May 18, 2010


ME: Excellent letter by professor Malcolm Hooper + ME/CFS Conference

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The 5th Invest in ME

International ME/CFS Conference 2010

I am not well at all so today I just mention I could have discussed rather a lot in the Dutch paper the NRC-Handelsblad (*) 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
To: letters@guardian.co.uk

The Editor

The growing understanding of ME shown in the recent article (The trouble
with ME
14/05/10) by your medical correspondent, Sarah Boseley, is most
welcome. However, there are a number of significant errors and omissions in
the article.

ME is Myalgic Encephalomyelitis, which signifies muscle pain with
inflammation of the brain and spinal cord (inflammation has been shown to
occur, in three recent UK post-mortems) and the disorder has been classified
by the WHO as a neurological disorder since 1969. The correct terminology is
NOT myalgic encephalopathy, which is not classified and is a much less
specific clinical term. The alternative term Chronic Fatigue Syndrome, CFS,
was introduced in 1988. Its use is restricted by the WHO to ICD-10 G93.3 and
excluded from use elsewhere, particularly 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
somatoform disorder.

The identification of people with ME relies on accurate terminology and case
definition which are essential for well designed research studies. The
CDC-Fukuda 1994 definition has been shown to be non-specific, whilst the
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 Medical
Research Council PACE Trial on "CFS/ME" is seriously flawed in this way
since it uses the Oxford definition which embraces all states of "medically
unexplained fatigue" but by definition excludes those with ME, a situation
that defies logic

The 2003 Canadian Criteria were produced by very experienced clinicians who,
between them have diagnosed and treated over 20,000 patients with ME. They
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 proscribed
in the UK by NICE.

Although the recent judicial review did find against the ME plaintiffs, the
decision is the subject of a legal challenge due to the alleged failure of
due legal process.

The undeclared vested interest of doctors associated with insurance
companies was critically exposed in the report by senior Parliamentarians
chaired by Dr Ian Gibson which exposed the severe difficulties experienced
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 viruses
(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.
These demonstrate the ideological commitment of some clinicians to the
somatoform model of the illness and the ignorance and inhumanity of some
members of the medical profession
, including sectioning of a very sick woman
and accusations, in this and other cases, of MSBP (Munschausen's syndrome by
proxy) with parents having only limited access to their children or even
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)
, which are
management techniques and in no way curative, as allegedly effective
treatments for people with a severe neurological disorder is unethical, and
a betrayal of doctor's Hippocratic oath
. Many surveys by ME charities,
including the 25% ME Group for the Severely Affected that represents the
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 patients
emphasises the urgent need for biomedical studies. The acclamation of the
three subsequent studies that failed to find XMRV by those who subscribe to
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 understand
more fully the complexities of the chronic multi-system illness that is ME.
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 health.

P.S. I forgot to add that I did today add almost nothing to 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. Anthony Komaroff

Ten discoveries about the biology of CFS (pdf)

3. Hillary Johnson

The Why

4. Consensus (many M.D.s) Canadian Consensus Government Report on ME (pdf)
5. Eleanor Stein

Clinical Guidelines for Psychiatrists (pdf)

6. William Clifford The Ethics of Belief
7. Paul Lutus

Is Psychology a Science?

8. Malcolm Hooper Magical Medicine (pdf)

Short descriptions:

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 journalist.
4. Report to Canadian Government on ME, by many medical experts.
5. Advice to psychiatrist by a psychiatrist who understands ME is an organic disease
6. English mathematical genius on one's responsibilities in the matter of one's beliefs:
   "it is wrong always, everywhere, and for anyone, to believe anything upon
     insufficient evidence
7. A space- and computer-scientist takes a look at psychology.
8. Malcolm Hooper puts things together status 2010.

"Ah 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. "
     - (Jung Chang)

See also: ME -Documentation and ME - Resources

Supplements on ME

  ME: On having severe ME
  ME: !! Seriour Health GET + CBT Warning !!
  ME: ME and Human Rights
  ME: Back to the Middle Ages with professor Simon Wessely
  ME: Back to the Middle Ages with professor Simon Wessely - P.S.

Studies in MEdical Sadism

  0: Studies in MEdical Sadism (overview + Kumar & Clark's Clinical Medicine)
  1: "Die Mörder sind unter uns" (the baseness of some medics and politicians)
  2: "101 Good Reasons" (clarification CBT+GET & 101 reasons by G. Crowhurst)
  3: "The evidence & the techniques" (current techniques of MEdical sadism)
  4: Intermezzo - Lucian (a very disrespectful most intelligent satirist)
  5: The amazing & great Kim & Dr. Yes (alas still not well-reformatted yet)
  6: Herr Professor & Frau Doctor Wessely (The Real Truth metavisually)
  7: Professor Simon Wessely's many mental issues (just so: a real sicko)
  7a: P.S.: Professor Simon Wessely's many mental issues (the logic of it)
  8 : Professor Wessely's crap completely clarified (visually) (DrSpeedy+profSW)
  9: Studies in MEdical Sadism - 9 : Dr. Yes maltreated
  ME-disch sadisme op wereldschaal: Zeer verbitterend nieuws
  ME: Waarom dokter Mengele medicijnen studeerde - 1
  ME: Waarom dokter Mengele medicijnen studeerde - 2
  ME: Uitstekende studie over ME en CGT en GET
  ME: !! Seriour Health GET + CBT Warning !!
  ME: Unsere Doktoren - Ohne Wörter - 2

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); education (gymnasia) and more.

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.

Maarten Maartensz

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