Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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consider offense

Discussion in 'Action Alerts and Advocacy' started by markmc20001, Jun 28, 2011.

  1. markmc20001

    markmc20001 Guest

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    Saw this comment from a patient in another thread. It is a common response from us. Why in the heck do the media keep getting it wrong? Our chronic fatigue instead of ME, or news videos clips with Nancy Sneiderman describing our illness using 80+ year old great grandmothers running on the beach? Had some random thoughts. See what you think.

    It might not be an accident the media is calling it chronic fatigue. Does a pretty good job of marginalizing us right? They spend big bucks on that. Clear from the cartoons, news stories, psychobabble, and the rest of it. No doubt somebody is helping them understand chronic fatigue is a better term than ME. From their perspective!

    I would like to suggest blending in a bit more offensive at some point.(if none is being done already) For instance, calling the journals on their double standard. Putting WPI and their paper under unlimited scrutiny, while these contamination papers and organizations go without the same level of scrutiny?

    Also, we need to find good sources of media and journalists that will support our cause. Contact legitimate sources of media NOT CO-OPTED by big Pharma to help post our offensive. For instance maybe some of these website would be helpful: Try PLoS, AlterNET.org, Nakedcapitalism, Huffington post?, Mindy Kiteh, Dillan Raddigan at MSNBC, Glenn Greenwald, DailyBail.com, Patient advocate. Use facebook. With the internet, there are some legitimate sources of journalism popping up that may understand our plight. Maybe only PLoS journal would truely understand our plight the best. But everybody knows somebody with cancer or autism or CFS/ME.

    Get creative and launch some offensive attacks and anti-spin. I actually had a major success in getting YVES of nakedcapitalism.com to post Judy M response to the Science request to retract.

    Writing a TV station or newspaper about a hit job they were paid to do by big pharma is defensive, and may not be as effective as an offensive response in the PLoS journal for instance.

    Just rambling suggestion.
     
  2. eric_s

    eric_s Senior Member

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    I told Dr. Racaniello once (about a year ago) to please not use the term "chronic fatigue" anymore. I think he said he understands what CFS is, but uses "chronic fatigue" at times because it's shorter. Like i said above, i don't think anyone should say "chronic fatigue" unless they are actually talking about chronic fatigue and not about us.

    I think we can do both, what you suggested and also what i suggested. Those big newspapers and TV stations have a lot of readers and viewers, so i think they are very important and we can't just ignore them. Of course, it would be even better there too to get them to write more and better articles than to only react to problems with an article. What i think is important is that organisations try to establish better contact with them. Individual letters are good too, but then i guess it has to be a lot of them.
     
  3. markmc20001

    markmc20001 Guest

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    true.

    I posted an interesting interview somewhere before with Tavis Smiley and Robert F Kennedy recently. Robert basically said "5 men control virtually all of the United States media". Sure the same applies outside the US to some degree too.

    I have a good feeling some jounralists try to some extent like Amy Dockster Markus of the Wall strest journal, but she is still working for the editor. We will continue to get slammed in those corporate controlled media as long as big pharma keeps people hooked on toxic drugs to the tune of trillions of dollars each year.

    They have soooo much money and control, that everybody is virtiually reliant on them for revenue. They are using the Carrott and stick approach.
     
  4. caledonia

    caledonia

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    I've even heard people on the CFSAC committee who should know better say "chronic fatigue".

    Research which comes up with a cause or at least a unique biological finding (like multiple sclerosis), will cause the name to change. Then we won't have to deal with the name at all. The way to get $100k for research right now is to vote every day in the Vivint contest (see my signature for info).

    In the meantime, we should insist on "ME/CFS", which the WPI and the NIH have already started to use. There is an excellent public service announcement done by the MCWPA which brands "ME/CFS". You can get the PSA playing in your area on TV by contacting the MCWPA for instructions. http://mcwpa.org/ or contact UsedtobePerkyTina on this message board.
     
  5. SilverbladeTE

    SilverbladeTE Senior Member

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    It's Myalgic Encephalomyelitis, **** any other stupid name dreamed up by people who don't give a damn about us or know WTF we're suffering.
    CFS is a deliberate term of marginalization, denigration and abuse, and should be consigned to the dustbin of history and ignominy like the "n' word" and many other epithets used by the ignorant, scumbags and villainous rabble rousers, grrr!!!!

    "Oh, you have no Oil In Your Joints Syndrome? Oh how sad..." (arthritis)
    "Occular Disfunction doesn't sound bad" (blindness)
    etc etc

    CFS was dreamed up as method to make this a joke, a non-disease, no one suffering so we could be thrown into the dustbin and money could be saved and snakeoil salesmen could have their own nice, little invented bailiwick to play with, and people to abuse.
     
  6. justinreilly

    justinreilly Senior Member

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    CFS and CFIDS are shorter than 'chronic fatigue'. ME is the ideal if one is obsessed with shortness!! I understand the ignorant saying 'chronic fatigue' (though it pains me terribly). But once someone is asked to use ME, CFIDS, CFS or whatever for the third (nevermind the twentieth) time, there's absolutely no excuse.
     
  7. gregf

    gregf Senior Member

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    The press and others will always call it chronic fatigue while patients call it CFS.
    Saying ME/CFS in formal/legal situations is not enough.
    It is necessary to say ME alone in casual conversation.
    Use it as a weapon as CFS was used against us.

    Eveyone time someone says CFS we go backwards.
    If we can not get people in this forum to understand,
    then we are wasting our time and energy.
     
  8. Francelle

    Francelle Senior Member

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    To Silverblade!

    Awesome website Silverblade, great colour and layout, altho' the content is a little weird IMHO! :D It's so good it could just about suck me in though!

    The M.E./CFS part is well done too! You are one clever little vegemite I can see!
     
  9. Francelle

    Francelle Senior Member

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    I agree with you Greg and it does pain me whenever I hear people call it CFS. I try to call it M.E whenever possible but it's not always easy in passing conversation, as it can take time explaining it. More often than not I just want to downplay the termininology and mumble the minimum I have to and get onto the next thing! Coward!
     
  10. taniaaust1

    taniaaust1

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    Hi greg :) nice to see you around.

    Its not that simple thou as there are people at this forum who do not have ME and do only have the CFS version on it and those may be relucant to use the term ME as they may know there is a difference and may know they have not got ME. I wouldnt want anyone who knew they didnt have ME to be saying they had ME to feel like they are fitting in. I think corts site caters for all subtypes of CFS whether it be the ME group or others.

    Hence there are always going to have to be two different names. I do thou wish they'd give that other group a different name as there will always be people out there who dont have ME but have similar symptoms due to many of the symptoms being general illness ones who as we all realise will always be a group of ones with maybe undiscovered yet viruses, bacterias or whatever or a missed diagnoses or an atypical illness confusing things. I'd like that group called naive doctors syndrome or God complex doctors syndrome to stand for illness which doctors are failing to diagnose but are unaware they are doing that as they are God :D
    .......

    I do use the term CFS quite often (thou i do try to use ME too and ME/CFS all depending on what Im talking about) as my own definition of it and understanding covers there are many different groups of actual illnesses in it. I dont see it as a single thing. What I really hate is when people just use the term "chronic fatigue" instead.

    It is the stupid defination and the shortened completely wrong illness name which cause the issues.. if it was defined completely differently as CFS as being for a whole heap of different distinct illnesses which each had their own definations for.. some very serious illnesses and some not so serious and if that was understand by the medical profession and everyone else, there wouldnt be an issue.

    What really needs to be stopped is the usage of "chronic fatigue" as the name of the illness in the media, this is what causes the great confusion I think in public perception. If people were educated that was a completely different thing, I dont think we'd have the issues we face now with others.
     
  11. Snow Leopard

    Snow Leopard Hibernating

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    I'm more annoyed about how these articles on XMRV being 'disproved' only do so with respect to CFS. They often completely neglect to mention that XMRV was first associated with prostate cancer and there was similar controversy as most research groups 'failed to detect' it in that patient group too.
     
  12. Roy S

    Roy S former DC ME/CFS lobbyist

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    Kim McCleary and the CAA have not gotten out of advocacy.
     
  13. SilverbladeTE

    SilverbladeTE Senior Member

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    Hehe, thank you! *bows with a theatrical flourish* :)
    Och, I like "weird", it's more fun! :p
    Always loved curio shops, and old wardrobes full off all kinds of odd stuff you could get lost in for an entire day....

    Australians and their vegemite, never did get you Antipodians' passion for that stuff...hm, me thinks it's really cannabis food paste, eh?! :D
    but then again, we have haggis and fry ANYTHING, so who am I to talk about culinary peculiarities! ;)
     
  14. eric_s

    eric_s Senior Member

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    They once said they have. Why do you say they haven't? I'm not saying you're not right, i would just like to know what the situation is.
     
  15. justinreilly

    justinreilly Senior Member

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    I agree with Greg. If you have ME say I have 'ME' or 'ME/CFIDS'. If you have Idiopathic CF, then say ICF (don't say CFS or ME). It distresses me that you seem to be implying that people with Oxford defined "CFS" (ie mere ICF) should say they have "CFS"- that would be just aiding the Wessely School in their scam.

    CDC came up with the term "CFS" to replace "ME", and continue to use "CFS", precisely because of the the implication that it is mere CF. Yes if we spent a huge amount of money and effort educating people to say CFS and not CF we would make a dent, but we need to really get at the ROOT of the problem which is the term "CFS" itself. "CFS" should be abandoned and re-replaced with ME. (those who have ICF must use "ICF", never ME or CFS).

    Just educating people to use CFS and not CF would be like if CDC renamed Alzheimer's to "Chronic Forgetfulness Syndrome" and we spent our time trying to educate people to use the full name 'Chronic Forgetfulness Syndrome" and not just "chronic forgetfulness." The appropriate response would be instead to keep calling it Alzheimer's and reject the label "Chronic Forgetfulness Syndrome" as inappropriate and a transparent attempt to trivialize the disease.
     
  16. eric_s

    eric_s Senior Member

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    One problem i have with using the name ME, is the diagnostics criteria. For example, if a person has been diagnosed as having CFS according to the Fukuda criteria, would it then be ok for that person to say "I have ME"? Or should only people who have been diagnosed after ME criteria use that name?
    But ok, the same problem exists with ME/CFS. It's the name they use in the Canadian Consensus Criteria, but probably also a lot of people who have been diagnosed after the Fukuda criteria use it for themselves. Which, in this case, is ok, i guess.
     
  17. Tulip

    Tulip Guest

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    I really think all ME societies and patients need to put out AIDS like scare campaigns on this disease. People need to know what it is, that it's very serious, mostly lifelong and it is killing thousands and thousands of us. And it can happen to anyone. I'm sick of the sugar coated campaigns that come out every year, no one gives a stuff because they think it's "just" chronic fatigue.

    I don't think I can handle anymore abuse or medical neglect from doctors, after 19yrs of being sick i'm at the end of my tether. Things must change.
     
  18. eric_s

    eric_s Senior Member

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    What country do you live in, Tulip? I'm just interested.
     
  19. Tulip

    Tulip Guest

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    I'm in Australia, eric_s
     
  20. eric_s

    eric_s Senior Member

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    Ok, thanks. Maybe people there should start an association or is there one already? I know of one or two foundations, but i think there are things that you need members for, and so a foundation can't do it.
     

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