Experience
Definitions
Books
Sites
Problems
Medical
info M.E.
in Amsterdam (mainly Dutch)
There is an ENORMOUS
amount of information about ME on the internet - far more than anyone can
profitably or sensibly read through.
If you want recent medical info that is up to date,
sensible and by medical specialists, try
Medical info
and especially the 2003-report for the Canadian
government (PDF-file).
Or else try some of the sites mentioned below - most of them have very many
interesting and/or useful links.
The present December 2009 version is a rather
different listing than was on my site until December 2009, for I have since
learned about the medical fraudulence as regards ME that
has been perpetrated by the US CDC, the English quacks Wessely and Sharpe, and
the dangerous Dutch quacks Bleyenberg and Van der Meer - for which see
Research Background below.
For me, who was ill for ten years - 1979 to 1989 -
without even knowing the disease I had and also, apart from the woman I lived
with the first 5 years of our shared disease, not knowing of anyone similarly
afflicted, this is a huge improvement.
Others who have not been ill so long, and who take
both their disease and rational argument serious, may well feel that there is
far too much information about ME.
Through the last three years I have checked through
quite a few sites about ME. Here are some of the best personal sites I found
followed by a very good commercial one. First the personal or medical sites:
Most of these sites contains a lot of information and very
many links to other sites.
The advantage of most of the above sites (or parts
of sites) are:
(1) they are informed and for the best part rational and scientific
(2) The first three are by people who know from their own experience what it is to have ME
(3) they are extensive and
(4) they are maintained or informed by academics.
The last point is relevant in that there still are
academic health-professionals - especially in Great Britain - who claim ME is
psychiatric, psycho-somatic, hysteric, neurasthenic etc. and have little other
authority except their own health and academic diplomas. (Not everyone who
believes he or she has M.E. indeed has it, but this is no reason to maintain
that those who do have it are mentally disturbed - unless, of course, you are a
fraudulent psychiatric or psychological quack out for easy money, or a sadist
bent on destroying lives of ill people who cannot or dare not defend
themselves.)
Here are some comments on each.
Most useful:
InvestInMe: This is a
fine English site with much excellent material, including well-formatted
versions of Professor Malcolm Hooper's fine writings about ME.
Phoenix Forums
belongs to the above and consists of a number of forums for and by ME-patients,
including quite a few who have it a long time.
This is quite helpful and many of these patients are well informed, sensible and
write well. It also gives a lot of information about what various therapies and
medicines did to various people.
Phoenix Rising
is by an American with ME, Cort Johnson, and is well done with lots
of information and help, also about the recently discovered XMRV-virus, for
which there is strong evidence that it is somehow involved with ME.
For the XMR-virus see:
XMRV
Information Center.
David Axford's site contains many contributions
by Dr. Ellen Goudsmit Ph.D., an English psychologist with ME and with a very
great amount of scientific knowledge about M.E.
It seems to me that at present the combination of the
Phoenix Forums and
the InvestInMe are
the currently the best and most informative sites about ME: On the first you get
the views and experiences of people with ME, in some cases for decades; on the
second you'll find much well-edited information relating to ME written by
experts.
The
Phoenix Forums is a
forum or set of forums that is set up by patients with ME many of whom are quite
articulate, informed and highly educated, that also combines with the
Phoenix Rising site
that contains a lot of useful scientific information about ME. The
Phoenix Forums and
the
Phoenix Rising site
are located in the US.
InvestInMe is a large
well-formatted site by English experts on ME, who are not of the harmful and
dangerous English Wessely-school, and contains very much information about ME
and its problems.
Medical Background:
Note on the following three items:
I very probably only partially agree with
any of the medical doctors named and linked to, but the first has ME herself
since many years; the second is my current medical specialist; and the third has
a theory and approach that is like mine was for some 20 years.
Mette Andersen is a Danish M.D. with M.E.
Yes, it can happen to real medical doctors as well. Her site has a lot of
medical information around M.E.
It is no longer updated since the beginning of 2009.
CVS/MECentrum
(in Amsterdam, Holland)
is where I have been accepted as a patient in 2005. This is not as extensive or
sophisticated a site as the others named and linked in the present file, but it has some
information about carnitine and ME, also in English.
It is run by Dutch medical doctors, and seems the
best place to go to provided you live in Holland and your G.P. believes you might have
ME/CFS.
Note here that one basic problem Dutchmen
with ME have is that the egregious medical and scientific dangerous professors
frauds Bleyenberg and Van der Meer have done their utmost since 25 years to
slander patients with ME and force them into psychotherapy - and meanwhile to
prevent them from getting any other medical help patients are entitled to.
This is as honest and moral as denying AIDS is a
disease and recommending its cure with beetroots and cucumbers; as decent and
scientific as withholding people with cancer any medical help while insisting
they must go for treatment to witchdoctors, psychiatrist or warranted medical
frauds.
DoctorMyhill.com:
This is the site of Sarah Myhill, an English G.P. with an extensive site, who
claims to have treated 4000 patients with ME, and who has a theory about ME
which is much like my own of 1987, and has an combined orthomolecular and
medical approach that looks helpful.
Please note also that I do not recommend
that you follow any medical therapy, especially not if you have little money and
are ill, and that I strongly disrecommend that you follow any psychotherapy in
connection with ME/CFS, if you have ME for more than two years.
My reason for my first recommendation is that the
probability it will help patients with ME is small, as long as there is no good
causal explanation of ME, while it is a certainty the medical people treating
you will profit.
So here you have especially to consider your
medical insurance.
My reason for my second recommendation can be
taken from the text that follows for which also see my note (*)
as regards my own qualifications to disqualify my brethren psychologists, most
of whom I regard as frauds, even if they do not make their money fraudulently by
way of ME, and especially if they are Dutch, like I am, unfortunately.
Research Background:
Both of the following are, in my opinion,
excellent - but both will tend to incline especially patients with ME to
depression, for it turns out that these people have been frauded on purpose for
30 years now by medical frauds working for the American CDC, and/or active in
psychiatry or psychology in England and Holland, where patients with ME are
abused, maltreated and defrauded so as to provide psychiatric/psychological
"therapists" fraudulent incomes. (*)
Malcom
Hooper is a retired professor of
medical chemistry who wrote several very good reports on ME, that also
deservedly attack the English medical frauds Wessely and Sharpe.
See his
for some very deserved attacks on the English
medical frauds Wessely and Sharpe.
Hillary
Johnson is an American investigative journalist, who writes for Rolling
Stone and the New York Times and who has brought to light the horrible fraudulence of the US
CDC as regards ME
See her
for an excellent speech of May 2009 on an English
ME-conference, and her site for the medical mega-fraudulence as regards ME
perpetrated by the crimimal CDC, as proved by her in The Osler.
Whittemore Peterson Institute
for Neuro-Immune Disease, a nonprofit in Reno, Nev., founded recently by the
parents of a young woman who has the syndrome.
Here the evidence for the role of
XMRV
in ME was found in 2009.
New York
Times article nov 2009: This is a good 2-part article in the NYT, that
is a follow up on another article in the NYT from October 2009:
Is
a virus the cause of Fatigue Syndrome?
Strong Recommendation
It is my
strong recommendation,
especially if you are not qualified
scientifically, to disbelieve and reject anything that is endorsed
as regards ME by the American CDC, by the English medical frauds Wessely and
Sharpe and their associates, and by the Dutch medical frauds Bleyenberg and Van
der Meer.
All of these are fraudulent, false, phony medical
quacks, who defraud their patients, abuse and falsify real science, and are only
out for medical subsidies for themselves, and healthcare-insurance money for
their fraudulent psychotherapies, if they are not sadists to start with.
My reasons for this strong recommendation are in
the above links of
Hooper
and Johnson, that I
myself only came to know in October 2009.
General advice:
Be
skeptical and don't
believe everything you read. Also, one very good thing about the internet is
that you can do a search on topics. Thus you may find several perspectives on
the same topic, which is usually helpful. This applies both in case you consider
a medical treatment or consider buying supplements.
And if you only recently came to believe you have ME/CFS:
- Try to find a good GP who can exclude or
identify other possible causes for your ailments. This is important, for while
you can live a long time with ME/CFS other diseases with similar symptoms may
kill you fast if they are not properly diagnosed and treated. (So do not
believe your persistent fatigue "must" be M.E. without going to at least one
qualified M.D. If it is something else than M.E. this may be dangerous.)
- Try to inform yourself as good as you can.
There is currently an enormous amount of information about ME/CFS on the
internet. You can't read all, but you can currently find out about most
approaches to and opinions about ME/CFS.
- It also helps to cultivate a somewhat
skeptical scientific approach, and it helps if you
know some science.
Notes
(*) It so happens is that I
have a top-degree (M.A.) in the (supposed) science of psychology, which I
studied when having M.E. (apart from the first three months), and it so
happens that my M.A. in it - a so-called free M.A., finished with the
best possible marks - is mostly in physics, logic and mathematics,
because I quickly learned that, by my standards, much of psychology is
not scientific at all, but quasi-science, and that I had started it on
the false premiss that it might help me understand human reasoning, which it
didn't.
So... there indeed is truly excellent
psychology, but much of it is in
William James's
"The Principles of Psychology", under the link, on my site, the
knowledge of which indeed caused my starting the study of psychology, in the
hope of more of the same quality, only to find out very quickly that much of
modern psychology is fraudulent baloney, by my lights, which happen to
be much informed by extensive knowledge of real science and
philosophy of science. (For which see my
Ten good modern philosophy texts
and my site, especially the section
Philosophy.)
My recommendation as regards psychology and
psychologists, as a patient with M.E. since 32 years and as a psychologist is
this: Beware, avoid, disbelieve - most
psychologists are little better than frauds; very few know any
real science; and clinical
psychology is mostly a fraudulent mumbo-jumbo to enrich psychological and/or
psychiatric conmen and -women, and all this wholly apart from ME.
Also, please note that I reached my own
position on the fraudulence of most modern psychology-as-a-science
around 1980, long before knowing about ME, and long before reaching my present
conclusions, but simply on the strength of the awful "education" in
psychology, and the very low
intellectual quality of the professors teaching it, at the University of
Amsterdam. (The link is to a series of essays published in the late
eighties, in the course of a year, for psychologists and students of
psychology at that university, in which I described my professors as "whores
of reason". None of the frauds dared to contest with me in public.)
And yes, there still is real
psychological science - but most of it is neurology, brain science, or
mathematical statistics, all of which are real sciences that are not
open to the vast majority of graduates in psychology, for they lack the
required knowledge of science or mathematics, and usually have no real
scientific or mathematical interests or talents whatsoever.
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