Monday, November 08, 2004


Here below is an excerpt from an article in InterAction magazine that sounds promising. The magazine, received today, is published by UK patient charity Action for M.E., of which I am a member.

Although I do not know the meaning of the words "elevated levels of the cytokine interleukin-6", they SOUND to me like they might describe the poisonous "stuff" that flows around my veins like battery acid when I get stressed or over exert. Over exertion in my case means being vertical - even sitting up - for longer than 5 minutes.

Before reading this article, I'd tentatively pinpointed the stress hormone Cortisol as being one of the culprits (along with lactic acid) only because it's clear to me that my condition worsens considerably at the first sign of positive or negative (i.e. happy or unhappy) stress. Something is causing orthostatic intolerance. It's been said this could be caused by "sticky blood" which I find hard to believe because I've had loads of blood tests and as far as I know nothing untoward (except a virus in the initial fortnight of illness) has been found.

I've read of ME/CFS patients who have undergone tilt table tests. I find this particularly interesting because of an unusual sensation I experienced when visiting the dentist a few years ago. I was seated in a super modern dental chair that curved into a gentle "S" shape and the dentist pressed a button to turn the seat into a bed - and just as it was reaching a certain position, I felt a split second of well being, like something was released within my body that actually gave me such a sensation of wellbeing that I wanted to shout "eureka". It was such a fleeting moment but because of the journey getting to the dentist, my brain had slowed up and I did not have the presence of mind or energy to explain to the dentist what had just happened. I recall saying though, when I was leaving - "I love that chair of yours - wish I could take it home with me".

P.S. That dental appointment was in March 2003 and even though I had an adrenaline free injection, it finished me off. After the half hour appointment, I was so pleased to be out and about (I think I'd been almost bedbound for 3 months prior) that a friend and I got carried away browsing for more than an hour in nearby shops. On the way home in the car, we stopped off at a farm shop to buy deli treats. In the farm shop, I felt so ill and confused I hardly knew what I was doing. Could barely see straight, couldn't concentrate and had to ask the shopkeeper to switch off the music playing on the radio. It took every fibre of my being to stand up - but I didn't have the presence of mind to sit down either. It's a most horrible experience that is difficult to describe. I remember feeling very, very cold and yet hot at the same time. Feverish. On the journey home, I found great difficulty in sitting up in the passenger seat. It felt like my skeleton and innards were screaming out red alarm bells and turning to mush inside my body. My body felt it was being held up by a structure that was collapsing internally. Since that date, it's turned out that I've lost my mobility and have not been outdoors beyond my front gate ever since. I'm still not able to be vertical for longer than ten minutes without it affecting my faculties (but not my intellect). Five minutes is OK. My daily baseline for anything other than laying on the couch with the laptop is fifteen minutes. I can do something once - ie fetch the mail down several steps - go back up again. But I cannot repeat it without at least a days rest.

Here is a copy of the article "Biomedical research makes headlines":

The British Medical Journal (BMJ) ran a short piece acknowledging a recent study undertaken by research charity MERGE. Stating that:

"Evidence is emerging that people with CFS may have a detectable immunological abnormality", the article quoted the study's finding that a greater number of white blood cells die early in CFS compared to healthy controls. Even Dr Hilary Jones in the News of the World picked up on the discovery, explaining that this problem can weaken the immune system and cause symptoms of chronic fatigue.

Another piece of biomedical research covered extensively by newspapers has suggested that elevated levels of the cytokine interleukin-6 could be one cause of CFS. The study, carried out on athletes, showed that fatigue levels , leg pain, mood and performance were worse after they were given a dose of this cytokine (a chemical produced by the body during infection).

Dr Robson-Ansley wrote in GP magazine that: "Chronic stress seems to change receptor expression, making people more sensitive to interleukin-6." In The Times, she went further: "It is hoped that a drug which blocks the IL-6 receptor in the brain, currently in clinical trials, could help relieve CFS, which is often difficult to treat." Watch this space!

Finally, The Times and BBC Online covered a study by Viner and Hotopf published in the BMJ this October dispelling myths about who gets ME. In terms of childhood markers, researchers found no link between ME/CFS and psychological problems of mothers, children or adolescents. However the study found a link between previous long-standing medical conditions, sedentary lifestyles and subsequent onset of the illness.


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