Very Very Aware

me_and_cfs_ribbon_largeMay 12th is International ME/CFS Awareness Day, selected because it is Florence Nightingale’s birthday. If you look around blogs and social media today, you’ll probably see a lot of blue ribbons and statements from patients. There’s the May 12th Blog Bomb. Niagara Falls and other public places will light up the night. I expect we’ll see an increase in media coverage and personal testimony, like this fabulous piece by Catherine Hale. And many advocates will reach out to politicians to ask for increased research funding and better services.

But here’s the thing: we are just preaching to the choir.

If you read my blog, you are already aware of ME/CFS. If you tune in to any of the awareness activities with more than cursory, passing attention, chances are you are already aware of ME/CFS. Does lighting up Niagara Falls actually spur people who know nothing about the disease to look it up and learn something? Do we even know what the tipping point would be – how much awareness activity saturation you need in order to get strangers to pay attention? I’m not saying these activities are pointless, but we should be very cognizant of the fact that the likely impact is small.

But the politicians and policy makers, you say. What about increasing their awareness? Yes, that is important, and I know that my own Congressmen have a limited level of awareness and concern. Finding ways to increase that could be helpful – if we ever have the resources to launch a legislative campaign.

The people who really need to be aware are the decision makers at CDC, NIH, and HHS. And I am telling you that they are already aware. These agency personnel recognize ME/CFS is a serious disease and an unmet need. They know this. Dr. Francis Collins (Director, NIH) is aware of ME/CFS. CDC is aware. FDA is aware. HHS Secretary Burwell is very aware. These people know about ME/CFS.

The problem is not awareness. The problem is that they are aware, and yet they do not respond with the urgency and commitment required. They are aware, and yet they will not commit more resources to address the science gap. They are aware, and yet we still hear the same excuses that there is no money, the science is hard, we don’t know what we’re studying, ad infinitum, ad nauseam.

Do you want to talk about awareness? I am very aware that my mother spent the last twenty years of her too-short life watching me struggle with this disease. I am very aware that my mother actually feared I had AIDS at one point because I was so sick, so suddenly. I am very aware that I will never run or dance with my niece, and I will never hike with my husband. I am very aware that this illness stole my choice to have children and the career I worked my ass off to build.

Wearing a blue ribbon? Lighting up a building? Writing this blog post? This changes nothing. Even an incremental uptick in awareness is a microscopic drop in the bucket towards building a critical mass of public pressure.

Awareness Day? Great. You are already aware. Our policymakers are already aware. And I am very very very aware that this changes nothing, accomplishes nothing. Because if awareness was enough, we would already have made progress.

We will not see the change that we need and the resource investment that we need until we find a way to leverage the awareness into action. The policy makers will not change their actions and decisions until we force them to. And we will be better served if every single advocate and organization becomes aware of that.

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38 Responses to Very Very Aware

  1. LJ says:

    But remember you are not only raising awareness with med professionals and policy makers. But more and more in the general public which is so important. As a result, you are creating “critical mass” and that’s who will make the change. It takes a LONG time…. . Diabetes was rarely funded 40 yrs ago when I began teaching patients in the hospital..I even started daily classes. Not much was made of it then. Now, it’s a major emphasis, Diabetes nurses and dietitians , funding, ed centers even in rural areas. It takes time and you are leading the way for all to make a change! Who knew my niece could make such a major difference in health care!! I am so proud of you!

  2. Matt says:

    I think it does makes a difference, it definitely does have its limitations and some of it is in a bubble. But if a couple more people put some money in an ME/CFS research box who would not have normally, and that donation helps to fund an important study, then that is a good thing.

    It’s slow change, but you have to keep the stone rolling.

    I do think we’re crying out for effective lobbying and that funding such a venture should be much further up the priority list than it seems to be. The problem is there are a lot of strong voices in the community that have very set opinions about ME/CFS which makes it hard to pull the majority behind some co-ordinated, professional action.

    Those strong voices will have to be convinced that it’s worth giving up a little of what they believe in service of the bigger picture.

    If somebody out there can draft a charter for a lobby organisation that can be as representative of the many strong views on ME/CFS as possible, that would be a great start.

    We need to be in a position to employ people with both media and political savvy who will relentlessly lobby for change. In the UK, the psychiatric lobby has constant access to soft power in the media and politics and we have seen how terrifyingly effective it has been for them. Our ME Association does a good job of responding to these actions, but they need more resources.

    I wrote my ME/CFS blog this year on a Video game website and incorporated that theme into my piece to reach a wider audience. So the bubble can be pierced a little. If you have a niche interest, I know people love to hear about how something they’re passionate about can be a force for good in someone’s life.

  3. Sally says:

    I agree Jennie that much of the noise of Awareness Days goes on only within the ill communities themselves.

    However, the point you are missing here is that before you can have a campaign you must rally the rabble.

    I don’t for one moment believe that a blog bomb will change much, BUT it does give those who are normally quiet the excuse to talk to friends and family about what their illness means.

    It creates a little storm in a teacup, that can help be the little trigger for that one person to take a decisive action that might make changes further down the line that none of us can currently fore-see.

    I understand you have been campaigning for years and must be feeling the pointlessness of much that we attempt to do, but we all need to feel we have strength in numbers, and maybe one day the rabble we’ve gathered online will help tip the balance for change…..

    Maybe – or maybe not – but one thing is sure, if we all turn away and don’t do anything then nothing will happen.

    I don’t know how to force change, so I do what I can in my own wee way. xx

    • Jennie Spotila says:

      I think the blog bomb is great, which is why I highlighted it and have participated both years. And I agree that we can’t turn away and do nothing.

      I think, more to Matt’s point, that we need more effective lobbying and greater collective action. As Matt pointed out, we have a lot of entrenched positions in our community. We have no rabble and no critical mass if we can’t find a way to combine our efforts and our voices. This will require leadership and focus, on a scale we have never achieved before.

      Awareness cannot be an end into itself, and we cannot focus energy and effort on one day a year. If our focus ever becomes more about the day than about addressing the fundamental problems, we lose.

      • Sally says:

        Yes… I agree.

        We need to think carefully about where to focus our energies, and as you say it is so difficult with a community divided, which suits the establishment well of course.

        What’s that saying? – Divide and conquer!

  4. Marilyn Lemmon says:

    This petition for more NIH funding may make a difference if we can get enough signatures. Currently over 1400.

    Pleas sign and share if you haven’t already.

  5. Cheryl says:

    You sound down Jenny. I’m sorry. You make good points and yet this day is a rally for patients to come together. It’s so important on many many levels: e.g. to make us a more cohesive advocacy force. And it may just help someone who is struggling to hold on, to keep holding on, eh? That alone is worth it.
    As for making others aware. I like to think my tweets to the @whitehouse and my senators and congressman will be read and noticed.

    IOW: Better to light one candle( or falls 😉 ) then to curse the darkness.

    • Jennie Spotila says:

      I’m not down, I’m pissed off. I am not saying we should do nothing or that awareness day should go away. I’m saying that awareness day can’t accomplish the goal of change, at least not until we reach a much larger critical mass.

      The people in power already know, already have awareness. We need to build something bigger than awareness.

      If I thought none of this mattered, I would shut down this blog in an instant. I think speaking out matters a great deal. But my own understanding of who is aware and what is necessary for change has evolved.

  6. Charles Clark says:

    Regardless of awareness we have an obstacle which is next to impossible to overcome, we don’t look sick. I have to tell a story on myself that both embarrasses me and makes me ashamed of myself. For one reason or another I came upon a video clip of Dr. Nancy Klimas giving a lecture to a group of CFS/ME sufferers and my instant reaction was “there’s nothing wrong with those people! They look perfectly fine to me!” This all took place in a split second but I cannot escape making the confession. It happened. And I have had a bad case of this disease for the better part of a decade. I am largely home bound and my life is a mere shadow of what it once was. And yet…
    Nothing is going to happen until and unless either one of two things happens. The first is the discovery of the virus that causes it. I am convinced it’s out there and think I have the circumstantial evidence to prove it. But we need cold hard scientific evidence. The other is for there to be an outbreak occurring that effects a number of well known public and credible people (at least in the eyes of the public); like the US House of Representatives. I do not want to wish this disease on anybody but I have to admit there is something vaguely amusing about this possibility. But it would help, no question about it.
    So, in the meanwhile, all we can do is wait.

    • cort says:

      I disagree Clark. We’re not helpless. We could get together and work for change. We could come up with a plan, rally everyone and get people to contact Congress. We could try to raise money, hire a lobbying firm and get our interests represented. We could try to get pro bono representation from a lobbying firm. We could make an effort to find healthy volunteers who could help us in our cause. There’s a lot we could do that we’re not doing.

  7. Gabby says:

    I think that anger is a very appropriate emotion in our situation. As a matter of fact, I wish more people would feel and express anger which in a large scale would spurn us into appropriate actions.

    We need a revolution!

  8. cort says:

    A clearsighted and gutsy analysis Jenny – thank you.

    Yes, everything helps but……..we should be aware that we as a community -at least in the US – have almost NO outreach into the voices that can make a difference for us. Those are the policymakers and funders in Washington.

    The halls of Congress where so much that affects us gets decided are essentially empty of people advocating for ME/CFS. We say we don’t have the energy, the organization, the healthy volunteers, the right leaders, the money – whatever justifications we want to come up with – after all those are said and done, the most salient fact is that we’re just not at the place where a difference can be made.

    We are not there and because we’re not there (or someone is not there for us) day and day out pounding on people doors demanding more resources – we’re basically relying on reports like the IOM and the P2P and itty-bitty email campaign and protests to prod the NIH and CDC into doing something.

    That’s just not how things get done. It takes time and a lot of work to get enough Congressman on board and tell the NIH to do something about ME/CFS. We haven’t even begun to try and do something like that. We’re relying on the NIH and CDC to decide to change. Hopefully they will!

    I don’t have any good answers. I’m not there either. I’m trying to keep the blog and Forums going. I wish I had a good answer. If someone does please let me know.

  9. Kati says:

    Yes! We are preaching the choir. Lighting up building will not change our world until we explain the nation, the governments, the doctors, the researchers why and how they can help.

  10. Russell says:


    If we consider for a moment that the IOM report estimates are correct, then only 10-20% of the population are actually diagnosed and ‘aware’.

    I would suggest that Awareness Day is as much about alerting undiagnosed people as it is about trying to create enough ‘noise’ that those in power sit up and take notice.

    Just my two-pennies. And for what it is worth – I have never witnessed so much activity and fundraising in an Awareness Week before.

    Today has been especially frantic on social media but 2015 is shaping up as the year that breaks records I think.

    We need to bring more into the fold. More patients. More power. More fundraising capability – and if lighting-up attractions, writing blogs, publishing articles, and generally raising a noise, helps us achieve that, then maybe the next petitions or email campaigns, or targeted crowdfund for our top researchers might actually generate more support.

    I wish all this activity was not limited to one week in the year. Bring me more I say. And let’s hope that in a week like this those who have remained afraid of saying that they have ME/CFS find the courage to do so by realising that they are not alone after all.

    Well done everybody!!

    • Jennie Spotila says:

      I like your point about the undiagnosed/unaware patient population. It is critical that we reach them.

      I worry that awareness activities, especially in the ME/CFS echo chamber, do not yet sufficiently boost the signal. You are absolutely correct that we need more than a week of outreach to make inroads in the undiagnosed. Has anyone done strategic thinking around how to reach these patients? Medical education has to be a component as well.

  11. Lacey Stritton says:

    When you’re fighting a disease that has been methodically marginalized and discredited over thirty years, awareness days are extremely important for the community.

    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 possible, I would encourage you to come over and check out what we have planned in the near future 🙂

  12. Caroline says:

    Great blog post. I feel the same. I think a lot of decision makers are aware, but what is lacking is public pressure. We need to get the media on our side and the general public.

    I have worked in PR before getting sick and without the ressources it is incredible hard to do a good PR job. You have to contact journalists personally, build relationships, offer the right information at the right time, create catching stories, develop strategies, have a budget for wires, design etc. You have to be able to react quickly when it comes to media relations, to be creative, to concentrate – this is all beyond me and I guess the most of us at the moment.

    Doing public demonstrations would be another possibility to get public attention, but at least in the near future I think we won’t get there.

    Lot of problems, with few solutions at the moment I guess…

  13. Perfectly articulated and exactly what I wanted to write but couldn’t. Sharing this far and wide, thank you.

  14. Rebecca says:

    Thank you, Jennie.

    Here’s an easy Awareness Day activity. Using the template below, write an email asking for $100 million in annual research funding. Send the email to Secretary of Health Burwell and NIH Director Collins.

    International participants are welcome because U.S. policy on ME affects policy around the world. At the end of your email, list your country rather than state.

  15. Henry Anderson says:

    The psychogenic/psycho-social lobby would love it if the ME community stopped raising awareness and calling for better research. Everything we have achieved has been in opposition to them.

  16. Linda says:

    Preaching to the choir – yes. I hate to burst the bubble of all the people who think that lighting up Niagara Falls or the CN tower, for example, is going to make the slightest difference. They light up every night, nothing different. Niagara Falls has a revolving rainbow of colours, every single night, and has had since 1925. Yes, they will light up with blue for 15 minutes on May 12, for ME/FM (they do take requests from charities), and, right afterwards, the rainbow of different colours will start again. Nobody (the public, I mean) knows why they’re lit up, they just see pretty colours.

    I’m angry but I haven’t got the energy to do anything about it or even to be angry because I’m far too ill. Even writing this is a challenge but it’s the first time I’ve seen anyone who has come out and said what you have, Jennie, so I couldn’t let it pass without acknowledging what you have written.

  17. Anonymous says:

    As stated the powers that be are aware. While pressing Congressional funding is important it seems like a lot of effort with little return of resources. Have we thought out of the box about how to put the Government Agencies acknowledgement, scientific evidence and cohorts of Nobel laureates to leverage the billionaires who want to die broke. Foundations with great resources. Maybe we leverage the above agencies acknowledgement along with renowned scientist and go after where one enlightened large donor could do more in one gift than our government could do in a life time.

  18. Mary Dimmock says:

    What a perfect post for today. HHS is perfectly aware. What we need is action and thas not going to happen until we force it. You said that we need to reach a much more critical mass – I think part of that will need to include focusing some of our energy on reaching the public and getting them to respond with the outrage we all feel.

    Thank you for the gift of your writing!

  19. Sasha says:

    Good points, Jennie – we need to target Congress and get more research money and I noticed two great initiatives yesterday that aim to build our critical mass to do both those things.

    One is Jen Brea’s new #ME Action Network:

    which aims to build up our numbers by providing a central, one-stop-shop for advocacy actions. One of the first is an easy petition to Congress for equality in research funding ($250m/year), including a special version for non-US people. I’ve already signed and sent the link to everyone I know. Get stuck in, folks:

    And then there’s The ME/CFS Crowdfunding Campaign, which aims to provide a central point for all ME/CFS crowdfunds and is starting with the brilliant END ME/CFS’s ‘Big Data’ study looking for biomarkers in the severely ill.

    Have a look, ‘like’ it, tell all your friends and family and get donating!

    This is all about building a mass, international, networked community that can act in huge numbers — single-point hubs so that we aren’t all scattered all over the internet and weak because we’re divided.

    I’m very excited about both these developments. 🙂

  20. Asa says:

    Adapted from a PR post: (

    Which governments (which departments/agencies) feature May 12 as ME/CFS Awareness Day? Pages/media where it is featured? Pages/media where it should be featured?

    Below then, something for the next (??) CFSAC meeting?

    CDC (last update 11 May 2015): “Chronic Fatigue Syndrome Awareness Day – May 12″… Uses terms “CFS” and “CFS/ME”, with the exception of (1) an early “also known as myalgic encephalomyelitis” reference and (2) when quoting the title of the recent IOM report; Uses term “illness”; Under “More Information”, an AHRQ link goes to a 2002 archived page on disability and CFS based on a 1988-2001 literature review.
    Note: A 2014 version of this CDC page is archived at

    Consider too: did not feature ME/CFS May 12 info. Other HHS blog posts, however, highlight for example, National Women’s Health Week (May 10-16) – by Sec Burwell; National Nurses Week (May 6-12) – by Dep Sec Wakefield; Public Service Week recognizing HHS employees (May 5-?) – by Sec Burwell; and the “1st Annual” May: National Physical Fitness and Sports Month; etc.

    And HHS twitter? CDC twitter? OWH twitter? NCCDPHP twitter? No mention of May 12 ME/CFS awareness either. and and and
    Examples of other tweets, however, include for example, May 11 National Women’s Check-up Day; May 7 National Children’s Mental Health Awareness Day…

    Consider also: Awareness Months/Days…”In order to draw attention to health topics, governmental and non-governmental entities have designated certain months [/days] as specific health awareness months [/days] …”. Again, May 12 ME/CFS not listed.

    Consider also: Women’s Health Awareness Months/Days (Source – Office on Women’s Health, OWH): …May 12 Fibromyalgia Awareness Day. But no mention of May 12 ME/CFS.

    And National Health Observances (NHOs): No ME/CFS, but “The 2015 calendar features more than 200 National Health Observances with up-to-date information and outreach materials…” and and;

    Note: NHOs include May 12-16 National Neuropathy Awareness Week.
    Note: OWH sponsors (at least) three observances. (Why not May 12 ME/CFS?)
    Note: Pages from all above (gov-related) links have been saved at

    Other US and/or international government May 12 ME/CFS observance/awareness pages/media?

  21. kate brunton says:

    Thank you Jenny for putting into words the exact feelings and thoughts I have been having when I look at the blue light campaign. Actually I have been skipping over every facebook post because it feels empty, like a waste of time. Yaaaay for your truth talking and advocacy!

  22. Kathy D. says:

    Thanks, Jennie, for your post and your hard work.

    I agree that there is awareness among HHS and NIH, but there is deliberate
    inaction and nonfunding. How could these officials not know when our
    community has been emailing, calling and sending in letters and comments
    in droves?

    We do need to carry out actions and push a lot more. But the obvious
    problem is our health limitations. I’m all for activism but I can’t travel
    and my organizing energy is not what it used to be.

    We need to push politicians at all levels of government. And push
    HHS. It is more than dismaying that the agency won’t even respond
    to its own IOM panel’s report. But they don’t feel impelled to do so.

    We need to make a lot of noise and be public. However, it’s hard
    because we have limitations.

    We need more press attention. There were some good articles and
    TV news when the IOM report came out, when Lauren Hillenbrand
    spoke on TV and when the report from Dr. Jose Montoya was
    published and then Drs. Madi Hornig and Ian Lipkin’s study
    was publicized, too. David Tuller wrote a good article in the
    NY Times about Dr. Montoya’s brain studies.

    All this is good, but it hasn’t brought action by the government.
    So we need a strategy. We do need direct action but we have a
    dilemma with our health problems.

    I’m hopeful that Jen Brea’s film, “Canary in a Coal Mine” will
    help us with public support.
    Lipkin came out

  23. NA Wright says:

    It is true that patient groups and organisations can become enmeshed in carrying out these sorts of activities without any focus on what outcomes are sought – ‘we are a patient groups so we have to have an awareness day/week/month because that is what we do !’ However I think the key issue is the one that Russ has raised – that is there is more than one audience, Russ identifies undiagnosed and isolated patients/carers but there are others. The media in its various guises and the wider public need to be addressed in ways that differ from the politicians and public servants.

    I realise that this Blog is by its very nature US focussed but there are times when the wider discussion about ME/CFS advocacy feels a bit like World Series Baseball, where ‘world’ has a peculiarly parochial context. The one thing that an annual ME Awareness focus does allow is contemporary action in a number of countries, and this has potentially significant benefits. The internet and social media make building a critical mass of attention across languages and cultures far more achievable – but the mass required to achieve criticality has become that much greater even within a single country. In the internet age awareness needs to be pursued internationally, so even if the optimal level of ‘awareness’ were to be achieved in the US, US based patient groups and organisations would still have a role in developing awareness outside the US’ borders. This wouldn’t be mere philanthropy either; in a world where medical research and academic opinion is globalised, having unhelpful, backward looking or misdirected views on ME/CFS held by medics and researchers in other parts of the world can impact upon everyone, as the PACE research has painfully shown.

    Yes, there are huge problems with ME/CFS advocacy, it is far too frequently obligated to individual researchers and clinicians, far too frequently referenced to unscientific beliefs and treatments and far too often reflective of narrow and eccentric perspectives. Awareness is a relatively simple conception, it’s something to which people can be recruited with relative ease and on that basis if for nothing else it’s worthwhile for the development a stronger more effective campaigning base.

    • Jennie Spotila says:

      Excellent points, NA. I especially appreciate your pointing out that this blog is very heavily focused on US issues and politics. I will give some thought to how to improve that.

    • Asa says:

      There’s a PR thread where people can share which governments – US and international (and which agencies/departments within these governments) – feature May 12 as (International) ME/CFS Awareness Day, plus the webpages/media where it is featured, and the webpages/media where it should be featured.

      The community (“local” and international) can hopefully use this info to petition for a variety of government media to recognize (International) May 12 ME/CFS Awareness Day – and educate their audiences. 🙂 (Non-gov media, such as Wikipedia, could be helpful too – with the idea that every little step counts.)

  24. Valerie says:

    Hi Jennie and everyone;
    This is an interesting post and I understand the feelings and the frustration with the realities that exist. I do not agree, however, that we are all singing to the choir. It is absolutely essential in my view to engage the general public, and that Light up the Night will be a perfect way to do it now that it has developed a world-wide life of its own. The focus is to reach out to all sources of media in order to teach the public about what is happening.

    My friends and I spent the last two days speaking to people in a health food store with our ribbons, T-shirts and Light up the Night posters: sharing information about the illnesses and informing them of Light up the Night and its meaning. They were surprised and interested and wondered why there was not more media to tell everyone to participate.

    I also found it helpful to talk to people with other illnesses as they can be very helpful in developing strategies to cross the bridge into the masses. They also were very interested in doing what they can to help us. Some ME/CFS patients’ family members got a real heads-up when faced with current information which they did not know, and hopefully their loved one gets better treatment from them now. It all counts I think.

    I have found that many people who are well and able and who have read the working copies of the book I am writing about the world of ME/CFS have really learned quickly and ask great questions. Their general take-away is one of surprise and even shock that this community exists and they don’t know about it.

    Just from reading the experiences written by the illness community, some have been put to action: ie donation or helping with May 12 or talking with their own friends. I love to watch that evolution in them, and it seems to be fairly easy to do.

    So I totally agree that we must move out and build a bridge across into the healthy general public so they start getting involved and speaking up on our behalf. I may need to fund raise a bit to have the book completed and published (all ideas are welcome) but it was written for that purpose: as a tool for patients to give voice to the very unknown world of ME/CFS in all areas: general public, families of patients, medical, political, research, psychology, narrative medicine…..boundless ideas.

    We have to touch all areas all the time in every way possible…that’s for sure. Each person has their own strengths and ways to give and every one is valuable. Thanks for your work as always. I do understand all of those highly frustrating areas and they exist in Canada as well. (probably worse in that the powers that be are NOT that aware of the situation regardless of numerous attempts by organizations to inform them)
    I hope this helps in some way.

    • Sasha says:

      Hi Valerie – it shouldn’t be necessary to fundraise to have your book published. A friend of mine has published her (non-ME) book for free via Kindle Direct Publishing (Amazon’s Kindle e-publishing group, for the e-book version of her book) and Createspace (Amazon’s print-on-demand publishing group for the paperback version).

      They’re both free to authors. You don’t pay anything upfront, and when someone buys your book through Amazon, you get a (rather large) cut of the proceeds. With the paperback version, because it’s print-on-demand, you don’t have to hold any stock – no need for a pile of unsold books in your garage! Instead, when someone orders one, Amazon prints a single copy and mails it to them direct.

      A lot of PWME seem to be publishing books this way. Some are donating all or some of their proceeds to ME charities.

      • Valerie says:

        Hi Sasha. Thanks for the feedback. I have been communicating with CreateSpace. Fortunately or unfortunately, the layout for this book is complex and it is in need of editor help at a couple levels. There is verse and sidenotes, footnotes, tables, amazing original hand drawn illustrations, and then a part with Experiences of Others from the ME/CFS community located in different parts of the world.

        Even the e-book will require extra layout and expense due to the unusual format, illustrations and special needs.

        It will take a professional publisher to manage and guide from here, even if self-publishing. A substantive edit is needed in parts and a copy edit in others. As a Canadian, there is about a 20-25% dollar difference right now which is moving me towards a Canadian company to help finish things off. I would still have a lot to do but at least professionals would guide me to make it the best product to serve us all.

        I have always had editors working with me because I am not a writer by trade so I have paid these expenses happily to form what we have done to date. This layout has been very effective for the general public to read and to learn from. In fact the last healthy layperson reader donated to the book fund account to make sure it is completed…that was exciting.

        There will be a How to Help/How to Get Help section as well.

        I believe it will be about 300-350 pages and $10,000 – $12,000 would see the paper book and website complete for now, with no profit to myself…but I hope to get some of the expenses paid to date. If there was a profit, I would then consider donating to the non-profit organizations.

        Lots of love and care have been put into it by myself and others; and I have enjoyed the journey but it is time to complete as I am in a different phase of life and health after 5 1/2 years of writing and gathering info.

        The reality for most authors is that they may get their printing fees back on “Print on Demand” and some to cover production costs but it is rarely done to make a profit. It is my way of advocating for myself and for others so I never expected any different.

        I wonder how the community and those around them would respond to a GoFundME
        fund raiser in the amount of $12,000 which is what the proposal is from the publishing company. I know many people healthy and wealthy would not blink an eye at that, but it sounds a lot to ask of others. What do you all think?

        • Sasha says:

          Hi Valerie – thanks for the detailed reply. You’ve obviously put a lot of thought into this but $12k sounds to me like a heck of a lot of money for what you’d be getting. It should be possible to pay a flat fee to someone for layout and for editing and still come in way under that, from what I’ve read.

          I’d suggest posting on the Createspace community forum and the KDP one and asking for advice on how to find a good layout person and editor to hire and what it’s reasonable to pay in terms of costs.

          Setting up a website should be free.

          If you think it might be helpful to discuss your plans and the way forward with PWME, you could join one of the ME forums and start up a thread. I’m on Phoenix Rising but there are other forums.

    • Jennie Spotila says:

      As I said in the post, awareness day activities are not pointless and I’m not saying they should be abandoned. I actually think that especially while we’re small, the face to face work like you did Valerie, has the greatest chance of success. Personal encounters are more powerful, especially since we are not yet generating the repetitive hits with strangers that would be necessary to capture their attention.

  25. I have been an activist with regards to this disease for two decades, and this is what I truly believe.

    1. The science will get too strong to continue to ignore. That is actually happening. I think that might happen within the next decade.

    2. Somebody very famous and very rich is going to have a kid get this disease and will move heaven and earth to see it taken seriously – we already know that the rich and famous who HAVE this disease have not been able to do much, but maybe healthy parents could.

    3. Are you willing to go to jail? I’m not. It would cause a relapse. And therein lies our greatest problem – we are, frankly, way too sick to be able to get the notice of the national media. I’ve often joked we should have a lie-in, because we do that so well. But the bottom line is that if you don’t get up when they say so, they will haul you off to jail. And we are REALLY sick. We are not pretend-lying in – that is the way we live. We cannot go to jail.

    So. We have to do what we can to make (1) happen, and hope that (2) happens.

    And maybe Awareness Days will help one of the 900,000 or more Americans who HAVE this disease, but don’t know what they have, figure it out, and maybe they can do something.

    i have no other answers any more.

  26. Floydguy says:

    On a broader scale it’s still completely acceptable to think of “SEIDS” as a psychosomatic condition. Furthermore there is still no accepted standard of care so it’s acceptable to do nothing. Until the science is there I don’t see it worth making the effort to covert the flat earthers.

    Shame and irrefutable scientific evidence are what’s needed. We need people who can make decision makers squirm in their seats, not have tea and biscuits with them in DC. Scientific evidence will likely have to come outside of the DC establishment which is controlled by big business that at the moment prefers to keep this condition in the dark ages.

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