Tuesday, October 9, 2012

The Whole Thing

I posted this elsewhere a long time ago. I have added something afterward.

This is only going to be interesting to advocates.

The idea

The idea is to create a small website for a specific target audience. In this case, nondenialist influentials.

Once that is done, a single link can be confidently sent to an influential and educated person.

Change since it was posted

Interestingly, back then, some of the following felt radical and heretical to write. Now it doesn't at all.

Preamble to The Whole Thing

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 superb sites and documents that bite off some of the task.

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.

But I do not think that a THE WHOLE THING of exactly this type exists now. If you say, "Have you tried X?" the answer is yes. All sites I know of, quite naturally, are aiming for a slightly different goal. I have checked. Really, I have. :)

The Whole Thing per se

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 who do not have any connection to the disease.
    • They might want an overview or they might have time to read in more depth.
    • They are analytical.
    • They are decision makers, scientists, doctors, investigative journalists, opinion makers, academics, international human rights advocates, and connected citizens.
  3. Be unimpeachably credible. No ranting and no unverifiable claims. Better to leave stuff out than include anything that vitiates the moral force of our case. (Old marketing strategy: you don't have to list every feature of your product.)
  4. Not try to be comprehensive. The focus is educating a specific target audience. No doctor lists, forums, advocacy resources, or anything else.
  5. Be written like a good article in a highbrow magazine.
  6. Be brief. One enticing main article. The entire site only needs a few pages. Leave them wanting more.
  7. Not be defensive. The terrain belongs to us from now on.
  8. Not get bogged down in detail at any point. Include details that tell an extremely compelling story.
  9. Quality over quantity.
  10. 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 or her own. This IS possible.
  11. Have high search rankings. Surpass all denialist sites in rank for all related search terms. Do this by being well-trusted and therefore well-linked-to from high-quality sites.
  12. Be simple and accessible in web design. Avoid obligatory PDF and Word.
  13. Have a shorter executive overview in an About link.
  14. Be fairly robust to different sub-audiences. Readers might be open-minded, 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 not. They might believe in nonsense or not.
  15. Explain, indirectly and implicitly if necessary, why the FIRST SITES PEOPLE GO TO are wrong. This is a necessary task. Only do this in history and politics (don't draw attention to it but make it available for linking).
  16. Avoid mistakes found elsewhere:
    • Never put denialism on the same footing as science. Politics posing as science does not equal science.
    • Avoid weaselly, compromising blandness that comforts those in positions of authority who want to avoid taking action. The truth gets spoken.
    • Establish that many people suffer severely.
      1. Hammer this home.
      2. Do not be vague.
      3. Point out that a mild sufferer or non-sufferer can become severe AT ANY TIME suddenly or gradually.
      4. Explain what "severe" means and does NOT mean.
      5. Explain what "bedridden" means and does NOT mean.
      6. Establish that many sufferers are bedridden and below 10 on the Bell scale.
      7. Describe what that means for getting medical care, dental care, optical care, dealing with personal business of all types (including fixing bureaucratic SNAFUs and handling mail), dealing with an unhealthy indoor environment, cleaning, having visitors, getting food or water, personal hygeine, and going to the bathroom. Readers will not understand until it is described in detail.
    • Establish that children suffer too.
    • Avoid extreme commitments to particular theories.
    • Never characterize the disease as mild, mysterious, or controversial.
    • Get images right.
      1. Always dignity. Always.
      2. This is NOT a picture-heavy site. It is aimed at abstract thinkers; pictures are 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.
      3. Never show people rubbing their temples, looking sad, or sleeping. Avoid smiles without good reason. Avoid smiling portraits of doctors.
      4. Cannulas and IVs are fine. Wheelchairs are fine. We are not appealing to pathos, however.
      5. Science-oriented images are fine, but not if they imply that sufficient research is being done.
      6. If there are no pictures at all, that's fine. Highbrow magazines don't particularly need them and neither do we.
    • Never use any denialist definition.
    • Call it a disease. Nothing else.
    • Get the name of the disease as right as possible. Denialist names go in history and politics.
    • 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 denialist 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 do.
    • No treatment and test 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).
    • Do these in a separate place for linking (do not emphasize it):
      1. Establish that those who suffer severely cannot do many things that those who suffer mildly or from different conditions, and other people, sometimes take for granted as being useful.
      2. Point out the human rights and civil rights consequences of forcing those things. Whether by parents or friends or authorities or anybody else.
      3. Provide specific and referenced examples of these violations having occurred in real life, not theoretically or "could" or "may" or "might".
      4. Establish that many proposed therapies are political.
      5. Establish that many proposed therapies are harmful.
    • Be independent. No conflicts of interest. Never make contracts with enemies.
  17. Explain every aspect necessary to give somebody a brief overview. Each part can be brief.
    • history including outbreaks
    • science
    • medicine
    • one or two brief personal stories of severe sufferers
    • a brief, journalistically sound description of human rights violations
    • politics including corruption and manipulation


That's basically the idea.

What I am adding now

  1. Link to the ICC and the ICC Primer (ICP) where necessary
  2. Mention that some sufferers have more facts than our latest and best-informed definition requires (or even lists).
  3. Tell the story of Emily Collingridge.

Imagine (I wrote this a little later)

Imagine that an educated, influential acquaintance sends you personal email asking about the disease.


You send ONE link. This is your only chance.

You cannot say "look past the formatting" or "it's out of date but will give you the general idea".


Let's pick Barack Obama as an example (you can substitute anybody you want) and assume he's an acquaintance who knows nothing about the disease.

He has a few minutes (maybe more if those few minutes are compelling).

Now ask yourself these questions:

  1. Do you vouch for it? Does it tell the truth without compromise?
  2. Are you comfortable with its credibility, readability, accuracy, colors, quotes, fonts, accessibility, logic, style, tone, images, associations, loading speed, name, currency, size?
  3. Is it classy, no nonsense, no frills, impossible to get lost in, and straightforward?
  4. Does it inspire trust by the reader, people in the movement, journalists, human rights NGOs, and others?
  5. Will he read more than 10 seconds?
  6. Will he be motivated? Will he take action?
  7. Will he send it to Michelle saying, "Remember Tuskegee and the early days of HIV/AIDS research? Read this tonight and you will not regret it."?
  8. Will his underlings tell their underlings to read it?
  9. Does it emphasize the facts they need to know?
  10. Check again, does it meet ALL of the criteria?

Pragmatics

IMO in order to ensure that it will happen, the scope needs to be outrageously and scrupulously limited. A tiny site to link to. Zero mission creep.

The hard part is rejecting excellent material that does not precisely fit. Perhaps that material can be reused for other scrupulously targeted sites.

For example, a similar The Whole Thing site for unaware sufferers, to support a decentralized campaign of massively increasing accurately informed advocacy manpower.

Conclusion

It is a tiny site. If there is enough interest, then let's start a mailing list to coordinate and just do it.

Samuel

P.S. Contributed idea

Include a printer-friendly version in some way via software (i.e. not a separately-written document).

19 comments :

  1. First of all, a huge problem I see is that on the "nondenialist" side some (not all, but some) people believe all kind of BS, as long as it feels close to their believes (as opposed what is true, to paraphrase Carl Sagan). If you create an closed discussion system, don't stiffle criticism, but instead foster it. If you try replace "their" pseudoscience with "our" pseudoscience, you'll fail. It would be their responsibility to get rid of pseudoscience on "their" side. It is our responsibility to get rid of pseudoscience on "our" side.

    And secondly, don't make the mistake I repeatedly make and try to debate the extremists: The most visible idiots (and trolls?) are not representative for the majority (on either side!). Target the "moderates" on the "denialist side". And not everybody on the "denialist side" is a "denialist" – far from it! Most simply don't know much about the disease. Calling them all "denialists" obscures who you want to target – you start targeting the denialsts only, instead of the moderates you can reach. The true denialists you will never reach, with them you can only wait until they die from natural causes, and until then the only thing you can do is isolate them. (The same is true for the promoters of pseudo-science on our side).

    ReplyDelete
  2. And as to the "nondenialst" scientists on "our" side: Over the years we have gathered a few false friends among the scientists working seemingly "for us". There are those who claim to have found "the cause" (usually in the form of a pathogen), start advertising tests (and usually their test), and maybe even offer "easy" solutions to our health problems.

    Well, I think that a pathogen can be the cause for some, or rather several different pathogens might account for the cause of a substantial portion of people on our side (but certainly not all), and I furthermore think that the search for pathogens should continue. But the results of those pushing "their" pathogen (or their pet theory) doesn't seem to be based in reality.

    I'd say these scientists on "our" side are harmful to us, regardless whether there is a "denialist" side, or what the "denialists" do.

    What should count is not whether it is "denialist" or "nondenialist", but whether it is real, whether it is true to reality.

    And I think the ugly reality we might have to face is that there is not one single cause affecting all with the "Kafka Pandemic", but rather that there are some people who have been hit by cause A, and some by cause B, and some by cause C, and so on. We will see what Lipkin finds. And even with Lipkin, I fear that for some the cause will remain "unknown" (for now).

    So, let's say Lipkin finds in 20 % of sufferers it is caused by Virus "A". And in 10 % it is some auto-immune condition "B" of unknown cause. And in 5 % it is some metabolic problem "C". And then there are some who have some other diseases, common or rare.

    What if there remain (for now) some 40 % with unknown cause? Will those with the diagnosis of "Virus A" or autoimmune condition "B" continue to support the fight? Or will those with "A" and "B" distance themselves from those with unknown cause, when those will be slandered as psycho-cases by the "denialists"? As we have already seen from ME-advocates with respect to CFS patients?

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  3. And simply not addressing the "false friends" on our side is not solution. – we need to address this problem. We need to be active about this and have a stance on what has been proposed, if only "don't know, needs more research" or "don't know, but seams unlikely because study XYZ".

    As to "Establish that many people suffer severely. Hammer this home. Do not be vague.":
    Yes, be very clear about that, but don't whine, don't drone on and on and on about it, don't scandalize and don't make it the only point.

    ReplyDelete
  4. "Zero mission creep."

    I'm probably guilty of mission creep right now.

    ReplyDelete
  5. Hi Peter,

    No worries. It is intentionally a tiny site with fiercely limited scope.

    ReplyDelete
  6. I was surprised to see testing linked with partisanship. I think information on biomarkers is absolutely essential to getting this disease into the mainstream. You want to reference refereed journal articles, which is professional behavior, but I do not think it is partisan to note that there are subgroups that have been defined using a variety of testing. You also want to say that this is a very complex disease - it is not going to be answered by "A" causes "B".

    An example of a good biomarker is the two-day VO2 MAX stress test, (tho you can be sure Wessely et al are hard at work looking for a way to discredit it).

    I have often thought a good way to approach this is with reference to research within specialties - that way you can acknowledge the Wesselyan research as just one
    theory among a LOT more, and if they then read the psychobabblers, they cannot help but notice (if professional) how much is missing from their presentations.

    So you have:

    1. Biomechanics/cardiology (CPET testing);
    2. Cardiology/neurology (NMH/POTS);
    3. Endocrinology (Hashimoto's, hypothyroidism, hypocortisolism);
    4. Psychiatry (theory that patients have "inappropriate illness belief", evidence of secondary depression of the nature of that found in MS and other seriously disabling chronic diseases;
    5. Immunology (natural killer cell dysfunction, 37kDa Rnase-L, abnormal cytokine levels, numerous other defects BUT always in a pattern);
    6. Virology (Coxsackie B recognized as related to M.E. in the UK years ago and still relevant; HHV-6A, HHV-7, EBV [HHV-4], CMV [HHV-5], Parvo 19, adenovirus);
    7. Methialation research (I don't know how to say this concisely).

    See? I think that's the best way to present both the seriousness and severity of the disease, while showing that there is a LOT of scientific research already out there. And that research can lead to treatment.

    Ultimately, I want the reader asking himself "Why isn't this better known?". I don't want to hit him over the head with that revelation - I want him to come to it from the overwhelming evidence.

    ReplyDelete
  7. I loved this idea 'then'; I love it now. I'm glad that you're getting thoughtful comments too. My base stones are usually 1. who is the target audience? 2. What do I want them to i)know and ii) do after reading this. these then, especially the last, greatly direct what is said & how it is said & organized. For eg, if you want more funding of research, that is emphasized, in a manner resonant with the other 2 criteria.

    I can see Mary's point about organizing the extant research - although I might be tempted to add a prefacing comment to the psychobabble that it should be noted that this psych research ignores the existence of the biophysical research.

    Are you thinking of maybe getting a team together to work on this?

    ReplyDelete
  8. Hi Mary,

    You got it exactly in your last paragraph.

    Yes, that is the idea. I think it's the most effective rhetorical approach. This blog often takes different approaches, but it has a different purpose.

    Organizing facts by biomedical specialty is good for exposition, because it is easy to think about and it implicitly emphasizes multisystem nature.

    The site won't have any test /recommendations/, because it is not a medical site. That doesn't mean we don't talk about biomarkers. To the contrary, judiciously chosen ones are critical.

    ReplyDelete
  9. Samuel

    I think this is brilliant and just what is needed to drive change. Thank you.

    Leela makes a good point about knowing who the target audience is and what you want them to know and do as a result of reading it. You may need targeted messages for specific groups of people but I think those could be added when this is sent as the core reference.

    I like Mary S.'s list of biomedical areas to organize the science portion of your outline. Could also use the structure of the ME-ICC to do this. To Leela's point, I think the depth of this section depends on whether the intended target is primarily scientists or non-scientists. Are you thinking non-scientists?

    It might make sense to move the "innappropriate illness" beliefs to medicine because it is not science but is what is being used today as medicine. Perhaps that section could also talk about the impact of the both the lack of treatments and diagnostics and the the poor quality of the medical information has on the practices employed by different types of providers - e.g. the misinformed docs, the docs who subscribe to the false illness beliefs, the expert docs, etc - and the harm that results from some of those practices.

    Mary D

    ReplyDelete
  10. Hi Leela,

    Your outline is awesome. Let's use it.

    All psychobabble and similar goes in history and politics. It isn't science or medicine.

    ===

    If there is enough interest in this idea that we think we can succeed and get a site started quickly, then we can use a mailing list.

    If we do it, my goals are: just get it done (even if only in one or two pages on the entire site), accurately informed people who can collaborate, not to peter out, and stick like nailed glue to the gestalt and criteria and limited goals.

    If it makes sense, I like Creative Commons attribution-noncommercial-noderivs copyright, owned by the team. Click on the copyright link at the bottom of any page on my blog. It roughly means "responsible copying is encouraged".

    ReplyDelete
  11. Hi Mary D.,

    Yes, the site can be used for other audiences, but won't be targeted to them in any way.

    I think the site has to be accessible to an intelligent, educated non-scientist, and not get bogged down in detail, but it can provide information and links that a scientist would be comfortable with.

    ===

    Bogus theories go in history and politics (or human rights). The things you mention definitely need to be included, but not in medicine except implicitly; medicine would cover what's known and can be brief.

    There's danger in mixing the wrong message with the right one. It's partly because if you rebut a calumny, it sticks in the mind of the observer, partly for brevity and other reasons.

    ReplyDelete
  12. Great idea Samuel! As a scientist with severe, acute, infectious onset ME, I perceive that a lot of the data accumulated hangs together to describe a group of people with CFS due to varying causes, which ought to be medically worked up so they can be correctly diagnosed and treated. Dr. Hyde's Missed Diagnoses documents this. Nothing of any scientific value has been done for patients with ME WHO criteria, since CFS was invented to camouflage the ME epidemics of 1985. CFS (Fukuda) excludes ME (Dr.Fukuda's own comment). Conflating the disease ME with CFS can only increase and prolong the pain of all of us who have poor health.

    ReplyDelete
  13. Hi Hope,

    I did not know that Fukuda himself admitted that ME was excluded. I hope it's in an indelible document. That sounds like useful evidence.

    Did he make any claim about the 1980s outbreaks being or not being historical ME?

    ReplyDelete
  14. Dr Fukuda on the stage answered a direct question from the audience by one of the doctors who had been closely involved in ME epidemics. The question was, approximately, "Is your CFS the same as ME". Fukuda said definitely not. The name of the questioner and the date and occasion unfortunately isn't available to my working memory at present. I will remember and can check it with a couple of medical ME experts. Will get back to you asap.

    ReplyDelete
  15. At one of the meetings held to determine the 1994 U.S. Centers for Disease Control and Prevention (CDC) definition of CFS, in response to my question from the floor, Dr. Keiji Fukuda stated that the numerous M.E. epidemics he cited, the Los Angeles County Hospital epidemic of 1934, the Akureyri outbreak of 1947-48 and the 1955-58 Royal Free Hospitals epidemics-- were definitely not CFS epidemics. Dr. Fukuda was correct.Dr.B. Hyde,IN http://www.nightingale.ca/documents/Nightingale_ME_Definition_en.pdf or html available. Topic well covered with bibligraphy in Hummingbird's Foundation for ME
    http://www.hfme.org/

    ReplyDelete
  16. This project will not happen unless there is sufficient interest.

    ReplyDelete
  17. Hi Samuel,

    I think your project is a necessary part of the way forward. I agree about focus on fact, avoiding all controversial/experimental ideas re causation and treatment, and concentrating on what is, which is damning enough.

    Will we use the KIS principle? Keep it simple. Not simple as in unintelligent, but simple in scope, dealing only with established facts, limiting the number of pages, making every word count - 1,2,3... ;)

    It will help to have a specific audience in mind, and why not Obama? I guess we all know enough of him to be able to 'talk' to him.

    You've been thinking about this for a while, I just woke up to the invite, so I've nothing to add just now. But, I'll be working on it, and I'll be back x

    ReplyDelete

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