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Save ME/CFS Patients: Dedicated Care Unit in Toronto Hospital Needed

Discussion in 'Petitions' started by shannah, Feb 13, 2017.

  1. Old Bones

    Old Bones Senior Member

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    @Barry53 I filled in the petition yesterday. However, when I reached the bottom of the screen and saw a link to the Terms of Service, I decided to defer submitting until I knew exactly what I was agreeing to.

    Here are a couple of links:

    https://www.change.org/policies/terms-of-service
    https://www.change.org/policies/privacy

    I am, perhaps, more strict than most in protecting the privacy of my online activities. For me, there were enough "red flags" to discourage me from using the Change.org platform. Here are a few statements from their documentation:
    • When you download and use our existing or future mobile applications, we’ll collect your unique device ID and all your account and activity information will be tied to that unique device ID.
    • We may obtain information about you from public records, publicly available databases, and third-party providers as described above.
    • We may obtain certain information through your social media accounts . . .
    • Third-party analytics providers: We use third-party analytics services like Google Analytics provided by Google Inc. (“Google”) and the Mixpanel service provided by Mixpanel, Inc. (“Mixpanel”). These analytics services use cookies and similar technologies to analyze how people use our services and compile statistical reports. Such services may also collect information about Platform visitors’ use of other websites.
    • We also share your first and last name and city with the person who initiated a petition you have signed, even if you select the option not to display your signature publicly. If you do not wish to have such information shared with the person who initiated the petition, please do not sign the petition.
    • We may identify you to the recipients of messages you may choose to send through our platform.
    • We may, in certain circumstances, share your name and general geographic location with the intended decision maker who is the recipient of the petition. If you do not wish to have this information shared with the petition recipient, you should not sign the petition.

    The content you submit on the platform is not confidential: Any content you submit or post on Change.org is likely to be publicly available, including all petitions you create and your comments to any petitions you signed (on the Change.org site, in apps and in social media pages). If you are concerned about other Change.org community members, or people you don’t know, seeing a particular message or other content of yours, please do not post it.

    By submitting and posting content, you do not lose any ownership rights you may have in your content. However, you authorize us to share this content with anyone, distribute it on any platform and in any media, and to make modifications or edits to it as we see fit.

    You also authorize us to allow others to do the same with your content. In legal language, by submitting or posting content on or through the Change.org platform, you grant us a worldwide, non-exclusive, royalty-free license (with the right to sublicense) to use, copy, reproduce, process, adapt, modify, publish, transmit, display and distribute your content in any and all media or distribution methods (existing now or later developed). This includes making your content available to other companies, organizations or individuals who partner with Change.org.


    My interpretation is that the Terms and Conditions and Privacy Policies favour Change.org and their many affiliates, and not the users/signers. For me, no matter how good the cause, signing petitions like this one is not worth the privacy risk. I encourage those with concerns to scan the above links and make an informed decision for themselves.
     
    Binkie4, Barry53 and TiredSam like this.
  2. Snowdrop

    Snowdrop Rebel without a biscuit

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    Re: @Old Bones post above.

    I'm with you.

    I really want better treatment and facilities for ME here too but 'change' is asking for way too much IMO.

    I'd go looking for better alternatives to this particular platform and if there are not any then I'm not sure what the possibilities are. I knew this from previous petitions that were on change but utterly forgot about it.
     
    Old Bones likes this.
  3. Barry53

    Barry53 Senior Member

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    Many thanks. Done.

    Edit: Hmmm ... now I have read some of the other posts on the subject.
     
  4. Snowdrop

    Snowdrop Rebel without a biscuit

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    Regarding the change dot org's policies related to personal info collected --I found this: https://www.change.org/policies/privacy#4

    I think it's important to know what info anyone collects and how they might use it. I expect it's a rather drawn out process to opt out of.
     
  5. Old Bones

    Old Bones Senior Member

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    And I just found this:

    http://www.konbini.com/en/lifestyle/change-org-data-mining/

    "Why You Should Think Twice Before Signing A Change.org Petition (mid-2016 article)

    But even though Change.org sells itself as a progressive non-profit, . . . it’s also profiting off it’s users big time.

    How much is your email worth?
    According to Italian magazine L’Espresso, Change.org is all but non-profit and sells user’s information to the highest bidder.

    No such thing as online privacy

    And, as it so happens, that the box is checked by default. Once you’ve “unknowingly” subscribed to an organisation’s e-mailing list, you’re no longer covered by Change.org’s privacy policy, meaning that organisation can sell your contact details and information to other organisations.

    With millions of users and hundreds of thousands of petitions, the company has unprecedented insight into the habits of online activists. As L’Espresso points out, if you sign an animal rights petition, you’re 2.29 times more likely to sign a criminal justice petition. And if you sign a criminal justice petition, you’re 6.3 times more likely to sign an economic justice petition, 4.4 times more likely to sign an immigrant rights petition, and four times more likely to sign an education petition. And so on.

    This, if anything, explains why your inbox is flooding with spam emails you don’t remember signing up to. And it also means you might want to go through Change.org’s privacy policy with a fine tooth comb before agreeing to their terms and conditions.


    And this site, which gives Change.org only 17 percent approval from users:

    https://www.sitejabber.com/reviews/www.change.org

    “Change.org is a for-profit corportation” 11/13/16
    They are NOT a not-for-profit. They sell your information to third party companies.


    And from the BBB (Better Business Bureau):

    Change.org, Inc. has received 1.00 out of 5 stars based on 5 Customer Reviews and a BBB Rating of F
    Negative Customer Review Rating: 100% based on 5 reviews and 17 complaints
     
    TiredSam and Barry53 like this.
  6. shannah

    shannah Senior Member

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    Thanks for all of your research and enlightenment on the topic of Change.org @Old Bones and @Snowdrop . Perhaps you could do up a separate posting for all to benefit from what you've learned.

    With 2600 signatures, it's not likely to be switched to another petition site and as I mentioned earlier, this is not my petition but one that was started a while ago. The woman who started it is now bedbound and very ill and we're just trying to circulate it to bring up the numbers for her, raise awareness amongst the politicians and public in Canada and continue to cultivate the avenue she started. Each time it's signed, the stated politicians receive an email.

    I agree the information you've posted is enough to scare anyone off; however, I have signed other Change.org petitions over the years and have had no problems with them.

    Best to all and thanks to those who sign. ♥
     
    AndyPR and MeSci like this.
  7. *GG*

    *GG* Senior Member

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    I understand, I signed as well. I am no Progressive, so they can mine my data all they want, not going to bare much fruit ;)

    Perhaps people can start a better site to Petition the Canadian Gov't? The USA has this:

    https://petitions.whitehouse.gov/

    GG
     
    Last edited: Feb 15, 2017
    shannah likes this.
  8. shannah

    shannah Senior Member

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    Thanks for signing and for your thoughts @*GG*
     
  9. Snowdrop

    Snowdrop Rebel without a biscuit

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    I appreciate and understand completely that the originator of the petition would use this platform. The issue is one that needs attention.
    Sadly, Change.Org is behaving badly and their terms show a definite lack of altruism.

    I wish I knew a better solution. I will try and remember to ask around should the opportunity arise. We depend on petitions a lot. I periodically experience petition fatigue.
     
  10. Old Bones

    Old Bones Senior Member

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    I agree. But also, my posts above were not intended to "single out" Change.org regarding their Terms of Service or Privacy Policy, nor to criticize the person who initiated the petition. I suspect other petition platforms operate similarly. Unfortunately, making ourselves available for data mining, and loss of privacy, are among the prices we pay for many of the "free" services we enjoy online, and elsewhere, as a result of technology.

    For example, one of Canada's largest food and pharmacy conglomerates has a rewards program -- like many retailers these days. Recently, I've been encouraged to sign up for their points program at every visit. I considered doing so until I read their privacy policy, which looks very similar to that of Change.org. This was particularly concerning, since it would make my medical records/conditions available to countless unknown others through prescriptions purchased in their pharmacy. The measly 0.1 percent I'd earn on purchases just wasn't worth it. I wonder how many people realize the extent their privacy is compromised in such situations. As the saying goes: "There's no such thing as a free lunch."
     
    Last edited: Feb 15, 2017
    TiredSam likes this.
  11. Snowdrop

    Snowdrop Rebel without a biscuit

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    Here my brain fails me. I had read Change's privacy statement previously with regard to a different petition and decided not to sign. This time I did not even think of what I decided last time. Also, if I signed other petitions I do not recall what I read about their policy.

    I do think it's a good idea in general to expect that Change's policies are not unique. This is how business is done. However I do think it's worth exploring other options (I say that knowing the limited energy all round).
     
    MeSci likes this.
  12. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    Whilst I don't like the look of Change's site, I've been signing petitions with them for years, and am not aware of any problems, although I do get silly emails sometimes (not many). I did fall victim to a scam once, but once bitten twice/many times shy!
     
    *GG* likes this.
  13. TiredSam

    TiredSam The wise nematode hibernates

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    That's the whole point of reward programs - to collect data on customers. I don't have any reward cards.
    http://www.bbc.com/news/business-30095454
     
    Old Bones likes this.
  14. shannah

    shannah Senior Member

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    Getting back to the topic of this particular petition for a moment, it is over 5 years old yet is sitting at 2377. Obviously, something of this nature is much needed in the ME community, yet why has it done so poorly?

    The Canadian Lyme community released a petition this week, (on Change.org by the way), and after just a few days has surpassed 20,000 signatures.

    https://www.change.org/p/minister-p...b-in-canada-fix-canada-s-lyme-action-plan-now

    Why the vast difference? Especially when both communities face many of the same kinds of problems!

    Some possible reasons for the wide variance may be that the Lyme community in Canada is better organized, possibly larger numbers with more of them.

    They are definitely louder! Is that because they are less ill? More Energy? More angry? Less tolerant of injustice?

    Why the vast difference between the two?

    Thoughts? Opinions?
     
    MeSci and AndyPR like this.
  15. Old Bones

    Old Bones Senior Member

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    @shannah I feel particularly responsible for this thread getting "off topic" as a result of my response to @Barry53 's question. So, to make amends . . . .

    I, too, was surprised by the low support, especially considering the petition was started more than five years ago. You raised some excellent questions in the context of a Lyme patient petition surpassing 20,000 signatures in a few days. Why the difference?

    The following is based only on my perceptions about Lyme which, as a non-Lyme person, may be just as incorrect as non-ME people are about our disease. If I "put my foot in it", please excuse my ignorance.

    It seems Lyme disease gets more attention in the media than ME does. For ME, one has to search for the articles, and they are few and far between -- especially those that are accurate. Among my extended family members, everyone has heard about Lyme, but not about ME. Most of us can probably name at least one prominent (famous) Lyme patient. And, probably more people personally know a person with Lyme disease than one with ME.

    Although there are many Lyme deniers, most who are aware of the disease and its devastating effects know it to be an infectious tick-born disease. But what do they think about the cause of ME? Even the doctors and researchers don't know, or can't agree. And, although availability of good-quality Lyme testing is spotty, and their accuracy questionable, at least there are tests that can, for some people, provide a definitive answer. This provides some credibility.

    Also, although Lyme patients have difficulty getting treatment (depending on where they live), at least the general population understands treating diseases with antibiotics. What do they understand about ME when the most-recommended "treatments" are CBT and GET?

    Many who follow the science of climate change are aware of concerns regarding the spread of ticks carrying bacteria that cause Lyme. People understand, and respect, disease caused by bacteria. They realize their own vulnerability. "You could be the next BITE" from the Lyme petition is a powerful statement.

    So, for the general population, Lyme is better known, has a diagnostic marker, and is potentially treated. But what about people with ME not supporting a petition about ME?

    Regarding this particular petition, it seems the cart has been put before the horse. Why do I say this? Because, until our disease is recognized, it seems fruitless to ask for dedicated care units in hospitals. I'm not disputing the need; in fact, we also need specialized care for ME patients in other facilities. Seniors homes come to mind.

    In the past month while getting test results, I experienced, twice, how poorly ME is understood by otherwise excellent specialists. When they told me: "I'm sure you're glad we've ruled out cancer" and "At least you don't have MS", they probably expected me to be more relieved than I was. Instead, I was disappointed they considered this to be the end of their involvement in my health care.

    We'll know our disease has finally achieved the attention and medical support it deserves when other patients are told: "At least you don't have ME." That's a long way away, and until things change in this regard, petitions directed towards government officials are unlikely to have much impact. We need to get the doctors, medical researchers, and general public on our side first. Perhaps that's why support for petitions such as this one is so low. With limited resources, those with ME may only participate when they think the initiative is likely to encourage change. So far, Health Minister Philpott has demonstrated that supporting the needs of those with ME is a very low priority. The money for health care and research is there -- just not for us, and often not even to be spent in Canada, or for Canadians.
     
    Binkie4 and MeSci like this.
  16. shannah

    shannah Senior Member

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    Hello @Old Bones,

    and thank you for your well thought out reply covering so many points. I appreciate you jumping in and your input is always valuable. I'm sure you're quite right about each of these factors having an influence.

    Like many here, I have a dual diagnosis of ME and Lyme so keep my eyes on both worlds.

    I guess I'm thinking if ever there was a time for the Canadian ME community to speak up and participate in raising our collective voices, now would be an opportune moment, after the recent success of obtaining an upcoming meeting with the Health Minister. In lieu of having a well known disease, high profile celebrities or a well laid out strategy as of yet to gain recognition for ME, I would think that the community would be willing to raise their voices to raise the profile of ME by whatever means and opportunity came along.

    After all, that is what the Lyme community did for years and years. It's only been the last few years that their fighting and efforts have paid off for them and they've managed to finally gain a foothold and now have become the more powerful group they now are. HIV did the same thing.

    But it seems like it's back to preferring to post about kittens and flowers. It's disappointing. This path has not served us well in the past.

    Thanks again for offering your thoughts.
     
    Binkie4 likes this.
  17. Old Bones

    Old Bones Senior Member

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    @shannah Am I correct in assuming the upcoming meeting you mentioned above relates to the commitment @ScottTriGuy secured during the protest at her meet-and-greet event in Markham on January 14? Has the meeting with Health Minister Philpott been scheduled? If so, when?

    It seems to me personalized emails or letters from ME patients describing their experiences in our health care system might have more impact than electronic signatures on an on-line petition. Doing so is something I am considering, either in the short time-frame leading up to the meeting, or afterwards to say thanks.
     
    Binkie4 likes this.
  18. shannah

    shannah Senior Member

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    I think there's room for all kinds of strategies, in all kinds of areas and for progress to happen - probably ALL are needed.
     
    *GG* likes this.
  19. AndyPR

    AndyPR Senior Member

  20. shannah

    shannah Senior Member

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    Wonderful!

    That's an additional 300 signatures showing support for ME and the specialized needs of those ill with it. Each signature triggers six emails sent to Canadian politicians making ME a more familiar name to them.

    Instead of the perplexing, "What is it you have?", someday the response will be "Ahhh yes, I know what that is!"

    Thanks for the update @AndyPR !
     
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