The 5th Invest in ME
I am not well at all so today I just mention I could have
discussed rather a lot in the Dutch paper the
that I shall leave undiscussed for lack of health and rather a lot of
pain or dysfunctional beliefs therein... which leads me to what I do wish
to quote, namely another excellent letter by professor Malcolm Hooper,
this time to the Editor of the Guardian. I added all the links, which do
all support professor Hooper's words, but except for the first link to
the Guardian's letters address, that was in the original on the net, that
it is I who is responsible for the links and not professor Hooper
From: Professor Malcom Hooper
The growing understanding of ME shown in the recent article (The
with ME 14/05/10) by your medical correspondent, Sarah Boseley, is
welcome. However, there are a number of significant errors and
ME is Myalgic Encephalomyelitis, which signifies muscle pain with
inflammation of the brain and spinal cord (inflammation has been shown
occur, in three recent UK post-mortems) and the disorder has been
by the WHO as a neurological disorder since 1969. The correct
NOT myalgic encephalopathy, which is not classified and is a much less
specific clinical term. The alternative term Chronic Fatigue Syndrome,
was introduced in 1988. Its use is restricted by the WHO to ICD-10
excluded from use elsewhere,
in somatoform, fatigue, chronic
fatigue, and fatigue syndromes which are classified at F48.0. The
similarities in these words used in F48.0 and in G93.3 have led to much
confusion, and some deception, by those seeking to reclassify ME as a
The identification of people with ME relies on accurate terminology and
definition which are essential for well designed research studies. The
CDC-Fukuda 1994 definition has been shown to be non-specific, whilst
1991 Oxford definition developed and favoured by certain influential
psychiatrists who work for the medical insurance industry, excludes
neurological conditions. Studies with such
heterogeneous cohorts of patients
cannot provide any meaningful data for interpretation. The current
Research Council PACE Trial on "CFS/ME" is seriously flawed in this way
since it uses the Oxford definition which embraces all states of
unexplained fatigue" but by definition excludes those with ME,
that defies logic.
2003 Canadian Criteria were produced by very experienced clinicians
between them have diagnosed and treated over 20,000 patients with ME.
provide comprehensive clinical signs associated with ME, from which any
competent physician should be able to make a diagnosis with the use of
appropriate investigative tests many of which are restricted or
in the UK by NICE.
Although the recent judicial review did find against the ME plaintiffs,
decision is the subject of a legal challenge due to the alleged failure
due legal process.
The undeclared vested interest of doctors associated with insurance
companies was critically exposed in the report by senior
chaired by Dr Ian Gibson which exposed the severe difficulties
by patients with ME when they seek benefits and support. This is not
conspiracy theory or paranoia but a daily reality for many patients,
families and carers.
Over many years
it has been demonstrated that numerous viruses are
associated with ME, the most common being enteroviruses with herpes
(glandular fever etc) coming second.
People do die from the illness (Jason et al. Health Care for Women
International 2006:27:615-626). The tragic
story of Sophia Mirza, who died
aged 32 from ME, has been published, together with her medical records.
demonstrate the ideological commitment of some clinicians to the
somatoform model of the illness and the ignorance and inhumanity of
members of the medical profession, including sectioning of a very
and accusations, in this and other cases, of MSBP (Munschausen's
proxy) with parents having only limited access to their children or
banned from any contact.
The offer of only behavioural modification and
incremental aerobic exercise
(CBT and GET, upon which the payment of benefits is contingent),
management techniques and in no way curative,
treatments for people with a severe neurological disorder is unethical,
a betrayal of doctor's Hippocratic oath. Many surveys by ME
including the 25% ME Group for the Severely Affected that represents
most severely ill have shown that CBT has no
lasting value and that GET is
positively harmful. The most severely
affected are almost totally excluded
from any research studies since they are housebound or bedbound.
The recent discovery in the US of the retrovirus, XMRV, in ME/CFS
emphasises the urgent need for biomedical studies. The acclamation of
three subsequent studies that failed to find XMRV by those who
the behavioural model of ME (which did not attempt to replicate the US
study) serve merely as vehicles to discredit
any suggestion that ME/CFS is a
serious organic disease.
Following the demonstrated association of a retrovirus with ME/CFS, the
Canadian and New Zealand governments have banned patients with ME from
serving as blood donors. This accords with the current UK position that
people with ME must refrain from donating blood.
If Sarah Boseley attends
the forthcoming Invest in ME conference on 24th May
at 1, Birdcage Walk, Westminster, she will hear international experts
addressing most of the above topics. She will be one of the few medical
journalists who appear willing to listen and learn in order to
more fully the complexities of the chronic multi-system illness that is
I look forward to meeting her there.
Malcolm Hooper (Professor)
Once more, an excellent letter by professor
Hooper, to whom the patients with ME/CFS owe very much, for
helping them with real science and rational argument to defend their
human dignity and honesty and to further research into the bio-medical
cause of their suffering.
The last link like the above globe lin
to the opening announcement of the conference and here is a link to the
A New Era in ME/CFS Research
from which you can learn that professors and doctors
Peterson, Klimas, Jason, Chia, Cheney, Kerr and Mikovits will all be
there, chaired by professor Hooper. The above link gives a good overview
and pictures. I wish I could be there but lack both the money and the
P.S. I forgot to add that I did today add almost
ME - Resources,
for lack of health, and that I did receive a fine mail with corrections
for some links, that I still must work in.
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
Supplements on ME
P.P.S. As you will probably have seen, the
ME - Resources
needs more notes to the files than are there, and I also plan to include
considerably more resources. If my readers have patience and I get a
little health, it may RSN too...
O, and if by chance a link or two don't work (I don't know): Again be
patient (or mail me) and it will be sorted out, for
ME - Resources
is a Work In Progress.
And it keeps being trouble some to make tables behave as they should
in Firefox using my Frontpage for editing...to be improved later,
hopefully, like so much in life.
(*) Jews compared to cockroaches (as excellent
survivors, also, 'in exoneration': The Dutch are
lovely persons, with a few exceptions...);
drugs (at long last, at least 40
years too late, it seems Bolkestein and Borst read the British
Parliamentarian report on drugs of 1969: legalize what can be legalized;
medically prescribe conditionally what cannot);
Maybe I return to these, but that as well depends on
my health, that
for the moment does not allow it.
(**) I add this to make clear that although the
text of the letter I reproduce is precisely as I found it, the links I
added (all but the first) do not occur in it and are not professor
Hooper's doing, nor did I ask his consent. I added them because they
clarify and support what he says, and says very well, but within the
space normally permitted for printed letters to the editor.