me+ME: Site news & some ME news
Another brief Nederlog, as described in the title
1. Site news
The site news is that I changed the opening page a little on
the left side, by changing the ordering of the topics, and that I added
Explanations, on the opening page
on the right hand side below - but this I started and have not
finished yet, and mention only because it is a change of the opening page,
Explanations is new, but needs more work.
I do as I
can, not as I want. In that context:
2. Some ME news
I mentioned five days ago
and now there are videos from it, as it was held namely here
One of the speakers was prof.dr. Leonard Jason. This is also
on video on Youtube and dr Speedy has the following item about it
from which I quote - and this is dr Speedy summarizing,
while I have bolded some
He specifically mentioned the UK PACE Trial (carried out by
Wessely School psychiatrists) and noted the controversy flowing from that
The PACE Trial Principal Investigators (PIs) intentionally sought as
heterogeneous a cohort of “fatigued” people as possible in order to enhance
both recruitment to the trial and the alleged “generalisability” of the
Wessely School’s cognitive re-structuring and aerobic exercise programme to
as many “fatigued” people as possible (Trial Identifier:3.6).
Such intentional heterogeneity obviously captured people with affective
disorders in which “fatigue” is a prominent feature, yet the PIs assert that
they were studying patients with “CFS/ME” (which they insist is the same
disorder as ME/CFS, a complex neuroimmune disorder) when their definition of
“CFS/ME” has few of the features of classic ME/CFS. Indeed, the
pathognomonic feature of ME/CFS -- post-exertional fatigability with malaise
-- is not required in their definition of “CFS/ME” which has on-going
“fatigue” as the primary symptom.
In the UK, NHS staff are likely to obtain their knowledge about the PACE
Trial from the “NHS Choices” Information page on its website
Perhaps unsurprisingly, this website contains frank misinformation about the
results of the PACE Trial; for example, the PACE Trial was not a
“controlled” trial as claimed; the Oxford criteria are not “standard
diagnostic criteria for CFS” when “CFS” is deemed to include ME -- they are
used only by the Wessely School who produced them in 1991; PACE participants
were not “confirmed as free of mental health problems such as
depression and anxiety”; participants did not meet the (proposed)
“London Criteria” for myalgic encephlaomyleitis, but a version compiled by
the Chief PI (Professor Peter White) himself, which was basically the Oxford
criteria without psychiatric illness; SMC (specialist medical care) was
not universally provided by a doctor “with specialist experience in
CFS”; 22 of these “experienced specialists” were in fact trainees (all from
the same centre) who, by virtue of being trainees, could not be
called experts experienced in the medical care of people with CFS.
Thus despite hollow assurances from the Department of Health, the grass
roots situation in the UK remains dire for people with ME/CFS, so the
following quotations from Professor Jason at the SOK Workshop are of
particular relevance to patients themselves and to the various agencies of
State to which the Wessely School are advisors on “CFS/ME”:
“If investigators select samples of patients who are different in
fundamental aspects of this illness because of ambiguities with the case
definition, then it would be exceedingly difficult for investigators to
consistently identify biomarkers”.
“In summary, any scientific enterprise depends on reliable and valid ways of
classifying patients into diagnostic categories. When diagnostic categories
lack reliability and accuracy, the quality of the treatment and clinical
research can be significantly compromised”.
“If CFS is to be diagnosed reliably across health care professionals, it is
imperative to deal with criterion variance issues and provide specific
thresholds in scoring rules for the selected symptomatic criteria”.
In the discussion that followed his presentation Jason was emphatic:
“Those folks who have primarily affective disorder need to be
“I think the key issue is the defining of the sample and in our current
scientific publications, the basic description of who these samples are is
completely inadequate, and we’ve got to do something to change that….if we
don’t tackle that issue…our foundation is just going to be shaky”.
Quite so. More
P.S. Corrections, if any are necessary, have to
be made later.
As to ME/CFS (that I prefer to call ME):
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
4. Report to Canadian Government on ME, by many medical experts.
5. Advice to psychiatrist by a psychiatrist who understands ME is an
6. English mathematical genius on one's responsibilities in the matter
of one's beliefs:
is wrong always, everywhere, and for anyone, to believe anything upon
7. A space- and computer-scientist takes a look at psychology.
8. Malcolm Hooper puts things together status 2010.
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. "
ME -Documentation and
ME - Resources
Maarten Maartensz (M.A. psy, B.A. phi)
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