June 12, 2010


ME + me: Ads on Phoenix Rising?!


    The love of liberty is the love of others; the love of power is the love of ourselves.
    -- William Hazlitt
    Man is a toad-eating animal. The admiration of power in others is as common to man as the love of it in himself: the one makes him a tyrant, the other a slave.
     -- William Hazlitt

Yes, I am still not well and also sad, and also not inclined to write about various topics, but today I shall write a few lines on Phoenix Rising, that I removed myself from on May 25, because of its evidently sick, prejudiced and biased style of moderating (*), and because I don't want to see my writings and name abused for furthering or helping something I have come to see as flawed, biased, and abusive of people that should not be nor have been abused, and especially not in the manners in which this happened.

Anyway... now there are advertisements on Phoenix Rising since a few days. I haven't seen them yet, because I surf with Firefox  with the AdBlock Plus and other AddOns, that sofar have saved me from having to view these ads .

I'll say a little about ads on a patients' forum later, but here start with quoting two items from Phoenix Rising, to show how rapidly and how far things have deteriorated there.

First, a post from a member who is not happy with advertisements that Cort Johnson, The Owner Of The Site Indicated Enthusiastically here, aka Tootsie since his effective rebranding as A Commercial Operator, has now added ads to His Site, also without discussing this, as he did before impose things and people on the members of the forum (whose contributions in fact ARE the forum) without any discussion whatsoever, merely because it suits him or his biases or financial prospects - or so he believes, at least:

It is appalling that on a patient advice and information forum there is a link to commercial treatment plans, we all know how effective they are. Not.

If you really need to make more money, Cort, then advertise products that are not related to treatment, or set up a shop as a route to Amazon and Ebay and many many other places.

Your ad banner, big or small, signals the death knell for Phoenix Rising as a trustable site.

This - by a member since December last year, with over 350 posts - does not seem to me unreasonable at all, simply because adding ads positions Phoenix Rising as a commercial project of or for its owner, while refusing to discuss such things on a patients forum that is in fact written by patients is simply to abuse these patients trust.

Cort Johnson feels otherwise, for here is his nicely moderated and kindly modulated reply to the above:

If you feel that strongly about it then you're welcome to go elsewhere. As I've noted this is just one step in an experiment but if it moves you that strongly I suggest you go elsewhere.

In other words, that are clearer, briefer, and more honest and therefore here less impolitely translated into the very best Ciceronian Latin for this occasion:


For one thing: Having introduced advertisements on a patients' side is "an experiment" as little as is having performed a botched medical operation on an ill person is "an experiment". For another thing: It grossly abuses the trust of those members who have written for PR-F believing and trusting it is a patients' site, and now find it has turned into a career instrument for - and I simply quote his signature - Cort Johnson:

Creator of Phoenix Rising: An ME/CFS Website , XMRV Buzz page, 'Bringing the Heat': An ME/CFS Blog and the Forums

I do not bill myself in such a way, and indeed tend to not bill myself at all, other than to defend my human integrity, dignity, and right to speak as I see fit, but Cort Johnson does.

Also, I do not envy his future, since I am myself no mean satirist, and he has it coming, though he hasn't had it yet, as he also he does not yet realize the deep wisdom in

"Hell hath no fury like a woman spurned"

for Cort has spurned quite a few women, who also happen to be much better writers and better minds than he is, and has done so knowingly and from malicious aforethought, as the legal and moral phrase is, but perhaps mostly unwittingly, for Cort is neither into women, it seems, nor into wit, certainly, since he doesn't deeply care about the one class, and he clearly doesn't really have the upper  equipment required for the other, although he wishfully believes he does.

But I'll save that for later, when I can speak more freely, and here consider briefly just one materially relevant question: Should a patients' site have advertisements?

The brief good answers are "No, not at all" or "it depends, but preferably not". I'll explain, again briefly.

First the "not at all" variant, which seems best to me in case of patients with ME:

These patients tend to have such bad experiences with commercial health-products and health-cures not to burden them with this kind of ugly and gross deception on a forum written by them about their own disease, especially if that forum started as a patients' forum, and if its owner pretends it still is, even while inviting ads and denying fair discussion of others rights and ideas if he doesn't like these rights and ideas himself.

Second, the "preferably not" variant:

If one has set up a commercial project - ProHealth comes to mind - and then adds a forum for patients to it, it is a bit different, for one did not invite patients to set up what has turned out to be or at least look much like a commercial project, but one was honest about its main purpose - making money, in itself no bad motive, since we all need to eat and pay the rent - from the start, and it is the same if one has a blog on some commercial firm's site that pays for its blogging space by adding ads, for again that is and can be understood from the beginning.

But Cort's way is abuse of trust - which is not wise at all if the ones whose trust one abuses are far more capable than one is oneself, if perhaps these intellectually and linguistically gifted people may happen not to be capable of doing the heavy grunt work for setting up a site themselves.

This is why I don't envy Cort's personal future, if only because I wouldn't want to be the butt of one with my satirical capacities (or indeed of some others), and especially not with my specific personal reason for being very angry indeed (that Cort knows quite well, but has treated like the proverbial ostrich since May 5).

But as the saying in Dutch is, a bit improved: Revenge is a meal that is served in cold fury, also to the deceiving Tootsies of this world, however noble their intentions once were, before corrupted by power and financial prospects.

P.S. Do I look forward to that, I hear you asking? Well... the guy has it coming, as far as I am concerned. And I didn't leave my opening Hazlitt quotes standing there since yesterday for no reason at all, while I am also not a hypocrite about my being a bad, bad, very bad man when it comes to prosaically savaging people I have come to despise.

In any case: If you do not want to be moderated by sadists or idiots, you should not write on Phoenix Rising, especially if you have ME. It's unfortunate, as many of its members posting there are fine persons whose trust and efforts are being abused, but that's what it comes down to.

Is there perhaps some happier news, for patients with ME, you may be asking also.

Well... there is a rumour out and about that some sensible people - mostly highly intelligent "women spurned", it seems - have set up yet another forum, for patients with ME, by persons with ME.

Now if that forum could attract many of the writers of good posters on PR-F while at the same time moderating fairly and keeping off trolls, perhaps the good days for patients with ME, at least as regards forums and meeting sensible people with ME and writing good posts without being moderated by persons without wit, without decency, without style, but with bias, with issues, and with personal malice, may soon return, if not on PR-F...

I make no promises, but there seems to be an interesting goose in the process of being nicely cooked, and nicely prepared for public delectation. and it may very well turn out to be a graceful swan eventually, that is indeed arising bravely from the ashes of PR.

So the people who relied and rely on PR-F should not feel overly discouraged: There may be relief soon.

As to ME/CFS (that I prefer to call ME):

1. Anthony Komaroff

Ten discoveries about the biology of CFS (pdf)

3. Hillary Johnson

The Why

4. Consensus (many M.D.s) Canadian Consensus Government Report on ME (pdf)
5. Eleanor Stein

Clinical Guidelines for Psychiatrists (pdf)

6. William Clifford The Ethics of Belief
7. Paul Lutus

Is Psychology a Science?

8. Malcolm Hooper Magical Medicine (pdf)

Short descriptions:

1. Ten reasons why ME/CFS is a real disease by a professor of medicine of Harvard.
2. Long essay by a professor emeritus of medical chemistry about maltreatment of ME.
3. Explanation of what's happening around ME by an investigative journalist.
4. Report to Canadian Government on ME, by many medical experts.
5. Advice to psychiatrist by a psychiatrist who understands ME is an organic disease
6. English mathematical genius on one's responsibilities in the matter of one's beliefs:
   "it is wrong always, everywhere, and for anyone, to believe anything upon
     insufficient evidence
7. A space- and computer-scientist takes a look at psychology.
8. Malcolm Hooper puts things together status 2010.

"Ah me! alas, pain, pain ever, forever!

No change, no pause, no hope! Yet I endure.
I ask the Earth, have not the mountains felt?
I ask yon Heaven, the all-beholding Sun,
Has it not seen? The Sea, in storm or calm,
Heaven's ever-changing Shadow, spread below,
Have its deaf waves not heard my agony?
Ah me! alas, pain, pain ever, forever!
     - (Shelley, "Prometheus Unbound") 

    "It was from this time that I developed my way of judging the Chinese by dividing them into two kinds: one humane and one not. "
     - (Jung Chang)

See also: ME -Documentation and ME - Resources

P.P.S. ME - Resources needs is a Work In Progress that hasn't progressed today.


(*) I think I write the truth, and anyway have the degrees to see and formulate such truths. Also, this is not the last you are going to read on this topic here, for I do not like sadism, especially not in phony and degenerate human assholes - are you there, Marky the sado-anti-semite? - posturing as moderators on a patients forum. But I will save my ire till later...

Maarten Maartensz

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