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Nederlog
Dec 30, 2011               
      

me+ME: Varia relating to Nederlog and ME/CFS



This is a potpourri of varia-items:

1. On Nederlog 2011 and its analytical index
2. Reception of dr. Lipkin's statement
3. Dr. Deckoff-Jones is waving with an olive branch
4. Few healthy people understand what it is to be an
     invalid

1. On Nederlog 2011 and its analytical index

I had hoped to have an analytical index for Nederlog 2011, compiled from the

- Recent changes (also in the opening pages of my sites)

file for this year, that I did administrate better than the previous years 2010 and 2009, at least, but it seems I lack the energy and the health for the moment to get this all done this year.

I have done half of it, though, so far, and found that I had done more than I thought and also wrote more about philosophy than I thought, both of which are pleasing findings, at least for me.

And I did write a lot, bit by bit, if not as much as in Nederlog 2010: Then I wrote something around 29 MB in all (on my hard disk, including images and duplicate files), and this year 22 MB or so (same qualifications). Then again, I didn't do much else, and spend nearly all the time in my own house, going out only to get food and other necessities of life.

2. Reception of dr. Lipkin's statement

It seems dr. Lipkin's statement, here reproduced with my comments yesterday, has been well received by many, which must also have been one of dr. Lipkin's aims.

One extreme stance is that it's a waste of money, since both the Lombardi et al and the Lo et al papers have been retracted and were flawed.

I don't think so. I agree the retractions are justified and the papers were flawed, but Lipkin's study was funded and planned long before that; there is a small chance it will find a retrovirus; there is a large chance that it will clarify what went wrong with at least the Lombardi et al research; and there is a fair chance it may find something else relevant to ME/CFS with the new NGR-sequencing technique.

Another extreme stance is that if the Lipkin study has the same outcome as regards the Lombardi et al study as the BWG group, that is: doctors Mikovits and Ruscetti are still not able to find XMRV, HGRV, PMRV or whatever, in the agreed set-up of the Lipkin + 11 study, then still there is room for continuing to look for a retroviral explanation for ME/CFS.

I don't think so, realistically speaking. Indeed, dr. Mikovits said she doesn't think so, for she is quoted, by David Tuller in the NY Times, to this effect about the results of the Lipkin + 11 study:

'“That will be the definitive answer,” she said. “If we’re wrong and we can’t reproduce it, then we’ll be wrong, and that’s how science works.”'

Quite so. And those who insist - as the group at peoplewithme seems to do now - that in science all that can be established with certainty are probabilities, so there still is a chance etc. are somewhat right in quite abstract principle, but miss the point: Given several well-tested failures to reproduce, a theory is finished, is over and done with, practically, for funding purposes, and as credible theory - one needs a new theory, new evidence, new research to restart a retroviral explanation for ME/CFS in that case.

Besides, there is the distinct possibility that there may be a sub-group of people who are troubled by a retrovirus and who have been misdiagnosed with ME/CFS. (But to have a chance for funded scientific research into this also new evidence and a more specific and precise hypothesis than that of the Lombardi/ Mikovits group is - then - needed.)

3. Dr. Deckoff-Jones is waving with an olive branch

One of those impressed and pleased by dr. Lipkin's statement is dr. Deckoff-Jones, who is an MD with ME/CFS, who also has a daughter with ME/CFS, and who has a blog:

- An Olive Branch

The blog is somewhat controversial: Dr. Deckoff-Jones takes anti-retro viral medicines and is a personal friend of dr. Mikovits, and was also dismissed from WPI this year, before dr. Mikovits.

I don't agree with her, often, but I do believe she has ME/CFS or something much like it, and so does her daughter, and it is interesting to have a genuine MD report on being ill with ME/CFS, on being misunderstood by fellow MDs, and on experimenting with ARVs, which I have said repeatedly should be permitted to ill medical doctors with ME/CFS: They know what ME/CFS is like; they know the risks; and the experiments, for better or for worse, concern their lives, health, and chances, while their findings may be relevant to others.

This leads me to a related point:

4. Very few healthy people understand what it is to be an invalid

This certainly is the case for me, before I fell ill: I had no adequate idea whatsoever what it is like to be an invalid, year in, year out, and indeed I think this is very hard to grasp for anyone who is lucky enough not to be one.

The reason this is very hard to grasp for healthy people, even though most healthy people do know what it is like to be ill for a while, is that they really have never had experiences like it, and that especially because invalidity strikes across many dimensions of being human, and human society just isn't designed for ill people.

A fair parallel - and the day after tomorrow I start my 34th year of being ill with ME/CFS, that I also spent without any help except regular dole: I fell ill while being a first year student, and so never even got as far as being declared regularly ill - is that of being able to see a colour healthy people cannot see, at all, for the most part: They really have no idea what it is like, and you can't explain it to them either, so that they will really understand: It's much like explaining the taste of mango or pineapple to one who never tasted them.

It is not a matter of unwillingness, probably also not for most medical doctors: it simply is not something you can imagine adequately without having had the experience yourself, and then notably of being seriously ill for a very long time, while being actively discriminated for honestly saying you feel ill and cannot do as healthy others can do, on the ground that you must be lying or insane, because medical doctors can't find a cause (and that medical doctors, by contrast, cannot possibly be lying to you if they say, after a cursory examination and ten minutes of talk, that it must be psychiatric if a medical doctor can't find it, much rather than say "Sorry, I don't know").


 


P.S.
Corrections, if any are necessary, have to be made later. 
 

 

As to ME/CFS (that I prefer to call ME):
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
4.  Consensus of M.D.s Canadian Consensus Government Report on ME (pdf)
5.  Eleanor Stein Clinical Guidelines for Psychiatrists (pdf)
6.  William Clifford The Ethics of Belief
7.  Paul Lutus

Is Psychology a Science?

8.  Malcolm Hooper Magical Medicine (pdf)
9.
 Maarten Maartensz
ME in Amsterdam - surviving in Amsterdam with ME (Dutch)
10.
 Maarten Maartensz Myalgic Encephalomyelitis

Short descriptions of the above:                

1. Ten reasons why ME/CFS is a real disease by a professor of medicine of Harvard.
2. Long essay by a professor emeritus of medical chemistry about maltreatment of ME.
3. Explanation of what's happening around ME by an investigative journalist.
4. Report to Canadian Government on ME, by many medical experts.
5. Advice to psychiatrist by a psychiatrist who understands ME is an organic disease
6. English mathematical genius on one's responsibilities in the matter of one's beliefs:

7. A space- and computer-scientist takes a look at psychology.
8. Malcolm Hooper puts things together status 2010.
9. I tell my story of surviving (so far) in Amsterdam/ with ME.
10. The directory on my site about ME.



See also: ME -Documentation and ME - Resources
The last has many files, all on my site to keep them accessible.
 


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