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Nederlog

 

August 18, 2010

 

ME + me : Some more good ME-news

 

Sections:

1. Whittemore Peterson Institute opened
2. Interview with the Whittemores (mother and daughter)

I keep being not well (and that was the end of the less good news ). Yesterday's Nederlog was titled Some good ME-news (?!) and concerned this article: Findings by Reno scientists confirmed by U.S. government (<- link to the original) but in fact there is some more good ME-news that I simply forgot yesterday, being PEM'd and not well, as I said.

In a moment I'll turn to that other good news, but let me start with explaing that the "(?!)" in yesterday's title was ironical rather than doubtful, and that I meant to be stressing that there very often is no good news about ME/CFS, and not that the news I shared yesterday was not good or not credible, nor that it was not news. (*) It is and it was, and so is the following:

1. Whittemore Peterson Institute opened

In fact, I am ill with ME since January 1, 1979; did not know what disease I have until 1988 or 1989, when I heard about a disease that sounded just like mine called "M" "E" on the BBC World Service's radio program "Health Matters", and since then learned some about the disease with help of patients'  organizations and the internet, but none of what I learned was really good news, and quite a lot was quite bad (although this will be the case with any disease, also those with much better research done and with far fewer pseudoscientists involved).

And indeed, being a psychologist myself, and having received either Ger Bleijenberg's M.A. or his Ph.D. thesis (forgot which) from a professorial friend with the question "Might this be something for you?" ca. 1989, I had concluded the man was mad; the "research" he reported was utter rot; he was an immoral idiot, and - therefore - personally I would do best by looking the other way rather than in the direction of ME/CFS, namely for fear of getting drowned in my own vomit else. (Remember that there was no internet then.)

Anyway - this is the pseudoscientific bullshit that kept me since 1989 from trying to seriously research ME, and this also did not fundamentally change for me or indeed for most other patients with ME, until I heard of XMRV first in the beginning of October 2009 (**),because of the original Lombardi-study, since when things have moved quite a lot in and around ME, and comparatively fast also (e.g. as things in science go), also including the rise, abuse and trolling of patients forums, that initially were hopeful to have, but since have been taken over as politics have been taken over: by the verbally best liars and the morally worst human types, protected by the uneducated unintelligent average, who believe their scams and postures. (***)

But I was talking of good news. Here it is, as the WPI presented it, dated August 16, 2010:

Today, the Whittemore Peterson Institute (WPI) celebrated the completion of its new facility at the Center for Molecular Medicine. The WPI is the first institute in the world to integrate research, education and treatment of neuro-immune diseases. Located at the University of Nevada, Reno, the $77 million facility is the result of an innovative partnership funded by a combination of University research grants, private contributions to the WPI, and public funding from the state of Nevada. The new WPI facilities, set to open in fall 2010, include executive and administrative offices, research and clinical labs and a medical clinic.

“The completion of this building is the realization of a dream and a beacon of hope for patients affected with neuro-immune diseases,” said Annette Whittemore, president and founder of the Whittemore Peterson Institute. ”Our strategic partnership with the University, combined with this dynamic setting gives us confidence that the research done here will translate into innovative medical care for patients around the globe. We are proud that our work will soon lead to new avenues of research and treatment for these diseases.”

Monday’s program included a reception for donors, government officials, and personal friends of the institute and University, followed by brief presentations on the topics of higher education, University and WPI research, and the significance of this new medical research building.

2. Interview with the Whittemores (mother and daughter)

As it happens, the sound on my computer is problematic since late last year, and I had too little money and/or health to have it repaired or replaced by a new computer, so far. Around a month ago it suddenly transpired that sound was back in the headphones, whence it then again disappeared, since when it has disappeared and reappeared there several times.

This makes the viewing of videos (that depend on sound to be understood) somewhat problematic, and did not allow me to see and listen to more than a small part of what I would have done else.

Anyway... there is since several days a fine interview with mother and daughter Whittemore, that was broadcast in Nevada on August 16, and that you should see if you are interested at all in ME:

I give it in two parts because thus it is on Youtube, that will probably be easiest available to most.

It is a fine interview with Sam Shad, for Nevada Newsmakers, that also apparently was not made in a TV-studio but at the WPI (which I like better, because I don't like the usual bombast that tends to come with news-programs, especially (but not only) American ones).

I like the interview for various reasons, including that Sam Shad, unlike many American news-anchors, seems a real person, which is something of - how shall I put it - a relief, after having seen too much of US TV with news-anchors apparently imported from some creepy alternative reality where the human shape and form looks and sounds decidedly robotic, inane, inanimate and laboratory made. Not thus Mr. Shad, which was a pleasant surprise, wholly apart from the news he brought and the interviews he made, to which I turn now.

I'd seen Annette Whittemore - the mother, and I am of the generation and mental and moral outlook that does not find it obvious or indeed polite to call everyone by his or her first name, as if this is a matter of course, or as if one has known them personally for years - being interviewed before, indeed also in an interview with Sam Shad, but this was the first time I saw Andrea Goad-Whittemore interviewed.

As it happens, I like and admire mother and daughter Whittemore, and indeed Annette Whittemore achieved a great many things for people with ME and other diseases, and did so in a relatively short time as well, while she sounds very sensible, smart and competent indeed - which incidentally is also not otherwise than I thought, but even so is very pleasant to see and hear.

Andrea Goad-Whittemore I did not see interviewed before, and indeed she has been very unwell for a very long time, but she seems to have improved considerably recently, while she also looked and sounded like a truly attractive woman - indeed, to put it in terms of a somewhat cynical though apt US of A-ish locution: she looks like someone fit to play herself in The Movie Of It - where I add the "sounded" to "looked" because it so happens that personally I like smart women, and this Mrs. Whittemore evidently is very smart as well, and a good talker too: When she gets (more) healthy, she could be a most effective patients' advocate - as she is already, but it would be nice to see and hear her debate a number of obnoxious academic fools, for clearly she can do that quite well, given sufficient health and energy, while in any case it would be nice to see someone mostly or fully cured from very severe ME. (And from her looks in the interview, that seems at least possible.)

And since I yesterday thanked dr. Alter, it is both fair and ethically and intellectually appropriate to do it again:

Personally, I am very thankful to Dr. Mikovits and her co-workers, and to Mr. and Mrs. Whittemore, for finding a real opening into a very serious disease that has been maltreated for decades now, as have been millions of patients having it, and for doing this (and having the intelligence to do it as they did) with real science, and indeed for founding and financing a scientific institute for the purpose.

I very much appreciate this, because I have ME since 32 years; because I know how rare truly intelligent and truly brave human beings are - and also because these persons also seem real caring people, who try to talk rationally and act reasonably, completely unlike the pseudo-scientists they defeated with real science.

Thank you very much, to you, and to you co-workers too.


P.S. And please note that I have only concluded that, on such knowledge as I presently have and comprehend, at least, XMRV at this point in time is a good hypothesis about the possible cause of illness of a subgroup of persons diagnosed with ME, but that personally I do not know of a proof that it is the cause.

On the other hand, also given that dr. Alter's study confirms and extends the findings of the original Lombardi et.al. paper, there are good reasons - as Hillary Johnson has been insisting for a while now - to start clinical trials with medicines for which there are scientific reasons that they may help with ME, at least if (1) these trials are done with sane and consenting adults, and (2) these trials are monitored by a doctor these adults trust.

These good reasons are of two kinds:

1. There is good evidence XMRV is a factor in the development of ME/CFS, at least in a sub-group, while there are many patients with ME who are quite or very ill, and for whom there is presently no effective treatment based on real scientific knowledge whatsoever.

Hence, if such persons are willing to take some risk to see whether they are helped by such medicines as may stop the activities of XMRV, or may alleviate these, and such medicines are known to exist, they should be given a chance, if they qualify and there are the necessary means (such as: paying the medicines, having help at hand, having fast access to a good doctor if necessary a.s.o.)

2. Real science proceeds by rational argument and thinking, and by empirical experiment, whereas one can only find out whether possible medicines indeed do heal by experimenting with them.

Also, given the seriousness of the disease and the serious illness of many patients, waiting till all the necessary tests have been done on mice or perhaps on apes, if that is possibe to start with, which I doubt, will very probably slow up both the research into ME and the help of patients with ME.

Finally a warning, in case it is needed: In case some people were thinking of buying their own medicines on the internet and experimenting with these: It's your life, but I strongly disrecommend it unless you yourself are a medical doctor - and even then it would be far wiser to have a doctor you trust monitor you.

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. 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)

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


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


(*) There are a number of obvious trolls on both ME-F and PR-F (the two forums for persons with ME I am acquainted with) who deny "it is news" or who insist that what I reported yesterday "is bad Public Relations by WPI".

Well... it is news and it is excellent PR, and anybody who says or suggests otherwise is best regarded as a troll or is evidently so intellectually and/or morally demented that they are best of when properly sectioned.

Why that manner of idiocy is allowed on forums for persons with ME is also a bit of a riddle to me (but yes... I do have a handful of cynical hypotheses: never fear!), especially if I see on what pretexts really capable people, who also proved for years that they are who they are and are very effective advocates for patients with ME, are removed from or badly discriminated on such forums, quite often by crass, crude, rude, obnoxious, extra-ordinarily impolite recent arrivals of utter anonymity and extra-ordinary impertinence, who claim themselves in exoneration of their crass and impertinent rudeness that, first, they are not rude, second, the others are rude, third, the others started it and don't belong, and fourth that they themselves are utterly blameness, lilywhite, full of good intentions but that they are "severely cognitively impaired". Shut your very stupid gob in that case, or at least get yourself to a madhouse!

(**) Here I should mention Elaine DeFreitas, who may have made a real discovery about a biomedical cause of ME earlier, but who got no funding and rather a lot of criticism, much of it from pseudo-scientists. Her research, until it was effectively killed, at the time when it happened this moved many patients with ME to high hopes, that were then disappointed. And while I did have ME at the time, I did not know any of this, because I had decided not to waste my time on a subject a mini mind like Bleijenberg's wrote about.

(***) This really is a problem on ME-Forums as with voting in so called democratic countries, with a majority of hardly educated very slow witted having the vote because of their blessed equality to any genius there might have been among humans apart from the democratic majorities:

Intelligent discussion is made almost wholly impossible by anonymous lesser brained uneducated fools who insist that "We" - as in "Our Community", of ordinary men and women, seriously ill with a disease that causes great fatigue, brain fog and loss in cognive capacities - should redo, rethink, rediscuss, criticize, think through, and especially endlessly write awfully bad hardly informed prose about any little fart some nominal scientist was pleased to let out into the public about ME; where anonymity seems often craved by people who do personally not need anonymity in any way but to be able to indulge their own personal beastliness, complexes or unhappiness on others, since the internet allows them to have - at long last, blessed be the anonymity and the safety of being far away while being most offensive! - some sweet personal revenge on all those smartasses they met in their lives that they  could not handle themselves while bearing their real names or while being physically present with those publicly vomited on; and where consequently, also due to all manner of trolls (or born assholes: illness does not ennoble) stoking these fires on anonymous forums.

In consequence, everybody or almost everybody with real intelligence, real knowledge, real ability, or just real personal honesty and integrity is hunted away by anonymous scum and/or endless stupid, impolite, interminable "discussions" about nitwits who don't really know how to write or argue, and who don't know any science, but who want to meddle wherever they can, because they lead very boring, bleak lives without it, having no real talents that could move them themselves.

And if the intelligent ones are not hunted away, at least they are effectively shut up mostly, simply for fear of having to read through another set of uninformed illwritten blatherings by persons not at all burdened by any good education or any mental clarity, and who - possibly, conceivably - may be quite blind to their own failings, impertinence, impoliteness, or lacking sense of standards and merits.

Incidentally: Aristotle, Lucian, Machiavelli, Swift, Mandeville, Fielding, Dr. Johnson, Multatuli,  Nietzsche, yes even J.S. Mill thought likewise. You can't leave all matters to all people; you can't leave most matters to most people: Only a small minority can really think or write. If it were different, human history would have been very different indeed, and Shakespeares and Newtons would abound.

And all the dumbos suddenly enthusiastically agree as soon as the matter of who is to be their doctor comes up: Then they insist on the very best, conveniently forgettting that in the breath before that, they maintained, often with a great show of moral indignation for those who deny this, that everybody is just the equal or equivalent of everybody else.

Maarten Maartensz

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