| |
 ME/CFS,
Chronic fatigue syndrome treatment.
Myalgic Encephalopathy. Encephalomyelitis.
ME/CFS
is a biological illness - not
a mental disorder ! |
Clinical
ME/CFS study in Switzerland
(Preliminary results) |
2. April
2007
Update on
"Cerebral Volumetry and Diffusion Tensor Imaging of the
Thalamus with Chronic Fatigue Syndrome" at the Insel
Spital in Berne, Switzerland
I recently
called the Physician in charge, Dr. med. Stefan Begré,
on the progress of the study.
He
confirmed the news from Journalist Anna Klott in the "Neue
Zürcher Zeitung, NZZ" (Biggest conservative newspaper
in Switzerland) from 4th March 2007:
"...zwischen
der Grösse des Thalamus und der Schlafqualität von
CFS-Patienten besteht ein Zusammenhang...
...Der
Thalamus spielt bei der Regulierung des Schlafes eine wichtige
Rolle, und CFS-Patienten schlafen meist schlecht. Gestört
scheint vor allem ihre Fähigkeit zum Tiefschlaf..."
"...There
is a connection betweeen the size of the thalamus and the
quality of sleep with CFS-patients...
...The
thalamus plays an important role in regulation of sleep, and
CFS-patients often don't sleep well. Especially the deep sleep
phase seems to be disturbed..." |
Dr.
Begré however emphasized that these are preliminary
results with a sample of only 12 patients!
(All in all, 30
patients with ME/CFS and a control group with 30 healthy patients
will undergo measurements/brain scans with magnetic resonance tomography.)
Futhermore
Dr. Begré commented about a valganciclovir-study,
which was also mentioned in the newspaper article. He was not very
enthusiastic about it, and recommended to try out this anti-viral
only if you know about the serious side-effects
that valganciclovir can show:
"...Von
25 mit Valganciclovir behandelten Patienten ging es 21 danach
deutlich besser, darunter ein Patient, der 18 Jahre lang unter
schwerster CFS gelitten hatte.
Jetzt soll das Mittel in einer grösseren Studie noch
einmal systematisch auf seine Wirksamkeit gegen CFS getestet
werden.
Das
Medikament könnte mindestens dann etwas helfen, wenn
Viren die Funktion des zentralen Nervensystems gestört
haben..."
"...From
a group with 25 patients treated with valganciclovir, 21 felt
disctinctly better, among them a patient that suffered for
18 years from serious CFS-symptoms.
Now,
the medication will be tested again in a bigger study for
its efficacy against CFS.
Valganciclovir
could at least help, if the virus has interfered with the function
of the central nervous system..." |
Dr.
Begré and his fellow researchers will soon publish a scientific
paper about these preliminary results of the thalamus study. I keep
you updated here.
Jump
to the first article about this thalamus study |
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Principles
of Healing
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5th
March 2007
William
Collinge PhD describes his experiences of a decade working
with people suffering from ME/CFS and Fibromyalgia in an immunesupport.com-article.
1.)
Creating the conditions for self-healing is primary.
Collinge suggests that we should treat whatever medical support
we use (even alternative treatments) as secondary. So our main focus
should be directed towards creating the optimal conditions for self-healing.
2.)
People who find meaning in their illness have better medical outcomes.
William
Collinge advices us to see illness as a teacher. He emphasizes that
we did not cause our illness, but that is a call to re-evaluate
our priorities and learn some important life lessons. We are invited
to see our disease as an opportunity for positive change.
3.)
Daily practice of meditation.
Collinge mentions that countless studies prove that meditation
helps reducing pain and healing the nervous-, circulatory-, immune-,
digestive- and hormonal system. It could also help us to attune
to inner inspiration and guidance.
In this context I recommend a personal
understanding of the mystery of who we really are: Advaita,
non-duality
4.)
Let your nervous system rest.
William Collinge suggests that we should radically simplify
our lives. He places importance on eliminating or even totally
reducing things like: television, news, noise and other agitating
sources of neurological stimulation.
5.)
Avoid de-conditioning through non-impact, gentle exercise.
Exercise stimulates our vital energies. Those vital energies are
needed for healing, Dr. Collinge explains. He recommends aerobic
exercise such as walking, cycling or movement in water, as well
as practices such as tai chi or chi kung. De-conditioning is common
in people with ME/CFS who avoid exercise for fear of worsening the
symptoms which causes a further decline in vitality.
6.)
Nourish your soul through music, art, creativity, being in nature
and so on.
William Collinge believes that the subtle energy behind
all healing is stirred by passion, pleasure, joy and practice loving
kindness. He also says that feelings of appreciation, gratitude,
compassion and love (for yourself and others) will cause the body
to relax. This relaxation can reduce the severity of symptoms.
7.)
Breathing exercises
Dr. Collinge recommends a breathing technique called
'Evocative Breath Therapy', which involves a blend of music, guided
imagery and breathing exercises. He talks about patients who have
reported their pain completely gone for a time after using breathing
exercises.
I also experience good short-term results
with breathing techniques. I recommend Rebirthing.
8.)
Find supportive relationships
Collinge
points out that the social isolation due to physical limitations
of ME/CFS and Fibromyalgia is one of the greatest challenges.
Research shows that supportive relationships can help promoting
physical healing. He recommends that we invest in relationships
that support us - and saying a clear "no" to those who
don't!
9.)
Let go of the striving for a cure
Dr. William Collinge describes the paradox, that when we let go
of striving for an outcome, an inner relaxation arises that enables
our healing responses to work at their maximum. He suggests replacing
our focus on future outcomes with an attitude of trust that your
highest good will prevail.
 Dr.
William Collinge |
Clinical
ME/CFS study in Switzerland
|
(Warning:
I suffer from ME/CFS myself and due to brain-fog I can not guarantee
that the information in this report is 100% accurate!)
18. October 2006
"Cerebral
Volumetry and Diffusion Tensor Imaging of the Thalamus with Chronic
Fatigue Syndrome"
This
clinical CFS-study in Switzerland is currently in progress. It takes
place in the capital of Switzerland, Berne. (At the
Insel
Spital; departement of psychosomatic medicine / general internal
medicine.)
Physician
in charge is Dr. med. Stefan Begré
Dr.
Begré's team recently checked my brain with a magnetic
resonance tomography device
(Translation!? Magnetic Resonance Imaging (MRI)? German: "Magnet
Resonanz Tomographie MRT")
30
patients with ME/CFS and a control group with 30 healthy patients
will undergo measurements/brain scans with magnetic resonance tomography.
(The 30 ill subjects are being tested rigorously via many questionnaires
and personal interrogation to make sure that they suffer from the
'real deal', and to assess the various CFS-subgroups.)
Dr.
Begré and his fellow researchers suspect a serious malfunction
of the thalamus; they also don't want to exclude the possibility
of the additional influence of some (yet not discovered?) virus.
As soon as the results of my brain scan arrive, I will publish them
here.
I
posted info about this study here for German speakers:
Informationen über diese studie für Deutsch sprechende:
Cfs-board.de/forum
Brain
Scan / Neuroimaging (Wikipedia)
19.
October 2006
Some
questions I got via email and forum posts:
What
is the actual thalamus malfunction?
If we only knew! I guess they are not sure - they suspect a 'general
imbalance' of the thalamus, if I understood Dr. Begré correctly.
What exactly is the function of the thalamus?
Wikipedia
says:
- There is not a single thalamic function...
- The thalamus also plays an important role in regulating
states of sleep and wakefulness...
- Thalamic nuclei have strong reciprocal connections with
the cerebral cortex... ...are believed to be involved with
consciousness.
- The thalamus plays a major role in regulating arousal,
the level of awareness and activity.
- An animal with a severely damaged or severed thalamus suffers
permanent coma.
- Many different functions are linked to the system to which
thalamic parts belong... : ... sensory systems ...
auditory, somatic, visceral, gustatory and visual systems.
- A major role of the thalamus is devoted to "motor"
systems.
Newer research suggests that thalamic function is even more
complicated.
Livescience.com
Thalamus
(Wikipedia) |
If
the thalamus indeed controls and regulates all those functions a
lot of our CFS-symptoms would really be the logical consequence
of a thalamus imbalance!
What
about Acclydine? Doctors in belgium made a medicine called acclydine
that was supposed to help hypothalamus.
Acclydine
is also in my ME-CFIDS-CFS database.
But I have to first do some research on how specific the influence
of this medication on the hypothalamus is.
Where
are links to more information on the study?
Dr. Begré said a scientific paper is going to be published
soon. I keep you updated.
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Absolute
Must Read
for everybody suffering from ME-CFIDS |
100% Recovery from ME/CFS
Read this story from
Max Rivers, Shutesbury, Massachusetts, USA
|
One
man's inner experience, and cure
This
is by far the most fascinating (and credible) story of a 100% full
and lasting recovery from severe ME/CFS.
It motivates me enormously each time I read it. Hell, I even cried
the first few times upon reading the paragraphs where the healing
occurred. This story is gonna touch all of you who live in this
nightmare very deeply!
I consider it a 'spontaneous healing facilitated through
various means' like:
- vision quest
("...I was going to
ask the spirit what to do next...")
- special diet
("...I only drank powdered rice protein
and water for 21 days...")
- homeopathy
("...as
a pure vibration, it gently sets up that vibration inside your body...")
- psychic healing
("...You
have had the courage to look your truth in the face. And so you
will be healed...")
- mindfulness, zen-like meditation
("...I just sat and watched the mountains
and felt my body...")
-
absolute determination to get well again
("...My soul likes
one-way tickets. It shows commitment...")
Upon reading about his symptoms you clearly realise that he suffered
from the real ME-CFIDS.
Not burn-out nor depression nor something else!
Max Rivers claims to have had the most effects from a homoepathic
medicine called B.E.Kit (Bar Epstein). However,
I tend to think that the more important causes that lead to his
full recovery are the already mentioned and:
He went at a retreat center for a sweat lodge,
(
Sweat
lodge - Wikipedia) for a vision quest:
"...Inside
the lodge, as the air heated past endurance, my skin began to vibrate
with virus. Screaming that couldn't be heard was crawling over and
under my skin..."
In this context please check also the
Far-infrared
sauna discussion group (general sweating and especially far-infrared
heat can help alleviate ME/CFS symptoms!)
I also did a native American sweat-lodge ceremony in Costa Rica
in Winter 2004. After 2 of the 3 passages, I had to stop. It was
just too much. I really felt that if I went for the last passage,
I would die!
However I had much more success with the ayahuasca vision quest
(story soon to come) in the jungle of Costa Rica, which lead 3 times
to a full recovery for a few hours!
So, Max Rivers in the sweat lodge asked his 'soul':
"What is it that
you want me to know, what must I learn, look at, see, say, understand?
I will do whatever it takes. I commit to you and to me and to this
process fully. I commit to my soul."
This brought me to the idea of asking our 'inner wisdom
- soul - higher me' what is going on with this illness during
Lucid
dreaming (Wikipedia). I
has already been discussed a few times on CFSEXperimental upon bringing
the subject in.
And now, fellow sufferers, see part of the miraculous healing:
"...And then it
happened. I could suddenly feel my reach go out, all the way out
into the blackness of space, and I could see my energy in little
bits of light like stars.
A call had gone out, and my little energy bits all suddenly woke
up all at once and came rushing towards me from every direction
and from a great, long distance away..."
Ok, I bet you are convinced by now, that this is an extraordinary
healing story.
I recommed printing the whole text and reading it whenever you're
beginning to lose hope:
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| Why
did ME/CFS happen to its sufferers? |
...All you need to understand is that it has.
From its onset, you have begun a journey within yourself. You
will now encounter the higher levels of your existence. This
unique experience brings with it a sense of spiritual requestioning
about who you are as a human being and how you fit into the
grand scheme of life...
...Although you are temporarily diseased in
your body and mind, you still reign supreme in your reality.
You will still continue to be who and what you are -
a distinct, individual, spirited being...
...As the syndrome flared into your life, you
probably were so overwhelmed and over involved with life's tasks
and chores that you really weren't living.
You were in this sort of existence where all that mattered was
toiling to get ahead fiscally and materialistically.
It was living like being stuck on life's rat wheel-running round
and round to get nowhere...
...You would have kept striving for more material
things and would have committed so much time and energy out
of your life that there would have been very little, if any,
left for you.
You no longer had your good health and the realization that
without being healthy, you literally had nothing. ME/CFS became
the true centering point where you would finally learn the value
of life's "things"...
Oneness
with your inner Self
(c) by Anna Harriman |
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Treatment
protocols
What can I do?
Nr.
1 and most important, never forget this: