Nederlog

 

 February 11, 2011

 

me+ME: On ME-activism



Yesterday I outlined that and some of the reasons why I call myself presently "an expert on ME" - having it for the 33rd year, being a psychologist and a philosopher, with excellent degrees all acquired while having ME, having read the last 15 months a great deal about I wasn't aware of before (*), having read a lot of US and English internet forums for patients with ME, having seen the antics, nonsense, posturing and bullshit not only of fraudulent psychiatrists trying to appropriate ME and its patients as a prop for their incomes, but also having seen the the antics, nonsense, posturing and bullshit of self-styled "leaders of our community" (of persons with ME) Cort Johnson, Patricia Carter and Marly Silverman, whom I regard as incompetent to speak for me, and indeed about ME, indeed both morally and intellectually.

Today I shall make a number of point about ME-activism, continuing in a way these items of this year, and most I wrote in Nederlog in 2010 that was almost exclusively about ME (12 MB of text, 12 MB of images):

And I shall make these points under the following headings

Sections

1.   on presuppositions
2.   on physical problems for ME-activism
3.   on forums of ME-patients
4.   on anonymity + internet = trolling
5.   on arguments and argufiers about ME
6.   on the bullshit "unity"-trope for ME-patients
7.   on doing your own thing on your own level
8.   on advocating for ME-patients
9.   on organizing activism for ME-patients
10. on my own take and position concerning ME

Nothing I will say is my final thought on the subject, but it is very likely what I say will inform my own activities around ME. Also, what I write - as usual - is directed first and foremost to the minority of truly intelligent persons and not the majority of followers, posturers, con men and women, trolls, and those writing on forums merely to be social, virtually speaking.

So this is probably only of interest to a few who are intelligent and have ME (or take care of someone with ME) - to which I must also add (and see section 10 below) that my own position with ME is morally, legally and personally quite unique, since a great part of my problems with ME are not so much due to having ME, which I did not have in a severe form the first 10 years, but [A] to my protesting, while having ME, against the decline of civilization, standards, morality and science in the universities in general and the University of Amsterdam, where I also was 'a studentleader' for that reason, and was effectively removed thrice, invalid and all, to the great sadistic glee of its board of directors (also thiefs of 45 million guilders), from the University of Amsterdam, and not allowed to get the Ph.D. and [B] to my protesting, while having ME, to the dealing of drugs from the house where I lived, with attendant enormous noise most of the night, which made it difficult or impossible to sleep, and with murder threats by the dealers, when I objected, all protected by mayor, aldermen, municipal police and Amsterdam bureaucracy, for since I protested this 22 years ago - since when I have been refused ALL forms of help beyond minimal dole, whereas it was all the time admitted I am an invalid - only in Amsterdam, only in soft drugs, at least 220 billion Euros - euros 220.000.000.000 - have been turned over, protected by mayor, aldermen, municipal police and Amsterdam bureaucracy, who very probably take a percentage, since decades, though this will be very difficult and dangerous to prove.

The facts about and around my own special position with ME in Amsterdam have been outlined in Dutch in ME in Amsterdam, and are known to Amsterdam's mayors, aldermen and council members since 1996 at the latest (in fact, mostly since 1988-9 or before).

They have never been contradicted in any way, while they are clearly defamatory and slander if false, and detail major crimes if true. They are major crimes by anyone's standards outside Netherland, and are major crimes by the Dutch laws, but apart from myself, very few Dutchman care, or want to risk the ire of the mayors, aldermen or drugs maffia in Amsterdam, that effectively and in practice are the same hugely profitable totally corrupt, mortally dangerous institution, much like civic corruption during the US prohibition era, when alcohol was forbidden, and police, bootleggers, and city administration could get extremely rich in a short time by helping each other to trade illegal untaxed and uncontrolled commodities with huge profit margins. (**)

1. on presuppositions

Since in fact what one knows, beliefs and presupposes is of key importance to what one is, may do, and succeed or fail in, I must start with articulating some presuppositions that involve knowledge of mathematics, logic, philosophy of science, psychology and ME.

As to the first group and in general, see

As to ME in particular, I repeat - with some changes and deletions (*) - my ME -Documentation in this section

This is an attempt to gather a number of useful and interesting documents relating to ME.

Scientific material about ME

                              Subjects + summaries Type Size From
 
Ten discoveries about the biology of CFS (pdf) pdf 154Kb cfids.org

This is by prof. Komaroff (Harvard) and is a brief pdf file that lists ten reasons why ME is not at all "all in the mind" and ME is a real organic disease

Canadian Diagnostic Criteria pdf 529Kb InvestInMe

This is a medical report prepared for the Canadian Government by 14 medical doctors and professors, that is widely regarded as the best medical summary and the most sensible criterions to define ME. This is the full version with additional material. On the net there are various briefer versions. See the next item.

Canadian_Overview pdf 976Kb InvestInMe

This is a more popular and readable version of the last listed Canadian Diagnostic Criteria prepared by two doctors who wrote the Criteria. It provides the best overview of ME for people who did not study medicine.

Dr Byron Hyde's Nightingale ME Definition pdf 98Kb InvestInMe

Dr Hyde treated many patients with ME and prepared in 2007 his own definition for the Gibson Enquiry. This is it.

Dr. Byron Hyde's Little Red Book pdf 143Kb InvestInMe

Dr Hyde's 2006 description of what ME is and isn't.

Dr. Myhill's CFS Book pdf 6.9MB drmyhill

Dr Myhill treated many patients with ME and has developed a specific set of tests and treatments. This is her book about it.

Dr. Myhill's mitochondrial theory pdf 1.6MB IJCEM

Dr Myhill has a specific theory about ME viz. that it is due to a malfunctioning of the energy-pathway in the mitochondria, which is a theory I am myself a bit partial to, because I thought up much the same theory for my complaints in 1987.

Dr. Bell's mitochondrial theory html 29Kb InvestInMe

Dr Bell treated many patients with ME and also developed a theory about it. The above reference is to a html-file. There also is a book on paper by him on his theory, for which see his booklist on his site.

Important sites with much material

InvestInMe InvestInMe: InfoCentreLibrary

This is a well-done extensive site with much material and many pages (left) and a fine collection of html and pdf files (right) part of which is linked on the present page.

Phoenix Rising Phoenix Forums

The left links to a useful, site by Cort Johnson, an American with ME for some 30 years, which much material and many files. He also created a forum (right) about ME/CFS, that must be interesting for anybody with ME or with an interest in ME.

DoctorMyhill Dr. Myhill's ME-Book

These are the same links as above and are repeated here because especially dr. Myhill's book may be helpful - in some respects - for persons who do not have access to a good medical doctor who is informed about ME.

Hillary Johnson The Why

Hillary Johnson is an American investigative journalist with ME since decades who wrote a fine book about the oddities surrounding ME in the US in the 1980-ies and 90ies. The book is called "The Osler" and the left side gives the link to the site about the book, while the right site gives the text of a lecture by Hillary Johnson in May 2009 that explains and comments some of medical, political and institutional mismanagement of ME.

The Hummingbirds' Foundation for M.E. The medical facts about ME

This is an extensive site hosted in Australia by patients with ME. It is a good systematic overview of the facts about ME.

The controversy around ME

In fact, there are quite a few controversies around ME, but most of them are connected to if not caused by the fact that three groups of mostly psychiatrists - organized around doctor Reeves in the US, doctor Wessely in the UK and doctor Van der Meer in Holland - have succeeded over the last 20 to 30 years in (1) psychosomatizinig ME: according to them it is a psychiatric disorder without somatic basis and (2) manipulating the research funding for ME into the pockets of psychiatrists of their own kind and not into any scientific biomedical research.

This is odd for various reasons four of which are that (a) the theory of Wessely and co. is not properly scientific or rational in any decent sense of the terms "scientific" and "rational"; that (b) there is a lot of excellent biomedical evidence that ME is a real organic disease, as indeed it is according to the World Health Organization (WHO) since 1969; that (c) although not helping persons with ME, as is the normal course for such persons in the US, England and Holland, at least, since decades, surely must be profitable for governments and insurance-companies that want to save money, even so this practice is neither moral, nor medically warranted, nor legally correct, and many persons with ME, that is a real and serious disease according to the WHO and thousands of medical doctors, are without any real medical or social help essentially because a handful of psychiatrists have succeeded in manipulating the health funding and governmental health policies with regards to ME; whereas (d) there are excellent scientific arguments to the effect that the psychosomatic psychiatrists of the Wessely school are mistaken in all their major claims about ME and that their published so called "scientific research" on the subject of ME is scientifically worthless and morally despicable, and also probably not properly legal either.

This section needs more documentation, but for the moment here are three links

Malcolm Hooper Magical Medicine (pdf)

This is professor Malcom Hooper's 2010 summary of the many arguments against the psychosomatic psychiatric school of Wessely, also with much evidence about the great harm Wessely and his co-workers have done to ill people.

Malcolm Hooper THE MENTAL HEALTH MOVEMENT:  
PERSECUTION OF PATIENTS?

This is professor Malcom Hooper's 2003 argument against the psychosomatic psychiatric school of Wessely, and in defense of many of his patients 

Criona Wilson Sophia and ME

In 2005 Sophia Mirza died, horribly and painfully, after having spend years in bed without help, without being able to speak or sit up, and after having been sectioned and maltreated horribly by co-workers and/or followers of professor Wessely. The link is to the website that her mother Criona Wilson made about her, her disease, death and maltreatment, and is quite impressive, also because everything that happened is given in precise detail.

Eleanor Stein

Clinical Guidelines for Psychiatrists (pdf)

Not all men nor all psychiatrists are evil, bad or mad, and Eleanor Stein is a psychiatrist who isn't and who wrote a good set of guidelines how a good psychiatrist should react to persons with (apparent) ME.

If you have not read and rationally comprehended most of the above, you are, as far as I am concerned, not really qualified to judge about ME or indeed about me (and the last requires rather a lot more knowledge than about ME).

Of course, you may have ME and be a perfectly sensible and moral person nevertheless - all I am saying is that something like the above, most of which is quite well written, as science and medicine go usually, is necessary to be able to rationally judge things, events, assertions, claims and persons relating to ME, also including claims by "scientists", "patients", and "advocates" concerned with ME.           Back to Sections.

2.   on physical problems for ME-activism

Two important reasons for my reactions to Mindy Kitei's Editorials - see my

of late are that - while I think she means well and is well informed about ME/CFS - firstly that she (like many patients with ME, in fact) has some quite romantic notions about activism for really ill patients with ME, and secondly that she has mistaken notions about the virtues of unity.

The last mistake I shall take up below, and about the first mistake I merely say this:

The activism Mindy Kitei seems to have in mind, and advertises by repeating the Aids Activist Larry Kramer's opinions and speech(es), is beyond me and beyond most persons with serious ME - while it is also far too romantically misconceived by me (who has seen a whole lot of activism and activists in his life, and was a studentleader, and is the oldest son of heroes of the Dutch Resistance against Nazism, and prominent members of the Dutch Communist Party: If I have opinions on activism, they have the merit of being based on very much more relevant knowledge than anyone I know with ME).

This is quite a serious concern for me, because I know that a number of the most intelligent and sensible patients I have met on forums for patients with ME, indeed like myself, have exerted themselves far too much by writing for and discussing on ME-forums, and are much more ill now than they were in 2009.

If this is the case, simply by doing too much in writing posts for a forum of patients, many more will be much worse afflicted if they indulge in the physical activism that Larry Kramer, and in his wake Mindy Kitei, propose to patients with ME.

So I'd say that persons with ME who want to be active in advocating or putting pressure on bureaucrats or politicians should do so mostly by using the internet, and not by physical demonstrations, or by getting arrested for breaking the peace.

There remain two problems, namely (1) how to use the internet effectively and (2) it is still - quite easily also - possible to endanger one's health merely by writing for the internet, but then that risk, and the consequences if it does happen, are very probably much less serious then what a pwME may get from physically attending demos, trying to emulate Larry Kramer, or getting arrested.              Back to Sections.

3.   on forums of ME-patients

I have last year written rather a lot for the Phoenix Rising Forum - PR-F - and a bit for the MECFS forum - ME-F - but don't do so anymore: I have withdrawn from PR-F, and assume that was what The Owner Cort Johnson and his moderators anyway wanted to achieve, ever since February 2010, simply because someone like me is dangerous for persons with their abilities in their positions (I can take them apart in argument or by satire whenever I want, which they can block only by restraining argumentation or removing me somehow), and I have been thrown from ME-F, because I criticized nazi-like bullshit that also closely copied Wessely's opinions by friends of The Owners of that forum, who anyway don't want the likes of me for precisely the same reason as I am not someone liked by Cort Johnson and cronies: I know more, am much better educated, and am a much better writer, argufier, and satirist, besides being a psychologist and philosopher in terms of degrees.

Somewhat naively, I had expected that being a real psychologist and philosopher in terms of degrees, and having ME for over 3 decades now, would make it easier to make myself heard and "respected" as the so popular phrase is, but there I as, as it turned out, totally mistaken: The only ones who liked to read what I wrote where those who had the intelligence to comprehend it properly, for the most part, and those are - not only on the subject of ME - in a small minority.

There is an equation on the internet that contains much truth:

anonymity + ordinary people = trolling

Indeed, that is what it comes down to, not only on ME-forums, but it seems on nearly all social internet-forums in so far as they are anonymous, with contribution by a vast majority who decline to give their real name, their educational accomplishments, their outlook, or their erudition and were not capable of making a decent internet site:

It seems as if ordinary men (and women, and I am not ordinary, not in background, not in education, not in intelligence and not in life experience) feel in majority mightily relieved to find themselves without ANY effective personal responsibility or personal accountability, as soon as they are the anonymous members of some social forum.

The main reason this is such a relief for them, is that at long last they, together with the majority of likeminded equally intelligent similarly morally gifted ordinary folks, can take revenge on anyone outstanding, anyone more clever, better educated, better writing then they are, whom they now feel free to pester, persecute, and interfere with to no end, on any pretext.

This seems to happen on all social forums where the majority consists of anonymous ordinary folks, who there display all totalitarian attitudes, envy, cruelty, stupidities, and democratic  selfrighteousness of the mass of the undereducated, the stupid and the cognitively challenged, and make any protracted rational debate of virtually anything whatsoever totally impossible.

For this reason, social forums are a waste of time and energy for the few who are truly intelligent, highly educated and of good will: That you belong to that few - and it is that few ordinary folks object too: Sports heroes and media celebs, by contrast, are adulated as if they are nearly divine - is sufficient provocation for many to try to level you, shut you up, or remove you completely, presumably for the same reason as Mao's Revolutionary Guards killed persons with glasses: 'You are too intelligent; that is disrespectful for those who are not; you are a danger to our community - off with your head'.

This happened to me on two forums; it happened to at least five others I know from such forums as intelligent, good writers, and highly educated; and it is what happened all through human history: Whomever tries to emancipate mankind, must expect to be crucified, burned alive or tortured, by ordinary folks or in the name of ordinary folks, and usually for the awful crime of not being like everybody else who is ordinary, and therefore worthy of "respect".

In brief: Social forums are useful for finding and exchanging information (about a disease, on ME-forums); meeting people; and providing links, but they cannot be used for rational debate amongst rational highly educated persons, nor can they be used to organize any advocacy.

The reasons are as given, to which one must add that, besides, persons with ME come from all walks of life, all levels of (mis)education, all manner of religion, all ages and so on, namely for many more characteristics - there just are no shared features apart from (a belief that one has) ME and being human, and these, as men and women are on average, are not at all sufficient to guarantee anything like rationality, reasonability, politeness, or whatever else that is required for intelligent debate (wit, relevant knowledge, self-control, erudition etc.)

In fact, on social forums, the average you meet is like the average reader of the Daily Mail - or worse, for "our community" of "persons with ME", has on average an intelligence that is subnormal, what with brainfog and fatigue; has on average energy that is very subnormal, what with ME; while the average education in these postmodern days is that  of a pomo moron, even if one has got a degree in sociology or media studies or empirical theology, or  even in psychology.

And just as bad money drives out good money - Gresham's law, of much wider application than to money - so bad people and bad communications drive out good people and good communications.

So while unrestricted anonymous social forums are good for virtual socializing, and for finding and exchanging and providing information, and also for getting to virtually know of persons one might find interesting, they are not good for much else, if only because the many kinds of folks attending them, and their average lack of education and of shared orientations.

Back to Sections.

4.   on anonymity + internet = trolling

In fact, I have said most of what I wanted to say above, and in Nederlogs like

but I do want to add one personal note, related to the title of this section, and the various obnoxious anonymous nutters and assholes I have encountered on ME-forums:

I have found few who can write and think rationally, and few who are scientifically qualified, which is more or less to be expected, the way human beings are, but I was unpleasantly surprised by the levelling or totalitarian attitudes of quite a few on ME-forums, by large doses of pettyness, fallacies and impoliteness, and by the totalitarian ease with which totalitarian small minds demand "respect" and presume to speak "in the name of our community".

As my title indicates, which is an equation I found on the internet, I am willing to assume it is mostly that.       Back to Sections.

5.   on arguments and argufiers about ME

I have meanwhile read lots of arguments - in which, being much concerned with logic, I am much interested in, and know much about, logically speaking - and lots of argufiers, but most that I read was low quality, and not only by patients with ME.

One serious problem as regards arguments, argumentation, and the fact that few patients with ME I have read are worth much in the way of written argument, is that what they are opposed to, specifically what emanated from the CDC, King's College, and Radboud University, is intentional pseudoscience: It is written to deceive, it is fraudulent, and the most important of those who produced it - probably not many of their followers - full well know this, I have meanwhile found.

This makes arguing about ME more difficult than it would and should be: One's opponents are professors of psychiatry who are fraudulent pseudoscientists, who use scientific sounding terminology and pseudorational argumentation to propound bogus science and bogus therapies, the end of which is that it keeps them in a job and in pay.

And this makes arguing about ME more difficult in that it adds quite a few layers of complexity, irrationality and above all dishonesty: One is not arguing against honest persons who are mistaken and know they may be mistaken - one is arguing against dishonest persons who made a travesty and propaganda instrument of what they are pleased to call 'evidence based medicine'.

A reason this may become quite important in a few years is that the same as has been going on with ME, say the psychiatrization of real disease, is now happening on a much larger scale in the DSM-5 to be of the American Psychiatric Association, that seeks to psychiatrize all medicine, in the interests of psychiatrists: If this succeeds, people with ME and other diseases that are either so far lacking a biomedical explanation or have only very expensive therapies, will be classified and treated as nutcases, and denied access to real medicine.

Back to Sections.

6.   on the bullshit "unity"-trope for ME-patients

There is, since months, possibly at the instigation of Marly Silverman, a widely repeated call or and insistence on "unity" among ME-patients. Logically speaking, this is a wellknown Stalinist and Maoist means to get rid of all opposition: They disagree with us, "therefore" they are "against unity"; "our community" needs "unity"; who is against us are "bullies", "dissidents", "opponents", "traitors" and what not, if they are not "mad" to start with - for isn't unity a great virtue?

It is, in hordes and totalitarian dictatorships, and in authoritarian religions. And especially with ME, that strikes irrelevant from religion, politics, education, or intelligence, "unity" - if at all meant sincerely, and not as a verbal club to beat one's opponents with, like the often combined claim the opponents need to learn respect, use inappropriate language, and anyway unsavoury and not of our kind and our community - it is utter nonsense - chimaera.

As I quoted before: 百花齊放,百家爭鳴                 Back to Sections.

7.   on doing your own thing on your own level

And to quote more from the same source, and instead of braying anonymously for "unity", on a virtual forum for ill persons of all possible backgrounds, beliefs, and educations and lacks thereof:

Make your own website! Make your own Blog! Write your own texts! Cooperate with folks like you - ill like you, intelligent like you, educated like you - and then, once you have some following or traction, with others.

Do not follow the leaders who have shown themselves to be dysfunctional - that is, those who have set up shop already, and pretend they are something special: They are not.

Speak for yourself! Do not loose time and energy by lengthy exchanges on patients' forums! Do your own thing! Be your own person! Cooperate with those like you! Leave alone the stupid, the imposturers, the bullshitters, and those who can't write and don't know science!

And no... I do not guarantee this will work. But it will give you some self-respect; it will enable you to defend yourself a bit better; it may bring you fame as a Blogger or site-owner; and eventually it may get together sufficient people of sound sense, real abilities, and real scientific understanding to make a real difference.

That is the way to go - and see my Some good info about ME and some good ME-sites for some examples of good ME-sites. And to quote myself from thence:

None of these probably fully agrees with any of the others and I probably do not fully agree with any of them - but then there is no need for that if one sees someone makes sense, can write and can think.

I have to say this, because not so smart people, of whom there are many, tend to have less liberal and more totalitarian ideas and want "One Voice, One Community, One Cause" (their own, as in "Ein Volk, Ein Reich, Ein Führer": Frightening stuff, if you have the intelligence + knowledge to see it, is true. But OK... if the great majority feels that way, it must be right, mustn't it? 'DO follow the multitude, for Our Community's Good', isn't that what the Good Book says?)           Back to Sections.

8.   on advocating for ME-patients

There is and has been a considerable amount of advocating for ME-patients, by ME-patients, and also by others, such as carers and doctors - besides which there also has been "advocating" for ME-patients, in the hope to sell therapies, medicines, supplements or cures to them or to deceive them into acquiescing professors Reeves, Jones, Wessely, White etc. mean well or may have it right.

By and large, the former kind of advocacy, meant to help really ill people with real science and disability benefits and medical research, has not been succesfull at all, measured by the rather objective criterions how much money has been invested into biomedical research or indeed real help for real patients with ME: Very little indeed, also compared with what is invested in research and help for real patients with other diseases.

Part of the reason for this lack of success is the success of the pseudoscientists, which again could succeed because so few patients are really qualified to dispute with psychiatrists or professors of other kinds, and because the bogus science of Reeves, Wessely etc. is craftily composed from fallacies in logic, definition, classifying, probability, statistics, and methodology besides being composed in obscurantist language and being wilfull propaganda mocked up as science. (See the BMJ-editorials, for example: On the postmodern falsifications in Wessely & McClures BMJ-editorial).

On the other hand, the patients and their medical allies also succeeded in articulating and putting on line considerable amounts of good arguments and of biomedical evidence, which can be found partially linked with clarifying comments in Some good info about ME and some good ME-sites.

Here one problem is to collect and select what's there, and make it into good, clear, well-written, good looking presentations about ME or aspects thereof that one can send to parliamentarians and journalists.

This leads to the next subject.           Back to Sections.

9.   on organizing activism for ME-patients

There are a number of chartered organizations - charities in England - with paid staff, members and a yearly budget that are, really or formally, dedicated to advocacy and activism for ME-patients, but as mentioned before: when measured with the objective criterions how much money has been invested into biomedical research or indeed real help for real patients with ME in the years they have been active, these organizations are of very little effective help or difference - except, of course, for their staff, but then a good question to ask about any organization is this:

Does the organization exist to further a not existing end, or does it further a not existing end to exist itself?

If it so happens that the CEO of one such organizations for persons with ME earns more than the Dutch PM and has a mother in law - I think - acting as anonymous patients, some priorities seem to have been lost, or twisted.

In any case there are vastly more patients not happy with the organizations and charities purportedly working for them (which they sometimes indeed also may do, even if the real aim of the organization's staff is to see its staff paid), for which reason one relevant question is: How can patients organize themselves to get effective activism for ME-patients?

As indicated, my answer is along the lines:

Not by following existing organizations or leaders in the field of ME-activism, but by setting up one's own website, possibly cooperating with a few likeminded folks, and getting up good stuff about ME in general, and indeed also one's personal situation, so that one's site at least may serve one's own interests. See 7. above: MANY initiatives, rather than few, for different reasons, by different groups and persons.          Back to Sections.

10. on my own take and position concerning ME

My own take is similar, but with a twist: As outlined several times in Nederlog, and as you can see when you read Dutch in ME in Amsterdam, my own situation with ME is rather different from any I know, in that, since because of it I came into problems with the university of Amsterdam (about the level and content of the education) and with the mayor and aldermen of Amsterdam (about the fact that they protect murderous drugs-mafiosi rather than maintain the law): Had I been healthy, I probably would have left Holland in 1980 or before, given the declines in civilization, education, and public, political and bureaucratic morality.

In any modern state of law, I am legally and morally and factually totally justified - the reason I can't act on it is that I am not at all healthy and doing so is quite dangerous also for healthy persons.

So since quite a while - many a long and painful and ill year - I will act if I have to, but prefer to act if I am at least somewhat better than I have been, all that while.

I do believe this makes my position in law quite different - and much more hopeful in any court case - than if I merely had ME, which indeed has been much aggravated by the situations the board of directors of the university of Amsterdam and the mayors and aldermen of Amsterdam placed me in, willfully and illegally, but hampered by no Dutchmen, since these for the most part want moronic education and free access to all manner of illegal drugs, and anyway are afraid to irritate either the Dutch authorities or the Dutch drufs mafia.

On the other hand, it changes nothing about my having ME, and my having been brought down with much worse ME than I had, because of the illegalities perpetrated against me, on purpose by the the leaders of the university and of the municipality of Amsterdam - which again I could not escape, as I cannot and could not escape Netherland, because I was and am ill.

In sum, I will probably more argue my own unique case, than the case of persons with ME.

Also, for others than myself with ME and a good mind: THE way to do something for persons with ME is help yourself by setting up your own site to defend your own interests and propose to the world what you think and want, and why you arrived at those ideas.

And THE way to loose a lot of time and creativity, is to argue on a forum, or to follow "leaders" like Cort Johnson, Patricia Carter, CFS_since_1998, and Marly Silverman, or to scream for "unity" amongst folks of all kinds and outlooks and degrees of abilities.

God helps those who help themselves - and without God doing it, and one's self-acclaimed leaders producing mostly trash, one has to, if one wants to get anywhere better anyway.

Back to Sections.


So far for the 10 points about and around ME-activism I wanted to clarify. I could say more, and could have said less, and probably it anyway is of little help to most, but then I do have some intelligent readers, with and without ME, and it is always to these that I address myself.


Notes

(*) Namely because (1) I had no fast internet until July 2009, and could not well surf the internet before, while relying for my information on Ellen Goudsmit (2) who choose to leave me and anyone else following her prose to keep up with the science about it chose, treacherously to the spirit of science, of morality and of honesty, not to inform me in any way about the existence of the papers, essays and books by Hilary Johnson and Malcolm Hooper, which accordingly I only found in then end of 2009, after having started to read again seriously around and about ME/CFS because of the publication in Science of a paper relating XMRV - a newly discovered retrovirus - and ME.

(**) "Recreational drugs" are forbidden in Holland as elsewhere. I think legalization is the only way to solve the drugs problem, as I also think they have not been legalized in Holland, in the end, with excellent reasons to do since 40 years, namely its explicit "toleration", as it is also called, by special personal permission, by mayors and aldermen, with the mayor also in command of the local police:

"Tolerating" dealing drugs while forbidding them is in effect creating an enormous found of illegal profiting for the mafia, and such industries as they finance, such as investments in buildings and building, and also makes for enormous riches for local bureaucrats and politicians, no Dutchman wants to know about:

And because the drugs mafia is known to be very dangerous and murderous, and no drugsrelated murder gets ever solved with drugscorrupted police forces, no Dutchman does anything about it: See e.g. The Übermensch of Helmond, Holland -1 what that leads to.

As for me, I am genetically afflicted, I suppose, and in a - locally: o tempora! o mores! - bad way: Why my family was in The Dutch Resistance  in WW II.


P.S. Corrections must wait till later.

And maybe I should also say that so far this year I have kept up with Recent Changes: Summaries of relevant changes on the site.


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

1. Anthony Komaroff

Ten discoveries about the biology of CFS (pdf)

2. Malcolm Hooper THE MENTAL HEALTH MOVEMENT:  
PERSECUTION OF PATIENTS?
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


Maarten Maartensz (M.A. psy, B.A. phi)

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