2 februari 2010


Just a little more about me & M.E.            


I am still recuperating from doing too much on Saturday - when I forced myself to finish a long article about ME - so I am taking a little care not to do too much.

So for the moment just this: I am around and about even if not present here, and if I am not present here it is because I have to take care ("pace myself") a little to prevent (more of) a relapse - and also I may be present on the Phoenix Forums (*), where I write mostly about ME, since the forums are about it.

And that leads me to just a little more about ME, also from the Forums:

This is a fine recent lecture by Daniel S. Bell MD, who knows a lot about ME and treated many patients with it. In this lecture - in two parts: the above links to the first part - he discusses the relation between the XMRV-virus and ME, and does so quite clearly, with humour, and without overly many pieces of medicalese terminology.

Dr. Bell is quite optimistic about the possibility that the XMRV-virus is the cause of ME, but not certain (as is quite rational), and perhaps a little more than I am, although I also am far from certain and besides am not a medical doctor.

However XMRV may be related to ME - and there are quite a few distinct logical possibilies here, none of which have been excluded or clarified - it does seem to me and to dr. Bell that it is an important clue about ME.

The main reason for this is that if - for example - XMRV is a socalled passenger for ME rather than its cause, then still the fact (as it seems to be, on present evidence) that persons diagnosed with ME have far higher chance of being infected by this virus does give many biochemical pointers to what may be the real cause, if it is not the XMRV-virus.

Finally, as to why - I think that - dr. Bell's lecture is very interesting:

While I am quite certain that I know more about ME - meanwhile, after having had it, or at least its diagnostic symptoms, for more than 32 years - than the great majority of the medical doctors I have seen about it, and although I am not ignorant about medicine nor about medical terminology and the relevant science, I definitely can not place ME in the context of medicine and scientific research as a good medical doctor can do: I just do not have the requisite expertise.

Similarly, while I know far more about having ME (in my own case and that of my ex) than I would have liked to know, I have not personally met with many persons who do have ME. (**)

A man like dr. Bell does have the medical knowledge and the experience with many patients with ME that I lack, and these are two reasons why his lecture is very interesting.

And dr. Bell is a medical specialist as regards ME, for which reason it is very interesting to have the opinion of such a man on the relation between the recently discovered XMRV-virus and ME.

P.S. For Dutchies: If I find the energy I will later today write some in Dutch, seeing that again some universities in Holland have been occupied by students. (But this is no promise.)

P.P.S. Dit stukje van 2 februari dateert van die dag, maar het lukte me niet het voor vandaag op te laden.


(*) The Phoenix Forums are based in the USA and - as far as I can see - one of the best things happening with regards to ME, because there are many patients with ME posting on it, with lots of information and ideas.

And it is a very good thing, both for persons with ME and for scientists taking a serious interest in it, because - at long last - (1) here there are quite a number of highly educated and outspoken patients with ME of whom many know a lot about the disease, about having it, and about treatments for various symptoms and (2) having such a forum may help to organize patients' actions e.g. as regards what the media write about it and as regards research funding for ME and the legal rights of patients with ME.

In brief... if you have ME or want to know about ME, at present the best way to get lots of information about the disease itself and about what it may be like to have it and what manner of persons have it, is to go to the Phoenix Forums.

(**) This is one reason why the Phoenix Forums are very interesting for one like me with ME:

For the first time in 32 years I can daily read the ideas and experiences of many people with the disease I have been diagnosed with, who are quite informed about it and many of whom are highly educated. (I have read some other forums concerned with ME, but not one with as many highly educated persons with the disease, nor one with patients from so many countries.)

And - among many other things that are quite striking - it is interesting to find how similar the experiences of so many are, from allover the globe also, both as regards what it means to one if one has the disease, and as regards how other persons, health bureaucrats, insurance companies, medical doctors etc. react to patients having it.

Maarten Maartensz

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