Prev-IndexNL-Next

Nederlog


 
May 25, 2013
me+ME: About ME, AIHA, Henry Miller and internet
Sections
Introduction   
1.  M.E. and AIHA
2Do I have AIHA?
3.  A really good Henry Miller site
4.  NO, it is NOT true that "things on the internet do NOT
      disappear"

About ME/CFS


Introduction:

I believe I am still somewhat paying back my walk of over 4 weeks ago, but it may be and very probably is improving some.

Indeed, two of the reasons to keep saying this are: (1) it is true in that I have been better than I am now, and considerably so, while it explains my writing (or at least: the difficulties with which I do these, which indeed will not be as obvious to others as they are to me) and (2) it is for 35 years the most typical feature of my disease - having walked for about an hour, which is too much, but also could not be avoided, after that it takes me over a month to get rid of most of the consequences of that.

Anyway, today there is not very much, and indeed my readers did get rather a lot this month, indeed in spite of the fact that I was mostly somewhat sub-standard.

1. M.E. and
AIHA

I mentioned some time ago this month - I think - that I had made a discovery about M.E., which indeed is true, but I since found that others had been there before:

There is a great likeness between Auto-Immune Hemolytic Anemia and M.E., and that especially in the senses that (1) a common precursor is, as my ex and I have, Pfeiffer's disease (aka kissiing disease, infectious mononucleosis, glandular fever,  and other names) and (2) its chronicity, variability, and usual "idiopathy", where the second name is in fact medicalese for "cause unknown".

I did put in Wikipedia links, so that anyone interested can follow it. Also, I should say that (1) the chances for AIHA are not really better than for M.E. and (2) there also are different versions of it, notably a "cold" and a "warm" version, while (3) especially the cold one -
cold agglutin diease - is both similar to M.E. and may respond to rituximab, that also is supposed to help against M.E.

The reason I got there - in the end - was that I have sometimes difficulty with breathing, next to general fatigue, and have at least two auto-immune diseases, namely Dupuytren's Contracture and keratoconjunctivitis sicca, the latter probably due to Sjoegren's Syndrome.

The reason I thought this is a discovery (it is one, albeit a minor one and one that others made before me) is that I was totally unaware of the connection, in spite of having read quite a lot about and around M.E. by this.

2. Do I have AIHA?

Do I have it? I do not know, and the older I get the less I am interested or concerned with doctors.

The last is not true for serious illnesses and for specific reasonably well-known disorders, for then you must be pretty crazy not to be interested in seeing a good doctor, but it is true for any of the diseases I mentioned, of which I do have two:

ALL are "idopathic"; to have an investigation means a lot of work for me, ALL of which never gave me any useful result (which is either a definite diagnosis or a definite treatment); and also there are no good therapies, other than perhaps
rituximab, while (i) that is very expensive, hence hardly likely for me and (ii) I do not have complaints that are serious enough to be willing to try it, also if it were not expensive.

So... for the moment I identified the connection, and only note that cold agglutin diease is the most likely AIHA-variant in my case; that I got to it "through the blood" i.e. through my - 35 year old - guess that my red blood corpuscles may be involved; and finally that, while I do have a good G.P. now, I have become quite  weary of medical doctors, who all generally "have to" deal with your problems in 5 to 10 minutes, and generally do not know anything about you or your condition.

In fact, this is now the standardized medical practice, also for G.P.'s, that may be - mostly - OK for ordinary illnesses, but it is totally unfit for rare and for (partially) known, and especially chronic diseases, and indeed also not for psychiatric diseases: Any doctor who believes he or she can diagnose or indeed understand what is involved in these diseases in the 5 or 10 or 15 minutes of talk in a medical office does not know what the world is like. [1]

3. A really good Henry Miller site.

I wrote earlier this month two items on Henry Miller, and indeed I like him. I think at the time I mentioned the following site
which still is the best site to start on him, because it is well-designed, not large, while it does have a lot of information.

But now I found another site, which is much larger, and is well-written, also with many illustrations (that is one of the weaknesses of my site: Few illustrations), and with many things - most things -  I did not know:
I am spending rather a lot of time on it, and indeed downloaded all of its archives, because I am afraid it may all disappear. The reason for that requires its own entry: 

4. NO, it is NOT true "things on the internet do NOT disappear"

The average man - it seems: I am not one - seems to know very many things, including that "once it is on the internet, it is there forever". At least, that is what I have heard and read many times.

In  fact, most things from before the year 2000 that were then on the internet either have totally disappeared, or have much changed, and not necessarily for the better.

The reason is very simple:

Things are on the internet as long as someone takes care to keep it there - if a man dies or a provider dies or closes the service (GeoCities is an example, that hit many: check the link in case you doubt this), in general his site disappears, and so does everything that was there.

I should have (and indeed may have) mentioned this before, but the only reason things keep being accessible is that someone pays for them to keep them accessible.

Also, quite unlike as is the case with books: If something disappears from the internet, it generally is totally gone.

I see both very well illustrated with the Henry Miller blog that I mentioned, which was carefully built by a quite sensible lover of Miller's work over a period of about eight years, who mostly relied on what he could find on the internet - but many of the linked materials of 2005, at least, and probably also much of the later material, has totally disappeared.

Is this a shortcoming? Well... yes and no.

No, in at least two senses: People do deserve privacy, indeed much more than they have at present, at least often and in principle, while also much that was on the internet and disappeared was not of any real interest to almost anybody.

Yes, also in at least two senses: It would have been possible to retain everything, for computer memory has become very cheap, and there has disappeared rather a lot of material I - for one example, of many - would have liked to see if only I still could.

In fact, since I have downloaded all of the archives of the Henry Miller site, and am trying to look through them systematically (which I do not know I will finish, though I well may: it all depends - and yes, I am a fast reader) between 50% and 75% of the links that worked in 2005 do not work anymore.

This is a great pity. In this case, the site still is quite interesting, but it does miss some essential connections.

---------------------------------
Notes

[1] It follows that most doctors do not really know what the world is like, and indeed that is what I believe: NO doctor has EVER tried to understand what my life is like, and NO doctor has EVER visited my house. Now I agree this also was not really necessary the first 10 years of my disease, when I had mostly - but not invariably - relatively mild M.E. but since my situation got worse, from 1988 onwards, and since I lost the really good G.P. I had, from 1998 onwards, I have generally been medically judged by people who really did not know who they were judging, nor could know what life I am forced to lead, day in, day out, year in, year out, decade in, decade out.

And in case you missed that: I think this is true of almost everyone, at least in the West, who has a chronic disease. The brief excuse is: "There is no money for it". I do not think that is true, but it is true that G.P.s in fact have lost most of their independence.

About ME/CFS (that I prefer to call M.E.: The "/CFS" is added to facilitate search machines) which is a disease I have since 1.1.1979:
1. Anthony Komaroff

Ten discoveries about the biology of CFS(pdf)

2. Malcolm Hooper THE MENTAL HEALTH MOVEMENT:  
PERSECUTION OF PATIENTS?
3. Hillary Johnson

The Why  (currently not available)

4. Consensus (many M.D.s) Canadian Consensus Government Report on ME (pdf - version 2003)
5. Consensus (many M.D.s) Canadian Consensus Government Report on ME (pdf - version 2011)
6. Eleanor Stein

Clinical Guidelines for Psychiatrists (pdf)

7. William Clifford The Ethics of Belief
8. Malcolm Hooper Magical Medicine (pdf)
9.
Maarten Maartensz
Resources about ME/CFS
(more resources, by many)


       home - index - summaries - mail