Lipkin's Monster ME/CFS Study: Microbes, Immunity & Big Data
The Microbe Discovery Project outlines an ambitious new study by top researchers that has collected patient samples, but needs desperately funds to complete the work.
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Discussion in 'Advocacy Projects' started by Samuel, Feb 2, 2010.

  1. Samuel

    Samuel Senior Member

    Here is an idea. Please comment if you can, so I
    know how much interest there is. This isn't a
    quote from an existing article; I had to surround
    it with "CODE" to keep indentation.

    I am in contact with somebody who might be able to
    help our cause.  It's a tough angle, maybe a long
    shot, but if it works, it will be a big win.  He
    wants to know more about the disease.
    I know hundreds of places on the web to point him
    to, but there isn't a single place that explains
    what I will call THE WHOLE THING.  By this I mean
    explaining everything an advocate needs to explain
    in the way I want.
    There are hundreds of sites and documents that
    bite off some of the task.  I have written
    articles that are each single-purpose.  Many of
    you have done the same.  I am aware of the major
    sites.  Not one appears to be a THE WHOLE THING.
    There are awe-inspiring sites, great writers,
    excellent journalists, stirring blogs, pit bull
    advocate-researchers who send chills down your
    spine with the quality of their work, lots of
    good, good material.  And that's just the
    But I do not think that a THE WHOLE THING exists
    now.  If you say, "Have you tried X?" I probably
    did try it.  All sites I know of, quite naturally
    (because they are aiming for a different goal),
    miss several points.
    A good THE WHOLE THING must do the following.
    Every point is essential for my purpose.
      1) Not be aimed at us.
      2) Be aimed at intelligent, educated people.
         They might want an overview or they might
         have enough time to read in depth.  They will
         not have any connection to the disease.  They
         are analytical.  They are decision makers,
         scientists, doctors, and connected citizens.
      3) Be unimpeachably credible.  This means no
         ranting and no unverifiable claims.  Better
         to leave stuff out than include anything that
         vitiates the moral force of our case.  (This
         is an old marketing strategy, by the way: you
         don't have to list every feature of your
      4) Not try to be comprehensive.  The focus is
         education, in particular explaining THE WHOLE
      5) Be done by sufferers, carers, and /100%/
         nondenialist researchers and doctors.  This
         is because we are the only ones who care
         enough at this point to do it right.
      6) Be written like a good article in a highbrow
      7) Be brief.  One enticing main article.
      8) Not try to be a campaign site.  That's for
         the general public, and ties in with
         advertisements and pamphlets.  The present
         goal is to influence decision-makers.
      9) Not be defensive.  The terrain belongs to us
         from now on.
      10) Not get bogged down in too much detail at
          any point.  Links for details.
      11) Be simple and accessible in web design.
          Avoid PDF and Word.  Have very high search
          rankings.  Surpass CDC, Wikipedia, and all
          other denialist sites in Google rank for all
          related search terms.  Do this by being very
          well-trusted and well-linked.
      12) Be fairly robust to different audiences.
          Readers might be open-minded, inherently
          skeptical, skeptical only because they were
          poisoned with falsehoods, or unaware.  They
          might have any political or religious
          leaning.  They might trust doctors and
          authorities or not.  They might be
          scientists or they might believe that
          healthy lifestyle or CBT cures most diseases
          and /it worked for me so it will work for
      13) Explain, indirectly and implicitly if
          necessary, why the FIRST SITES PEOPLE GO TO
          -- Wikipedia, CDC, emedicine, WebMD, CAA's
          Peter White/CBT/GET-containing pamphlets,
          King's College London, New Scientist,
          denialist papers, certain quackbusting sites
          -- are wrong.  This is a necessary task.
          Only do this in history and politics.
      14) Adopt the right tone to inspire "I have to
          do what I can to support this cause".  This
          means NOT exhortation.  It's fact after
          fact, description, detached narrative,
          inspiring identification with the author,
          impelling the reader inexorably into
          realizing on his own that this is like
          Tuskeegee.  This IS possible.
      15) Have a shorter executive overview, in an
          About link.
      16) Avoid mistakes found elsewhere:
          - Note: I recognize that others have
            different priorities, which is why there
            are other sites that do not follow these
            priorities.  These are for this site only.
          - Never put denialism on the same footing as
            science.  Politics posing as science does
            not equal science.
          - Establish firmly that children suffer too.
          - Establish that many people suffer
            severely.  Hammer this home.  Do not be
            1) Point out that (as far as we know) a
               mild sufferer or non-sufferer can
               become a severe sufferer AT ANY TIME.
            2) Explain what "severely" means.  Print
               the Bell scale.  Establish firmly that
               many sufferers are below 10.
            3) Describe what that means for getting
               medical care, dealing with personal
               business of all types (including fixing
               bureaucratic SNAFUs), getting food or
               water, and going to the bathroom.
               Readers will not believe it until it is
               described in detail.
          - Avoid extreme commitments to particular
            theories.  This doesn't mean put one
            theory on an equal footing with another or
            fail to mention good theories; it means
            avoid overly strong focus on less
            mainstream (among the good researchers)
          - Avoid weaselly, compromising blandness
            that comforts those in positions of
            authority who want to avoid taking action.
            The truth gets spoken.
          - Never characterize the disease as mild,
            mysterious, or controversial.
          - Get images right.
            1) Never show people rubbing their
               temples, looking sad, or sleeping.
               Avoid smiles without very good reason.
               Avoid smiling portraits of doctors.
            2) Brain scans showing abnormalities might
               be OK.  A study showed that readers
               actually take articles more seriously
               if they show a brain scan.  Cannulas
               and IVs are fine.  Wheelchairs are
               fine.  Maybe a scientist looking at a
               test tube is OK.
            3) Always dignity.
            4) This is NOT a picture-heavy site.  It
               is aimed at abstract thinkers; pictures
               are only to leave a visual memory of
               the seriousness of the disease for
               later when they think of the topic, or
               to illustrate an apt point graphically.
               Not for grabbing attention, for
            5) If there are no pictures at all, that's
               absolutely fine.  Highbrow magazines
               don't particularly need them and
               neither do we.
          - Never use any CDC definition to explain
            what the disease is.  Canadian until there
            is something better.
          - Call it a disease.
          - Never put opportunity seeking, wishful
            thinking, or common assumptions on the
            same footing as science or (very)
            responsible observation.  Well-meaning
            intuitions can cause death.
          - Avoid pet theories.
          - Never describe non-biomedical theories
            except in history and politics.
          - Never suggest that sufferers delude
            themselves, twist themselves into knots
            with worries, or get preyed on (the poor
            dears) by nutritional supplement hawkers.
            They are sick people, nothing more,
            nothing less.  Leave what /they/ do alone
            and concentrate on what doctors and others
          - Avoid treatment recommendations.  This is
            an education site for people who do not
            have the disease, not a site for people
            who do have it (or doctors) who are
            seeking therapies.  Also do these:
            1) Establish that many proposed therapies
               are wrongly one size fits all.
            2) Establish that those who suffer
               severely cannot do many things that
               those who suffer mildly or from chronic
               fatigue, and other people, sometimes
               take for granted as being useful.
               Point out the human rights and civil
               rights consequences of this lack of
               understanding.  Whether by parents or
               friends or authorities or anybody else.
               Provide specific and referenced
               examples of these violations having
               occurred in real life, not
               theoretically or "could" or "may" or
            3) Never positively mention any therapies,
               whether "good" or "bad", that are
               promoted by denialists or opportunists
               or cause discord in our community.
               (Certain referenced negative mention is
               of course necessary to cover conflicts
               of interest and economic and political
               forces that are critical to the history
               and politics of the disease and cannot
               be avoided without going against the
               purpose of the site.)  I realize that
               some of you might want to talk
               positively about a therapy that you
               like or think might help others.  There
               are /other/ projects where it is OK to
               talk about therapies without
               restrictions.  I hope you will support
               this idea because this is critical to
               the coherence of the site.  Please
               respect my preference that all debate
               should use a separate thread so we
               remain focused on the goal (if it's a
      17) Explain every aspect necessary to give
          somebody an overview.  To me this means:
            - history
            - science
            - medicine
            - politics
            - a link to a brief history of other
              denigrated diseases, both past, such as
              multiple sclerosis, and present, such as
              Gulf War syndrome
            - a link to an overview of the major
              denialists, including referenced quotes,
              major papers, speeches, etc.
            - a link to an overview of the major good
            - a link to a few brief personal stories
            - a link to a brief, journalistically
              sound description of human rights
    For the present task, I bundled Lombardi et al.,
    Hillary's NYT piece, mention of a paper of
    interest to the person I'm communicating with,
    Carruthers et al. (i.e. Canadian), and a little
    self-written history.  It will work for now, but I
    want a one-stop shop.
    I want to start this thread on how we can compile
    a THE WHOLE THING site from existing materials
    (with permission, of course) and contributions.
    The above then becomes a tangible checklist to
    measure our accomplishment.
    If it works, then we'll have something that I can
    send to people like the person I am in contact
    with now.  Pardon my selfishness in just
    explaining what I want and not doing it.  I have
    done far more than I should just doing this much
    (it took a while too) and will take a break
    (except for another post I have been working on
    for a while).  But please know that I will read
    every comment you make.
    Does this appeal to anybody besides me?  Or is
    everybody satisfied that existing sites fill their
    advocacy needs?
    Thank you for reading this far.

  2. Samuel

    Samuel Senior Member

    Thanks, Rachel.

    I have a habit of working on things for months and springing them on people when they are too long to read. Have to do something about that.
  3. Oh and by the way, if you think your contact will only respond to such a site that has these qualities, and there are no others out there, then I will pitch in.

    Rachel xx
  4. jackie

    jackie Senior Member

    Hi Samuel!:Retro smile: I read the whole thing...I can tell where you're heading with this, I like the idea, I think it's necessary now with all the new info piling up...and I agree with you!

    "We" need something up to date. I realise that this will be geared towards NON-PWCS...but I too, am frustrated with the difficulty in finding "The Whole Thing" - in one place!

    I haven't the faintest idea of how I can help (other than the fact that I enjoy researching...and could help out with the "grunt" work, if I'm told what to do!)

    Even as a PWC...I'd love to be able to "lift" valuable info from a single source. I have a silly little facebook page that I use to communicate with members of my family...but I've been trying for three months to find (from on-line info) and write a simple, consise paragraph or two about ME/CFS...(my small bit at Advocacy, I guess), but can't find those few paragraphs that explain the true nature AND the scientific facts to put forth!

    BTW, for my needs, I don't want to include details of MY specific ME/CFS...I want to offer objective, irrefutable facts. I've found that when I start talking about MYSELF...folks usually stop listening!

    I do like the Canadian Consensus Doc (as this is what my Doc goes by, here in the US)...but because it was drawn up several years ago, things have changed quite a bit. in the heck do you start something of this magnitude?

    (Also, good job! You obviously put a great deal of time, energy and thought into, thank you!)

    jackie:Retro smile:

    Kim...I think I remember reading a while back that YOU had written a good, general explanation of ME/CFS that you used with "questioning people"...if so could somebody point me to it!? Thanks!)
  5. It seems to me that you could use #17 as an outline for the site. Then you could start brainstorming which existing articles/stories, etc. would fit into those categories. If nothing exists, then you would create something.

    It sounds like you looking for what a CFS wikipedia page would be like if we created it, instead of CDC/Wessely brainwashees.
  6. Sing

    Sing Senior Member

    New England
    Dear Samuel,

    That is superb as an analysis of what is needed to communicate to others without ME/CFS. I followed all your ideas and their nuances with an experienced eye, as I know others will do. So often, descriptions of our disease haven't helped to advance what we need. The last time I got involved on this forum with ideas for this kind of effective public communication was in our recommendations to Dr. Donnica for the Dr. Oz show. I know that was a much briefer presentation, but we made similar efforts to shape the message as "a whole thing".

    Thank you for this excellent beginning and I know there are talented people on this forum who can help bring this together.

  7. kurt

    kurt Senior Member

    I would love to see #17 used as the basis of a TV documentary about CFS.
  8. Tammie

    Tammie Senior Member

    Woodridge, IL
    just wanted to add my support to the idea - actually I have thought for quite some time now that something like this really needs to be done; however, I know nothing about building websites, and even ignoring that, the whole thing has just sounded far too daunting of a task for me to personally undertake

    .....I love to write, love to research, am very much behind advocating and educating re CFS, etc and totally see the need for this, but am just too darn exhausted and have a lot of other physical issues associated with spending much time I have never even brought this up with anyone

    anyway, said all that to basically say again that I think it is a great idea and depending on what kind of help you need, I might be up for assisting with this
  9. sarahg

    sarahg Admin Assistant

    Samuel, you have really just poured all of my greatest goals for advocacy and outreach onto a piece of paper (well not really paper) better than I ever could have articulated. I have no medical background, I have no technological background- but I am a good convincer and have a political advocacy/ public policy background and I am IN 100%. We're all working at far less than our best, but if we don't do this no one will do it for us. On good brain days I can write well, I'll send you all kinds of stuff I've already written if you want to rehash it, trash it and recycle it however you and others see fit. (the minor issue in my post-cfs awareness raising is that I've grown to be lazy about citation, but that is fixable) I can edit stuff (sort of) I'll try and write whatever you need given the limited windows of ability that I have.

    I've always felt this is really our greatest barrier, we're not relating effectively to the general public and we're not reaching out to explain this as a human rights issue. You've very articulately said this all already, but no one is ever going to give a damn about us rotting away until we tell them, factually and objectively, why they should.
    Let me know what needs to be done and let's hope we can find some more computer nerds and science nerds to help lift this off the ground.

    If we all do a little bit, in the fits and spurts we have available, we can do this! and we can fill a void that has been missing in our advocacy. It's crazy to dream, but maybe in the end we will have a non profit on our hands.

    Also to everyone who finds this thread, direct other people here if you think they would be good at helping fulfil Samuel's goals- not a lot of people look in the subforums, I think.
  10. sproggle

    sproggle Jan

    Teesside, England UK
    History of ME/CFS

    Just found this site it's very informative on the history of ME/CFS.

    Not upto reading it all but just browsing it is enlightening.
    Maybe it would be a good place to start for the history section of The Whole Thing?
  11. mezombie

    mezombie Senior Member

    East Coast city, USA
  12. Oh - that's a great site, Marie.
    Does it fulfil all your criteria, Samuel?
    (On first glance, it seems to, but the design is giving me a headache...)

    Rachel xx
  13. gracenote

    gracenote All shall be well . . .

    Santa Rosa, CA
    I can't stay on the site long enough to see what it offers. When Samuel gets his The Whole Thing site together (EXCELLENT, OUTSTANDING beginning Samuel!!!), I'm sure it will be readable and easy to navigate for all of us.
  14. I also found this which looks good at first glance:

    ME/CFS treatment guidelines

    But I'd be keen to see what Samuel thinks of the site before we go much further. No point reinventing the wheel... (even if it is a crazy blue, red and black wheel).

    -Rachel xx
  15. Lily

    Lily *Believe*

    I hadn't seen that site before. Personally, I don't see it as meeting Samuel's critieria and will be interested in what he thinks. It will help me gauge how far off base I am. It does have some potentially useful info. I agree the design is, um....challenging for MEer's anyway.

    I'm very interesting in seeing what can come of this idea and certainly would like to be of help where ever I think my talents may be a fit.:sofa:
  16. mezombie

    mezombie Senior Member

    East Coast city, USA
    The NAME-US site is the brainchild of two people, Steve DuPre and Lois Ventura, who have ME/CFS themselves. I have problems with the colors as well, but I have always found the content excellent. An easiser way of viewing a summary of the content is to look at the index at Map.htm

    I posted it because I am protective of others with this disease. Samuel, your project will require a lot of energy. Perhaps others have this; I do not.

    I do think NAME-US has much if not all of what you want.

    Of course, if you want to make this a whole new project, I understand.
  17. kurt

    kurt Senior Member

    Another resource is the CAA literature. They have brochures, and also this web page, probably the best one out there for family and friends:

    I'm sure this can be improved, but if someone is just looking for a resource to use right now this is not bad. I particularly like the suggestions of what NOT to say to a PWC, and also the suggestions for friends and family (near the bottom)

    And here is another well-written general statement on ME/CFS, this one is a bit shorter and more focused: me.htm
  18. Marco

    Marco Grrrrrrr!

    Near Cognac, France
    This might be useful. It contains some particular theories on what ME is but very clearly distinguishes ME from chronic fatigue syndromes.

    Generally I think this is an excellent idea. I would really like to see a publication or site written entirely from the patients perspective, providing a summary of reputable research findings and a non-emotive discussion. I also feel the symptom questionnaire currently being prepared here (if open to all on this site) would underpin such a patients' perspective perfectly.
  19. justinreilly

    justinreilly Senior Member

    NYC (& RI)

    Thanks for your clear deliniation of this problem and solution. This is a great idea. I have been thinking for a while that we need this.

    FWIW- I would like to see such a document be credible and viewed by decision makers as credible. I am a lawyer and in law (and in science) we require citations to credible sources for every statement. Ideally, I would like to see every single statement in this document footnoted to a credible source- preferably a peer reviewed science journal primary source article. I think this is essential to having it viewed as credible.
    Also, we need more big view articles to be published in journals. It would be great to get this paper at some point into a journal to enhance it's influence/ credibility. Citing everything is prereq to getting published.
    I don't think we need to reinvent the wheel. Let's take the reviews that are already out there; synthesize, tweak and add and then make sure everything is cited.
    I want to contribute to this. Right now I am low on health so I can't contribute much, but I will do what I can when I am able.
    To make progress on ME, I feel we do need to contact decision makers and media and effectively persuade them to take an interest in our story. Thank you for reaching out to your contact and interesting him or her.
    Be well.

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