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!
Patient Experience: "What Bronllys taught me about pacing."
In 2012, Maya, who had tried to cope with ME/CFS on her own for many years, attended a pain management centre in Wales, U.K., and is now able to achieve more through pacing and acceptance, than she had been able to before the course...
Discuss the article on the Forums.

Advocacy idea

Discussion in 'Advocacy Projects' started by taniaaust1, Jan 2, 2014.

  1. taniaaust1

    taniaaust1 Senior Member

    Messages:
    7,726
    Likes:
    4,564
    Sth Australia
    Ive been hanging out of late at a advocacy website and its great and Im thinking why isnt any ME/CFS advocacy going on there??? There is a huge wasted ME/CFS opportunity there. It would help make our plight known to the general public more (there should be an ongoing petition too due to the OMI situation.. there is enough bullshit there to really gain public attention to us .. read Jeanettes latest letter on the OMI situation for more info).

    Anyway. the site Im thinking we should be ultilizing is called www.care2.com (which is meant to be the biggest online advocacy place). Its a great site as one gets points rewards for commenting on posts and with signing petitions and these points then go towards good causes eg clean water, plant a tree etc. Lots of caring heart there who would be interested in hearing of our plight.

    Im wondering if someone could do a news article there on the OMI situation and link that to a petition there. Can anyone do a good news article on the OMI situation which would interest general public?
  2. Kati

    Kati Patient in training

    Messages:
    1,829
    Likes:
    899
    @taniaaust1 you probably meant IOM, the Institute of Medicine and not OMI, Open Medicine Institute- big difference...

    Personally I am very tired of petitions.
  3. alex3619

    alex3619 Senior Member

    Messages:
    6,806
    Likes:
    10,338
    Logan, Queensland, Australia
    I sign petitions on several of these sites. It has always been my intention to do something like this, but you need a very very specific thing to focus on. The current IOM situation is not very understandable until you delve deep into the politics and history. Now if we can demonstrate concrete harm to someone, even one individual, then we can do something to try to make a difference.
    beaker and Nielk like this.
  4. caledonia

    caledonia

    Messages:
    2,722
    Likes:
    1,313
    Cincinnati, OH, USA
    There have already been two petitions and they were presented to the govt. by Susan Kreutzer who flew to Washington DC during the CFSAC meeting. There is a Youtube video of her presentation, which was posted on here.
    beaker likes this.
  5. alex3619

    alex3619 Senior Member

    Messages:
    6,806
    Likes:
    10,338
    Logan, Queensland, Australia
    Its ME and CFS patients, advocates, doctors, researchers and their friends and colleagues who signed the IOM petitions and letters. To use care2 or change.org or any other group effectively requires you have a message that the general public can understand. Our position as ME patients is very hard to understand until you learn a whole heck of a lot. Just look at how many patients are unaware of the implications of the IOM action, I keep meeting them.

    That is why I emphasize specific concrete issues. Take ONE patient. Use them as an exemplar. Fight for them, and for sufficient change that no other patient has to endure what they endured. We need a "poster child", though they can be in any country, any age, male or female or even transgendered. We need something concrete that can be readily understood.
    Nielk likes this.
  6. taniaaust1

    taniaaust1 Senior Member

    Messages:
    7,726
    Likes:
    4,564
    Sth Australia
    Yes I know.. but I think that we need ongoing petitions, we cant just do a little bit of advocacy and give up. We need more people supporting our cause.
  7. taniaaust1

    taniaaust1 Senior Member

    Messages:
    7,726
    Likes:
    4,564
    Sth Australia
    Thanks. I'll probably forget again. I had no idea of what the 3 letters stand for as I keep forgetting. Im glad people can work out what Im talking about.
  8. taniaaust1

    taniaaust1 Senior Member

    Messages:
    7,726
    Likes:
    4,564
    Sth Australia
    Yeah I agree, one needs a specific thing, which one can get people to understand and thirdly which will pull on peoples heart strings so they will support.

    Due to the complex nature of the IOM situation, hence I dont think just a petition is good enough so there would also have to be a simple news article on the site about it to link to the petition so people can understand what is going on a bit more. Mention GWS and what happened there with non experts defining their disease.. we gain even more attention to our plight.

    Even if we only get throu that NON experts are trying to form a medical definition for a complex disease when experts have already supported a definition.. maybe that would be enough, it would make people think "what" that's not right.. why are non experts making definitions for complex illnesses?. but yeah.. we would need to keep it simple (not make it sound too conspiratory unless we drag something in which people can understand eg insurance companies before this and that our system is warped due to that) and just get people to see its unfair even if they dont understand all of it.

    We would need someone very good at writing and simplifiying things to do that news story (so its something I certainly wouldnt be able to do). It would be a pity not to use the current situation which will affect people on a world scale. Its a big story, something which will affect far more then one. I suggest to maybe keep the politics and keep the history out of it if doing something on IOM as it gets too confusing for the average non ME/CFS person to grasp.. and stick to simple facts going on RIGHT NOW which will make people start to question what is going on eg why is non experts making illness definitions when experts have already agreed on one..

    If we want to keep it extremely simple we could just petition that non experts shouldnt be making definitions for ANY disease.. including ME/CFS, including GWS. That could work and is simple for people to understand and support. There is no reason why we couldnt do this.

    All I know is that we need to start involving human rights advocates in ALL the things happening now be in someone locked up just due to ME or be it non experts doing medical definitions for complex illnesses (something most people wouldnt like the thought of..doing this to GWS and ME/CFS is just a start..what next?) and that is where many advocists are.
    Last edited: Jan 3, 2014
    alex3619 likes this.
  9. taniaaust1

    taniaaust1 Senior Member

    Messages:
    7,726
    Likes:
    4,564
    Sth Australia
    There is that case currently at this site (forgot her name now) but of a female who is currently locked up due to having ME but who hasnt got any mental issues. Someone could write a good article on that and include the history of ME of this kind of abuse eg Alison Hunter etc and this going on.. and make a point things havent changed. This situation could gain a lot of support esp since people in the past have died (it help spreads awareness of the serious nature of our illness too).

    But that is a different case of course. Im currently quite concerned concerned about the OMI situation and think we urgency need to be doing more around that and know we need more advocates backing us and think we should be thinking more about how to get those involved.
  10. lnester7

    lnester7 Seven

    Messages:
    1,159
    Likes:
    1,029
    USA
    I think there is a great opportunity of education by sharing those aljazeera video on CFS, I am planning to post on every friend I have on Face Book.
    taniaaust1 likes this.
  11. taniaaust1

    taniaaust1 Senior Member

    Messages:
    7,726
    Likes:
    4,564
    Sth Australia
    Actually I like the idea I just come up with.. and I really want do this and want to try to set up a petition demanding that experts (not non experts in things!!) should ONLY be used to define disease, it doesnt matter what disease... experts only.

    Does anyone here want to help me write out something simple around this with some good links to back up what happened in GWS (for those advocates out there which want to look further into this petition). Who to should the petition be too on this, if we are petitioning for experts only to be defining diseases? (and then mention ME/CFS as a side line thing, it may be enough to bring attention to what is going on and get human rights orgs involved! If we had one of those big human rights orgs on our side, half our battle would be won)

    By making the petition broader like this (and easy enough for a child to understand).. we can get FAR MORE support as it then becomes something which could end up impacting anyone no matter what they have.
    .................

    We got to stop thinking that things are too hard and start simplifying.

    We NEED to be getting the general public involved (those which want ME/CFS buried get them involved all the time by using the media and knocking us, we need to involve general public too if we have any hope of winning the battle for truth and justice).
    Last edited: Jan 3, 2014
  12. taniaaust1

    taniaaust1 Senior Member

    Messages:
    7,726
    Likes:
    4,564
    Sth Australia
    okay.. I need some help to do this.

    1/ Who do I send this petition against non experts defining illnesses/disease to?

    2/ anyone got some good ideas hitting titles for such a petition? Maybe if Im keeping this simple as possible it could simply be "STOP diseases from being defined by non experts". Actually that sounds alright and is clear and would gain attention.

    When Ive come up with something.. I will need people to proofread as its going to be full of mistakes and I think its very important for their not to be any mistakes in it. (I know Im put off of signing petitions when there is mistakes in them).

    (some good links for simple added info around this going on would be good if anyone has them... has GWS situation been put in any of the major newspapers over what happened to them with this?).
  13. taniaaust1

    taniaaust1 Senior Member

    Messages:
    7,726
    Likes:
    4,564
    Sth Australia
    How's this sound.. I have few gaps and mistakes as I cant think of words

    "

    Have you got health problems? We are all at risk.

    Crazily, diseases are starting to be redefined by non experts with experts in diseases being ignored. Is this sensible? How would you feel if a disease or health issue you have is defined by non experts in the problem? I know I and many others hate this idea and would like public support to say No!! to non-experts defining disease. This just shouldnt be happening. Please sign this petition and help put a stop to this going on.

    Why is this going on? Simply money - Health insurance companies and others want to keep some diseases buried and are determined to play things down so they are using non experts to consensus new medical illness definitions even when experts already agree on a definition.

    So far this has been done in GWS (they changed the name to muti-illness ??? which has upset many of the vetarns) and now they are using non experts to do a new definition for ME/CFS when there is now consensus agreement of medical professions to use the Canadian Consensus Criteria for that disease. I have to ask.. what next? What illness/disease is going to be pulled apart next by non experts?. It could be something your family or loved one has.

    I say that diseases should always be defined by only by experts in the disease being redefined and never by non experts. If you agree with this statement please sign."

    can someone please tell me if I have the correct name for what GWS has been changed to?
    Please point out any spelling errors or mistakes I have in this?
    I plan to at the bottom provide a link to the letter from the ME/CFS experts calling for use of the CCC. Other ideas welcome.
  14. Ember

    Ember Senior Member

    Messages:
    1,728
    Likes:
    1,777
    Here's an edited version:
    Make of my editing what you will...:angel:
    Last edited: Jan 4, 2014
  15. taniaaust1

    taniaaust1 Senior Member

    Messages:
    7,726
    Likes:
    4,564
    Sth Australia
    Thanks Ember. Your last line is certainly cleaner then the one I had. Im thinking about bolding more in that last paragraph.. eg always be defined by experts in the field rather then just the word "always".

    Im a bit worried that it the meaning of it could be twisted.. by "experts in the field" they could say that the ones on the panel who isnt someone familiar with ME/CFS is still an "expert in the field" as she's an expert in forming defintions for illness.

    but yeah I do agree its better leaving out that other bit you left out and the more advanced words you added in makes it sound better too. I'll change it and post it with the changes and see what others come up with.

    I still need to know where it would be best to send such a petition too?
  16. taniaaust1

    taniaaust1 Senior Member

    Messages:
    7,726
    Likes:
    4,564
    Sth Australia
    altered version

    "Have you got health problems? We are all at risk. Diseases are increasingly being redefined by non-experts while experts are being ignored. Is this sensible?

    How would you feel if your disease or condition were being redefined by non-experts in the field? I and many others abhor this practice. What's behind it? Money! Health insurance companies and others hope to bury some diseases.

    Already Gulf War Syndrome has been renamed Chronic Multi-Symptom Illness, upsetting many veterans with treatment recommendations being made by non-experts. Now a committee comprised mostly of non-experts in ME/CFS has been charged with redefining this disease, despite a consensus among ME/CFS experts seeking instead to adopt the Canadian Consensus Criteria.

    What disease or condition is going to be redefined by non-experts next? Could it be one that afflicts your family or loved one?

    Diseases should always be defined by experts in the disease and never by non-experts. If you agree, please sign this petition! "

    ..................

    I added a little bit into the new version so people can see these non-experts do more then just go and change illnesses names eg "Already Gulf War Syndrome has been renamed Chronic Multi-Symptom Illness, upsetting many veterans with unsuitable recommendations being made by non-experts."

    Any other comments on this or suggestions?
    thanks again ember. I think your changes have really improved it.

    Edit.. have since changed the wording of "unsuitable recommendations" to say instead "treatment recommendations" which sounds a lot better as it cant be disputed by anyone in any way at all.. being simply a fact
    Last edited: Jan 4, 2014
  17. taniaaust1

    taniaaust1 Senior Member

    Messages:
    7,726
    Likes:
    4,564
    Sth Australia
    what sounds better out of the options below. I dont want to use the world "field" as the meaning could be twisted in the way I explained in another post.

    Diseases should always be defined by experts in the disease and never by non-experts
    or

    Diseases should always be defined by experts in the condition and never by non-experts
  18. taniaaust1

    taniaaust1 Senior Member

    Messages:
    7,726
    Likes:
    4,564
    Sth Australia
    Im lost to where I should say this goes too and where to send it too. I thought about to the Presidents science advisors but Nielk has written on other threads, the following info when doing that

    "Go to: http://www.whitehouse.gov/administration/eop/ostp/contactus

    Where it says 'direct your comment'; choose PCAST for Presidents science advisors ".

    So how does putting a petition on care2 do that with the PCAST thing if its sent automatically once it gets to a certain number of signataries? (I havent put a petition up before so have no idea). Does one need a straight email address?

    Please someone advise where to send it .. best place? an email address?
    ..............

    shoving the link to the experts letter here so I can add that easily later to the poll info (I'm glad to see that the experts which got into the act later have been added to the others)
    https://dl.dropboxusercontent.com/u/89158245/Case Definition Letter Sept 23 2013.pdf
    Last edited: Jan 4, 2014
  19. caledonia

    caledonia

    Messages:
    2,722
    Likes:
    1,313
    Cincinnati, OH, USA
    There is something in the works. I don't know how much I can say right now, so I'm being purposefully vague. But you should be seeing something pretty soon.

    ps. Great idea. Keep 'em coming. We're going to need to be creative given our limitations...
  20. taniaaust1

    taniaaust1 Senior Member

    Messages:
    7,726
    Likes:
    4,564
    Sth Australia
    That's great to hear that something is in the works. The more outcry about it the better.
    ..........

    I know noone has said anything about this yet but Im sure some are thinking about this. I dont think the petition Im setting up will mess with anything else (something I thought deeply about before deciding on what to exactly do it on) as its so specific to just one thing and one part of the IOM situation and doesnt even mention the word IOM in it. The petition Im doing is a needed call out against something which end up affecting any illness (but just so happens to support our case at the same time). Its bringing together our issue with what could happen to others too.

    I think we need to tackle the issue we have from many different directions and in many different ways. I know some here will be thinking "oh no not another petition" as many in this community is sick of signing petitions but justice advocates at sites like signing petitions, actually like supporting good causes and could sign several different kinds of petitions which would help us. They arent sick patients being forced into doing what they need to do (eg advocacy out of desperation) but do advocacy and petition signing as its who they are ..people who like to help and want to make the world a better place.

    Im hoping the one Ive done will act as a lead in (like help pave the way) to general community others understanding our outcry at IOM when they see ME/CFS petitions on this. (Its like playing chess..careful moves and stradegies are needed... one thing alone is never going to work. The other side well plans how to send us down, every move they make is well planned. We need to engage our struggling brains to that same kind of level to effectively break free of all the bullshit we face. Action and good planning with working together can set us all free)
    Last edited: Jan 4, 2014

See more popular forum discussions.

Share This Page