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I've read the entire Kafka Pandemic blog and I really recommend anybody with these conditions to read the whole blog. I'll put a link to it. And I think once you deprogram yourself, the next thing to do is to educate people ... -- Youtube video



POLL: This question relates to our strategy.

RIGHT NOW, will the health authorities and industries change more if we COMPROMISE (accept, appease, cooperate, go along with, explain, give them what they want, seek common ground, etc.) or OPPOSE (fight back, resist, seek allies, show our strength, organize, etc.)?
Choose the closest answer.

(Also, how many times did you leave the house in the last 365 days (for any reason)?
)

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[Update: the poll got reset to zero recently, presumably due to a bug, don't know if it is updating. It might come back with your vote intact.]

What strategy will make the authorities change?

Saturday, December 4, 2010

Welcome to The Kafka Pandemic

Two forces have ruled my life. One is a disease; the other is a tendency of humans to organize the world as if it were in a Franz Kafka novel.

I will call the disease The Pandemic and the tendency Kafka-nature. Soon you will see why I use my own names.

You might not have heard of The Pandemic at all.

It has been a long time since I read Kafka, but the reference is inadequate. Many sufferers of The Pandemic would propose that you add Orwell, Alice in Wonderland, Job, and Mickey Mouse.

I shall explain, in part, why this is so.

The Pandemic

Any human can get The Pandemic. It can affect nearly every part of your body. It is always immunological and neurological. The vast majority of people never recover.

Knowledgeable physicians have compared the suffering to late-stage, untreated AIDS. A distinguished scientist and physician of both diseases stated matter-of-factly in the New York Times that she would rather have HIV.

Severity varies. In the early stages, many pass for normal, while others are fed through tubes in their stomachs, bedridden, or housebound; millions are in constant pain; many die.

The death count remains unknown. Statistics have not yet been required to list The Pandemic.

Researchers estimate 17 million sufferers. About a million are in the USA. This is similar to HIV/AIDS.


We don't yet know whether to call The Pandemic a pandemic in the strictest technical senses that apply to HIV/AIDS. For example, we don't know the growth rate in any region.

Of course, it's just a word. To preclude cavil, I use it in one of its loose dictionary senses until we discover more:

an epidemic that is geographically widespread; occurring throughout a region or even throughout the world
Wordnet

The Pandemic occurs throughout the world sporadically and in outbreaks.


Now let's turn our attention to Kafka-nature.

Kafka-nature

The key thing to know is that The Pandemic is ruled by Kafka-nature.

Governments do not research it, but they claim to, using disease definitions that describe unrelated conditions.

Studies use subjects who do not have The Pandemic.

The official treatment in some places is a program expressly designed to make you believe that you do not have a disease.

Some organizations, which state that they represent sufferers, accept money from those governments. They promote those claims.


The Pandemic is so perfectly ruled by Kafka-nature that the disease does not have a recognized name that applies to it alone.

The simple and everyday act of using a name inherently spreads confusion because it has been used for other things.


Taking their cue, doctors and the public assume that The Pandemic is no more serious than hay fever. Those who fill out death certificates rarely think to list it. Instead they merely list the organ that failed.

One result is denigration. You will find that medical staff throwing a child who was unable to move into a swimming pool is only the beginning.


Progress has been made despite the efforts of denialists. Science has happened.

HIV-like virus

In peer-reviewed research in top journals, The Pandemic is associated with an HIV-like virus (a retrovirus, which integrates into your genome) and related retroviruses at high rates.

In published and unpublished research, the same retroviruses are associated with other serious diseases.

The same retroviruses, when found, have been found in blood donors and control subjects in North America, Europe, and Asia, at rates between 1.7% and 6.8%,1 prognosis unknown. The blood supply is not screened.

Governments have known for a year and a half that the retrovirus has been isolated and is infectious.

They have funded zero clinical trials.

This blog

This blog exposes both Kafka-nature and The Pandemic. Neither goes away when you ignore it.

It has been a long time in the making. I wrote an article years ago called "The Kafka Pandemic" and others since then. I planned to publish one or two of them traditionally, but a blog is better for many purposes. Most of these posts are the result of months or years of working on them, a few minutes at a time.

There are connections to biomedically-related diseases and other denigrated diseases. I will try to include them, and I invite your help. For example, tell me about another disease that is related to what I am writing about. In my view, these connections are critical in science and politics.

The double meaning in "The Kafka Pandemic" is deliberate,2 but for now I only intend to talk about Kafka-nature as it applies to The Pandemic and related diseases.

I want this blog to be accessible, easy to read, and easy to use. I might change the design. Now is a good time to tell me your opinion.

Who we are

If you have not yet joined our struggle, I hope you do. We are no longer isolated from one another, no longer even a community with highlights of action against the sheer edge of futility, but a rapidly accelerating, intelligent global movement coming into our own. We shall command respect from every power we need to deal with. To do this with us, you must learn, climb far above the lies, because truth is what holds us together, truth is how we coordinate our decentralized projects, and truth is how we will prevail.

I will enjoy reading your comments.

Samuel

Notes

Acknowledgements:

I want to thank my reviewers, who gave valuable feedback and encouragement.

Footnotes:

1 These numbers are changing as methods improve and new places are tested.

2 A pandemic of Kafka-nature + a biomedical pandemic that is ruled by Kafka-nature = two meanings.

20 comments:

Linda said...

More Samuel, more please. I'm so glad you've added your voice - especially now, it's been missing far too long.

Meg said...

This is truly excellent. I look forward to following this blog. All I can say right now is thank you so much for doing this.

gracenote said...

The aesthetics are nice. I actually find larger fonts more difficult to read, but it's not difficult to make the print smaller.

I like that the site is simple and elegant.

leelaplay said...

not sure if my previous comment went through so will say again that I'm happy to be able to hear your voice. The kafka reference is all too apt (as is the throught he rabbit hole). Look forward to following your blog.

Samuel Wales said...

Hi gracenote!

What about small fonts is better for you?

Do you have to zoom every page or only once for the site or tab? Do you use a browser that remembers the zoom level? Do you use an extension like page zoom?

Thanks for telling me.

Greg Crowhurst said...

Samuel,

Superb ! Stimulating,intelligent,
Kafka said :

"From a certain point onward there is no longer any turning back. That is the point that must be reached."

I really, really like your focus :

".. tell me about another disease that is related to what I am writing about. In my view, these connections are critical in science and politics. I will possibly use a new term, The Even Larger Pandemic (TELP)."


Absolutely Samuel,these connections are key.

Take this comment :

"did you know squealing cars hurt my ears..and other noises hurt me too..the volume and confusion are dreadful" Written by a Severe ME sufferer ?

No, this is Birger Sellin,an extraordinary poet who has autism : such a connection.

I am so glad too,Samuel, that you have received good comments about your blog design.

cinderkeys said...

I'm also happy that you've added your voice. I look forward to more of these insights.

zombie said...

I am so glad to see this blog of yours, Samuel! You are smart and well-informed and your thoughts deserve a public audience.

I like what you've written so far and find the format easy to read.

Great job!

vdt said...

Samuel, I am intrigued by your first blog and your reference to Kafka. My life has indeed been Kafkaesque, since I was misdiagnosed with all kinds of illnesses for 24 years before I was diagnosed with ME/CFS.

Everytime the headlines shout "CFS Not Caused by Infection" my children go into denial and I go into vertigo.

I look forward to your future blogs.

kathryn said...

As the others said, it is so good to hear your Voice and the Kafka analogy is perfect.

I love the design; I am so tired of scrolling across long lines of type in order to read blogs; I usually have to Ctrl+ 3-4 times to get the print dark enough, large enough, but I did not have to do that with yours...thank you very much.

Yes, the time is now: we must keep up the pressure on our government agencies, the media and the scientists.

It is a crime that the patients have to fund WPI, yet we must give all we can to do so; we must also raise our voices at the 'shut-out' of the WPI in publication and study circles of power.

We must use our people with scientific knowledge to refute studies that deny our reality and knowledge of The Pandemic; as De Mierleir stated: "crimes against humanity".

The meek will join the denialists, but we must disseminate the power of those who have seen the light: Alter, who now knows patients personally, and knows the devastation this illness causes, and Mikovits, Klimas, Singh and Silverman, to name those most well known.

The MCWPA and PANDORA brought us the Ad and the press release that has the public now talking about XMRV and The Pandemic, and its facts are still relevant and cannot be denied.

The IiME conference will again tell the truth; Mikovits and Annette Whittemore will be there, among others in the know.

May 12, ME/CFS Awareness Day will be a huge opportunity for us; we must plan something spectacular in every country, something that will shame our governments into action that will impact the testing and treatment of patients at once.

Thank you so much Samuel, for your blog. It will stimulate much discussion and advocacy, I feel.

Anonymous said...

Inspired. Brilliant. Chilling.

Thank you for your intelligent humanity Samuel. Go get'em!

Nicky Reiss said...

Welcome to the world of ME bloggers! I've certainly felt like I was living in a Kafka novel, and coincidentally visited Kafka's home/museum in Prague before being diagnosed, but was too exhausted to get beyond the shop and couldn't understand why!

Anonymous said...

Bravo, Samuel. Smart and bold. I like the 'rapidly accelerating, intelligent global movement coming into our own', yeah!

'The Pandemic' is a sly way around the unrelenting name controversies and even helps us as patients subtly shift our thinking about this wretched disease.

Good work, well done. Look forward to reading your long-prepared articles and will watch for them.

p.s. the font size is much too large and distracting, not in a good way. I reduced the font size of your text in my browser four times before it was at a non-irritating size. Please don't make us work so hard to read your excellent words. Have a look at other blogs (suggestion: CFS Patient Advocate, for example) for a font size range ideal for easy readability (hint: nothing under 8 pt. or over 12 pt. please, except headlines).

Angela Kennedy said...

Congratulations Samuel on this new blog. The Kafka analogy is excellent. Which Kafka stories are you thinking of most here? I always think of 'the Metamorphosis' and 'the Trial whenever I think of ME/CFS and what is being done to people.

moigo said...

Thank you for sharing your day to day reality (wonderfully captured and important) and for the excellent portrayal of this insane situation in which so many find themselves.

oerganix said...

Just a reminder that Jan 21 is XMRV Bloggerama day, so write one with XMRV in the title so google can find you.

This life is indeed Kafka-esque at times. I'm looking forward to seeing through your eyes once in a while.

Best wishes on your new blog!

L.P. said...

Oh Samuel...you are ROT (right on target) with every single thing you are writing about.
Lyme Disease is a *Pandemic* IMHO.....so perhaps you can expound on that and how our own government denies treatment from Lyme literate Doctors to people who are deathly ill, but cannot get treated FOR Lyme because of *Political* reasons.
Hmmmm.....maybe I will start my own blog.....L.P.

Anonymous said...

BRAVO! No matter what the illness/disease/syndrome (or tag placed on our sufferings)all need to be heard. Educating is key to understanding and research. Too many suffer without support.

elizabeth said...

So glad to have found your blog Samuel.
So clear (despite not listing the illnesses, or at least I haven't found them yet), and so well written.
Inspiring.

Samuel Wales said...

Hi elizabeth,

Thank you.