a patient's negative cognitions towards activity, and suggest positivity improved activity. But what does this evidence really tell us? It's just as likely that the negative cognitions towards activity were protecting the patient from further damage. A lack of any long term and objective observation of ME patients activity - along with measuring the different signs of illness in each patient and looking for biological abnormalities described in various research papers means that the original data merely encourages further curiosity as opposed to proving any point. In that sense you could ask for better psychological research as opposed to completely fencing it off.

    It's been argued by many that the inefficiency and inaccuracy in diagnosing me/cfs guarantees that patients with a psychological issue could get (and I think according to Tuller's article, have been) enveloped in the same diagnosis as someone with an auto-immune issue. In this instance, good psychological research could be the key to improving epidemiology. Anyway, I'm speculating beyond my station I'm sure..

    I think you might get more Sonia Poultons if you appeal to professionals on an individual basis. It's clear the PR war is something that requires power and resources. You have to sow seeds and tend the garden a bit think. A point Johan Mares made about how advocacy can become a bit short-termist.

    If you have a good information pack to send out, then anyone in the community can get a copy, maybe even print it, and send it with a covering letter to people that matter, or pass them on to students the might know, or leave them somewhere they might be read.
     
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  17. user9876

    user9876 Senior Member

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    I think this ties in with some of the discussion around what to do about the NICE review in 2013
    http://forums.phoenixrising.me/index.php?threads/nice-guidelines-review-aug-2013.19105/
     
  18. biophile

    biophile Places I'd rather be.

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    It seems that whenever patients/advocates wonder about the motives and characteristics of certain psychiatrists or other proponents for biopsychosocial or cognitive-behavioural explanations for ME/CFS, the knee-jerk reaction is often (for anything that challenges the notion that such people of the latter camp are all good, honest, and hard working, who just care about patients, are unbiased without conflicts of interest, etc), contemptuous accusations that patients/advocates are merely engaging in unfounded conspiracy theory.

    Meanwhile, it seems perfectly OK for said psychiatrists with self-confessed (published in medical journals) ties to the insurance industry, to speculate wildly in medical journals and newspapers about "secondary gain" for patients, personality characteristics of patients/advocates, motivations of critics, secret extremist militant ME cabals engaging in organized hate campaigns (*cough* conspiracies), conflicts of interest for merely being a patient, abnormal illness beliefs, etc.
     
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  19. alex3619

    alex3619 Senior Member

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    The concerns raised by biophile are some of the reasons I don't like talking about motivations. Its better, and more objective, to talk about how things are distorted rather than why things are distorted. If it can be shown that somebody said something biased, distorted, inflammatory or discriminatory, then the question as to why is a moot point. To some extent the why doesn't matter - regardless of the reason, it remains a problem that needs to be addressed, and a basis for complaint.

    Bye, Alex
     
  20. Esther12

    Esther12 Senior Member

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    We're lowly patients - we cannot speculate about the nature of the minds of our masters! They should be respected as an incomprehensible mystery and we must have faith in their benevolent nature, and praise them for what they do for us.... or else they may become wrathful, and rain down upon us their terrible judgements.

    It is foolish for you to expect a relationship of equals when you deal with the Gods!

    I don't have a problem with anyone finding any treatment helpful (actually, something like LP and some versions of CBT for CFS do seem quite innately quacky. eg: I don't like people turning to spiritualism, even if they find it a helpful way of dealing with the death of a loved one, and it's possible I could get a similar response to some 'treatments'. That's probably a bit OT).

    I have a big problem with false claims about 'recovery', how effective treatments are, and so on. It's quackery, and I don't like that. When CFS patients are being portrayed as militant loonies rejecting highly effective treatments, based upon deeply inaccurate views about the efficacy of those treatments, that is pretty sickening. Also, it serves to venerate those who have made misleading claims for their brave commitment to helping patients despite the anger they attract!

    If the results had been presented according to the protocol, I think that post-PACE we could have moved to a much more reasonable approach to CFS, and to the use of research funding in this area. As it is, it seems that we're going to have to fight to have the true nature of the results acknowledged, while simultaneously being condemned for our unreasonable hatred of psychiatry which apparently leaves us unable to accept the clear scientific evidence from PACE which showed 30-40% of patients recovered following CBT/GET.

    I do find that irksome. Increasingly so actually. There seems to be so little interest in finding out why patients are angry, or do not believe the spin which has been put on the results from PACE - instead it seems to be acceptable to just pretend we're all boggle eyed and screaming 'It can't be psychological because it feels so REAL!'

    PS: Haven't had a chance to read through this thread yet, but am off to bed now so wanted to post anyway.
     
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