The power and pitfalls of omics part 2: epigenomics, transcriptomics and ME/CFS
Simon McGrath concludes his blog about the remarkable Prof George Davey Smith's smart ideas for understanding diseases, which may soon be applied to ME/CFS.
Discuss the article on the Forums.

MEAdvocacy.org Update and a Call for Continued Support

Discussion in 'Phoenix Rising Articles' started by Nielk, Feb 23, 2015.

  1. Nielk

    Nielk

    Messages:
    6,877
    Likes:
    10,607
    Nielk submitted a new blog post:

    MEAdvocacy.org Update and a Call for Continued Support

    Gabby Klein reports on news and updates from MEadvocacy.org ...


    I have tried raising money by asking for it, and by not asking for it. I always got more by asking for it.”
    - Millard Full



    [​IMG]


    ME Advocacy has been very busy implementing new projects and are seeking your continued support for their upcoming projects.

    Thank you for your support of MEadvocacy.org. Because of your efforts, they have been able to get their PR project off the ground and have been busy implementing a wide range of projects outlined below.

    We have seen in the past couple of weeks with the IOM roll out and subsequent media blitz just how important our image in the media is.

    Some of the comments on articles have been extremely disturbing. We need to combat this negative slant about our disease. Please take the time to read the updates and continue your generous support for the next month’s projects.

    Here is an update on the work of our PR firm from Crowds On Demand CEO, Adam Swart:

    Goal #1: Press Coverage

    We have contacted dozens of heath reporters regarding the IOM meeting. We are currently pitching these outlets in regards to writing a human interest story discussing patients’ experiences, why the new name is problematic and why despite the fact that the IOM meeting was a good first step, adjustments are needed for it to become accepted by both the patient and medical communities.

    Goal #2: Presence at Key Events

    Picketers were present at the Opening Day of the new Congress in January. Moreover, we had a spokesperson speak on our behalf and deliver remarks and questions at the IOM Meeting on February 10th, 2015. A photograph of Wendy, our spokesperson, entering the meeting is at the top of this article. As well, you can see her ask two of our questions at about 47 minutes into the
    IOM meeting video.

    Goal #3: Lobbying Efforts

    We are planning a Day of Action in mid-March to capitalize on the IOM report which will include demonstrators around the Capitol office buildings and lobby visits with members of Congress.

    Goal #4: Increased Awareness

    The media coverage we received is complemented by radio ads running in markets across the United States highlighting the severity of the condition and the need for a comprehensive solution. In the aftermath of the IOM report, these ads will focus more on the need to research a cure, and for more substantive action on the issue.

    Goal #5: Going-Forward List of Patient Demands

    We are putting together a list of five demands for dealing with the disease going forward again capitalizing on the IOM Report. Those include among others, substantial funding to research a cure. This list of demands will be widely circulated to members of the media and posted on strategic blogs.

    # # #

    We are fundraising as we go along, so if you want this campaign to continue past February, we need your donations now! Our goal is an additional $4100 for a total of $15,000 on the leaderboard by February 27, 2015.

    [​IMG]


    Please donate to MEadvocacy.org here.




    Phoenix Rising is a registered 501 c.(3) non profit. We support ME/CFS and NEID patients through rigorous reporting, reliable information, effective advocacy and the provision of online services which empower patients and help them to cope with their isolation.

    There are many ways you can help Phoenix Rising to continue its work. If you feel able to offer your time and talent, we could really use some more authors, proof-readers, fundraisers, technicians etc. We’d also love to expand our Board of Directors. So, if you think you can help in any way then please contact Mark through the Forums.

    And don’t forget: you can always support our efforts at no cost to yourself as you shop online! To find out more, visit Phoenix Rising’s Donate page by clicking the button below.

    [​IMG]
    Continue reading the Original Blog Post
     
    Last edited by a moderator: Feb 23, 2015
    melamine and Wally like this.
  2. dancingstarheart

    dancingstarheart

    Messages:
    50
    Likes:
    98
    Midwest USA
    I thought the questions proposed my the MEadvocacy representative, Wendy, provided some interesting insight behind some panel members personal opinion on nature of the disease. I think it also precipitated the IOM to shut down comments rather early. Only one comment was taken from the web after Wendy's questions, and then the Q&A was prematurely stopped even though there were several unanswered questions in the queue that I know of personally. There may have been many more.
     
    catly, melamine and Nielk like this.
  3. Wally

    Wally Senior Member

    Messages:
    703
    Likes:
    1,472
    Yes, I thought it was very odd that the Q&A stopped early, especially because I had my questions acknowledged as being in the queue. I called the ME/CFS I.O.M. Committee phone line and left a message inquiring as to what happened and asked if they would be addressing those unanswered questions via the ME/CFS I.O.M. website. No return call has been received. :( I have talked to the staff for the ME/CFS I.O.M. Committee via this telephone number before and they always answered the phone or promptly returned my call. Not sure why this time I have not received a response? Moving on to e-mail to see if a written communication will illicit a response. :rolleyes:

    Not to take this thread too far off topic, I will bring a comment back to the main subject of the original post.

    I just donated to the MEadvocacy.org PR campaign and I am hoping that others might join in as well, so we can try to do something different than has been tried before with patient advocacy efforts. The clock is ticking (donations are needed by Friday, Feb. 27th). We may never get another opportunity like this again to grab some serious media attention and keep the ball rolling up to the top of the "Hill".

    https://meadvocacy.nationbuilder.com/donatepr

     
  4. snowathlete

    snowathlete

    Messages:
    3,312
    Likes:
    14,610
    UK
    Thanks Gabby, for providing this update .

    Do you know more about Goal #3? What's the aim, the message(s), of this lobbying exactly?

    #4. The radio ads sound great too, but again, do you know if there is more info on this? Perhaps a copy to be made available on the site? So that people know what it is being said?

    These details would help me decide whether to lend my support or not.
     
  5. caledonia

    caledonia

    Messages:
    4,203
    Likes:
    3,223
    Cincinnati, OH, USA
    Last edited: Feb 25, 2015
    snowathlete likes this.
  6. Sasha

    Sasha Fine, thank you

    Messages:
    12,778
    Likes:
    34,181
    UK
    What has MEAdvocacy done to ensure that this goal reflects the wishes of the patient community?
     
    Last edited: Feb 24, 2015
    Mark, beaker, SOC and 4 others like this.
  7. snowathlete

    snowathlete

    Messages:
    3,312
    Likes:
    14,610
    UK
    Thanks for providing that information; it was very helpful.

    I find it disapointing that the group's focus remains on trying to get myalgic encephalomyelitis recognized as its own distinct disease - separate from SEID. Unfortunately I don't feel these endeveours will prove fruitful or beneficial to the community.

    I also don't share the groups conclusions regarding the IOM report, and your decision to continue an opposing stance having now seen the report.

    So, whereas I do feel the community would benefit greatly from an organized advocacy group with a moderate and progressive ideology, I am afraid I no longer see you as that kind of group, so I have to withdraw my support.
     
    beaker, SOC, Kati and 2 others like this.
  8. Nielk

    Nielk

    Messages:
    6,877
    Likes:
    10,607
    As you have bolded, the comment stated that they have listened to the ME community - meaning the patient community that consider their disease as ME not CFS nor SEID. That community exists and is quiet large. It mainly consists of severely effected patients who have been totally neglected as far as any research and studies. They do have a voice and needs. They feel that the IOM criteria whose first symptom features fatigue, is not describing their own illness.

    They have a right to voice and fight for what they believe in just as much as the group who are embracing the IOM report and criteria.
     
    melamine and oceiv like this.
  9. Ember

    Ember Senior Member

    Messages:
    2,082
    Likes:
    2,328
    Many thanks to our volunteers: Mary Kindel, Joni Comstock, Anne Keith, Kathryn Stephens, Gabby Klein, Robin Funk, Tom Jarrett, Colleen Steckel, Lisa Petrison, Tracey Ann-Tempel Smith, Polly Gilreath, Jerrold Spinhirne, and Mindy Kitei.:balloons:
     
    melamine and Nielk like this.
  10. Sasha

    Sasha Fine, thank you

    Messages:
    12,778
    Likes:
    34,181
    UK
    I'm hugely surprised by that definition of 'the ME community'. I think that most people who hear that term would take it to mean, 'the community of people diagnosed with ME' rather than 'people who want their diagnosis to remain as ME'.

    If MEAdvocacy are going to use the term 'ME community' in such a peculiar way, I hope that they're going to make it clear in the media that they don't represent the community of people with a diagnosis of ME.

    That is, I hope they're not going to try to claim that they represent our community as a whole.

    Nobody (I hope) wants to stop anyone from having their say, but I hope we're not going to see such misleading wording being used to falsely bolster one particular view. I hope that MEAdvocacy don't want that either and will be very careful in their phrasing.
     
    meadowlark, beaker, SOC and 3 others like this.
  11. Nielk

    Nielk

    Messages:
    6,877
    Likes:
    10,607
    In the US, there is no official diagnosis of ME, yet. WHat I meant was the patients who fulfill the criteria of ME-ICC.

    I am sure that they will properly advocate for us as a group of advocates and patients.

    I would hope as well that the patients and advocates who are proponents of the IOM report, criteria and name take care as well not that they are not speaking for the entire community.
     
    melamine and oceiv like this.
  12. Sasha

    Sasha Fine, thank you

    Messages:
    12,778
    Likes:
    34,181
    UK
    But I still think that 'ME community' is going to be read as 'patients with ME', not 'patients who want to keep the diagnosis of ME'. I hope MEAdvocacy is going to take a 'we are a group of patients, mostly severely affected, who would like to see X, Y and Z' kind of approach, rather than claiming to represent all ME patients or all severe patients. Wording is going to be extremely important.

    I agree that that's also important. It's easy to fall into the error of believing that our own view is the view of the vast majority, when in fact it's just that our human nature has led us to surround ourselves with like-minded people and seek out confirming viewpoints (and I include myself in this).

    Looking forward to seeing how this develops but in the meantime I'm grateful for the clarification on MEAdvocacy's goals.
     
    oceiv, beaker, SOC and 1 other person like this.
  13. Kati

    Kati Patient in training

    Messages:
    5,462
    Likes:
    19,549
    I have been skeptical that ME Advocacy represented patients, all patients interests. It sounds like I am right.

    ME advocacy is taking a wrong turn here. Spending energy to protest the work of our experts in working with thee very reputable IOM is a big mistake.

    Promoting the MEICC, which has never picked up in the medical community, is a big mistake and will only be confusing for congress if it gets there.

    ME terminology is not appropriate. It leaves neurologists disbelieved. Neurologists have never been interested in caring for us. The ME name is not accepted.

    I am withdrawing my support from ME Advocacy. They do not represent me.

    Big mistake.

    Leveraging the IOM report in Congress and at HHS asking for money to support our experts in researching this disease is in my opinion the best way forward.
     
    meadowlark, catly, Valentijn and 6 others like this.
  14. caledonia

    caledonia

    Messages:
    4,203
    Likes:
    3,223
    Cincinnati, OH, USA
    We have over 800 members and 4600 people who have liked, or shared on social media. We have thousands in donations. We are also following the lead of several bloggers (I'm aware that there are other bloggers with a different viewpoint).

    ME and CFS/SEID are mutually exclusive. If you like the IOM criteria, getting ME established won't change that. They are considered to be two different diseases.
     
  15. Kati

    Kati Patient in training

    Messages:
    5,462
    Likes:
    19,549
    By whom? The patients?

    I am not sure Dr Montoya, Dr Klimas, Dr Kogelnik even Dr Peterson would agree.
    At this point, the science is not exactly sure either, and we won't be until we have biomarkers. In fact our experts said there wasn't sufficient research to establish subsets.

    Arguing about ME VS CFS VS SEID is pointless waste of time and money.

    Our experts are trying to get us out of the hole, through collaborating with the IOM. There is a huge opportunity for leveraging that and ask the governments for substantial funding.

    I'm not going to spend much time arguing this. I don't have energy for status quo.
     
  16. caledonia

    caledonia

    Messages:
    4,203
    Likes:
    3,223
    Cincinnati, OH, USA
    They are mutually exclusive in the WHO ICD-10-CM book of disease classifications and diagnosis codes - two different diseases. The IOM criteria will not change that.
     
    melamine and oceiv like this.
  17. Kati

    Kati Patient in training

    Messages:
    5,462
    Likes:
    19,549
    Consider that this may change as you once more changed direction. And by the way, a 'like' does not mean support, it means basically keeping up with what's happening.
     
  18. caledonia

    caledonia

    Messages:
    4,203
    Likes:
    3,223
    Cincinnati, OH, USA
    There are many ways forward. We don't know which ones will pan out. Therefore we as a ME/CFS/SEID community need to do all of them.

    MEadvocacy is concentrating getting ME officially recognized. Other advocates and the CFSAC will concentrate on CFS/SEID. Directly crowdfunding research such as through the Open Medicine Institute is another.

    The bottom line is research and treatments that help people, no matter what you call this disease.
     
    melamine, GracieJ and Scarecrow like this.
  19. Sasha

    Sasha Fine, thank you

    Messages:
    12,778
    Likes:
    34,181
    UK
    Hi Caledonia, and thanks for your response.

    On your website, it says:

    MEAdvocacy was set up some time ago, and obviously the IOM report has only just come out. As you say above, you've only just made your plans about what to do next. The publication of the report has changed the landscape, of course: many people who dreaded the report and joined in the early days when MEAdvocacy was challenging the process by which the IOM was awarded its contract (widely unpopular with patients) might have been pleasantly surprised by the report when it was published. Certainly that seems to have been the experience of many here on PR.

    How do you know that your 800 members and the 4600 people who liked/shared you on social media approve of your post-report stance?

    Do you have any way of surveying their opinion?

    Are you at all concerned that people who supported you in opposing the IOM process might actually be in favour of the report itself, now that they've seen it?

    I don't mean to hammer you with questions and I hope it's not coming across like that but I think that these are important questions for any group that is trying to represent even its own members, let alone anyone else.

    MEAdvocacy has a megaphone now, paid for by people who came on board before they knew what the report would say and what they would think about it. I think there's a possibility that they might not all support your current direction.

    I don't understand your point (sorry!) but let's not get bogged down in that here - there are plenty of other threads for that topic.
     
  20. Blue

    Blue

    Messages:
    50
    Likes:
    130
    Germany
    I can only speak for myself: I donated in December expecting nothing good from the IOM and therefore liked the idea of a PR campaign.

    Clearly to many the IOM report hasn't been bad but quite the opposite. So with this new situation I don't agree with the messages MEadvocacy wants to get out in response to the report.

    So having donated months ago doesn't mean necessarily consent to your current approach.
     
    Last edited: Feb 25, 2015
    WillowJ, meadowlark, catly and 6 others like this.

See more popular forum discussions.

Share This Page