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9 april 2010

 

ME: Recommend Reading about ME/CFS/FM

 

                               
"If we believe absurdities,
         
we shall commit atrocities."    
                                          Voltaire      
  

Here is the proposal I wrote about yesterday in Let's roll our own medical recommendations followed by A bit of trouble at the forums
 


A. Let's roll our own medical recommendations


Phoenix Forums Recommend Reading about ME/CFS/FM (I of II)

Hello all,

Intro:

All =  (...) [1]

and I'm sending this in TWO parts (I and II) to twice 5 of the above because (i) there is the 5000 character limited and (ii) there is the forbidding me to PM to more than 5. See at the end of part II for meanwhile I've lost hours of time over these moronifications and the lousy editor of vBulletins. [2]

This is a PM relating to this plan for rolling our own recommended readings concerning ME

-- http://www.maartensz.org/log/2010/NL100408a.htm#A.

What I propose doing is

A. Setting up a new category

directly below the presently first category ME/CFS News in the Forum opening entitled ME/CFS/FM Recommended Readings with the following kind of structure as in directories/maps:

ME/CFS/FM recommended reading
   - Entries
      ............. (many posts with proposals, see below)
    - Readings
    - General
    ...............
    - What patients should do
        - Recently diagnosed
        - Diagnosed a long time
        - Not (yet) medically diagnosed
     - Symptoms
        - PEM
        - OI
        ....
     - Diagnoses
        - Scientific diagnosing
        - PseudoScientific diagnosing
        ....
        - ME/CFS/FM and the law
    .... [3]

The dots mean a.s.o. (using the forums threads also, or to start with) (and vBulletin [4] messes up my formatting: see P.S. in part II)

In Entries members of the forum can propose entries for the Readings; motivate their entries; and discuss them.

In Readings the entries that have been approved (with a Poll perhaps) get nicely presented with at least an intro and summary (in ordinary English, not medicalese).

For the approval system see below under (B).

The general end is to create a list of readings, preferably on the
Phoenix site so that all is available if the Phoenix site is available, of good scientifically sensible readings about ME/CFS/FM [5], that can be used

(1) to educate the members by an organized course of tested and commented readings
(2) to educate the medical people likewise
(3) to have as a standard reference for the forums and anybody else: First look at X in the Readings if you want info about Y
(4) to gather a comprehensice rational view of ME/CFS/FM, as seen by patients with ME who are scientificallty qualified also
(5) to use as an example and argument for CAA [6] and other patients'
organisations: These seems to us the right views, or close to it

Obvious candidates for the - General section are the Canadian Criterions and its Overview (the last seems the best general text).

Obvious other candidates are in

-- http://www.maartensz.org/me/ME%20-%20Documentation.htm

But there is MUCH more, and e.g. TomK and IslandFinn [7] and the fine site InvestInME have or must know of LOTS more, that is at least worthy of consideration.

B. Doing it and making a sort of committee

I think the forum's members should be capable of doing this within a few months, from my experiences of it. There may be some niggles about copyrights, that may need some straightening out, but I am personally strongly open source in science and programming, and I think rational scientists concerned with ME should usually allow people with ME to have their relevant scientific publications on their sites. (-> copyleft, gnu, open source)

And I think this should be done with a committee of qualified people that makes the choice what is good enough to go into the Recommended Readings and what not, and to approve their intros (that I think should be there in principle, to help and clarify), possibly also based on polls. Also, the Recommended Readings are to be special in that only the Committee (or people authorized by these) can edit the intros to Recommended Readings and decide what's in it and what's not. (Peer reviewed, as the phrase is.)

/// con'd: II from II


/// con'd: II from II

C. Varia

It's a bit like assembling and systematizing of The Approved Teachings of the Church of FIBs (anyway a congregation the members of which may all qualify as a workforce for making the Recommended Readings, and indeed for including some funny bits as well, for that makes it all a lot nicer and spicier).

As I think of it, it is all a special effort of the members of the
Phoenix Forums to come to some common understanding on what makes sense to read for patients and medical people, and about what ME/CFS/FM really is , and to articulate, summarize and bring together what the majority of its members think about ME/CFS/FM and/or the available literature about these, for the benefit of all with internet-access.

My reason to include FM is that I myself have been diagnosed as ME/FM in 1989 by my very good G.P. who knew me well, and others on the list have likewise argued they have an FM diagnosis. Lyme may be considered too, but I know less about it, and am fairly certain I don't have it. [8]

Another item in the Recommended Reading may be a section False Teachings or Pseudo Science about ME/CFS/FM, in which Wessely et al and others are summarized and satirized (but without honouring their texts with more than a link and some quotations to toss and gore), and broken scientifically to pieces.

Yet another item in the Recommended Reading may be a section DSM 5 [9], which is a highly relevant and dangerous development if there is no known biomedical marker for ME/CFS/FM by 2013. [10]

That's about it. I am available on PM and - preferably - at maartens@xs4all.nl for anyone interested. [11] Comments please, with the proviso that I am fairly low at the moment, whence my replies may take some time to be written.

Best wishes to all of you,

Maarten.

P.S. I VERY MUCH want to do the required PMing by ordinary e-mail and NOT by way of this time-consuming irritating vBulleting limited bugshow. Writing 4Kb PM [12] in it takes me all the time and 10 times the irritation for writing a 40 Kb EM. [13] (Honest! I write fast, but using this 1980-ies editor is awful, and takes much more time than writing.) And if you care for your privacy, please use hotmail or gmail, for trying it to do by PM is really a bummer.

P.P.S. Kim's PM is overflowing, it turns out. I'll EM her.
[14]


B. A bit of trouble at the forums


Part 1. Forums are places where people meet, talk and discuss, and are therefore places that are easy breeding places for quarrels, especially if everyone or almost everyone writing on it uses an alias, and is unclear about his or her age, education, outlook etc.

There have been some problems of this kind on the Phoenix forums, but the forums are - as is wise in the above sketched circumstances - are moderated, and this works, more or less.

But ME is a disease with many problems, and three major problems are (1) that the psychiatric schools of Wessely, Reeves and  Bleijenberg have produced an enormous amount of pseudo-scientific lies about it and patients suffering from it and (2) that the members of these schools, especially in the US and England must fear class-actions if there has been found a bio-medical cause of ME, such as XMRV, that well may destroy them financially (I am all in favour of this) and (3) that there are some strange things surrounding ME, especially in the US and England, where documents about ME have been classified till 2071, as if they are so dangerous that the coming three generations should not see them for fear of the consequences.

Thus, it may be fairly expected that an anonymous forum like the Phoenix forums are also visited by psychiatrists and others from the schools of Wessely, Reeves and  Bleijenberg, who also may enter the forums, pseudonymously, like almost everyone (as is very wise for persons with ME living in the US or England), and pretend they are patients, while trying to check and try out arguments, positions and characters, and meanwhile - being Wesselytes - having lots of gleeful sadistic fun by pestering ill people.

Finally there is a class of people on the internet - large, in circles of gamers - called griefers or also lamers:

-- http://en.wikipedia.org/wiki/Griefer
-- http://en.wikipedia.org/wiki/Lamer

The references are to the senses of these terms for gamers (and programming nerds) but apply well to at least two members of the forum (and not many more, as is).

This has led to some problems for me, in the form of a totally contemptible private mails, clearly designed to grief, clearly by a scientific lamer posing as a scientific light, about which I have said nothing until yesterday, when I complained about it with the owner of the forums after the lame griefer struck again.

So far this has not been clarified, and if necessary I'll do my own exposing on thisn place, for one of the problems of the moderated Phoenix forums is that one may not say the sort of things I just said, on the forums, about somebody else on the forums, however clearly a lamer, and however clearly but cleverly grieving.

Part 2: And here is a post I just wrote for the forums relating to the present subject:


Hello Leaves,

You wrote


    Originally Posted by leaves

I am reading through this thread and I must say that I find the tone of the conversation very aggressive and intolerant. Is this really necessary? We are all patients here, living in a hostile world in dire need for a safe, tolerant and supportive haven where we are accepted as we are. Let's make sure this forum stays that place.

I agree more than not, but I am one of the few on the forum with his own site (since 14 years, also), while I use an alias for a reason that has little to do with ME but with being threatened with murder in Amsterdam by Amsterdam drugsdealers protected by the Amsterdam authorities (who protect rich drugsdealers much rather than poor ill taxpaying citizens). Also, I have a diagnosis of ME/FM since 20 years, am ill since 32 years, and am being treated by a specialist on ME since 5 years.

Not only that: it is relatively easy to prove that I am who and what I say I am, apart from my last name, that is not "Maartensz", but that I use because it has been in print for me for over 20 years, and I needed it 20 years ago to write the truth about the decline of the universities, namely without being removed from it a fourth time for speaking the truth.

Now to the point:


We are all patients here, living in a hostile world in dire need for a safe, tolerant and supportive haven where we are accepted as we are.

I don't believe this is true. There are some - very respectable and likable - people on this forum who are not patients, and there are also some people on this forum who say they are patients but in my opinion are not - or if they are, they really have some psychological issues, unlike most real patients with ME (and note that I am a psychologist among other things, and quite old, and not at all naive, nor inclined to pretend even for a bit that I respect all human beings or that for me, wise man that I am, "everything is relative").

One problem - damned if you do, damned if you don't - is that this cannot be discussed on this forum without leading to grave problems, that I too wish to avoid. (And also the forum's rules forbid saying this about specific members of the forum, on the forum.)

So I just say this: In the context of the forum, with its large majority of functionally anonymous people, also without personal sites to make their stories credible, and as clearly dangerous in principle to the likes of Reeves and Wessely, who must face a class-action if there is found a biological cause of ME and there are organised patients-groups, it seems to be not unreasonable to surmise that some people writing on the forums are not quite who or what they say they are.

I have made up my own mind on this, and have written Cort about it, since I don't want to discuss this on the forum, and since I am morally certain at least 99% of the people writing here are honest and write the truth (as they see it, also if I disagree with them), I am also fairly certain a few are not.

And as I said, it seems silly to me to deny this may be the case, and unproductive to discuss this on this forum, for which reason my koan is

Peace out,

Maarten.

P.S. How do I deal with these persons I suspect or know to be up to no good? I sidestep them, with aristocratic contempt also - and save them for my satirical powers on my site, if and when inclined. And that is also my advice to others: Ignore those you believe are up to no good, or take them apart outside the forums, if you feel like it and have the ability and a site for it, as I do.




Notes

[1] I deleted their names here, because I haven't asked them, and also related to A bit of trouble at the forums.

[2] vBulletins is the producer of the software for the Phoenix forums, and their software is neither free nor open source, and so far produced a reasonable interface, that I mostly know from other forums, that are freely available as open source, with some added frills, that are useful for something like the Phoenix forums, but also with an amount of bugs that simply should not be present in commercially released closed source software and with a number of "features" that are just awful, such as an editor for one's texts to send to it that would have been considered clunky and stupid in 1990, including such idiocies as restricting private mails from members to members to 5000 characters (as if - say - 64 Kb is anything on today's computers running internet).

This has made my presence on the Phoenix forums remarkably more difficult then it could be, for the reason expressed in my P.S.:

Writing 4Kb (private mail, this awfully troublesome and backward editor) in it takes me all the time and 10 times the irritation for writing a 40 Kb e-mail (for that can be simply written in html).

Writing anything in this editor is a punishment and an irritation, and something as clunky and backward and bugged as this should not be in commercially released software. Period.

The piece of text that is the main content of this mail took me at most 15 minutes to write - and 2 hours and 15 minutes to finally send, after reformatting it into two parts; loosing parts (I am now used to it so make a copy outside this editing shit as soon as I wrote anything in it, and only therefore did not give it up altogether).

[3] This is just an outline of a few parts of a proposed folders-structure, which here is properly indented, as can not be done in the vBulletin's execrable editing horror.

It's also so stupid as to use non-html coding and not to have a basic html-parser, so to write bold, italic, colored what have you text you must first learn the vBulltetin non-html encoding, that then makes html from it. (Also, it is arbitrary and stupid: To get bold text you have to enclude the text within "[b]" and "[/b]", which is not explicit but brief - but to quote something you have to enclude the text within "[quote]" and "[/quote]", as if one could not figure out what "[q]" might mean.)

Again, there is no html parser: The stoopid editor thingie cannot read simple html (or it can read it but does not encode it, for it needs its own unique vBulletin encoding).

[4] These are the proud makers of the editing horrorshow described in the previous notes. I note again that almost the same as vBulletins offers for money in closed source is available on the internet in free and in open source.

I disrecommend vBulletins strongly, having worked several years with the free and in open source competition that looks the same and can do almost the same and did it wholly without problems.

[5] ME = Myalgic Encephalomyelitis; CFS = Chronic Fatigue Syndrome; FM = Fibromyalgia. None has a bio-medically widely accepted explanation, and the symptoms used to define them overlap. My excellent G.P. diagnosed me with ME/FM in 1989, because of the uncertainty of the diagnosis, and because I had and have considerable muscle agues (= myalgia).

[6] CAA = CFIDS Association of America, in which CFIDS = Chronic Fatigue and Immune Deficiency Syndrome, one of the many names for ME (not as good as "ME", but better than "CFS").

[7] TomK and IslandFinn: Two members of the forums with excellent skill in finding documentation. TomK also is a great advocate for patients, which is a job one should not underestimate: It takes great patience, persistence and argumentative skills, and is rarely rewarded, neither in money nor in kindness. (Also, while I can write, I am not fit for this, for I am too impatient for it.)

[8] Lyme disease is another disease with symptoms similar to ME/CFS/FM. It's a virtual certainty that I don't have it, for my ex and I got ill in midwinter with EBV = Epstein Barr Virus, a well-known beginning of ME, but not of Lyme.

Also, my personal opinion is that while many with one of the diagnoses ME, CFS or FM will turn out to have the same disease, once the cause has been found, Lyme is something else. Indeed, its aetiology and cause are known: The problem is mostly that Lyme is hard to establish.

[9]  DSM = Diagnostic and Statistical Manual of Mental Disorders, use by the APA = the American Psychiatric Association. It is used where Western medicine is used for diagnoses and is supposed to include all currently recognized mental health disorders. The current edition has the Roman adfix IV; the new one with the Arabic adfix 5 will appear in 2013, and seems to attempt to reclassify all diseases as having a psychological and a somatic side, and to attempt to classify all diseases that have no known established somatic side as a psychiatric ailment of some kind, of a - as the term is - somatoform kind.

For me, in scientific principle, and wholly apart from ME: This is back to the Middle Ages, back to Soul Shrinkers, and back to fraudulent pretentious pseudo-science, but I do understand the urgency of the APA: They are in it for the money, and boy o boy, what will there be lots of money from patients with "somatoformic ailments". It is psycho-quakery, in total variance with real medical science, that is concerned with the body only, and leaves the soul to theology, bagwanites, and as subject for preaching in churches.

Also, still wholly apart from ME: This is a frightening prospect for anyone, for the chances are considerable that when this gets in place, everyone who does not belong to the social Úlite with the money to afford real medicine and real science, will be saddled with a psychotherapist or two they first have to convince that their symptoms of cancer, or what have you, are not a form of somatoformic ailment.

Here is a fine site about this latest form of psychiatric insanity: ME Agenda's DSM-V. Note this is mostly for ME-patiens, but ME Agenda is very sharp and very factual, and has many references.

[10] This is precisely as said: A highly relevant and dangerous development if there is no known biomedical marker for ME/CFS/FM by 2013. And the best bet for a biomedical marker for ME/CFS/FM before 2013 is the XMRV-hypothesis for it. (See also Again a little more about ME and Phoenix Rising where there is a lot on XMRV (for the non-medical reader, especially if concerned with ME).

[11] This is my email, but having received tons of spam, it is my firm policy

  • to delete all e-mails by people that I do not know already, from my provider's site, before downloading (personnally or from e-mailing), unless the title clearly relates to me, my site or ME.

So IF you want to reach me by mail and have never met me and never mailed with me before, you will have to provide a title as indicated, and otherwise your mail will be in bitheaven before I read on byte of it. (Also, I generally answer mail within 24 hours, or 3 days at the longest: If you mailed me with something you want me to read and I haven't replied, and you are sure you wrote tolerably well and for the most part rationally, mail it again with another title.)

[12] PM = Private Mail. See [2], [3] and [4].

[13] EM = E-mail.

[14] The mighty Kim can be found here and at other places. She has the very rare property of virtually always making sense, by my lights. She doesn't do it on purpose: she is that way. (The woman depicted is not her, unless she and the karateka Cynthia Rothrock are - or at least look like - one and the same.)


Maarten Maartensz

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