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Activism 101: Educate Medical Providers about ME

Most doctors, nurses and other healthcare providers belong to a medical association in order to connect to a community of their peers. These medical associations typically send out regular magazines, newsletters and emails about the latest news and topics of interest to the medical field.

A great way to begin to educate an entire community of medical providers is to write a basic article about Myalgic Encephalomyelitis, and to reach out to a medical association about publishing it.

In New York, activists were successful in getting articles published in “Family Doctor: A Journal for the NYSAFP” and in the “Monroe County Medical Society.” The article was very basic, titled: “Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: What Every Family Physician Needs to Know.”

In Chicago, an activist built a relationship with a journalist following a #MillionsMissing demonstration and was successful in getting an article about ME published in the journal for the American Society for Biochemistry and Molecular Biology.

Tips for the article: 

  • Keep it basic. Most medical providers know very little about ME so a basic article about the disease is helpful.
  • Focus on a clinical case for your article – an approach appreciated by medical providers.
  • If you’re not comfortable writing, consider interviewing an ME specialist or researcher for the article.

The Pitch 

The NY activists focused on the current momentum around ME for their pitch to editors at the medical associations. They wanted to give the editors the impression that this is an exciting time for ME, and that their association won’t want to miss out on educating its members about this disease. In other words, everyone’s talking about ME – don’t get left behind! See an example of their email pitch here.

Other ways to give medical associations the impression that ME is a “hot” topic is to mention latest items in the news about ME, including (in the US):

  • Director of the NIH, Francis Collins, said that ME/CFS is a priority for the agency in an article in MedPage in Jan. 2018.
  • The CDC recently updated its guidelines to get rid of the recommendation that people with ME undergo graded exercise therapy.
  • The release of the award-winning documentary about ME, Unrest, available on Netflix.

Learn more – watch the presentation

#MEAction activist, Terri L. Wilder, MSW, spoke about how NY activists have been successful in publishing articles on ME for medical associations. Watch below. Terri is currently the Director of HIV/AIDS Education and Training at a large hospital in New York City. To get involved, contact Terri at ben@meaction.net.

 

Categories: Awareness, Featured actions, Featured news, How-to guides, Medicine

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9 comments on “Activism 101: Educate Medical Providers about ME
  1. Eimear Forde says:

    Most patients are too sick to take this on, that is a big problem

    1. Anonymouse says:

      If you think you can’t, you already can’t. If you think you can, you can and you will.

      Can you write ONE word a day? Can you read ONE word a day? It looks like you can post a short message. If so, you can take this on.

      Can’t do something on your own? Team up with others to do it. You write one paragraph, they do another. You write one sentence, they do the next one. And so forth.

      Details too much for you? Write a short message and link to resources the medical societies CAN use like the IOM Clinician Guide and IACFS/ME Primer:

      https://www.nap.edu/resource/19012/MECFScliniciansguide.pdf

      http://iacfsme.org/portals/0/pdf/Primer_Post_2014_conference.pdf

      Laura Hillebrand wrote 2 books which became international best-sellers/ movies while housebound and lying flat in bed for much of it. Yes, it might take you much, much longer than the average healthy or even mild/ moderately-affected ME/CFS patient. And I’m not saying it’s not challenging. But nothing is impossible if one is dedicated enough and is resourceful with what they have (physically, cognitively, emotionally, financially, etc.).

      I write this as a mostly homebound person who, pre-CFS, worked with a lot of sick people, including those who were bedbound. Some of these patients were “activists” from their bed, calling people and writing letters (pre-Internet); they had a variety of diagnoses: cancer, multiple sclerosis, end-stage renal disease, Parkinson’s disease, etc. They did not let their condition stop them and they inspire(d) me every day. When I feel like I’m going to give up and all is for naught, I remember them. You wonder sometimes why these diseases get attention? It took a whole lot of blood, sweat, and tears (and of course, a bit of luck) on these patients’ parts.

      I’m not writing this so much to get on your individual case but if this is the same way EVERY ME/CFS patient thought/ behaved, we would never get anywhere. People are only as likely to care about your situation as much as you care about it. It is the rare person who will dedicate their energy/ time/ resources to a cause without having a personal connection. So we can give excuses and whine all we want but that’s not going to get us anywhere.

      Since I’m already ranting, let me add this: if you can post to an e-forum and carry on posting to replies and responses, consider using that time/ energy once in a while to advocate. If you write something especially compelling, cut-and-paste it and send it to your local Representative (State or Federal), your local medical society, etc.

      Finally, for comparison’s sake, let me tell you what a Congressional aide once told me when I visited their office to ask for help for ME/CFS. She was being honest. They said they see patients with a variety of illnesses in their offices asking for funding and help all the time. Some of these patients come in on scooters, in wheelchairs, and even on stretchers. That effort to come in and advocate for their diseases impress them and make them more likely to try to help.

      1. Yes, we all need to do what we can to work together, while being mindful of our boundaries. Eimear already reached out earlier last week and we had a great convo about things she could help with for ME advocacy. Everybody doing their little bit helps! Thank Eimear and Anonymouse!

  2. Rhonda Ovist says:

    I’m wondering if we shouldn’t share/use the same basic article to submit to all medical group association newsletters. with options of adding or editing to base article depending on specific focus/interests. Perhaps state level MEAction groups can work on submitting their versions to local associations.

    By sharing (while crediting source) the base article, we
    1) insure a similar message w/basic information on ME is being deciminated across country. Repetition of a central message is an important strategy in getting message out, and having it stick. 2) reduces need for every ME group to reinvent wheel – we are all low on energy, strength and available cognitive clarity, why use it up repeating same task. The more ME groups share and collaborate, the more effective we all are.
    3) each ME state, regional or issue group can create their own newletter/magazine submission based on same core article w/ added focus, material, additional info that is most effective in meeting the following criteria for specific target audience: (a) makes message available (in the case, gets article published) ;(b) gets limited attention from targeted audience by standing out from other material in same publication and breaking through competing cultural messages (re: other medical issues as well as pre-existing ideas about ME);(c) Insure message has resonance for target audience. Important to note that most new elements of culture (new ideas) reinforce what is previously held as cherished or important ideals – as M. Schudson argues (this is his model), most effective new cultural reminds not changes. IN SUM, BEST WAY TO SPREAD OUR MESSAGE RE ME IS TO BUILD IT UNTO DEEPER, MORE CHERISHED IDEALS HELD BY MEDICAL AUDIENCE) ;(d) in addition to giving message personal resonance, also attach it to specific institutional rituals/practices/ideals. In this case, the institution of Medicine is a given – and our ME message fits well with ideals/practices of scientific rigor ( which psych approach lacks), Do No Harm, focus on healing, taking medicine back from insurance industry and big pharma. ; and (e) resolution / what do we want them to do So there would be single shared resolution for all MEActivist – believe ME is real medical cond and learn & keep up w/the medical data but each writing group would have a specific resolution depending on target audience – what Do we have any them to do given their medical fucus. The more specific the more effective.

    Is early and I’m rambling but I do think this is one way we can collaborate a crossed the country while keeping a core message, reduce work load on each group, and making each article most effective given target audience.

    I bet there are at least a couple trained writers in each state or region that can write the final document. The content of each article can be worked on by the membership of each group online with facilitator to keep discussion moving and on track. Works best if planning is broken up into parts, each with limited time: ie general brainstorming for two weeks everyone who is able to use computer/internet contributes idea(s), facilitator sums up after two weeks, groups picks ideas to go with, and then repeat for each stage until time to write

    It takes time, and at least one or two people who are able to manage facilitation including creating a timeline for process and at least five or more people willing to share their ideas and one – three people to write final document but it’s possible. I use same method in face to face planning – online just takes more patience and commitment.

    Sorry for length but I’m just putting this out there. I’m very sick but I can still work on project for limited time from bed or chair. We put those limited availability together and we manage to do a lot. Hard yes. Possible always

    1. Thank you, Rhonda, for your comment. Please follow-up with Terri directly about getting involved in this project: terri@meaction.net.

      1. Rhonda Ovist says:

        Thank you Adrianna. I will do this as soon as I can. And this is what all of us should remember, we do what we can when we can. This is one of the hardest parts of having ME, at least for me: the patience to wait to do the things I want to do, that are important to me, knowing that I must first insure my health and welfare.

        I’m alone, quite sick, and on income that doesn’t not cover medications, food or other expenses beyond set monthly bills. As a result I must find ways to bring in money to survive. Presently I’m selling my vintage and antique collections and jewelry I’ve collected over the years. This uses up a huge amount my energy. Every time I have to leave the house to get food or run other errands, that day is shot; I come exhausted and unable to do anything else.

        The worse it that the effort to just survive a very humble, simple lifestyle is making my condition worse. Not just the ME, but the sjogrens’s as well. I’m in that nightmare movie scenario – if I stop to rest or heal myself, I won’t be able to pay my bills, and I’ll lose my home. If I can’t afford to live in my home, which is very inexpensive relative to going rents and mortgages, I can’t afford to live anywhere yet, if I keep going at this pace, I risk becoming so sick that I will be bed bound (it takes an enormous effort and many hours of taking meds (including pain meds and stimulants) to get out of bed as it is.

        I share this to show that I get the limitations we face. Our condition and ability to function is just one thing that affects our ability to participate in activism and advocacy – money and resources, both of which can be used to lessen other demands on our time and energy also matter. So I do think we have to create plans of action that include some flexibility for specific tasks, and break down larger tasks into smaller components with a fair amount of time for participants to accomplish their part of task.

        It seems that we are assuming here that these articles must written by individuals. But that is a huge task for many people. If there was a steering comm for each idea that could break down objectives into smaller tasks that more people can handle, allow people to volunteer for each task – either as individuals or even teams – then steering comm simply orchestrates all the parts to pull off the larger objective

        Now I’m repeating myself from above – and probably I could have been talking to Terri with this time instead – but again, I just want reiterate that with a little structure that breaks down larger objectives into more manageable parts, allowing more ME participants to contribute based on their own situation, we will get more done with a greater level of participation. I would also add that a more structured approach also improves quality, completion, and provides a clearer record of the procedures providing better opportunity for assessment and improvements.

        Before I decided to go grad school to become a Soc Professor, I was planning on doing management consulting. I had some very successful experience in management, and wanted to be able to hell others do the same. As it turned out, that experience combined with a PhD in Sociology (including Social Psychology) become very useful in my work as an activist Professor who focuses on community engagement. I was able to learn that you can have structure but also flexibility and an ability to adapt and change as needs and issues arise. Furthermore, I learned how to spread out responsibility for the work needed by to complete objectives, while providing participants with clear objectives but also the room for there own creativity and expertise.

        And that’s why I sound like a broken record. I’ve done this kind of work many times and I’ve learned that the first we need to do is be flexible and work with the people we have (based on their individual abilities and limitations) while having a clear objective and goals and a detailed plan on how to get there with the greatest level of participation. It takes patience, compassion, a little peer pressure, a few people willing to keep in touch with participants and provide and help needed, and and few people who can put the discrete tasks together into the final product. No hierarchy, no top down leadership, but enough structure to allow participants to focus on their chosen specific tasks. Oh and back up plan.

        The whole process can be done collectively, from the defining the objective, to setting up the plan of tasks and time table to finalizing and completing the objective. As long as each step is loosely structured by a time line (ie two weekend for ideas and discussion) and a few participants to decide on most agreed upon details and summarize for the next step.

        Once again I’m writing a book, instead of a note. I don’t know if would read all this. I do write a lot, probably because Of huge problem with focus (multi-tasking Rhonda is gone). I don’t believe I’m smarter than everyone else – I’m sure I’m not – and some days I think my dog is more intelligent than I am. And all of this may be already known and eitheven discarded or in use. Im just the new person on the block. And Since I believe so much in the purpose of this group, i just want to put out my experience of what has worked for me in a variety of different types of organizing – from a year-long, campus wide set of events on Gender that involved over 50 different educational/activist initiatives to event planning with student interns to the last minute planning of a three hour panel discussion event for The 50th anniversary of NOW. Oh gosh that sounds like bragging. Not meant to. Just indicating my experience.

        So enough. Adrianna I will contact Terri ASAP. And I really appreciate the work all of you have been doing. I’m also excited that we have our own Florida chapter of MEAction. My hope is that I will somehow find a way to free myself from these financial and energy sucking conditions so that I can put more of myself into this work. This is meaningful and maybe one of the major ways to make social change in how ME is seen and treated in the US and the World. (Please excuse typos )

  3. Kathryn Mullins says:

    To all who commented: I am bed bound, don’t have the ability to think, write, read without getting headache. Can’t talk on phone. All the instructions are too confusing. If you made it so I could just sign and send, I can do that. I’ve been able to advocate in the past 2 yrs but have been bedridden the last 6 months.

    To Anonymous dated March 4: You have no right to judge and attack anyone about anything, let alone a PWME. I am not going to push myself trying for days to read, print and understand, just to crash for weeks. I have nobody to do it for me either.

    For future reference: BE KIND OR NEVERMIND!
    terri@meaction.net Adriane Tillman,. Not able to help this year☹️Sorry.

    PS. This comment was a monumental task that took over an hour to write.

    1. Kathryn,

      Your health is the number one priority, and I applaud you for respecting that. Some people have found this form easier to fill out, if that is helpful to you: https://solvecfs.secure.force.com/actions/kwac__takeaction?actionId=AR00028&cid=

      1. Kathryn Mullins says:

        Adriane Tillman, I didn’t find this in time. Thank you for trying to help make it easier. Right now it’s challenging to read and understand anything. All the best🙏👍

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