Nederlog

 

 March 23, 2011

 

me+ME: Dr. Harvey Alter clarifies XMRV



I wrote repeatedly about dr. Alter before, as I was and am very glad that a man of his proven stature and intellect has investigated XMRV and the connection between XMRV and ME/CFS:

There is more - consult the Nederlog index for 2010, under "Alter" or "XMRV" - and in a moment I will quote some excellent recent prose by dr. Alter, but first I want to say something on yesterday's Nederlog Another good article on ME/CFS in the Wall Street Journal, in which I defended Amy Dockser Marcus against aspersions by some patients with ME, mostly on a forum from which I have been excluded because I am quite honest, very intelligent, and not willing to silently put up with bullshit, also not if it is by some anonymous nincompoop or busybody who claims to have ME. (See yesterday's Nederlog and the links given there.)

First, I have been taken to task - I suppose: in the friendliest manner - by an English reader who wanted to know why I called Amy Dockser Marcus "Mrs. Marcus", and remarked that  currently writing "Ms" (..) "is the custom in the US and UK when referring to women writing in the media", apart from some special context when marital status matters (or so it seems).

Well... I am Dutch, alas, and I didn't know about this new habit of calling women "Ms" even if they are married, though I do know about the - to me - sickening US PC habit of exchanging all occurences of "he" by "she", which strikes me as an inane, totalitarian and hypocritical combination of word magic and wishful thinking: As if the facts could be put right by "rectifying" the words used for them. (*)

Anyway, my own usage came about thus: When confronted with the string of characters "Amy Dockser Marcus" I am confused wether she is married to a Mr Dockser or has it as a middle name, in which case she still might be married, to a Mr Marcus - while the Dutch PC locution is Mrs. rather than Ms., since here in Holland it is the latter terminology that is considered offensive and condescending, rather than the former, at least in circles of PC feminists and of tiny minds eternally pre-occupied with showing the proper PC kinds of verbal respect.

Then, as it also happens, I was decades ago similarly confused, namely by the string "Ruth Barcan Marcus". The woman thus called did quite interesting work in logic and tends, or at least tended for several decades, to be known as "Mrs. Marcus" in logic-land.

And thus it came about, by analogy I suppose, and possibly because I have had repeated dealings with Dutch PC feminists who offended me by insisting I offended them by calling women I know to be not married "Ms.", as is indeed quite correct in - not PC-"rectified" - Dutch grammar, but very offensive to academically educated Dutch women with an IQ of 115 or so.

In brief: I meant well and did not intend to give any offense, but do not know the ins and outs of whatever PC is currently the desirable PC in the US, and indeed do not like PC (*).

Second, a reason to praise Amy Dockser Marcus and David Tuller is that, at least for this person with ME for the thirty-third year, it is somewhat of a pleasing surprise to find that there now are two journalists, who write for two of the best known journals in the world, the Wall Street Journal and the New York Times, who repeatedly wrote quite sensible, quite informed well written articles on ME/CFS.

This is quite important for me and for ME (as I see these subjects), since in my own estimate the last two decades much time and much research money has been lost and misspent because of the propaganda that psychiatric pseudoscientists succeeded in convincing naive journalists to publish, due to the pretensions of these pseudoscientists that they are world specialists on "CFS", whereas in fact the "science" they published about it is pseudoscience, and they themselves are mere psychiatrists, who only have such standing as they have in Great Britain, and that for political and bureaucratic rather than scientific reasons, and not because any of any contribution they made to real science, or because of the qualities of their minds or morals.

For that is another pleasing surprise of the previous year: While patients with ME/CFS since decades know they have been lied about and misrepresented systematically by pseudo-scientists of the moral and intellectual status of professor Simon Wessely (<- Wikipedia, probably at least partially composed by himself), there now is professor Harvey Alter (<- Wikipedia) who is a real virologist, and a real medical research scientist, and also a medical doctor of vastly greater deserved status than Wessely has or can reach, in real science, at least, and who contradicts Wessely's stances in many ways, albeit without mentioning him, and by implication.

So the situation as I see it, at present, is that some of the best journals and some of the best scientists are currently supporting the patients with ME/CFS by supporting that real science is being done, and gets done, so as to clarify what really are the biomedical causes of ME/CFS and what really are the dangers of XMRV.

Here then is a some by professor Harvey Alter (<- Wikipedia), from a recent video mentioned on a thread on Phoenix Rising:

The above is the link to the thread on PR-F (= Phoenix Rising Forums, that from tomorrow on will have a new address and web-name: http://phoenixrising.me/forums/content.php); if you want to go to the video directly, that the NIH kindly made available, here is its link - incidentally, with a title that reminds me of professor Malcolm Hooper's excellent Magical Medicine (by which professor Hooper meant that - in my words - pseudoscientists have succeeded in magicking away the real and serious disease that is ME by propaganda and renaming it to "CFS"):

One should keep in mind, though, that this is 2 hours worth of video, and not all of it is easy to follow. Happily, someone took the trouble on PR-F to type out some of the most interesting bits for wider consumption, and here is part of it, remarkably similar also to my own position in me+ME: Some speculations around ME and XMRV - part I, albeit that I did not know then of dr. Alter's words that follow.

I copy this from the above-mentioned thread on PR-F, but correct some typos (such as "i" for "I"). The squarely bracketed numbers are the times in the video where the passages quoted are to be found - and please note this text is from February 22, 2011, and so merely a month old:


Harvey Alter:

[103.04]

"If the virus is indeed in the patient, I suggest about a present antibody, and I think it very important that the Whittemore Peterson group has consistently found antibody in the patients, and has found virus that they can culture in these patients; so in their data, they've done the whole gamut; we've had more trouble finding the antibody in our patients; we're working with the NCI group; but despite the fact that the Whittemore Peterson group has been able to culture it and find antibody, people still don't believe that patients were infected; so it's just a difficult field.

[103.50]

But that's the issue that we have to address, and if the patient is infected, the next issue is, is it a primary infection that causes the disease, or is it a secondary infection, due to, whatever, amino deficiency, [indiscernible] infection, or something else.

So how are you going to resolve this?

Well, the heart and lung institute and the NIAED are conducting separate studies now to assess whether these findings are reproducible and are they specific; and sensitivity is in there as well. But mostly it is to see, are they reproducible and are they specific for this disease.

So when we suggested exchanging samples between the labs that have divergent findings; we tried to do that, it wasn't sufficient, it wasn't sufficient samples, the answers were not as clear as one would hope.

But I think the most important thing is what is being done now, particularly in a study that the NIAED is sponsoring.

Dr Ian Lipkin at Columbia is heading up this study, and the idea is to take classic cases of Chronic Fatigue Syndrome; people that meet the Canadian Criteria, that had an acute onset of disease and then went into the debilitating long term effects; cases that everybody would agree are Chronic Fatigue, to the best that you can agree on that.

To take those patients, and they are from different places around the country; so they are geographically diverse; take large volumes of their samples; send them to Dr Lipkin's lab, where they will be separated, and come overnight, and separated into various components, mostly plasma and whole blood, but maybe some PBMC's, and then coded, and the same sample will be coded in triplicate.

And then panels will be developed, and sent to the labs - who have claimed to find the virus, and those that have claimed not to have found the virus; and those labs will use their own assays, and then see how they break the code. And the results will be published, so whatever comes out, positive or negative, the results will be published, and the codes will be broken at the coordinating centre.

[106.34]

So what are the possible outcomes of that?

Well, if this cannot be found in these pedigree patients, in the labs who previously reported finding it, then i think that the original findings will have to be considered unconfirmed and contamination will be suspected, but all these samples will be tested for mouse DNA by the best techniques; both the techniques that Dr Lo talked about.

But if Dr Lo - he is under a lot of pressure - if he doesn't do well on the panels, then we have to say something was awry originally. However, if he does do well, if the panels show that he can consistently detect coded samples from CFS patients, and not from controls, or different ratios on patient controls, then the published findings will have been confirmed.

And that confirmation will not establish causality, it will just confirm the association, and rule out the contamination issue.

[107.35]

And the causality is going to be difficult, it's always difficult, if you don't have an animal model, it's always difficult to prove causality; it may have to be proved by controlled clinical trials using antiretroviral agents.

And Dr Mikovits has already shown that known antiretroviral agents, the whole XMRV agent is sensitive to two, but not all of the HIV antiretroviral agents.

[108.02]

So that's where it's going; this should resolve; this data should be available in the next six months and I think it's the best way to go about it. Up until that time, you can believe what you believe."


Indeed - and this is the right way to find out how things really are, and I am very glad this is done, whatever the outcome will be.

And this leads me to a last clarifying remark, also related to what I wrote yesterday - a Nederlog that was downloaded a lot - and earlier, e.g. in On a new misnamed HGRV-Association:

There are some patients who are thoroughly convinced that the cause of ME/CFS is XMRV, or as they now seem to want to call it, HGRV.

They may well be right, and they certainly are right in insisting that the WPI and also dr. Alter, dr. Lo and others are doing important work honestly and rationally and deserve a lot of support.

Indeed, this is so regardless whether XMRV or HGRV is the or a cause of ME/CFS, simply because it is in everybody's interests to establish as soon as possible with some rational certainty or high probability (1) what dangers are involved with XMRV and (2) how its presence or absence in blood or tissue can be established.

My own position about XMRV (or HGRV) as the or a cause for ME/CFS is - it turns out from the above quotation - quite similar to dr. Alter's: (a) it very well may be a or the cause, or a contributing factor, but it is too early to say so with any moral certainty, and (b) it urgently requires clarification by real biomedical research into the real facts, rather than by propaganda manufactured by pseudoscientists with a personal interest in its not being found to be the cause of ME/CFS, and (c) - possibly speaking more for myself - while facts are facts, I am myself not very happy with the thought that millions of people may carry a dangerous human retrovirus, even if that would explain the disease I have for over 32 years now: I'd rather have it were something less dangerous, and easier to put right, but indeed I am aware that's wishful thinking.

Therefore, I prefer not to commit myself on XMRV as the cause of ME/CFS, but I strongly support that it is properly investigated, by real biomedical scientists, as is happening now, in the end thanks to the efforts made in and by the Whittemore Peterson Institute.


(*) I am quite aware that "rectifying the language" may be proposed with good intentions, as it was indeed by Confucius and by analytical philosophers - but then what these proposed was a factually more correct language, much rather than a language to conforms to a political or religious ideology.

And that's what I had in mind, and the fundamental reference is here

The site linked to in the last link is Russian, and contains most of Orwell's work in good html editions, and also has a lot of information about him.

Here is a small part from the linked essay, to whet your appetites:

Now that I have made this catalogue of swindles and perversions, let me give another example of the kind of writing that they lead to. This time it must of its nature be an imaginary one. I am going to translate a passage of good English into modern English of the worst sort. Here is a well-known verse from Ecclesiastes:

I returned and saw under the sun, that the race is not to the swift, nor the battle to the strong, neither yet bread to the wise, nor yet riches to men of understanding, nor yet favour to men of skill; but time and chance happeneth to them all.

Here it is in modern English:

Objective considerations of contemporary phenomena compel the conclusion that success or failure in competitive activities exhibits no tendency to be commensurate with innate capacity, but that a considerable element of the unpredictable must invariably be taken into account.

This is a parody, but not a very gross one.

(...)

As I have tried to show, modern writing at its worst does not consist in picking out words for the sake of their meaning and inventing images in order to make the meaning clearer. It consists in gumming together long strips of words which have already been set in order by someone else, and making the results presentable by sheer humbug. The attraction of this way of writing is that it is easy.

Also, it sounds just like professors Wessely and White, as you may find by closereading their prose...


P.S. Corrections 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 (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)

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.
 


    "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


Maarten Maartensz (M.A. psy, B.A. phi)

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