May 22, 2010


(ME + me:) Warning for the cfsKC site

I continue being not well at all which will help me make this keep very short and which also prevented me doing more on ME - Resources.

My subject is again the dangers of the internet, that I also wrote about yesterday, and notably about the cfsKnowledgeCentrum site.

That site is also the subject of today's brief note, that is brief because I am otherwise occupied, as I will explain on this place tomorrow or the day after that.

I have yesterday recorded my doubts about the ME-CFSKnowledgeCenter.com that, although professionally designed and directed at persons with ME, has at least four shortcomings for me

  • it evidently is directed at persons who know rather a lot less of science than I do, and who are apparently not rated high intellectually by the makers of the site (Ladies Home Journal stuff)

  • it looks too much like American grandstanding to this elderly, very civilised, and quite aristocratic European

  • the people behind the site are - so far as I can see - totally anonymous, except that there is a large amount of videos by Nancy KLimas, and stuff by persons who are grandstandingly hailed as the best and the brightest, but that I have never heard of

  • there is a lot on offer, but a lot that has to be paid, and even what is said to be free is not accessible unless you sign in as a member

Now sofar I have my doubts about such a site, but it may (still) be decent and well-intending, even if geared to profitmaking, as e.g. sites that sell foodsupplements and do things for people with ME.

However, the reasons for my warning in the title start here

  • the set-up looks FAR to much like a clone of Facebook for people with ME, with

  • medical offers at prices for minor treatments that take 2 months of my total disposable income, and without any guarantee

  • and as I indicated yesterday one also has to pay for the pleasure (?) of watching videos of doctor Klimas of some 3 minutes for $ 7,95, to see at most 3 times

These are already considerably less pleasant and much more doubtful, for the financial position of many persons with ME in the US is very bad, and while I see that medical people must live too, I do not see that they should or ought become rich, or ought to try or want to, indeed.

What really moved me to put the warning in the title are these points

  • not only is the set-up very similar to Facebook: In order to become a member of this outfit, and see what the free offers look and sound like, and become what the anonymous makers of the site are pleased to call "members of the community", and by becoming a member one automatically accepts what the anonymous makers of the site and its anonymous legal eagle(s) are please to describe as

    All rights reserved.                                            Powered by: People Like You.
                                                                             Privacy Policy

  • and I have, possibly apart from Microsoft contracts, never read a more atrocious legal contract presented as a Privacy Policy, which is extra-ordinarily bad in that it makes one, as a matter of apparent course also, namely by simply agreeing to become "a member of the community" to sign away a great number of the rights in law I possess in Holland, and also presumably as I would possess if I were a US-citizen, if I hadn't signed them away, that is.

As I said yesterday, the makers, designers and owners of the site are clearly not People Like Me, whatever they claim, and in fact, what with the prices, the ad-stories, the forced ads, the completely insane curtailing of my rights to copy or download, plus the enforced ads in material from the site and quite a lot more, seems designed so as to make a lot of money from the suffering of sick people.

Personally, I don't care who they are, even if they are Nancy Klimas, who I also do not know, or some other doctor (unknown to me) with status among patients with ME: If you are moral and rational, then - at the very least - (1) you do not trick people in signing away their legal rights (incidentally, as the Lightning Process also requires), especially not if they are ill and desperate for help and (2) you do not ask the sort of prices the site asks, especially not of people with ME, who are for the most part very poor and quite ill.

Anyway... I am bound to be believed by few, I fear, since most people are naive, and the site is professionally designed, and promises a lot, and people with ME are often desperate for help and fall easily prone to wishful thinking, and also I am doing what since a few days is absolutely forbidden to ordinary members of the Phoenix Forums while - it seems - being mandatory for or at least much loved by its administrators and moderators:

Speaking evil, or even speaking impolitely, or even showing a veneer of irritation of any administrator, moderator or unimportant member of the forum, and especially the anonymous ones who like to secretly blackening persons they don't like, they are envious or jealous of, or who doesn't quite share their fancy and fine prejudices:

At long last the happy days have arrived that they can anonymously hand them over to anonymous administrators etc. who will give them stiff doses of CBT about etiquette and of GET about their impertinence in speaking less polite and wellspoken than the noble Tim Haggard would - I think was his name (the married queer Crhistian reverend who insulted Dawkins and was outed by a male prostitute, and who mouths his speeches in an extremely sickening way, both to see and to hear) who who is probably the most sanctimonious liar I ever saw, but then - I surmise - only because the moderators and members of the Phoenix Forums are all anonymous, and I have never seen them either.

Aahh well... more later on these moral all-too-human facts of life, that may teach the very few really smart why there have been so many atrocities and what 'homo homini lupus' means (that one is not allowed to say on the PR Forums these days, at least not if there is a whiff of a chance of a probability that it might be conceivably be directed at an admininstrator, moderator, or sickeningly sanctimonious half braindead anonymous member, who may indeed have ME, perhaps, but who may in fact be anyone at all, although this again may not be discussed on the PR-Forums.

But enough of this.

For now I have only this to add about the ME-CFSKnowledgeCenter.com: For me it stinks, especially but not solely because of the Privacy Policy (which I consider to be of very doubtful legality, if not outright illegal, under Dutch law); no person ought ever to sign away, directly or by implication, such rights as he or she has in law; and in general the Romans had it quite right with

Buyer Beware!

And finally, having mailed a little about this, I can provide the American (and other interested readers) a relevant link where the promises and legalities I discussed are reflected upon in an American legalese environment:

This I can't judge well except that what I read was not high praise of Nancy Klimas, who seems connected to this ME-CFSKnowledgeCenter.com with this most peculiar socalled Privacy Policy that by my understanding is immoral and is or ought to be illegal.

P.S. Being uncommonly highminded (like most really gifted people, except that I am more honest about it than most - and if you doubt the highmindedness of the highly gifted, consider Muhammad Ali of Gary Kasparov, who also are not shy about their excellencies, and personally I fail to see why they shouldn't for the one could beat me to pulp and the other beat me in a blind simulataneous play any time they wanted, and the same for almost anyone), I am highminded enough to remark that very few people dare to write pieces like the above, were I also can assure the reader I would have been far sharper if the outfit were Dutch.

And to keep things straight: In ANY case this site is probably not my cup of tea, because it is not directed at people like me, and if it were I could pay none of it if I wanted, but what really gets me incensed is the stinking Privacy Policy: You don't do that to people, or if you do it is because you intend to fleece them without possibility of redress. (Persons who believe I am mistaken about US law may explain my mistakes to me, by e-mail, provided they can do so logically and without threats and are not anonymous.)

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

Supplements on ME

  ME: On having severe ME
  ME: !! Seriour Health GET + CBT Warning !!
  ME: ME and Human Rights
  ME: Back to the Middle Ages with professor Simon Wessely
  ME: Back to the Middle Ages with professor Simon Wessely - P.S.

Studies in MEdical Sadism

  0: Studies in MEdical Sadism (overview + Kumar & Clark's Clinical Medicine)
  1: "Die Mörder sind unter uns" (the baseness of some medics and politicians)
  2: "101 Good Reasons" (clarification CBT+GET & 101 reasons by G. Crowhurst)
  3: "The evidence & the techniques" (current techniques of MEdical sadism)
  4: Intermezzo - Lucian (a very disrespectful most intelligent satirist)
  5: The amazing & great Kim & Dr. Yes (alas still not well-reformatted yet)
  6: Herr Professor & Frau Doctor Wessely (The Real Truth metavisually)
  7: Professor Simon Wessely's many mental issues (just so: a real sicko)
  7a: P.S.: Professor Simon Wessely's many mental issues (the logic of it)
  8 : Professor Wessely's crap completely clarified (visually) (DrSpeedy+profSW)
  9: Studies in MEdical Sadism - 9 : Dr. Yes maltreated
  ME-disch sadisme op wereldschaal: Zeer verbitterend nieuws
  ME: Waarom dokter Mengele medicijnen studeerde - 1
  ME: Waarom dokter Mengele medicijnen studeerde - 2
  ME: Uitstekende studie over ME en CGT en GET
  ME: !! Seriour Health GET + CBT Warning !!
  ME: Unsere Doktoren - Ohne Wörter - 2

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


(*) Personally - from a true surfeit of evidence - I do not like academical lectures at all, and rarely saw or heard a good one. Apart from that I read much faster than people can talk, while talking as a rule is much less considered carefully than written prose, however fastly composed.

For these reasons, videos and lectures are not for me, but that is most probably a somewhat personal idiosyncracy: I MUCH rather and MUCH easier and MUCH faster as well read than listen to real or would be scientific lecturing.

Also, I do not assure people I d not know at all that they are People Like Me, nor do I write legalese like the people who say they are People Like You, for other people may not be like me at all, in quite a few relevant ways, and indeed other people may not like to be like me - e.g. including ME - at all, indeed just as I feel about some people I could name.

Maarten Maartensz

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