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Nederlog

 

June 30, 2010

 

ME + me :  XMRV blues + On Cant

 

I am still not well at all etc. as before - though it's a bit cooler today - and so I keep it brief, with just two subjects, one a favourite quotation, that should be helpful to many, as it is relevant in very many circumstances.

1. XMRV blues
2. On Cant

1. XMRV blues

I have been reporting the discovery of, problems around, and confirmation of XMRV in Nederlog e.g. here

The links give the reason to speak of "blues", becaus this too seems to have been developing after the first report in Science, into something like a tragi-comedy - with some exceptions, such as with many  patients with ME, who have great faith in in the Science study and the scientists who did and reported the study, indeed for good reasons also.

Meanwhile, since I am not a biochemist, I have no really sound opinion on the ins and outs of XMRV, and since I know a lot of methodology, philosophy of science and probability, e.g. sufficient to know that the McClure-Wessely report linked above was flimflam, my own position is this (to quote myself from an e-mail of 5 days ago):

It's not yet clear whether [XMRV] is involved in some causal role or as a passenger. Personally, I don't mind not knowing (...) I simply wait and see and do not get nervous at all, except that I am glad the Science study stands, because I think (i) XMRV is interesting for medical science anyway and (ii) whatever the connection with ME, the study of XMRV will shed some new light on it when properly investigated while (iii) if indeed XMRV is causal for (a subgroup of) patients with ME, or indeed a causal factor, there is hope existing HIV-medicines and techniques may help fast.

And this still seems the rational position on the science of it - unless you happen to know more about  XMRV and biochemistry than I do, as undoubtedly is quite possible.

Meanwhile, the rational position on politicking around XMRV is difficult to state, as rather strange things have been happening, to which I first provide some links, followed by a few comments:

The first is by Amy Dockser Markus, who also wrote Further Evidence of an XMRV-Chronic Fatigue Syndrome Connection? that I consider six days ago; the second is by Mindy Kitei, who I wrote about i.a. here: ME: Blood Feud and whose site gives a good if journalistically written overview of much about and around ME.

There is considerably more on the internet, that I will not list, and some concern, nervousness and anger with patients with ME, who tend to believe this happened before, both with the De Freitas study that concerned ME and may have discovered a retrovirus but was squelched, and in the beginning with the studies about HIV and Aids.

An additional concern, and the ostensible reason - that is: the publicly given reason - that both papers are on hold, after being peer reviewed and accepted for publication, is that they are contradictory, the CDC study being negative about XMRV, the FDA/NIH being positive is one concern. As someone knowledgeable of science and XMRV put it on a patients forum:

    Quote:
holding BOTH studies tells me they are really perplexed, so now they want to review and make sure both studies represent good science, before releasing them.

WRONG! The studies have already been peer-reviewed. Unless government officials want to play Gods of peer-review. Are they going to start judging the peer-reviewers now???!!! Un____ believable!

Indeed, the further concern is that both organizations are US governmental organizations, while the CDC has played a very bad role in regards of bio-medical research into ME/CFS, which they have tried to block, pooh-pooh, deny or disregard for decades. Here is Mindy Kitei's justified remark about the CDC-study:

If the CDC had found the retrovirus, it would have negated its 20-year affair with CFS as a psychological problem.

On the other hand, the point of view of the people at FDA/NIH seems to be along the lines that (1) XMRV exists (2) it is at least mildly contagious (3) it may be transmitted by blood transfusion - and so the US government has a clear and important health concern.

In this context, here is part of Dr. Yes's view today expressed on Phoenix Rising - and Dr. Yes is a very sensible man:

It seems more likely to me that there is a political struggle going on between the CDC and everyone else. The XMRV Taskforce is an interagency effort; I never understood why the CDC sought to do its own study... surely the higher-ups knew that such a separation of efforts could lead to different findings. But there is no good scientific reason to suspend the publication of conflicting results, and it is unethical to interfere with the scientific process for political convenience when so many sick people depend on the results of a pure scientific process. Either there has been a great deal of incompetency/ lack of oversight until this late stage by various officials, or there is a power struggle going on.

The danger with allowing government agencies to work this out behind closed doors is that the CDC or their higher-ups could pressure the other group into editing (or, far less likely, even pulling) the positive study. To believe that government scientists are immune to pressure by the government is naive. It would be a mistake for us to relax and trust the government to do the right thing when experience tells us they are more likely to do the opposite.

From the same place another quote, indeed a quoted quote, namely from the late best-seller writer and M.D. Michael Crichton:

"Let's be clear: the work of science has nothing whatever to do with consensus. Consensus is the business of politics. Science, on the contrary, requires only one investigator who happens to be right, which means that he or she has results that are verifiable by reference to the real world.

"In science consensus is irrelevant. What is relevant is reproducible results. The greatest scientists in history are great precisely because they broke with the consensus." (*)

It'll be curious to see what happens, and my own guess is that an internal dispute is going on between various US governmental institutions.

My own take is as I said: The US government has a clear and important health concern, and so it certainly - whatever today's situation, and the curious publication stop on both papers - is more likely that the truth about XMRV and its relation to various diseases and its dangers for the general public will be found, and indeed quite soon, given e.g. justified worries about blood transfusions if these have a good chance of containing XMRV with attended dangerous consequences.

2. On Cant

Here is a favourite quotation of mine, by a true conversational genius the like of which in this talking age does not exist, from Christopher Hibbert's excellent "The Personal History of Samuel Johnson" (**) - and the link to "cant" is to my entry in my Philosophical Dictionary, and the others to the Wikipedia:

Johnson found it equally exasperating when people talked cant about their being distressed concerning public affairs. When Boswell mentioned his desire to enter parliament, but said he would be vexed if things went wrong, this conversation ensued, with the real meat at the end:

JOHNSON  'That's cant, Sir. It would not vex you more in the house than in the gallery: public affairs vex no man.'
BOSWELL  'Have not they vexed yourself a little, Sir? Have you not been vexed by all the turbulence of this reign,. and by that absurd vote to the House of Commons, "That the influence of the Crown has increased, is increasing, and ought to be diminished?" ' (***)
JOHNSON  'Sir, I never slept an hour less, nor eat an ounce less meat. I would have knocked the factious dogs on the head, to be sure; but I was not vexed.
BOSWELL  I declare, Sir, upon my honour, I did imagine I was vexed, and took a pride in it; but it was, perhaps, cant; for I own I neither eat less, not slept less.
JOHNSON  'My dear friend, clear your mind of cant. You may talk as other people do: you may say to a man, "Sir, I am your most humble servant." You are not his most humble servant. You may say, "These are bad times; it is a melancholy thing to be reserved to such times." You don't mind the times. You tell a man, "I am sorry you had such bad weather on the last day of your journey, and were so much wet." You don't care sixpence whether he is wet or dry. You may talk in this manner; it is a mode of talking in Society; but don't think foolishly.

In fact, Dr. Johnson could get vexed about the times in which he lived, especially about the reprehensible Whigs, but then he gave a clear practical criterion for deciding whether one is really vexed or not, or merely deluded oneself with common opinions and popular emotions. The crux of the matter is, with stresses and all:

'My dear friend, clear your mind of cant. You may talk as other people do: you may say to a man, "Sir, I am your most humble servant." (...) You may talk in this manner; it is a mode of talking in Society; but don't think foolishly.


P.S. Quite a lot more could be said about the politicking surrounding ME/CFS since decades, but in view of the warm weather, my bad health, and the abovesketched position (in brief: it is likely there will be clarity soon), this is not the time and the place to do so. And see M.E. / Chronic Fatigue Syndrome (video) for a fair summary of the situation and the disease dating from 2007.

P.P.S. It may be I have to stop Nederlog for a while. The reason is that I am physically not well at all, and it seems a heath-wave is coming, which is the type of weather I can't handle well. I don't know yet, but if there is no Nederlog, now you know the reason.


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 (many 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. SleepyDust (patient) M.E. / Chronic Fatigue Syndrome (video)
10. Laurel (patient) Laurel's October 2009 CFS/CFSAC Testimony (video)

Short descriptions:

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:
   "it is wrong always, everywhere, and for anyone, to believe anything upon
     insufficient evidence
".
7. A space- and computer-scientist takes a look at psychology.
8. Malcolm Hooper puts things together status 2010.
9. SleepyDust explains what life with ME/CFS is like for patients
10. Laurel explains what life with severe ME/CFS is like for patients

"Ah me! alas, pain, pain ever, forever!

No change, no pause, no hope! Yet I endure.
I ask the Earth, have not the mountains felt?
I ask yon Heaven, the all-beholding Sun,
Has it not seen? The Sea, in storm or calm,
Heaven's ever-changing Shadow, spread below,
Have its deaf waves not heard my agony?
Ah me! alas, pain, pain ever, forever!
"
     - (Shelley, "Prometheus Unbound") 

    "It was from this time that I developed my way of judging the Chinese by dividing them into two kinds: one humane and one not. "
     - (Jung Chang)


See also: ME -Documentation and ME - Resources


P.P.S. ME - Resources needs is a Work In Progress that hasn't progressed today.


(*) The Crichton quote continues

"There is no such thing as consensus science. If it's consensus, it isn't science. If it's science, it isn't consensus. Period."

But that's just not so, but grandstanding journalistic cant: There is a lot of received consensus science, and you get it in scientific textbooks in universities. This is not a proof it is absolutely incontestably and eternally true and valid, but it is - in the real sciences, such as physics, (bio-)chemistry and also mathematics - proof enough that these results have been tested, and found to hold up, and to work in practice.

A good example is the existence of atoms, first hypothetically posited around 600 B.C. by Democritos and Leucippos, and finally having become part of accepted physics and chemistry since Mendelev's periodic tables got confirmed, and in the 20th Century at long last, using nano-technology, something like images of atoms could be made - that meanwhile, contrary to Democritos and Leucippos idea of atoms, had acquired sub-atomic particles.

After due investigation, some scientifically established facts simply are vastly more probable than their denials, and to suggest otherwise is ... disingenuous.

Incidentally, there is a purported Einstein-quote, probably Crichton's inspiration, that is much better:

"If it's empirical, it isn't certain; if it's certain, it isn't empirical.

For more, see item 2 above.

(**) Christopher Hibbert: "The Personal History of Samuel Johnson", 1st pub Longmans, 1971, Penguin Book edition 1984, ISBN 0 14 00.6648 9.

(***) Johnson and Boswell were both Tories, in favour of the King rather than the Parliament.

Maarten Maartensz

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