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23 oktober 2009

 

Again a little more about ME

 

This continues A little more about ME and me of 18 october last, that was about two Dutch professors, messrs. Van der Meer and Bleijenberg, who for decades now have claimed ME is psychosomatic, and should be treated with Cognitive Behavorial Therapy, which indeed has the great merit of curing lots of financial problems of many Dutch psychologists - and also of contributing to the suicide rate among Dutch patients with ME, for which one should not blame messrs. Van der Meer and Bleijenberg, because they probably are hard pressed to explain what Hippocrates taught, as regards doctors and patients, whereas these gentlemen undoubtedly have contributed very much to the happiness, wellbeing and welfare of many Dutch psychotherapists.

Seriously now, I am still quite pleased by the discovery of the XMRV-virus, a so-called human retrovirus, which is a group of viruses of which just three kinds are known today in humans, the two others linked with HIV, while XMRV is linked to prostate cancer and is also present in patients with ME.

There is more about this in these pages in English in the above mentioned A little more about ME and me and in Dutch in ME: Psychiater Rus vindt het ook, for indeed I think this is a major advance as regards ME, from which I suffer from January 1, 1979 (when I fell ill with mononucleosis a.k.a. Epstein-Barr, and effectively never got better).

And today I have just a link to the

which has the merits of (1) having the scientists who discovered the relation between XMRV and ME in their staff and (2) of being founded by a mother of a patient with ME.

It is not a large site and the pages you probably most want, if you are interested in ME, are these

From the last link I cite three questions and answers. First as to the reason it was found:

Why was XMRV looked for in neuro-immune diseases? 

Patients who have been diagnosed with ME/CFS have been shown to have a unique immune deficiency in a part of their antiviral system called the RNase L pathway. This pathway was also deficient in men whose cancer samples were first used in the discovery of XMRV. In this study, however, Whittemore Peterson Institute researchers have found XMRV in patients without an RNase L pathway deficiency. It is not known if XMRV causes this deficiency or if patients with this deficiency are more susceptible to the virus’ effects or both.

Second, as to the incidence in ME/CFS - apparently with an update (more findings) as appeared in the original article reporting the discovery in Science:

Where did the Whittemore Peterson Institute get the blood samples used for this study?

The blood samples used in this historic study were collected from several different regions within the United States and included both a known ME/CFS population and a control group. Of those diagnosed with ME/CFS, over 95 percent have recently been found to have antibodies to XMRV in their blood.

And third, for the special delectation of messrs. Van der Meer and Bleijenberg and at least 40 other incompetent Dutch medical doctors I have seen over the past 32 diseased years, with my bold red stress added

Does this latest information prove once and for all that ME/CFS is not a psychological or psychosomatic illness as described by those who don’t understand the disease? 

Absolutely! Actually, there are thousands of research articles showing the very real biological problems that ME/CFS patient’s experience such as low NK cell count and function, MRI and SPEC scan changes, and repeated chronic infections, to mention just a few. Only the most stubborn and misinformed individuals refuse to believe that this disease is real and serious. The process of placing poorly understood illnesses into a psychological category is very similar to what happened in the early days of MS and epilepsy before the advent of technologies which proved the illnesses were “real.” Unfortunately, many in the scientific and medical fields have not learned from their past mistakes.

Next, in case you want to know more about Whittemore Peterson, XMRV and ME, here is a fine site I just discovered, by a patient with ME for decades:

This has a lot of information about ME/CFS including this section

What I saw so far from this site was well done, interesting and helpful, and if you have ME/CFS you should also digest this page there

This seems to me to have it about right: It is an important breakthrough, but there probably is still much to do and find out.


P.S. For the medically, scientifically and biochemically inclined (though fit to be read by non-scientists), here is background information about retroviruses in general, from the year 2008

Note my link gives title of a part of the text that is about XMRV. You can find it by searching for "XMRV" in the linked text.

Maarten Maartensz

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