I continue being not well, and otherwise also as before,
so I cannot do much.
In fact, I will today only give a list of
links of some sites I found useful for people with ME, with brief
reasons why and preceded by three links to direct information about ME as
a disease and about the pseudoscience that has been used to trivialize
and falsify it into CFS:
1. Good overviews
2. Good sites
1. Good overviews:
The following three texts, of
which the second is a fine overview of the first for medical laymen, are
the best summaries of ME and its problems by qualified real scientists.
They are very well worth reading, but not easy.
Canadian Consensus Government Report on ME (pdf)
The Canada Criterions (as they are mostly known) for diagnosing ME
prepared by 14 medical specialists for the
Canadian government. Note this is
written mostly - unavoidably for such a report -
These are the criterions for diagnosing someone as having ME that are
seriously by real patients with ME and real
scientists researching ME. The alternatives are either less precise and useful (Fukuda
Criterions) or consist almost whole of intentionally obscure psychiatrists' waffle
(Oxford), that aims underhandedly to stigmatize patients with ME as insane if not
malingerers, for which reasons patients with ME are excluded from all help, which saves
the state and the health insurance companies enormous amounts of money.
The same as the above, written by two members of the team, but a lot
This is probably the best exposition of what is
scientifically known about ME/CFS
in one file.
Magical Medicine (2010)
This is by professor
emeritus Malcolm Hooper, who taught medical chemistry.
It is a very fine overview of what is know
scientifically and of what is claimed and done non-scientifically as regards ME/CFS in
This is another Must Read for anybody interested in the facts about
and around ME,
written up by someone with a great amount of
relevant scientific knowledge.
2. Good sites:
I have checked that the sites that follow do exist today, and should add that
I know of all of them since quite a while and have visited most of them
The fact that I list them here as "good sites" does not imply
that I agree with all that you may find on any of them, but only that they
contain useful information for patients with ME and carers for
such patients, outlined in at least a tolerably clear way, and
indeed also that I have not found anything on these sites I
strongly disagree with.
Finally, be aware that most of the sites in the list that follows
are quite extensive, with many files, and that it may not be
immediately evident from an opening page what is where or how the
site is organized.
- The website
of Dr Sarah Myhill
This is a website of an English MD who takes her patients
serious, tries to treat them well and according to real science
and not pseudoscientific psychobabble, and who therefore came
into problems with the British GMC. See my
The danger Dr. Myhill is in of April,
and her own site above for more.
There also is a great amount of useful information in various
forms, notably her freely downloadable book about ME.
The 25% M.E. Group
Around 25% of
patients with ME get extremely ill from it, often for many years
on end. This is known as severe ME, and this is a large site
especially for patients with severe ME.
It contains a lot of information and is well done.
This is a site about Sophia Mirza,
who had severe ME, was sectioned by force as a psychiatric
patient, then released, after which she died. Her mother, Criona
Wilson, made the site, about which she says
The object of this site is to show how and
what was done
to Sophia, so that maybe through
this, others will become
aware of the horrors perpetrated on
her and on many others
suffering from this terrible disease.
It is very impressive, and very
well done, if bitter to read, with many of the pertinent
Dreams at stake - a
journey of hope through severe ME/CFS
This is the site of an American
woman with severe ME since a long time, called Laurel. She writes
well and has a clear mind, and also made an impressive
ME Action UK
This is the site of some British
person(s) that has the merit of containing many of the papers,
essays and texts by professor Malcolm Hooper and/or Margaret
These texts are some of the scientifically and morally
speaking most sensible writing and best informed writings I have
seen on ME.
A number of these can also be found, normally in better editions,
on the following site:
Invest in ME
This is a nicely designed and well done site with lots of
material related to ME, notably by way of these two general
Information Centre Home
Information Centre Library
This is an extensive site by an English woman, Suzy Chapman, who
is a carer and advocate for a young adult with ME.
It is well done and contains large amounts of information
relating to political, social and scientific backgrounds that are
not so easily found or well presented elsewhere.
Also, Ms. Chapman has a clear mind and can write well, while she
has a strong concern with getting to the facts of the matters she is
concerned with, and she further maintains the excellent site
- DSM-5 and
about the rather
frightening coming DSM-5, in which - and I am by no means the
only psychologist with this fear - all of psychiatry as endorsed
by the American Psychiatric Association will have turned into
pseudoscientific psychobabble, that will have been made
effectively untestable in principle, but in the name of "evidence
This is Hillary Johnson's site, related for the most part to her
book "Osler's Web", about ME/CFS in the US, and how the US CDC
mismanaged, prejudiced and deflected the proper medical and moral
treatment of and scientific research into the disease.
There is a section with recent pieces by her:
and there is for Dutch readers a nice section
In het Netherlands
which has the merit
of containing really good translations of some fine texts by
Hillary Johnson, but a mistaken title (as
Dutchies will see, if they can spell, that is, which is not very
likely these days).
This the blog of an American journalist, Mindy Kitei, who writes
well and who is informed about ME/CFS - and if you know anything
much about modern journalism you know either is rare, and the combination
The niceguidelines blog
This is the blog of an Australian medical doctor with ME. It is well
done and well informed, and it is nice to have a real medical doctor writing about ME, for dr. Speedy, as he calls
himself, does like real science and hates and despises
psychobabble, as any respectable scientist should (see my
Feynman vs Wessely).
Dr. Speedy also has a nice taste
in illustrations. Here is one
of his (larger in the last link):
Hummingbirds' Foundation for M.E. (HFME)
This is an Australian site with a lot of information, that is
well laid out and well presented, also with lots of scientific
This is the blog by a father whose daughter has ME since a long
of Patient Advocate came upon me uninvited. I did not
apply for this job, nor did I have any
qualifications for it. I am
a sculptor, not a doctor or a researcher.
sick with a mysterious fatigue illness and I was
the obvious person
to fill the job."
It is well done, with a lot of information.
Living With Chronic Fatigue Syndrome
This is the blog of an Australian
guy with ME and a sharp mind and some scientific competence and
knowledge. It has some nice exchanges with pseudoscientists, and
it is good to see a patient with ME who can and did quash the
pseudoscientific fraud professor Wessely:
So... this was a list of some sites and
blogs I have come to know about the past year that I found helpful,
instructive, useful, and/or interesting as regards as ME/CFS and the
politicking and developments around and about it of various kinds.
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.
If you want to know more about ME/CFS I
recommend you dip into the above list at various places, also because it
helps to see the same subject through the eyes, minds or prose of various
others, variously placed in life.
(*) 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?)
P.S. Corrections must wait till later.
-- Dec 7, 2010: Some corrections of typos and bloopers.
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.