• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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    Advocating4ME releases goals, objectives & priorities

    I'm sorry that people have had to witness the ugly side of the M.E. community in this thread. Most of these people have side agendas and comments like this make it almost impossible for sick M.E. patients to make a meaningful contribution moving forward. I'm going to recuse myself from this...
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    Advocating4ME releases goals, objectives & priorities

    Our leadership looks forward to clarifying their position further as to why they choose to remain anonymous in coming days. We look forward to continuing to offer the M.E. a viable alternative for internet advocacy moving forward . We have a bunch of innovative ideas coming for how we can make a...
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    Advocating4ME releases goals, objectives and strategy

    So there is a new advocacy group that was announced on May 12th and they just released their platform today for how they plan to move forward. I agree with most of what they have to say, particularly how they plan to approach internet advocacy for the M.E. community moving forward. Personally, I...
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    Advocating4ME releases goals, objectives & priorities

    Some of you do realize this is a patient advocacy group, right? Our choice is either to protect the identity of those involved, or not participate in advocacy for the M.E. community at all. Our leadership is committed to making a difference for the M.E. community through whatever means possible.
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    Advocating4ME releases goals, objectives & priorities

    Just because there is no public face to the organization does not mean that intense collaboration between partners does not take behind the scenes. If you are curious about potentially collaborating with the organization, I would suggest you send them a message on facebook instead of questioning...
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    Advocating4ME releases goals, objectives & priorities

    Hello everyone, Advocating4ME has just released the "Blue Paper" on their website which outlines their goals, objectives and priorities moving forward. It's definitely worth reading over for all those in the M.E. community that have an interest in advocacy. https://advocating4me.wordpress.com/
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    Launch of Advocating4ME

    Hopefully :) Right now we are using "Slack" for internal communication and find that pretty effective. Unfortunately the name "advocating4me" has been claimed on twitter and google plus by individuals promoting various products. So we are definitely going to expand our web presence, but I'm not...
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    Launch of Advocating4ME - Please Support

    Hello friends, We are proud to announce the official launch of a new multi-national advocacy group established for the purpose of raising funding for the most promising scientific research studies for Myalgic Encephalomyelitis. We are interested in helping researchers seeking to identify...
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    Launch of Advocating4ME

    Happy May 12th friends, It is with great pleasure today that we announce the creation of "Advocating4ME", a multi-national group of grassroots activists working together to raise funds for the most promising scientific research studies for Myalgic encephalomyelitis anywhere across the world. If...
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    Comment by 'redviper' in 'Support grass-roots internet advocacy campaigns'

    I changed the font to try and make it easier for people to read. Hopefully that helps :)
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    ME Annual Summary - New Advocacy Leaders Needed

    Hello friends, I recently uploaded a blog post that I authored about both the success and failures of the ME during the past year. Please feel free to head over and check it out :). I obviously feel it raises some interesting questions that the ME community needs to contemplate moving forward...
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    redviper

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    Support grass-roots internet advocacy campaigns

    Hey everyone, I was part of a small team to collaborate on this letter addressing both the successes and failures of the ME community during the past year. Obviously as one of the co-authors of the letters, I think it raises a variety of relevant issues worth discussing among the ME community...
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    Are you getting appropriate care from a doctor? (ME/CFS patients)

    No, unfortunately I think some people have a mistaken perception of the Canadian health care system, it's brutal. There are massive funding shortages and wait lists, as the Canadian government desperately clings on to this cherished notion of public health care for everyone. I'm sure we will...
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    ME/CFS Advocacy Project: Letter Writing Campaign to Major Philanthropists‏

    That will be determined based on the individual philanthropist and which ME research project they are assessed as being the most likely to fund (there are some real obvious approaches with certain candidates), but obviously clinical trials of promising drugs would be a priority for funding, as...
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    Are you getting appropriate care from a doctor? (ME/CFS patients)

    No, I've been sick with the disease for 3.5 years and I have never been under the care of a ME specialist or even anyone remotely close to that speciality. I live in Canada for what it's worth. I've made efforts to get in and see an ME specialist, but there are very few options and absurd wait...
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    ME/CFS Advocacy Project: Letter Writing Campaign to Major Philanthropists‏

    We are still looking for one or two more volunteers to join the team. If you feel like you would be a good fit for the project, feel free to send me a message. This campaign will launch within the next few days.
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    Has anyone appealed to celebrities/philanthropists to help us?

    Hey everyone, Things continue to move ahead with this project at a pretty quick pace. Through further research, we have identified and assessed other American philanthropists that would be the most likely to contribute to ME/CFS research. Currently we are looking for people to primarily provide...
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    ME/CFS Advocacy Project: Letter Writing Campaign to Major Philanthropists‏

    Hello friends, I know that some of you participated in providing feedback on the original letter sent to Tim Cook, the CEO Apple asking that he direct some of his future charitable donations to the ME/CFS community. Since then, our team has researched, identified and are now preparing to write...
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    I want to make ME/CFS promotional and awareness banners for sites and social networks

    Awesome @Tally , I commend you for achieving this so quickly. Personally, I think it's a huge improvement. You may want to subtly hint in your opening e-mail that mobile and tablet traffic consists of a large percentage of the total traffic on Facebook, so optimizing the banner for all platforms...
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    I want to make ME/CFS promotional and awareness banners for sites and social networks

    Hey Tally, I think this is an admirable offer and something that could benefit quite a few grass root ME advocacy organizations. The only problem is that a lot of the people running these groups (facebook ME support groups in particular) aren't on Phoenix Rising. May I suggest that you message...
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    Has anyone appealed to celebrities/philanthropists to help us?

    Thanks for the kind words, I sincerely appreciate them. I learned a long time ago in life that it's impossible to please everyone, so all you can really do is surround yourself with talented people and trust the collective feedback of the group. Speaking of which, @CantThink , since we seem to...
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    Has anyone appealed to celebrities/philanthropists to help us?

    You have to love when people personally attack those who go out of their way to put together advocacy projects for the ME community just because they have a slight disagreement over phrasing, lol. The post is even more ludicrous because Brazil is an industrialized nation, and there are...
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    "Physical or Mental: Why it Matters" (March 31 blogpost by Clark Ellis)

    It matters because it is only a mental illness in the mind of a few delusional psychiatrists and select private interests. You can see just how damaging the research from Lipkin/Hornig has been to our opponents if they are now forced to argue the narrative "well, what does it matter if the...
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    Has anyone appealed to celebrities/philanthropists to help us?

    Thanks @Snowdrop, I will look into Oprah once I start my research. If worse comes to worse, we could always select the most appropriate of her charitable organizations and attempt to approach that way.
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    Has anyone appealed to celebrities/philanthropists to help us?

    that's valuable information Tuha, appreciate the resources. Perhaps we could come up with a standard template that could be blasted out to most of the top 50 donors, and maybe pick 1 or 2 that we should target with tailored letters. Perhaps someone who has struggled with a chronic medical...
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    Has anyone appealed to celebrities/philanthropists to help us?

    I would also be opening to producing a basic template that we could use to contact philanthropists if people want, or tailoring letters to one or two other philanthropists that are high-value targets. With the letter above, there are a couple of things in there that are tailored for Mr. Cook and...
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    Has anyone appealed to celebrities/philanthropists to help us?

    Thanks everyone :) I sincerely appreciate it. Let's just hope it resonates with Mr. Cook or whomever screens his e-mails.
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    Has anyone appealed to celebrities/philanthropists to help us?

    If this letter generates any response at all, I will be sure to post the response here immediately so we can collaborate and figure out the best approach moving forward.
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    Has anyone appealed to celebrities/philanthropists to help us?

    Here is the final version of the letter that has just been e-mailed to Tim Cook, the CEO of Apple. Once again, thank you to all those who have contributed by providing feedback, input or strategic advice, especially @Snowdrop. This letter wouldn't have been possible without everyone's...