August 17, 2010


ME + me : Some good ME-news (?!)


I keep being unwell. Yesterday's Nederlog was a translation of a piece I published in Dutch in 1989, "I want to be read", incidentally a quote of Multatuli, that continues a series in which there also are ME + me : Real science & real psychology = joy, "Mandarins with an IQ of 115", and Yahooism & democracy.

Today there is some good news, that I reprint in its full glory here. It concerns the Alter paper mostly, is from something that calls itself RGJ.com, which seems to stand for "Reno Gazette Journal"; was written by Lenita Powers; and I provide a link in the title so you can verifiy it yourself, but I quote all, and have a short comment and summary under it:

   Findings by Reno scientists confirmed by U.S. government

Two Reno scientists, who last year discovered a new infectious human retrovirus they linked to Chronic Fatigue Syndrome, said Monday that their findings have been replicated and confirmed by the U.S. Food and Drug Administration.

Dr. Judy Mikovits, one of the lead researchers with the Whittemore Peterson Institute for Neuro-Immune Disease in Reno, said the FDA’s review of their findings is scheduled to be published in September.

“There has been an issue over whether anybody could replicate our study, and it will not only confirm our findings but extend our findings, which is really exciting for us,” she said.

Mikovits said they also have new, unpublished data concerning the retrovirus, XMRV, that could lead to treatment of Chronic Fatigue Syndrome.

“We have immune system profiles and we can tell by the immune system how the XMRV is doing the damage,” she said. “So we could have a diagnostic test to follow clinical treatment and show that people’s immune systems go back to normal. That’s the latest data that’s really amazing. That’s what we’re after.”

That data will be published by the end of the year, probably in a clinical immunology journal, she said.

Lombardi said clinical trials could begin soon at the Whittemore Peterson Institute, which is relocating from its tiny laboratory on the University of Nevada, Reno campus to the university’s newly opened Center for Molecular Medicine.

“Actually, we already have been contacted by people who are sending us tests, perceiving that they may be asked to be part of the clinical trials,” he said.

“I think once the (FDA) paper comes out and once the controversy is put to rest, the pharmaceutical companies will realize that this is some very low-hanging fruit for them to make the next transition,” said Lombardi. “There are so many drugs that have been developed for HIV, and it’s a retrovirus. So there’s probably a ton of HIV drugs that they can go back and re-screen that could be used.”

There also are three published drugs that work against XMRV, Mikovits said.

“We totally expect at least one clinical treatment trial before the end of the year,” she said. “That is our goal and that’s what this new facility is for.”

Clearly, that is very good news for persons with ME. Let me put it pointwise:

  • The Alter-study has replicated the original Lombardi-study.

  • The replication has been done by scientists working for the U.S. Food and Drug Administration: It can't get any better than that, also from the point of view of making the necessary personnel and policy-changes at the CDC.

  • The Alter-study not only confirms but also extends the original study's findings.

  • Dr. Mikovits has new data that could lead to treatments.

  • The Alter-study is to be published in September; the new Mikovits-data in the end of this year.

  • Dr. Lombardi, the main author of the original study, believes (1) there is a good change existing drugs against HIV (also a retrovirus) and (2) that the big pharmaceutical companies will definitely be interested.

  • Dr. Mikovits knows from three published drugs that work against XMRV.

  • Dr. Mikovits expects to have at least one new treatment trial this year.

Wow and wow, as Confucius said so well.

P.S. As I am not allowed to follow ME-F by its incompetent owners, I must rely on PR-F, which I am not very happy with, for various reasons, that I will not mention here and now, though I expect they will crop up soon on this place.

Anyway... one of the things I have been missing among the reactions (some of the Dutch and Swiss ones were of a truly nauseating egoism and crudeness) is this:

Personally, I am very thankful to Dr. Alter and his co-workers, for they seem to have done what until then seemed virtually impossible: Beat the CDC's falsifications and propaganda - and do it with real science.

This is what real science can be like and what real scientists can be like, but neither the one nor the other often are. Dr. Alter though did what real scientists can do, seems to have done it very well indeed, and must not only be a bright man but also a brave man.

It's very much appreciated, sir, not only because I have ME since 32 years, but because I know how rare truly intelligent truly brave human beings are.

Thank you very much.

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)

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.

Maarten Maartensz

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