TEXT VERSION "On your behalf: Expert advice on treating ME" (Mail on
    Posted by: "MEagenda" me.agenda@virgin.net meagenda
    Date: Mon Jan 15, 2007 2:03 am ((PST))

I am deeply disturbed by the number of quotations in this article from
the
unofficial "Gibson Report".  It was not within the remit of the
"Report" to
be prescriptive about medications and treatments.

It was not within the remit of the "Report", either, to evaluate
whether and
at what age ME occurs in children.  Are we going to see other media
articles
with "...according to the Gibson Report, ME only "possibly" exists in
children?"

Also the status of this "Report" and the committee which produced it is
not
defined in the article.

One again, Hooper and Invest in ME are "cherry picking" this unofficial
"Report".

Suzy Chapman


PERMISSION TO FORWARD, REPOST & USE IN NEWSLETTERS.
To: All My M.E. Chums, ME Free For All.org volunteers & Online Groups.

(If anyone is troubled by duplicates or prefers not to receive e-mails
of this sort, please let me know and I'll remove you from the list
immediately)

Following the exceptional interest in this article, I received requests
from
at least one member of every M.E. on line group + others for a text
version.

I'm grateful to Stephen Ralph who defied sleep for as long as he could
last
night to produce the Lion's share of this work and I tidied it up this
morning.

I hope it will stimulate more people to respond with whatever their
opinion
since, I am sure, it increases the chance of at least one or two of us
getting published.

The e-mail address is letters@mailonssunday.co.uk

Cheers
John
drjohngreensmith@mefreeforall.org

Health Notes
On your behalf

Health Editor Sarah Stacey asks the experts for answers to your health
queries

 Q. My daughter, 33, has been diagnosed with ME (myalgic
encephalomyelitis)
but the doctors seem to be treating her as if the illness isn't
physical but
all in her mind. She's not getting better. Is there another approach?

 A.  There has been a fierce argument about the nature of this
debilitating
condition for several decades. Some psychiatrists claim it's a
psychosomatic
condition where patients imagine they have an illness but increasing
numbers
of scientists worldwide state that it's a genuine physical (or organic)
condition. The situation was reviewed in a recent parliamentary
inquiry,
chaired by Dr Ian Gibson MP, which backed the latter; see the full
report on
www.erythos.com/gibsonenquiry/Docs/ME_Inquiry_Report.pdf.

'ME is a chronic inflammatory condition, involving the spinal column
and
nerves in the brain. It is a multi-system, multi-organ illness
affecting the
brain, hormones and immune system,' says Malcolm Hooper, Emeritus
Professor
of medicinal chemistry at the University of Sunderland.  It can often
be
traced back a viral or bacterial infection, or even an immunisation,
explains consultant physician Dr William Weir: 'Any infection switches
on
genes in the immune system fight back.  But research suggests that in
ME
patients these genes aren't switched off once the offending organism is
cleared, so the immune system is stuck in a state of red alert.  Many
patients say they feel as if they have flu all the time.'  Toxic
chemicals,
such as organophosphate pesticides (used in head-lice shampoos), may
trigger
the illness, too.

The reasons the psychiatric lobby have claimed the condition for their
own
are that patients are often depressed and tests show physical change.
Although virtually every disease has a psychological element, says the
Gibson inquiry, 'it is likely the inactivity and lethargy caused by the
ME
combined with psychological aspects such ... social stigma, lack of
classification or possibility of a cure, leave the ME sufferer ... more
prone to depression.'

Dr Weir explains that, `while inflammation is easy to spot in other
inflammatory conditions, with ME it seems very subtle and diffuse.'
The
situation is complicated by the fact that chronic fatigue, one of the
main
symptoms, can be due to other illnesses, including underactive thyroid,
as
well as more serious problems, so excluding those is vital.  The Gibson
inquiry suggests adopting the criteria for diagnosing ME developed by
Dr
Bruce Carruthers's team (see the Gibson inquiry, as before, pages
15-17).

Sadly, the £11 million NHS budget has, to date, gone into centres where
ME
is treated as a psychiatric condition with cognitive behavioural
therapy
(which has helpful but transient effects in some patients), graded
exercise
therapy (which some experts say is positively damaging) and pacing, a
method
of managing energy (which is common sense). More research is vtal but
the
Gibson inquiry emphasises the need for a `holistic, mind and body
approach'.

Expert advice includes:

  a.. Eat well with omega-3 rich oily fish and fresh vegetables and
fruit
Excluding red meat may help.
  b.. Patients with IBS-type symptoms may benefit from pinpointing
trigger
foods through elimination diet. (See The Complete Guide to Food Allergy
and
intolerance by Professor Jonathan Brostoff and Linda Gamlin,
Bloomsbury,
£6.99.)
  c.. Anti-inflammatories and painkillers may relieve joint and muscle
aches. Drug therapies so far are 'uniformly disappointing', says the
Gibson
inquiry, but antiviral agents and interferons may prove helpful.
  d.. Meditation aids relaxation.
  e.. Acupuncture, reflexology and aromatherapy may relieve symptoms.
  f.. Try gentle yoga (search Google for local classes).
  g.. Follow short spurts of activity with rest.
  h.. High levels of EPA (eicosapentaenoic) omega-3 fatty acids have
benefited some sufferers. (See Chronic Fatigue Syndrome: a natural way
treat
ME by Professor Basant K Puri, Hammersmith Press, £14.99.)
Books mentioned are available from you-bookshop.co.uk; post-free, tel:
0870 162 5006


LIFE  SUPPORT

Or rather, not ... ME is currently defined a psychosocial by the
Department
for Work and Pensions (DWP) and medical insurance companies - despite
its
World Health classification neurological disease - so patients are not
entitled to the higher level of benefit payments.  This is 'in the
financial
interest of both the DWP and the medical insurance companies' rather
than
the sick person, says the Gibson inquiry and these patients should be
entitled to the higher rate.

 E-mail Sarah at s.stacey@you.co.uk

 Sarah reads all your e-mails but regrets that she cannot answer them
all
personally

 Helpful websites


  a.. Investinme.org - an independent charity campaigning for more
biomedical research into ME, with excellent information for patients
and
carers.
  b.. Professor Hooper's lecture, Engaging with ME, is available
through
satori-5.co.uk/1_severe_me/prof_hooper_dvd.html

Thanks to our experts

Professor Malcolm Hooper;

Dr William Weir, tel: 020 7467 8478;

Professor Jonathan Brostoff. tel: 020 7435 7106


YOU 14 JANUARY 2007