a`\ 

Nederlog

 

 September 2, 2010

 

ME + me :  Some observations on ME and ME-forums



I continue being not well, and today I only have a few remarks about the two subjects in the title, in which I also partially repeat some footnotes, and a small rant.

Sections

1. Some observations on ME and me
    1.1.  My own position with ME differs from that of all others
    1.2.  The situation since the Lo/Alter paper changed a lot around ME
2. Some observations on ME-forums
    2.1.  PR-F somewhat upset

   2.2.  ME-forums are not fit for advocacy
   2.3.  On changing ME-F
   2.4.  A place for rational scientific ME-advocacy
3. The rant for today

And I should say that I have written rather a lot on the points I raised before, on various places, but mostly in Nederlog of this year, and that I start with my personal situation with ME (and if you want to skip that you can use the above links - but I started with it because it is closest to me, and because it is quite different from anybody else with ME that I know of, and makes my position, both personally and legally, quite different from that from others).

1. Some observations on ME and me

Since I have meanwhile written rather a lot on and around ME, that I mostly take as said, and that can be found for the most part in or with help of this year's Nederlog, and since my site is read reasonably well, if not only and perhaps also mostly not by persons with ME, I have two general observations on ME and me.

The first considers my own position with ME, that is quite unique for various reasons, and unlike that of anyone else with ME; the second concerns the altered situation for everyone with ME since the Lo/Alter paper was published.

1.1. My own position with ME differs from that of all others

My position with ME is different from that of everyone else: My ex and I both got Epstein-Barr in January 1979 and never got better, and separated after six years. I was diagnosed with ME in 1989 by my G.P. and in 1991 by an internist, and in 2005 by a specialist on ME.

Meanwhile, the first ten years I had comparatively mild ME, that did not allow me to lead a normal life, because of lack of energy and muscle aches, but that did allow me to study philosophy and psychology, and indeed also be a student leader in the early 1980ies in the University of Amsterdam, protesting and trying to stop the levelling and bad quality of the university education and politicized teaching and postmodernism in various forums.

It was this that led soon to great difficulties with the Board of Directors of the UvA and with a few incompetent professors and lecturers; to my heading a student-party, with some exceptions because of my illness; and to three forced removals from the UvA, basically because of my published and publicly outspoken ideas and the questions I asked.

In 1988 - after several times of not being a student, because of removals and problems and lack of help while being ill with ME - I was removed as a student of philosophy, and a few months later gassed by the combined forces of the house-owner and the drugs-dealers that had been given permission by the mayor of Amsterdam to deal soft drugs from the ground floor where I lived, and who in fact tried to get rich real fast by way of hard drugs and threats with murder against people who dared complain.

I dared complain. The police of Amsterdam and all Amsterdam departments of the city-government looked the other way and denied there was any problem. I went to mayor Ed van Thijn, who had come to be mayor because of his Jewish background and because he daily swore hourly, preferably in front of cameras, that he governed Amsterdam "in the name of the ideals of the February-strike" (of 1941, in Amsterdam, against the razzias and deportations of Jews), for which reason i.a. my father and grandfather had been arrested, as members of the communist resistance, that organized that Strike, and had been convicted, in 1941, to concentration-camp sentences, as political terrorists.

My grandfather was murdered, my father survived, and eventually got knighted in Amsterdam's municipal hall in 1980, as the main organizer of the Dutch National Exhibition about Fascism and Resistance, in which capacity my parents had briefly met Van Thijn.

Mayor Ed van Thijn refused to receive me; refused to answer my letters; refused to phone me; and let his minions state that nothing was the matter, and that if I was troubled by the drugsdealers I should move. Meanwhile, I had been gassed in September 1988 because the houseowner - hand in glove with the drugsdealers - had made the only chimney collapse, and the dealers had started to threaten me thus: "If you do anything we don't like, we will kill you", and the municipal police had refused to come, to investigate, or to do anything many times.

All of this has been explained in Dutch, in considerable detail, with full documentary proof, in ME in Amsterdam. No Dutchmen cared, because the mayor of Amsterdam is a powerful man, and his Labour Party a powerful party, and I am just one individual, and an ill one at that, who moreover dares and did say all manner of things about Holland, and especially the state of the Dutch education and universities, nearly all Dutchmen found most offensive, until in 2008 a Parliamentary Commission investigated the state of Dutch education, and published a report (the Dijsselbloem Report) that strongly supports everything I had said and published on the subject since 1977 (when I remigrated from Norway to study in the country and city I was born).

Now all Dutchmen should be able to verify that much of what I say about Holland, both in ME in Amsterdam and in Nederlog is quite true, if quite painful for Dutch chauvinism, the more so as I am provably right about publishing and saying many things I in fact was removed from university for - something no Dutchman ever was, being removed because, as the Board of Directors wrote in its letter, because of my "publicly outspoken ideas", since the end of WW II.

If what I say on my site were false, in particular if this conversation of August 1991, taped and on line since many years in Dutch and now also in English were false

ME + me :  Conversation with Miss Mr. Maureen Sarucco
Amsterdam Municipal  Chief Order and Security

I would have been arrested long ago.

All of this also makes my own position with ME quite special in ME-land:

No one else has been kicked repeatedly from university, and proved right in all his main contentions; no one else has been gassed by mafiosi protected by three Amsterdam mayors and by all Amsterdam and Dutch bureaucrats (for my site shows I have personally asked, written, mailed everyone possible, over the course of two decades: No one cared); and also no one else in Holland has my background, my abilities and my proven track record, for apart from the above I also managed to get an M.A. in psychology with the best possible marks, while all the facts relayed above are provable facts.

Therefore... if I get to be 95, and can argue and write most of that time, I'll die quite a rich man, I suppose, if the world continues more or less as before, of course. (The readers is adviced not to take bets on it, though, unless he knows what a Dutch book is, in probability theory, to be sure. (*))

1.2.  The situation since the Lo/Alter paper changed a lot around ME

One general result that the Lo/Alter-paper has achieved, at least for the time being (!), which I insert because MLV/XMRV may still turn out to be not strongly or at all causally related to ME, a new position for people with ME and advocates for pwME, namely that for the first time in some two decades there is very serious science that does back up the notion that ME/CFS is a real biological disease, and that backs up the notion that real scientific research into it is really rather urgently required, also on governmental level, at least in the US, and possibly even now in The Netherlands.

And at least for the moment this takes away some of the need for patients' raving and ranting: It is quite possible help is on the way now, especially if Lo/Alter are right, and some clinical trials turn out well (and none bad). (**)

Meanwhile, whether this remains so remains to be seen, and one can be quite certain that meanwhile the Wesselytes, at least, will continue with their pseudo-science, very possibly changed to the tune of "we admit nay insist on physiological causes AND that we psychos are the ones to treat these", and there also other threatening developments, such as the ongoing economic decline (the bankmanagers' incomes and profits will be saved at the cost of the patients' benefits, in part, and certainly in The Netherlands) and the arrival of the DSM-5, that very probably will attempt to give many, possibly all, diseases a psychological dimension, so as to provide psychotherapists and psychiatrists a continued income from the miseries of genuinely ill persons. It also endangers everybody with ME/CFS if the cause of this disease has not been found by the time the DSM-5 will be in force.

So there is lots to do for patients with ME. Two relevant questions are: How should they do it? and Are ME-forums the right way?

2. Some observations on ME-forums

In fact, most of this continues yesterday's Nederlog, and repeats (in somewhat altered form) some footnotes I made some may have missed.

2.1. PR-F somewhat upset

I believe my title more or less catches the events accurately, though it is difficult to find the right terms, and the upset I speak of I also spoke of yesterday. And there are at least two threads that illustrate my meaning ("at least", since I can't access all of PR-F, not being a member:

Together these are over 230 posts, involving also quite a few removals of posters, some so quick that at least one arrived, posted and was removed within a few hours today.

What is true is that those removed were clearly spoiling for trouble, and what is also true is that I have also - while being a free speech person, in principle - been in favour of moderation on forums for ME-patients, in the double senses of using moderate language (apart from the odd bit) and agreeing that such forums better be moderated, for various reasons.

Meanwhile, I only register the fact of the upset (not a large one, I hasten to add) and have provided the links for those who like to know more and make up their own minds.

2.2. ME-forums are not fit for advocacy

The previous claim and title are the subject of a note I made earlier, that deserves repeating (in a slightly different form)

ME-forums, with present technology, are NOT fit for organizing advocacy, because of the presence of trolls and the average level of contributions, that include the needs for ill people and/or overworked advocates to read through interminable posts by members who do not know the relevant science or who lack the relevant background knowledge or who lack the capacities for making a rational wellwritten contribution, but who nevertheless write post after post after post.

ME-forums, with present technology, ARE fit for meeting people, for exchanging information, and for getting to know some folks who have similar afflictions and a shared outlook, set of values, or set of ends. With these then one may, perhaps, try to set up one's own site, as several members of PR-F meanwhile have done, and do advocacy according to the ideas, values and abilities of the group - but trying to organize an ME-forum as a site for advocacy from that forum may be fairlu considered impossible, at least with present technology.

The technology point refers i.a. to the fact that it might be different if all were on line via a webcam while talking, and in real time, as in real conversations. But even then it will be very difficult to have most or all noses on an extensive forum for ME-patients from allover the world, of nearly all ages, and with all manners of backgrounds and educations, and also with many different faiths and sets of political beliefs, point all in the same direction.

But then a partial solution is as given: While an ME-forum is not a fit place to do advocacy from an ME-forum is a fit place for advocates to advocate some, to explain some of their points of view and ends, and to refer to their sites for more for anyone interested, and an ME-forum also is a fit place to exchange information about ME, learn things, meet people, and make friends. (***)

2.3. On changing ME-F

This is another repetition with some alteration.

It seems to me that the present administrators of ME-F are not fit for the job, and therefore that the persons on ME-F who were somebody on PR-F - because they could and did write, and made sense - should stand up to their incompetent administrators; remove them, e.g. by buying them out, if necessary, as the fair price can't be high, and as this is the friendly and polite way: "You tried and failed; make room for others in the interest of all"; replace them by a better set of administrators and moderators; and then try to refound it, this time by doing what was the original intent by the beginning of June: Lay the foundations for a good set of rules, ends and regulations for a good forum for and by patients with ME, predominantly interested in furthering biomedical research into ME, and having done that try again.

It will also be necessary to remove some of the loudmouths and wackos, but then these too should be able to roll their own forums or sites, instead of abusing others on sites they did not create themselves, for no other clear purpose that I can see, as a psychologist with 32 years of ME, by medical attestation also, than the joys of abusing others while denying on does it, or impose their own view on many others by screaming louder and more impertinently, just as in politics.

From my point of view, it is a pity is that on the moment there is quite an amount of real talent with real ME that has been effectively locked in on ME-F by the rantings and ravings of especially Wildaisy aka Pamela Carter, Master Since aka CFS_since_1998, and Awol, V99 and a handful of other trolls or disturbed persons, and indeed maybe also some who simply can not or do not want to control their tempers or (maybe) are simply too stupid to see further than the end of their own nose and egoistic desires.

2.4. A place for rational scientific ME-advocacy

I do think that it's about time for a better forum or for something new... and in fact the new thing that may be worth trying to set up I have mentioned before:

The Daily ME

a daily electronic paper written by 4-40 people who wrote best on PR-F, and who are all  known to be almost certainly all really ill and really capable, which is set up like a daily paper for persons with ME, by persons with ME, and where the staff of the paper is closed for all but those 4-40 (who may later elect others), but where anyone can leave a comment on what is in the daily.

Thus, it is much like a Blog, including comments, but it is written by 4-40 of those who have proved themselves to be personally reliable, capable and trustworthy, while keeping out all trolls, all false pretenders, all incompetents and all disturbed ones.

Also, it is noteworthy that it is, with a closed set up and some clearly worked out ends, rules and procedures not necessary that those involved agree on all things, provided they agree on the ends, rules and procedures: It is not necessary to speak with one voice or one mind, and indeed better not, provided the different voices and minds are rational and willing and able to cooperate reasonably.

This probably is the best and indeed the only way - with internet as is - to get a Real Science Advocacy Place for ME and get the patients' voices heard while preventing trolls taking over the whole setup and/or fucking up ill people who stand in their way or dare protest.

It requires some organization; it does not need to be a strict daily; the name may be other - but this seems to me, with present internet-technology, the best bet to get a place from whence intelligent persons with ME can do intelligent advocacy for persons with ME and for getting real research and real research funding.

3. The rant for today

From my favourite Book in the Book of Books, King James Authorized Version:

1 To every thing there is a season, and a time to every purpose under the heaven:

2 A time to be born, and a time to die; a time to plant, and a time to pluck up that which is planted;

3 A time to kill, and a time to heal; a time to break down, and a time to build up;

4 A time to weep, and a time to laugh; a time to mourn, and a time to dance;

5 A time to cast away stones, and a time to gather stones together; a time to embrace, and a time to refrain from embracing;

6 A time to get, and a time to lose; a time to keep, and a time to cast away;

7 A time to rend, and a time to sew; a time to keep silence, and a time to speak;

8 A time to love, and a time to hate; a time of war, and a time of peace.

(...)

19 For that which befalleth the sons of men befalleth beasts; even one thing befalleth them: as the one dieth, so dieth the other; yea, they have all one breath; so that a man hath no preeminence above a beast: for all is vanity. 20 All go unto one place; all are of the dust, and all turn to dust again. 21 Who knoweth the spirit of man that goeth upward, and the spirit of the beast that goeth downward to the earth?

22
Wherefore I perceive that there is nothing better, than that a man should rejoice in his own works; for that is his portion: for who shall bring him to see what shall be after him?

                                 (From: Ecclesiastes 3)


P.S.  More later on the last but one item, and if I am going to be involved in The Daily ME (as is not necessary, nor is its name), I need more health than I have at present - but this does seem to me the way to go for one or more groups of highly educated intelligent and capable persons with ME who want rational thinking and reasonable action to prevail.

It also may be the case that the above needs some corrections, I now am not able to make, having dysfunctional beliefs that I am ill.

P.P.S. It may be I have to stop Nederlog for a while. The reason is that I am physically not well at all. I don't know yet, but if there is no Nederlog, now you know the reason.
 

 

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


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


(*) A Dutch Book - appropriate name! - consists in elling lots in a lottery in such a way one always wins, whatever the outcome: It is the stuff bookmakers make a living from.

(**) Here there are interesting months - and maybe a few years - ahead, in which there will be findings about ME, MLVs, XMRV and retrovirological matters.

(***) Meanwhile... I should remark that (1) it appears to me that a sizable amount of what is published on PR-F and ME-F is not written by its posters with sufficient consciousness that what they write and post is public (2)  it appears to me that a sizable amount of what is published on PR-F and ME-F should not have been publicly posted but should either be PM (private mail) or else be part of a non-public forum.

Maarten Maartensz

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