Prev-IndexNL-Next

Nederlog


February 9, 2013

About ME-CFS-INFO
(Reproduction of ME-CFS-INFO.)

Sections
Introduction   
1. Backgrounds
2. End and restrictions

3. A further proviso
4. How it works
5. Planned directories and files
6. Safety and security
About ME/CFS


Introduction:

This is a start for a new version of the old section RESOURCES, with central index file ME-Resources.

The new version is called ME-CFS-INFO and the present file is - a copy of, here in Nederlog - its central index file, that is in the process of being put together, but far from done.

I first thought I should replace
ME-Resources, but for various reasons will not do so for the moment, and will not do so until the new version is mostly in place, which may take a while, since that depends on my health, that is not good.

1. Backgrounds

For background about ME/CFS, I refer you for the moment to
ME-Resources, that I also presuppose for the moment so as not to have to repeat things about myself or ME/CFS, so that I can here and now concentrate on what is new.

Why this new section
ME-CFS-INFO? Basically, because ME-Resources needs overhauling, extending, improving or replacing.

I started
ME-Resources in 2010, when I had fast internet for about a year, and when I had been attended that there was a new discovery about ME/CFS, namely the somewhat ineptly named XMRV-virus, that since then, also by its supposed discoverers, has been given up as a tenable scientific explanation for ME/CFS, since its apparent presence in blood of ME-patients was due to laboratory contamination, and that contamination, apart from not explaining anything about ME/CFS, very probably also is not by far as dangerous as was initially feared. Further see my ME/CFS: Several causes - many confusions, that contains a link to a useful video on the subject, and some other useful links.

Because I have ME/CFS since 1.1.1979, when it started in my case (and that of my ex wife) with an infection with Epstein-Barr Virus that never seemed to have fully gone away, I am personally concerned,  and since I have fast internet since July 2009 (after 13 years of telephone modem) I could since 2009 put together a fairly large collection of files that are about aspects of ME/CFS that now is in
ME-Resources, which is some 83 MB on my hard disk, and probably nearly the same on the hard disks of the servers on which my site is located.

When I started
ME-Resources, I had some hope for some help from some of the patients on the forum for patients called Phoenix Rising, but there arose diverse quarrels, not started by me, and mostly without my involvement, that caused me to leave it on May 23, 2010.

For this reason, and because of my health,
ME-Resources never got to be what I wanted it to be originally, although it is fairly popular, in the sense that it is fairly often visited, and quite a lot has been downloaded from it over the years it exists.

I did manage to update
ME-Resources several times, lastly in the Spring of 2012, but it really needs updating with rather a lot of materials that I have found since 2010, and that I did store on the computers I used, but that never got uploaded.

Now I have started an attempt to make a better
ME-Resources with more materialsm, named ME-CFS-INFO, after the name of the directory it starts in on my site, in the ME-directory.


2. End and restrictions

It has
the same end and also has the same restrictions, that I now will write out:
  • The end is to have a useful collection of materials about various aspects and backgrounds of ME/CFS on line on my site that is useful for patients, doctors, lawyers and for people who help patients, or indeed for persons who are interested in what the disease is about, and what special difficulties it involves.
  • The first restriction is that it has been made by one ill person, who has the disease for the 35th year in a row, and who has no help, and never had any (that is one of the things that makes having this disease much more difficult than it should and could be) and who is a Dutch psychologist (M.A.) and philosopher (of science) (B.A.), but who is not a medical doctor, nor a lawyer. [1]
  • The second restriction is that, apart from my health, I only read Dutch, English, German, French, Norwegian, Danish and Swedish fairly to very easily, for which reasons the materials on my site are only in these languages, and in fact mostly in English, with some Dutch, Swedish and Norwegian. By and large, you need to understand English well to read most of it.
  • The third restriction is that I am in ME-CFS-INFO hardly concerned with a matter that should be of more importance than it seems to be to many: The legal situation for people with ME/CFS, which is no good, and probably soon a lot worse than it was because the combined effects of the crisis and the DSM-5. My main reasons are that I am not a lawyer; the legalities differ per country and per patient; and I am myself less likely to run into problems than most others with the disease because of my age (soon 63), my degrees and my sites.
  • The fourth restriction is that what you find on my site was found by me, for the most part; was downloaded because it seemed interesting for some reason, that may be less important to others; and was then uploaded again because I thought it may be of interest to some other patients with ME/CFS or to people who try to help them. This is related to:
  • The fifth and last restiction: Almost none of the files in ME-CFS-INFO is by me, and I also have not read all the text of all the files, while many of the files will be considered difficult by many patients, in which they will be right, and indeed I do not pretend to understand more than a fraction of what is in the ME-CFS-INFO and ME-RESOURCES sections.
In fact, ME-CFS-INFO, like ME-RESOURCES, will be most interesting for readers who went to university, and studied medicine or psychology, and who have some serious interest in ME/CFS.

You need the university background (or better: most medically and psychologically qualified persons have been taught little or nothing about ME/CFS, and what they were taught, if any, often was misleading) to make basic sense of many of the files I offer
ME-CFS-INFO and in ME-RESOURCES. [2]

And you need a
serious interest in ME/CFS to read more than a small part of it, for much of the literature in the subject is rather forbidding, demanding, obscure, or requires at least some knowledge of relevant scientific disciplines.

3. A further limitation

A further limitation I should remark on is that not only have I not read all of all the files in the section (unlike all the rest of my site), and not only have I not understood all I have read
of the files in the section (not being a medically qualified person, for one thing): There is rather a lot in what I have read of the files in the section that I do not agree with or that I doubt or disbelieve.

This is both generally true - since ME/CFS has no widely accepted scientific explanation, many of those who try to explain it scientifically, however honest and sincere they are, must be mistaken in some respects, at least - but is quite specifically true for at least four groups of persons whose opinions are represented in some files: Patients, psychologists, psychiatrists and politicians.

Quite a few patients with ME/CFS - or people who say they are so - that I have read over the last three years, have written quite a lot of nonsense, medically, legally, morally, philosophically, psychologically or politically.

This is probably unavoidable, but it makes it virtually impossible to do any useful advocacy or activism on patients' forums.

The other three groups, indeed like the patients, have a special personal, usually financial interest in ME/CFS: The patients as a rule want more help than they can get, and more money than the little they do get as a rule; psychologists and psychiatrists tend either to want to sell treatments or argue for politicians; and politicians, especially since the crisis, want "to save money", in order to help out the banks and their managers.

Therefore, the fact that a file is in ME-CFS-INFO or ME-RESOURCES on my site in no way implies that I agree with all or most of it. The reason a file in one of these two sections is there on my site is that I think it may be of help or interest to some, and not because I agree with it.

4. How it works

The brief of how ME-CFS-INFO works for the moment is that it doesn't: I am in the process of putting it together, and all there is that is more or less as it is planned to be is the A-BASICS-ME section, and not even that is ready.

What there is today is here:
If you check out that, you find a list of almost sixty links to named files, mostly pdf in this case, about various mostly medical aspects of ME/CFS.

There are no comments at present, and while there is a considerable overlap with the material that is in the directory BASICS in ME-RESOURCES, there is more in the new directory, an many files have other names than they had originally.

That is one of the changes I made: I want more descriptive filenames, and I have provided them mostly for the files in the above list.

It will probably at least revised a little, and I intend to write brief comments.

Otherwise, there is little more on my site than

5. Planned directories and files

These are as follows, and may also be revised or renamed, and are empty or non-existent on my site on the present day, Feb 9, 2013.


I what follows, what is bold are planned directories and sub-directories; what is not bold are planned index-files, that initially will be mostly like the first:

---------------------------------------------------------------

A-BASICS-ME
aa-mm-me-cfs-what-is-me-cfs

--- in the works:

- CCC
- Hooper
- Hyde
- Komaroff
- Stein
- WHO


B-SCIENCE

aa-mm-me-cfs-what-is-science

C-EXPLANATIONS
aa-mm-me-cfs-what-is-science
   - EPSTEIN-BARR
     
aa-mm-me-cfs-what-about-epstein-barr
   - INTESTINES
    aa-mm-me-cfs-what-about-intestines
   - METHYLATION
     
aa-mm-me-cfs-what-about-methylation
   - MITOCHONDRIA
    aa-mm-me-cfs-what-about-mitochondria
   - NEUROLOGY
    aa-mm-me-cfs-what-about-neurology
   - PSYCHIATRIC
    aa-mm-me-cfs-what-about-psychiatry
   - RECUPERATION
    aa-mm-me-cfs-what-about-recuperatiion
   - XMRV
    aa-mm-me-cfs-what-about-xmrv

D-PSEUDOSCIENCE
aa-mm-me-cfs-what-is-pseudo-science
    - PSYCHIATRY
    - PUBLIC RELATIONS

E-THERAPIES
aa-mm-me-cfs-what-therapies
    - B12
    
aa-mm-me-cfs-what-about-B12
    - CBT
     aa-mm-me-cfs-what-about-cbt
    - DIET
     aa-mm-me-cfs-what-about-diet
    - GET  
     aa-mm-me-cfs-what-about-get
    - SUPPLEMENTS
     aa-mm-me-cfs-what-about-supplements
    - ANTI-DEPRESSIVES
     aa-mm-me-cfs-what-about-anti-depressives
   - SLEEPING MEDICINES
     aa-mm-me-cfs-what-about-sleep

F-SITES
aa-mm-me-cfs-what-sites
    - FORUMS
     aa-mm-me-cfs-what-about-forums
    - INFORMATION
     aa-mm-me-cfs-what-are-informative-sites
---------------------------------------------------------------

Note that all of the above is in the works, but that nothing that is not a link has been uploaded: All that has been uploaded on February 9, 2012 is 1 directory with 65 files, that are mostly listed and linked here, with A-BASICS-ME the name of the directory
A-BASICS-ME
aa-mm-me-cfs-what-is-me-cfs
The linked file links almost 60 files that collectively take 56.5 MB on Linux, and no doubt more on MS Windows. [3]

6. Safety and security

What has been uploaded has been prepared on GNU/Linux.Ubuntu.12.04 LTS, though some of the files come from earlier computers I used that ran Windows XP or Windows 7, and all of the files that were not written by me were downloaded from the internet.

I use Linux because I find that a lot more pleasant to work with than MS Windows, and it also is a lot safer, for various reasons.

As to your safety:

The files have been scanned on Feb 9, 2012, using the latest version of the ClamTk virus scanner (that also exists for Windows): All of the files are reported safe, except for
hooper-magical-medicine.pdf that flags a "heuristics warning", that may be due to the formatting of the pdf.

Since this file is a very important item for those who really want to understand the science of ME/CFS, and since this has been so for quite a while and in various versions, I only mention it.


----------------------------------
Notes
[1] Actually, the degrees I have are quite helpful, and probably more so than an ordinary degree in medicine or law, since neither of these teaches much about ME, about psychology, or about philosophy of science, while the last two subjects  are really necessary to understand important aspects of the disease, and the ways some medical, political and psychiatric persons look upon it, or pretend to look upon it.

There is a lot of pretension involved, fundamentally because it is about money and health. There also has turned out to be an enormous amount of
"public relations" involved in what is written about the disease, especially but not only by psychiatrists and governmental institutions: These tend to address citizens through the medium of the very well paid very sick professional conmanship that calls itself "public relations" - which was in fact both the most important and the most sickening thing I found out about ME/CFS since 2009: It is consistently and systematically lied about by those making or saving the most money on it, and namely through trained deception, misdirection, misinformation, and plain lying to the public.

[2] On patients forums there can be found quite a sizable group of patients, or of people who say they are, who pretend to understand science, and who insist on the importance of their opinions, but who do not understand science, and are either deluded or dishonest. (This is one of the major setbacks of mostly anonymous patients forums. An academically qualified person is in a small majority there, and will get in trouble for being qualified and insisting on it. I have myself given up on patients forums for that reason.)

[3] The "aa-mm-" prefix you may have read several times is motivated thus: It starts with "aa-" so that I can find in the top segment of directory listings by filename, while "mm-" means that I wrote it
.

About ME/CFS (that I prefer to call M.E.: The "/CFS" is added to facilitate search machines) which is a disease I have since 1.1.1979:
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  (currently not available)

4. Consensus (many M.D.s) Canadian Consensus Government Report on ME (pdf - version 2003)
5. Consensus (many M.D.s) Canadian Consensus Government Report on ME (pdf - version 2011)
6. Eleanor Stein

Clinical Guidelines for Psychiatrists (pdf)

7. William Clifford The Ethics of Belief
8. Malcolm Hooper Magical Medicine (pdf)
9.
Maarten Maartensz
Resources about ME/CFS
(more resources, by many)


       home - index - summaries - mail