me+ME: More on the demise of XMRV - 2

Here is some more on the demise of XMRV, mostly in the form of links and for documentary purposes. It continues the Nederlog of four days ago, and mostly consists  of links with some comments including some repeats.

Sections

1. Background
2. The WPI's latest statement
3. Dr. Deckoff-Jones's Blog
4. Other blogs and sites
5. The Norwegian Rituximab news
6. Problems ahead

I will treat a few other things, such as a weakness in Ms. Abbie Smith, namely for the lures of Ms. Ali, and the silence on some hitherto noisy sites and blogs of ME/CFS-advocates/patients and the Norwegian Rituximab finding.

1. Background

This is repeated from the previous Nederlog with the same title, since these items seem to me to outline it best, and also with the least journalism, and by persons who know the relevant science:

- ERV blog: 22 september
- ERV blog: 29 september
- Racaniello Virology Blog: 27 september

The first two are to Abbie Smith's blog: 22 september links to a Science Live Chat with doctors Busch and Levy, the first of the SRWG research, the second an associate of dr. Peterson and a virologist; 29 september links to Abbie's magic trick with the slides from the 2009 Science paper and the Ottawa talk by dr. Mikovits, which today has 1104 comments; and the third is professor Racaniello's virology blog entitled "Trust science not scientists".

My own take of it all is mostly here, from October 8:

- me+ME: Two years of XMRV + recent personal e-mails

Before that, I had only looked two times at the ERV blog, on the principle that I knew from the start that I lack both the retrovirological knowledge and the will and health to read up on it, and strongly inclined to let the real scientists do their own stuff.

Since October 8 I have read a fair amount of Abbie Smith's Blog as regards XMRV and also as regards some other issues, and I like it. She makes sense most of the time, though there are a few things she got wrong, not as regards retrovirology, that I know, about which she knows a lot more than I do, but about the excellencies of the Somali/Dutch Ayaan Hirsi Ali, that have impressed Abbie Smith a lot, I suppose because she does not know much about Ms. Ali and Holland. I do, and wrote it out in Dutch and English:

- ME + me : Sweet relief + Ayaan and me

In fact, what I think about Ms Ali seems to differ little from what Ms Smith thinks about Ms Mikovits, except that my terminology is not quite the same as hers. Here is how I put it on September 2010:

And as I wrote before in Dutch: It is not that Ms. Ali may originally have meant well, for this I even grant to Joseph Stalin and Adolf Hitler, who also started their political careers as young idealists, and it is also not that I regard her as worse than the average Dutch parlementarian, that also are intellectual and moral incompetents by my standards, for I don't.

It is that I regard her as a cheapo - a political careerist who cannot even cite Glenn Beckian mental issues in exoneration: She is smart enough to know that she is crafted together from poses and roles she doesn't have the intellectual and moral talents for, while she is not messed up enough to mean it mostly honestly.

Anyway... that's an aside, and I hope Ms Smith is not falling for the lures of Ms Ali, the lying Somalian careerist who posed falsely as A Resistance Fighter (and the link provides information by a real one, viz. my own father), and who now serves at Dick Cheney's American Enterprise Institute without having written any of the books she promised, posing as an atheist, as if that were a big deal, or requires a bright mind.

Here is my take on Ms Ali in november of 2005, explained in English to someone who lives in the US, and who was similarly impressed as Ms Smith:

- Ayaan Hirsi Ali

2. The WPI's latest statement

There is a statement by Annette Whittemore of the WPI. It is in pdf format, with this link:

- WPI 19 october 2011

This is two pages of prose, that may be criticized for being unclear on a number of points and of having a PR taste, but I think it is fair enough in the circumstances, simply because I never found any reason to believe the WPI meant ill.

What the WPI will be able to do remains to be seen, but I do believe the Whittemore family started it all for admirable reasons and tried their best.

3. Dr. Deckoff-Jones's Blog

Dr. Deckoff-Jones is an MD who has ME/CFS, who also has a daughter with ME/CFS. Dr. Deckoff-Jones has taken anti-retrovirals experimentally for a while, and presumably still takes them, and also writes a blog, which is here, linked to the latest installment:

- X Rx blog: With a little help from my friends

I have read some but not much of this blog, and mentioned it twice, that I remember, in Nederlog: Once, to remark that I defend her right to be experimenting with ARV-medicines, especially since she does it on herself, has ME/CFS and is a medical doctor (*); and another time, to remark that a retrovirologist called Jason wrote sensibly on her blog.

One of the reasons for me not to read much of Ms. Deckoff-Jones blog is that it also provides ample space to anonymous ranters and ravers with bullshit arguments and sickening impertinent prose-habits directed, nearly always anonymously, at whoever disagrees with their prejudices.

In the linked blog one can read how Ms. Deckoff-Jones fell out with Jason the retrovirologist, and while she thinks he is to blame, I think myself - a mere psychologist and philosopher in his 33rd year of ME/CFS - that she is to blame, and that mostly for two reasons:

(1) Like many people with ME/CFS - indeed like most people with serious long time problems - she has difficulties reigning in her temper (see: self-control, in my Philosophical Dictionary) and
(2) like many people with ME/CFS who are not scientists, she very easily and palpably projects her own prejudices onto others, who she then blames for satisfying those projected prejudices.

As I indicated, both are human weaknesses, but I'd like to see it different in a medical doctor, simply because medical doctors ought to be clear in their own minds about this.

In the above linked blog you find the e-mail correspondence between dr. Deckoff-Jones and Jason the retrovirologist, and it seems to me the former has it wrong and the latter did it right, and the former has it especially wrong calling the latter, who is younger than she is, and than I am, a "snot", presumably - I surmise - on the legal advice of Patricia Carter. (I must guess here, but Ms. Deckoff-Jones explicitly mentions "a lawyer" she asked for advice, and also mentioned "a lawyer" suggested the term, and Patricia Carter is a - former - lawyer who is quite capable of this, and who is clearly friendly with dr. Deckoff-Jones, and also not possessed of due self-control.)

4. Other blogs and sites

Other blogs and sites that I regularly look at that have been loudly present for quite a while fell wholly or partially silent:

CFS-Central, by Mindy Kitei, is silent since October 2; CFS Patient Advocate, by Chris Cairns, has been mostly silent for a month, but had a piece yesterday on the Norwegian finding I also briefly mention below; CFS Untied, by Khaly Castle, seems mostly angry, and seeks support for dr. Mikovits, for whom there is a petition, insisting she is to be treated fairly, that currently has 220 signatures (while ME/CFS forums in the English language have more than 5000 members); and I could go on.

I won't go on, except in drawing the inference that the news that XMRV was probably contamination has hit quite a few patients quite hard, which explains their reactions to a considerable extent, as do the following three Wikipedia-lemmas, that I've listed before, because they may help some

- When Prophecy Fails
- Cognitive Dissonance
- Pseudoscience

5. The Norwegian Rituximab news

Yesterday a paper was published that has been on hold since May:

     - Chronic fatigue syndrome eased by cancer drug
       (New Scientist)
     - Norwegian research breakthrough can solve CFS Mystery
       (Norwegian TV2, English text)
     - Rituximab in CFS
       (abbreviated title, full text, PLoS One)

The brief summary is: Norwegian oncologists have found that 2 out of 3 (10 out of 15) of 15 patients with serious ME/CFS were helped by the anti-cancer medicine Rituximab. The tests to establish this were double blind, but there is at present no known explanation.

This is interesting, since it is a specific medicine that can be empirically researched, but the normal caveats apply: It's not known whether these 15 patients really had ME/CFS; the research has not been replicated; and also replications and further tests will be slow, at least as long as there is no good explanation for the result, as it seems to take 2 to 3 months before the taking of Rituximab shows effects, if it does. Also, it is not a cheap drug.

6. Problems ahead

There are many problems ahead for people with ME/CFS - and that is on the tacit premiss that the current economical crisis doesn't deepen, for if it does, in a major way, as it well may, given the meanwhile proven lack of requisite talents of Obama, Sarkozy, Merkel and others, who all seem to have excelled in doing too little too late, the situation for almost everyone in Europe and the US will get much more difficult, whether one is ill or healthy.

I will mention three problems for folks with ME/CFS.

A. The DSM-5: It is coming, and it seems it may have very bad effects for persons with ME/CFS, especially in the US, England and Holland, where it will probably be used to legally force ill people to work and to exercise, with the probable result of killing them, if not directly then after a while.

By far the best information about the DSM-5 is on Suzy Chapman's site, which is here:

- DSM-5 and ICD-11 Watch

This urgently needs something done about, though I am afraid more is needed than patients with ME/CFS can deliver, firstly because it is a major problem anyway - see: Inside the Battle to Define Mental Illness - that has received far too little attention; second, because those in charge of the DSM-5 answer no rational criticism in a rational way, not even polite, well written, quite rational criticisms by highly qualified psychiatrists and psychologists; and thirdly because "in the ME/CFS-community", once again intellectually and morally incompetent imbeciles are allowed - and are once more protected by moderators and owners - to undo all the good work a few did.

Which leads me to the second and third problem:

B. The incompetent and immoral patient community: Before I am inundated  with angry mails: I am an atheist, but most patients are or pretend to be very religious folks, so I will adopt the Calvinist view that most men and women are fit to go to hell, mostly because while knowing very well what is good, what is true, what is fair, they freely chose not to do what is good, nor to say what is true, nor to treat others fairly:

"If mankind had wished for what is right, they might have had it long ago. The theory is plain enough; but they are prone to mischief, "to every good work reprobate.""
- William Hazlitt: On the pleasure of hating

In particular, I have read over the past two years probably thousands of posts by certainly hundreds of posters on ME-forums who all argued like a bunch of demented idiots about the merits of retrovirological research they all and each could and in fact did know they all were quite ignorant to judge rationally.

Nevertheless, hundreds judged by the principles of wishful thinking, and in the process damned others for daring to disagree - and were protected in doing so by incompetent moderators and incompetent owners of forums.

They were free to write and behave like hooligans, like fanatics, like zealots - and while all of that is quite common elsewhere, notably in sports, religion and politics, it is not in the interest of genuinely ill people like me, since it is not in the interest of real science and of real scientists.

And since in fact this mindset - of the stupid, the malicious, the ignorant, the conformist, the lazy, the liars, the pretenders - is so human-all-too-human, not just among folks with ME/CFS, but almost everywhere you see ordinary men and women engage in politics, religion or groupthinking, I am afraid it can't be avoided or circumvented on patients' forums, extremely ill moderated as these tend to be, precisely because it is done - again as in the police-force and in the bureaucracy - by folks most ill fit to do it well, which tends to make them, in their own eyes, eminently fit to dictate to their betters, especially if they can enjoy anonymity while bullying the few who are honest, write well, and can and do think rationally.

C. A non-existing scientific forum for ME/CFS-patients: It would, accordingly, be nice if there came to be a new English forum for ME-patients, that is not open for just any anonymous bigmouth who claims to have ME/CFS and acts like a hooligan, "moderated" by folks of his or her own personal qualities and education, but by folks who are not anonymous, even if they publish with an alias, and who can prove they have at least the M.A.-degree in some relevant science (or an IQ above 130, and no history of offending others on forums).

Then again, over the past two years of reading forums about ME/CFS, I have seen only a few who might qualify, indeed - and I add this not to be overly dramatic, and to make clear this is a personal judgment: - as I also have seen few persons in my life of 61 years who were either rational or reasonable, and very few who were as much as capable, in my view, of both. (**)

Then again, I have written about this as well in Nederlog and elsewhere:

- me+ME:  On the human predicament
- The tragi-comical human fundamental problem
- On a fundamental problem in ethics and morals

Have fun with these educational texts!

---

Note

(*) I still think she has that right, and my main three reasons to hold this are the same as before: (1) she is a medical doctor herself, and should be able to judge the risks of doing so better than most; (2) it may shed some medical light on ME/CFS, whether she is right or mistaken; and (3) those who object who do not have the disease, including extensive experiences of the attending discrimination and the immoral and dishonest lack of care by most medical doctors for those who do have the disease, really have no good idea of what it is like to have to survive with ME/CFS, especially in its more serious and crippling forms.

(**) In case you missed it: Non posse nemo obligatur - and I have seen few folks in my life I consider rational and reasonable. I am not going to blame people for being born stupid, but I am also not going to put up with stupid people as if they are not stupid, and ought to be respected as if they were competent and capable, when all they are competent and capable of is bullshitting and bullying. Also, it's an idiotic shame these things can't even be discussed on patients forums precisely because the greatest rotters and liars are the most insistent on being respected, and treated as if their bullshit deserves respect.

Short descriptions of the above: