ME/CFS Medication therapy database

The latest updates:
Monday, 17 December, 2012

- Update on Spirulina

- Update on Chlorella

- Update on the clinical ME/CFS study in Switzerland

- Added Dr. William Collinge's "Principles of Healing"

Treatment protocols
What can I do?
I have tried so many things - nothing has helped so far.
I am beginning to lose courage and the will to fight?
Nr. 1 and most important, never forget this:
Spontaneous healing is always possible!

It can actually happen in any instant. And we can do a lot to facilitate spontaneous healing!
Read Max Rivers story on the right. The best recovery story from ME/CFS on the net!

Also, I strongly recommend this excellent book on spontaneous healing by Dr. Andrew Weil


You are not alone!
A few well-known people who are believed to suffer from ME-CFIDS

Some notable sufferers of CFS are:

Michelle Akers
soccer player
Brian Aldiss
Susan Blackmore parapsychologist, author
Howard Bloom
evolutionary psychologist, author
Neil Codling
formerly of Suede
Blake Edwards
writer and director of such movies as 'Breakfast at Tiffany's', '10', and 'The Pink Panther'
John Fahey
folk guitarist
Clare Francis international yachts-woman and author
Laura Hillenbrand
author of the book 'Seabiscuit: An American Legend'
Kelly Holmes
Keith Jarrett
jazz pianist
Duchess of Kent
Alastair Lynch
Australian footballer
Stuart Murdoch
of the band
'Belle & Sebastian'
Barry Sheen
ME-CFIDS (Wikipedia)
Everyday fatigue compared to ME CFIDS CFS - fatigue is like
a match compared to an atomic bomb!
(Not to speak of all the other symptoms!

CFS ME CFIDS Research and medication database. Myalgic Encephalomyelitis. Chronic fatigue and immune dysfunction  syndrome.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


Principles of Healing

5th March 2007

William Collinge PhD describes his experiences of a decade working with people suffering from ME/CFS and Fibromyalgia in an

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:

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.

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.


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
(" 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:

Max Rivers: One man's inner experience and cure from ME-CFIDS-CFS




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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