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Join the National PR Campaign for ME: Power to the Patient (P2tP)

Discussion in 'Phoenix Rising Articles' started by Nielk, Nov 20, 2014.

  1. catly

    catly Senior Member

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    @caledonia Aside from donating (which I have done) what can we do to help?
     
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  2. caledonia

    caledonia

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    Anything you can do to spread the word about this campaign would be greatly appreciated.

    Here are some things I've been using on Facebook - you can take those and tweak them for your situation. Perhaps you can say something like - I donated to the PR Campaign and why, briefly, and give a link to the donation page.

    If you could put your version here, that would help others too.

    Short version:

    We don't have to take this lying down! We can be heard with a National PR Campaign for ME/CFS. Read the proposal here: ‪https://meadvocacy.nationbuilder.com/donatepr‬

    Long version:

    ***Now Is The Time for a National PR Campaign for ME/CFS***

    The IOM and P2P redefinitions, Nancy Lee deliberately removing the Canadian Consensus Criteria from CFSAC recommendations, on top of 30 years of "chronic fatigue syndrome", overly broad definitions, and peanuts for research.

    I'm sure you're as disgusted and disgruntled as I am about how badly the Department of Health and Humans Services treats ME/CFS patients. That's why I started http://meadvocacy.org earlier this year - to fight against the redefinitions and get the Canadian Consensus Criteria adopted for M.E.

    We don't have to take this lying down! As great as our grassroots efforts have been, it's clear we need to apply even more pressure to achieve our goals. We are seeking donations to hire a professional public relations firm to bring our story to the media and policy makers in Washington.

    Click here to read the proposal and donate: https://meadvocacy.nationbuilder.com/donatepr

    I have prepared a Frequently Asked Questions document for you (linked in the proposal) but if you have additional questions, feel free to ask.

    Please share!!!

    =-=-=-=-=
    Perhaps something like this?

    Are you as disgusted and disgruntled as I am about how badly the Department of Health and Humans Services treats ME/CFS patients? That's why I donated to the National PR Campaign for ME/CFS.

    We don't have to take this lying down! The campaign plans to hire a professional professional public relations firm to bring our story to the media and policy makers in Washington.

    Click here to read the proposal and donate: https://meadvocacy.nationbuilder.com/donatepr

    Please share!!!
     
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  3. catly

    catly Senior Member

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    Thanks @caldonia, I will work on a post for my Facebook page, but I'm afraid that I don't have a big reach there. Is there anyway to provider a twitter link From your web page that we can easily tweet to whomever we want with the title of the initiative, I use twitter a lot.
     
  4. caledonia

    caledonia

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    Unfortunately there are no social buttons on the Donate page, although there are on the Home page.

    You can use the following Tweet as an example:
    We don't have to take this lying down ! Now is the time for a National PR Campaign for #MECFS #CFS #STOPP2P4ME https://meadvocacy.nationbuilder.com/donatepr

    Feel free to modify that as you see fit.

    I'm also in the process of setting up separate Facebook and Twitter pages from May12.org. I think things are getting lost with all the May12 posts.
     
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  5. Research 1st

    Research 1st Severe ME, POTS & MCAS.

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    The P2P and IOM is a tragedy for all patients with genuine neuroimmune disease and especially those trapped in their homes severely affected. As for the deceased with CFS, no one can bring these poor souls back.

    The IOM removed CFS expertsf from its panel to redefine CFS (a disgrace) and the P2P have admitted the British psychiatric Oxford Criteria CFS evidence isn't applicable, but includes it anyway as an evidence base. Astonishing negligence.

    The good news is, soon, new pathogens will be associated to those given the horrible label of 'CFS', and many patients will sue the American and British health agencies for their disability which is acquired (infection leading to autommunity) not learnt (behavioural due to mental illness).

    It is fundamentally wrong for certain groups to sell a product (therapy) to patients knowing it harms them, and to promote it as safe and effective! This therapy is CBT and GE.

    Once the patients can know what pathogen they carry, the law suits will rain down like snow.
     
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  6. Sparrow

    Sparrow Senior Member

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    Not every patient with ME believes that the IOM and P2P efforts are a negative thing. The community at this particular forum has a very strong slant in that direction, but not every patient shares those views.

    I love the idea of getting public relations firms involved, but wish dearly that we could tighten the focus of their efforts to raising awareness of the severity of the condition, generating sympathy and understanding for patients, and highlighting the inadequacies and unfairness of current research funding and the need for research efforts and treatment options. I think the focus on fighting the IOM and P2P discourages a subgroup of patients from contributing to funding them, etc. Whereas the other efforts, we could definitely all get behind.
     
    Blue likes this.
  7. caledonia

    caledonia

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    That's actually an old page from the website which has been removed. We've been refining our message as we go along and learn more about what's needed and what will be effective.

    The main focus is 1) getting ME officially recognized as it's own distinct disease (separate from CFS), 2) along with a true ME definition (CCC, ICC or better), and then 3) increased federal funding for research commensurate with similar diseases such as multiple sclerosis.

    Of course, along the way we will be raising awareness of ME and the severity of the condition, generating sympathy and understanding for patients and highlighting the inadequacies and unfairness of current research funding and the need for research efforts and treatment options.

    Challenging the IOM and P2P are secondary to, or in service of, the primary goals. If the P2P and IOM are calling the disease "ME/CFS" then that is contrary to our goals and needs to be challenged. You will never get ME recognized and meet all the other goals by combining it with CFS or trying to convert CFS into ME (or at least it hasn't happened yet in 30 years of trying). Every time we do try, the govt comes in and squashes it. That's why we have a P2P and IOM in the first place. They are NOT what the CFSAC recommended.

    We have already seen the draft report of the P2P, and if someone is in support of it, they're either not very knowledgeable, or you may want to question their motivation. The draft report leaves the 1994 Fukuda definition in operation. This is a very loose definition which is a combination of ME and several Not ME diseases - a disaster for ME research. Treatment recommended is multimodal therapy, a psychological therapy. I would be shocked if the final P2P report was substantially different from the draft report.

    We'll know a lot more about the IOM come February 10, and the final report of the P2P is also coming out in the next 2 to 3 weeks.
     
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  8. Kati

    Kati Patient in training

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    I personally was a bit disappointed the ME advocacy changed their goals without telling those who are funding them.

    honestly, separating (divorcing)ME from CFS is not going to change much. It will actually create tension betoween the 'real patients' from those who are not as sick but are still unable to work. Patient Advocate Chris Cairns called them 'the half sick' how is it supposed to be helpful?

    i agree that the name CFs sucks a whole bit. But right now, this is the word that is being used in the US (and Canada). Telling an emergency dr you have myalgic encephalomyelitis will not give you better care because it translates to them to chronic fatigue syndrome therefore not important. And with changing the name to ME will not just by itself change the fact that we do not have funding or solid research that defines the clear pathology.

    What I would like to know is who are the people behind ME Advocacy, and who are its influencers? Because it will determine if I continue supporting then or not.

    Thx.
     
    Last edited: Jan 22, 2015
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  9. caledonia

    caledonia

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    Actually the WHO ICD-10 CM agrees with MEadvocacy's goals. Starting Oct. 1, ME will be listed in the tabular listing (meaning it "exists"), and it is separate from CFS, and vice versa. There is an exclusion, so if you're diagnosed with one, you can't be diagnosed with the other. This is where medical billing codes come from for diseases.

    Those who can still work are still real patients. The ICC has something called atypical ME, which I think would cover more mildly affected patients. In any case, we don't want to leave anyone behind. Using a much better definition like CCC and ICC, looking at severe ME patients vs. controls, and vastly increasing research should help us find that elusive biomarker much quicker, which can then be used to diagnose people (even mild patients) with much more accuracy.

    It's mostly me as the main organizer, but there are at least 20 ME patient advocates I've been working with behind the scenes. Many of these are long time advocates whose names you should recognize - many bloggers have been helping Erica Verrillo, Gabby Klein, A Rainbow At Night, Mindy Kitei. Mindy Kitei, Charlotte Von Salis and Anne Keith are spokespersons. They all did presentations at the IOM public meeting early in 2014 and can be seen on Youtube. These are just a few.

    If you have donated and don't like the changes to the goals ie, they've become something you don't agree with, I will refund your money - just drop me a line.
     
    Last edited: Jan 21, 2015
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  10. Ember

    Ember Senior Member

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    Thank you!:balloons:
     
  11. Kati

    Kati Patient in training

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    First i would like to add to my post above:
    Edit to add: remember when patients were getting tested for XMRV and some patients started saying that the XMRV negative didn't have ME? Thing is no one can tell who is the real deal and who is not at the moment. Criteria definitions will never be perfect.

    i agree with a campaign, I agree that we need to stop preaching the choir. However the message and what we're going after is extremely important. While patients can be united, the extremists, on both sides, can make it or break the campaign. You are asking patients to fund the campaign. It is important to hear them and also it is important to communicate what exactly is happening, because without that funding we go nowhere.

    i command your efforts and do I ever know it is not easy to juggle, while sick with this disease.
     
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  12. Nielk

    Nielk

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    Patient and advocate Anne Keith posted this on Facebook:

     
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  13. caledonia

    caledonia

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    This is better information:

    http://www.meadvocacy.org/anne_keith_on_google_hangouts_on_air_with

    Anne Keith on Hidden Heroes Google + Talk Show Today Jan. 22 4pm EST
    [​IMG]

    MEadvocacy.org spokesperson, Anne Keith, will be discussing ME on the Hidden Heroes live talk show with Arielle and Aarin. The show is a Google+ Hangouts On Air live broadcast, which will air today January 22, at 4pm EST.

    Click on the link to access the show:

    https://plus.google.com/events/c1ncce8ntfgja2337llm8aveue4

    Here's a link to a time zone converter so you can calculate for your time zone - http://www.timeanddate.com/worldclock/converter.html

    You don't need to be a member of Google+ to watch the show. I am not sure if the show will open up the floor for questions, but if so, you will need to be logged into Google+ to do that.

    The show will also be archived for future viewing. We will post the link when it's ready.
     
    Last edited: Jan 22, 2015
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