Severe ME Day of Understanding and Remembrance: Aug. 8, 2017
Determined to paper the Internet with articles about ME, Jody Smith brings some additional focus to Severe Myalgic Encephalomyelitis Day of Understanding and Remembrance on Aug. 8, 2017 ...
Discuss the article on the Forums.

Standing Up to Coyne and Against Unfair Treatment of ME Advocates

Discussion in 'Action Alerts and Advocacy' started by Ecoclimber, Mar 4, 2016.

  1. Ecoclimber

    Ecoclimber Senior Member

    Messages:
    988
    Likes:
    2,424
    Standing Up to Coyne and Against Unfair Treatment of ME Advocates
    By Edward Burmeister

    Many of you know that I seldom become involved in ME advocacy. My wife, Jeannette, is typically capable of holding her own. She has been, health permitting, a relentless advocate for ME for several years and has been effective in holding government agencies and officials accountable when their actions or inaction have damaged the ME patient community, and in particular when they have not lived up to their legal responsibilities. It is true that she has strong opinions on how to conduct effective advocacy and states her position assertively, but I can assure you that she makes it a priority to focus on the issues and to stay away from personal ad hominem attacks on other individuals advocating for ME. On the rare occasion when she has made a mistake, she was quick to apologize and set the record straight. Far from being self-promoting, Jeannette has gone out of her way to support and give credit to other patient advocates for their efforts. When her health allows, Jeannette collaborates with other advocates, typically behind the scenes. Among other things, Jeannette’s advocacy efforts seem to have derailed the massive price increase for Ampligen that was scheduled for next month, which according to the Ampligen study coordinator is now not going into effect for the time being...

    ...We are assessing what steps we should take to bring accountability for the described actions against Jeannette, but mainly I wanted to let the community know how strongly I feel about this and how directly it has affected our family. I should add that I have served as the Managing Partner of the Bay Area offices of Baker & McKenzie LLP, the world’s largest law firm, and have never witnessed this type of behavior towards a professional in comparable circumstances, particularly by an individual who, by education and profession, should be compassionate and caring....
     
    BEG, Karena, ahmo and 8 others like this.
  2. Kina

    Kina

    Messages:
    10,131
    Likes:
    17,218
    Sofa, UK
    This thread is being closed for Moderation purposes. It will be re-opened when it has been cleaned up.

    Thank you.
     
    Last edited: Mar 4, 2016
  3. Kina

    Kina

    Messages:
    10,131
    Likes:
    17,218
    Sofa, UK
    Every single post on this thread after the first one has been removed either due to personal attacks or because the posts are no longer applicable as the posts they were referring to have been removed.

    Time to start over.

    There is not going to be a moment where all members agree on the Coyne/Burmeister issue. How members choose to respond is up to them and every member is entitled to their opinion.

    What started this was a member commenting that it was 'time to move along'. Is it or isn't it? It all depends on each member and what their opinion is.

    This resulted in a few accusations:

    1. Accusing Phoenix Rising of 'squashing' the voices of 'a large part of community' and that nothing is being done about it.
    2. Accusing Phoenix Rising of becoming a totalitarian forum and that we allow the posting of only one sided views here.
    3. Accusing members of being mean-spirited for merely having their own differing opinions.

    We have an active membership of 450 to 500 members logging on to the forums every day. A small percentage of these members are commenting on the threads related to this issue. This small percentage of members have differing opinions and are entitled to those opinions. The only time the staff of Phoenix Rising is going to step in and disallow comments is if they are related to rule breaches.


    We are a forum.
    The exchange of ideas typically involves the differing opinions of many people. An exchange of ideas should not involve disallowing certain opinions.


    The underlying accusation here is that the moderation team is doing nothing about all of this. Members are offering their opinions and in most cases not breaching any rules. As a Moderator here, what do I do? -- start removing posts just because a member or a few members don't like them? Do we squash the freedom of speech of members who don't fall in line with certain opinions? Absolutely not!

    We are not doing 'nothing'. We are allowing our members to give their opinions in any way they see fit as long as the rules aren't breached. Do not ask us to be biased. Do not put the blame on our organization for allowing all voices to be heard.

    Totalitarian -- isn't that where a government does not tolerate differing opinions of parties and exercises dictatorial control. I would suggest it isn't Phoenix Rising being totalitarian in this case.

    We allow the differing views of all our members. We are a group of people who are often ignored, stigmatized and marginalized. Phoenix Rising is a place to share our views, no matter what they are. No member here should be personally attacked for merely having an opinion. We should be working together even though we have differing opinions.


    The only suggestion from the moderation team is that if you can't tolerate the opinions of other members here:

    1. Put members who are offending you on 'Ignore'.
    2. Accept that not everybody is going to have the same views and reply to the content of their posts rather than mounting attacks on individual members or the membership in general.

    Please avoid any further rule breaches on this thread and by rule breaches we mean personal attacks. Unfortunately, there were many members who chose to respond politely to the personal attacks on this thread and had their posts removed as 'no longer applicable'. We apologize for that.

    Any member here is free to discuss the blog by Edward Burmeister as long as it doesn't involve attacking other members. For the sake of peace, any member provoking and instigating further arguments on this thread will be banned from this thread.

    Please do not discuss this post on this thread. If you would like to discuss anything further related to generic moderation, you can start a thread in the Moderation forum or you can contact me directly.


    Thank you.
     
  4. Kina

    Kina

    Messages:
    10,131
    Likes:
    17,218
    Sofa, UK
    I have read Edward Burmeister's blog a few times now because there are some comments that really resonate with me for various reasons.

    No they shouldn't. Yet, there are patients out there who are very sick that come under a barage of attacks for the sole reason of trying to do something good for all of us.

    I agree with this 100 percent. What he said on twitter was outside the realm of any kind of acceptable behaviour. He could have simply said "I don't agree with what Jeannette said". He didn't. He verbally abused her. He then went on to verybally abuse any person with ME. I don't know if some healthy people know what it does to the health of an already sick person to be constantly vilified, put down, insulted for doing something they believe. The sad thing is that people with ME are attacking other ME patients with the knowledge that the constant insults are going to do them harm.

    The only thing that Jeannette Burmeister did was tweet her thoughts. It wasn't malicious. Some thought it might have been too much. It was a tweet for gods sake. Not a official declaration. Social media is that -- a way of communicating your own opinions. Coyne's response was OUT OF ORDER whether or not what you like or dislike what Jeannette tweeted. I truly believe that any person that engages in the character assassination of another person should look inwards and figure out why they are doing it. No person deserves to be sworn at, vilified, raked over the coals for merely having an opinion and promoting their beliefs.

    Edward Burmeister, when I read your blog I was absolutely blown away by the support you have for your wife. When a loved one is brought to the point of increased physical illness by all of this internet bullying, it's hard to stand by and watch it happen. The blog speaks volume.

    I feel very sad about all of this because I personally know how insults on the internet and constant bullying can adversely affect ones health.

    Abuse is unacceptable. Apologies are in order. Will that be enough. I doubt it.

    We are all human. We all deserve to be treated with respect whether ill or not. I really hate the unwarranted abuse on the internet by anybody at any time. It's not something that should be supported. Yes. Coyne has been trying to help out re: PACE. But threatening to withdraw his support due to one tweet is ridiculous, unwarranted and stupid. I support people helping us, I do not support abuse. Ever.

    My comments are my own personal feelings and have nothing to do with any stance that you think Phoenix Rising might have.

    I think our community needs to come together, discuss our differences and agree that our goal is to get funding for research, treatments, respect. We need to stop tearing each other down, put our differences aside and get together and make a huge advocacy impact. We can only do this by working together.

    How do we do this?
     
  5. leela

    leela Slow But Hopeful

    Messages:
    3,222
    Likes:
    7,232
    Couchland, USA
    I have been having my own fantasy-theory abut Coyne's bizarre responses.
    Besides reeking fairly strongly of alcohol-fuelled speech, it also could be due to the sudden increase and onslaught of patient attention and appreciation.

    I mean, think about being a regular (albeit fairly charismatic) academic science-nerd, writing a few blogs, and within a blink or two suddenly having
    a barrage of gratitude from hundreds, if not thousands, of strangers, for something you were not actually really doing. All of a sudden, (if you're not someone with a good deal of self-awareness) you may feel a panicked "Oh Shit, I now have to answer to these people. They see me as their saviour. What do I do now?"

    So you start to move in the direction you think they are asking of you, thinking, yeah, I could make a difference here, and the flow of praise and positive commentary continues, culminating in a thank-you letter signed by hundreds of people you've never met, heaping gratitude on you for something you don't really want or know how to do.

    Maybe some part of you is insecure. Maybe rather than face this "responsibility" which you see as thrust upon you, you sabotage the whole shebang by downing some whiskey of an evening and attacking the very people whom you "blame" for putting you in this position. And so now you're off the hook for something you never signed up for in the first place.

    Add to this you're of a generation where social media is not natural to you, when scientists rarely got any attention at all outside academic circles, and now the play is writ.

    (end of my made-up theory portion.)

    I think he's a good guy, with the best of intentions, who just couldn't take the perceived weight of what we as a patient community unwitting threw at him.
    He did us a huge favour by getting the PACE and general science-publication ball rolling, and I suggest we focus on that.

    Demanding apologies seems a bit emotionally immature to me--when has that ever worked or satisfied anyone? Only a spontaneous and authentic apology has any meaning, and sometimes that just takes time, and a good deal of courageous self-inquiry.

    Our well-being and progress in no way hinges on apologies being issued by anyone. It hinges on our steadfast commitment to monitoring the relevant agencies, speaking out, and especially encouraging the actions and decisions that are productive and hold promise.
     
    Last edited: Mar 5, 2016
  6. Mrs Sowester

    Mrs Sowester Senior Member

    Messages:
    1,033
    Likes:
    7,282
    @leela I have precisely the same theory about Coyne's motivations for last weeks behaviour.
     
    barbc56 and leela like this.
  7. leela

    leela Slow But Hopeful

    Messages:
    3,222
    Likes:
    7,232
    Couchland, USA
    We should start our own school of psychoanalysis, @Mrs Sowester :rofl:
     
  8. Mrs Sowester

    Mrs Sowester Senior Member

    Messages:
    1,033
    Likes:
    7,282
    All good points. And my answer to your last question is we can't know he isn't going to do this again. To be completely frank it is more than likely we will see a repeat. He hasn't apologised or explained. What's the phrase I'm looking for? Something like 'the best indicator of future performance is past performance'.
     
    ahimsa, jamie, Karena and 1 other person like this.

See more popular forum discussions.

Share This Page