Wednesday, 14 January 2009


…I have not been writing for a long time. Some time ago, my father died after a short illness. He was 84, so I guess it was not completely unexpected, still difficult. However, around Christmas, I noticed that I anyhow had managed all that had happened around his illness, death and funeral surprisingly well – physically speaking. This betterment has continued now during January too, so maybe the extra weakness and pain from the hormone imbalances and pituitary surgery last spring finally is going away.

I also now know that the MR brain scan in September showed a ‘clean’ pituitary! They didn’t see any residual tumour tissue on those pictures. Of course, in the end, there could be some few cells left, that slowly will continue to grow again, but for now everything looks fine.

In the autumn, I was also referred to a new specialist, specialising in neuro-muscular diseases and genetic mitochondrial conditions that now are known from DNA sequencing investigations. I spent almost two hours going through my whole story, from 25 years ago until now, with him. Well, really my whole life story –medically speaking. He even asked about if I had noticed something already as a kid and when growing up. The result of this interview/discussion with him was that he was going to take some time and think about my condition and story, and if he could figure out something, he would come back. This was in early October.

Well, now last week, I got an appointment for taking muscle biopsies. Exactly what he is going to check I don’t know, and I really don’t expect anything new to come out of this. But of course, it is good that someone is testing something new about CFS. Maybe there is something wrong with the energy producers in the muscle fibres – the mitochondria’s.

I will have another, completely different test done too. My father died of a ruptured aortic aneurysm, and when I told my cardiologist about this at the yearly ultrasound check-up of my heart, he immediately referred me to the vessel specialists here at the hospital. The condition is much more common in male siblings of known patients, and furthermore they started general screenings of all men at 65 years here in Uppsala some two years ago. So the knowledge is present here. I only hope it has nothing to do with my known brain aneurysm, or the hiatal hernia I have had for a long time now. It could be a generalized weakening of smooth muscle cells in these structures, but it could also be specialised disruptions at each site causing the different bulginess. No one knows the exact reason for aneurysms or hernias.



charlotte said...

I stumbled across your blog & I thought I would shoot you a quick note to bring some research to your attention which you may not have seen.

Specifically, it's the work of Rich Van Konynenburg. I believe his papers are all posted here:

He recommends a test offered by ELN in the Netherlands. (You can google them.. they have a website.)

Here is some info I have cut and paste from a CFS forum called

The Vitamin Diagnostics panel is a biochemical panel that measures metabolites in the methylation cycle, the folate metabolism, and the glutathione system.

I recommend getting the Vitamin Diagnostics panel for anyone with CFS who wants to determine whether they have a partial methylation cycle block and/or glutathione depletion, and who wants to determine baseline values for the metabolites involved, for comparison later, to determine progress on the treatment of these abnormalities.
It costs $300.

Since the Vitamin Diagnostics panel has become available, I have been recommending it for glutathione measurement, because it measures both reduced and oxidized glutathione in the blood plasma, which better reflects what is going on in tissue cells.

This is all a bit garbled.. but I'm in a hurry.

I myself have chronic fatigue. I have been sick over 10 years. I have been doing the treatment recommended by Rich Van Konynenburg for 2 years. I am 35 percent improved! so I am trying to pass the word on.

Rich has been overseeing a small "trial" of his treatment in 30 women in Missouri .

He is due to present the results of this "trial" -- it's not double blinded, or placebo controlled.. not enough money... at the IACFS meeting in Reno, Nevada this month.

I'm not selling anything.. and this is not teh best of introductions to this theory, which you may already be familiar with .. I don't know.

Anyhow, there are lots of resources if you deem this worht following up.

I have posted some. Also there is a CFS_yasko yahoo group for people following this protocol.

Wishing you the best. Nobody should spend their lives sick & I think this treatment can reverse CFS to some extent.

It certainly is in my case.


Ultram said...

I know it's kind of late, seeing as your last post was back in January, but I'd like to extend my condolences on your father's passing. And I'd like to say congratulations on the clean brain scan. I'm just wondering when you'd start posting again. I looked back on your previous posts and found them rather helpful.

Hope to see you writing again.

Anonymous said...


I like reading about other's telling about how they live with CFS. I am a 16 years old girl from Norway and have it myself.
Just wanted to say thank you.

Regards from Thea Erine (

ZenMaster said...

Hello All!

Thank you for your posts! I am still here, even if I have not posted in a long time. This spring and summer have been particularly difficult with extreme tiredness all the time, but that's how it is in periods with CSF.


Hege - said...


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I love your blog and are following it with RSS.
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Hope to see you!