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August 24, 2010

 

ME + me :  Good ME-news: More about the Lo/Alter paper



As before, I continue being not well, but I have done some reading and checking of what's being said about and around the Lo/Alter paper (as seems the right way to summarily refer to it) and provide some links with some comments below.

First where I left matters yesterday, repeated because the first is a link to the Lo/Alter paper and the second a video from the WPI with Dr. Judy Mikovits providing clear explanations and comments:

As I also said yesterday: I have read the Lo/Alter-paper and it is good and the brief of it is that the Lombardi/Mikovits study has been confirmed and that the chances for persons with ME/CFS to be taken seriously and for more good biomedical research into ME/CFS are now much better than they were before this. Also, this is good confirmation by the best possible scientists, both in terms of scientific standing and in terms of who they did the work for, and besides the reporting and writing is quite clear, in so far as this is possible with this subject, while the science, samples and methods used are well described and documented, which in fact is quite important from a methodological and philosophy of science point of view, and much appreciated by me, and certainly of help to many others.

Before giving a number of commented links to reactions on the Lo/Alter-paper and press conference, it is best to provide some summaries and quotes of what was said during that press conference, that is quite interesting, and from Phoenix Rising, with my boldings added:

Some fragments of transcription:

Dr Alter:
"We think, basically, it confirms the findings of the Whittemore-Peterson Group."

"It does, at least, confirm the findings of Whittemore-Peterson...I think one wants to go back to their studies because they've had more time, and they've done extensive work...so their study is more advanced than ours, but -with that as...er...with them having done the groundwork I think our study is highly confirmatory of their work..."

Dr Lo:
"Our findings show that the more diverse group of virus there is compatible with the XMRV, the xenotropic one, but really not identical and more closely related to the polytropic group."

Q:
"Does the finding of a polytropic virus suggest a looser association with CFS than finding a xenotropic would have?...It would seem to suggest more of a process of chance than a firm association."

Dr Lo:
"No, actually this group of virus we call the polytropic MLV - this is actually more characteristic of a retroviral infection...in fact what we found is it actually gives us a very good confidence this can not be an arbitrary artefact from PCR or contamination because the sequences are so varied from one patient to another."

"They are in the same family but...they are compatible with the earlier finding of the XMRV, however they are not identical and they are more diverse."

Q:
And so is it usual that you would find an association with a single disease with this kind of a variety of viruses?

Lo:
"Yes, indeed, that's exactly what we anticipate for retrovirus infection...over time you will see the many different sequences there."

Alter:
"...The retroviruses...exist in big families of viruses...Hepatitis C is a very good example, nobody's infected with one variant... they have a whole huge family of variants...and if you take any given patient the patient will have multiple variants in them, and different patients will have different variants, so it's very characteristic of these kind of RNA viruses."

"Since the original publication the WPI and NCI groups have found that they too are finding greater variability in their patients so it is not just XMRV as in the original cohort of patients."

Lo:
"I think...we can say we found this kind of variability that's actually MORE consistent with the natural form of a retrovirus infection in this group of patients."

I have bolded what seems to me new and interesting or summary:

  • it confirms the findings of the Whittemore-Peterson Group
  • more is involved than XMRV: A group of viruses called the polytropic MLV
  • what was found fits very well with retrovirus infection

In the link I provided there is more, and on Phoenix Rising I found links to mpg-files, but the one I downloaded failed to open, but that very well may be due to my computer rather than to the recording.

Next, here are some of the links I found that I found interesting or worthwhile for some reason:

  • "New research linking chronic fatigue syndrome to retrovirus is released after being held by journal" - by Katherine Harmon, in the Scientific American

    This starts of with a first paragraph thus:
     

    • The perplexing condition known as chronic fatigue syndrome (CFS) might be linked to infection with a retrovirus, report the authors of a new paper published this week in Proceedings of the National Academy of Sciences (PNAS).

    and ends with a last paragraph thus:
     

    • In fact, it might take a new treatment to clarify the role of these retroviruses in CFS. And some researchers think the time is right to start looking into drugs that fight against retroviruses, known as reverse-transcriptase inhibitors (as have been investigated to address XMRV in prostate cancer). "Studies to establish proof of principle are justified to determine whether safe antiviral regimens can impact on CFS and to determine whether xenotropic or polytropic MLV is causally associated with this debilitating disease," concluded Courgnaud and her colleagues.

    This article is well done, as indeed on may expect from Scientific American.
     

  • "Chronic fatigue syndrome 'may be caused by mouse-related virus'" - by Claire Bates, in the Daily Mail

    Some might have guessed that the Daily Mail would not write about this issue or write nonsense about, but no: Claire Bates did quite well, in evidence of which are four subsequent brief paragraphs that are much better than the collected works of British professors of psychiatry I could name:
     

    • Scientists found evidence of murine leukaemia virus - known to cause cancer in mice - in 86 per cent of chronic fatigue patients.

      However, traces from this family of bugs were only found in seven per cent of samples from healthy blood donors.

      It adds to the growing body of evidence that an infection could play a role in the complicated illness.

      ME – also known as chronic fatigue syndrome - affects around 250,000 Britons.  It usually develops in people in their early 20s to mid-40s.

     

  • "Second Paper Supports Viral Link to Chronic Fatigue Syndrome" - by Martin Enserink, in Science.

    Another competent article from a scientifically qualified source, from which I quote the second, fourth and sixth paragraphs:
     

    • In the new study, conducted by scientists at the National Institutes of Health (NIH), the U.S. Food and Drug Administration (FDA), and Harvard University, researchers scanned for traces of a virus known as XMRV in samples taken from 37 CFS patients, collected by Harvard Medical School CFS specialist Anthony Komaroff in the mid-1990s. They found evidence for the virus in 32 (87%) of the patients, but in only three out of 44 healthy controls (6.8%). It remains to be seen whether the infection causes the disease or vice versa, says NIH virologist and co-author Harvey Alter—but he's "confident" that the findings are correct.
       
    • Skeptics were concerned that the XMRV Mikovits had found might be the result of contamination by mouse DNA in the lab. To address this, the new study's first author—FDA virologist Shyh-Ching Lo—and his colleagues tested every positive sample for murine mitochondrial DNA. They found none.
       
    • The data do seem solid, admits Steve Monroe, who co-authored the conflicting CDC paper. "It's simply a good paper," adds Reinhard Kurth, the former director of the Robert Koch Institute in Germany, who helped test some of CDC's samples and did not find the virus either. Alter—a widely respected virologist and winner of the Albert Lasker Award for Clinical Medical Research—"clearly knows what he is doing. They did everything correctly," says Kurth, who nonetheless says he remains skeptical.

This skepticism then is further discussed, and the paper has this ending:

"They should be able to clear this up by Christmas," says Kurth.

Many of the main players in the controversy plan to attend a workshop organized by NIH on 7 and 8 September. Mikovits, who is on the scientific committee, says she has seen the abstracts of two presentations confirming her findings. "I think it will be fun," she says.

  • "New Hope in Fatigue Fight" - by Amy Dockser Marcus, in the Wall Street Journal

    She wrote sensibly about ME/CFS before, and does so now, and writes among other things about the subject of clinical trials with HIV-drugs for selected patients:

    • Andrew Mason, a University of Alberta professor, co-wrote the commentary in the journal calling for trials testing anti-retrovirals in CFS patients who are positive for one of the MLV-related viruses. "If the patients improve, after a certain point you stop debating whether it causes the disease and say, the treatment works and we're going to use it,'' said Dr. Mason.

    However, at present there is still some skepticism

    • But until scientists develop further evidence establishing that the virus causes the syndrome, a large-scale clinical trial testing HIV drugs against the ailment isn't likely. Norbert Bischofberger, chief scientific officer at Gilead Sciences Inc., the leading maker of HIV drugs, said the company might consider a small pilot trial but would like to see stronger evidence that the viruses cause CFS before launching a large trial. Still, "I'm very open, and this would be a great opportunity,'' he said.

    Even so, there are also people having some success with such as dr. Jamie Deckoff-Jones, as also reported in the article.
     

  • "Study Links Chronic Fatigue to Virus Class" - by David Tuller, in the New York Times

    This is another good article by a journalist who wrote sensibly on the subject before, and it starts thus (with the links as supplied in the article):

    • When the journal Science published an attention-grabbing study last fall linking chronic fatigue syndrome to a recently discovered retrovirus, many experts remained skeptical — especially after four other studies found no such association.

      Now a second research team has reported a link between the fatigue syndrome and the same class of virus, a category known as MLV-related viruses. In a paper published Monday by The Proceedings of the National Academy of Sciences, scientists found gene sequences from several MLV-related viruses in blood cells from 32 out of 37 chronic-fatigue patients but only 3 of 44 healthy ones.

    Further on there is this, again with link as supplied in the article
     

    • The findings are sure to raise concerns about the safety of the blood supply. AABB, formerly known as the American Association of Blood Banks, recommended in June that people with the illness be discouraged from donating, pending further study.

      “The possibility that these agents might be blood-transmitted and pathogenic in blood recipients warrants extensive research investigations,” Dr. Alter and his co-authors wrote in the new study.

      Judy A. Mikovits, the senior author of the Science paper, said she hoped to organize clinical trials of antiretrovirals by the end of the year, noting that they could lead to answers about whether a retrovirus causes the disease as well as to effective treatments.

So that is all very well, in terms of findings, reporting, and possibilities.......... but then you have not reckoned with such a one as Dr. Mark Borigini, an English MD specializing on rheumatism, also with a column in, of all places for one thus qualified, Psychology Today, as follows - and let me immediately say that I remember him as the guy who was pleased to describe people with ME as "Jihadi terrorists", apparently because his medical type disagrees with some e-mails he got, and is a master of misrepresentation, spin and astroturf, for it starts thus (and note the o so subtle subtitle Borgini saw fit to use):

  • "MLV Joins XMRV As The Latest Unproven Cause of Chronic Fatigue Syndrome
    I want my MLV:
    "

    • The spinmeisters are spinning, the scientific community remains unsatisfied, and the chronic fatigue syndrome patient continues on the roller coaster ride provided by research demonstrating replicating retroviruses that is not always replicated in different research labs.

    You see: All these people mentioned and quoted above, whether journalists or scientists, are utter idiots compared to the Master of "Jihadi Terrorism" that goes by the name of dr. Mark Borigini, who therefore feels free to give his own combination of wishful thinking, prejudice and careful misrepresentation instead.

    At the end, the learned doctor does a Glenn Beck, consisting of an insinuative redefinition followed by a piece of sanctimonious sycophancy meant to pooh-pooh anything related to XMRV:
     

    • So, there was no conspiracy this summer. There was no consensus this summer. There was just summer.

      It would behoove us to reflect on all the vitriol and misinformation that seems to be the only thing that XMRV has been shown to cause this long, hot summer.

O, and Dr. Mark Borigini's subtitle "I want my MLV" is a little personal "humorous" SM-exercise of his that he probably copied from the CDC: See Hillary Johnson's reproduction of the same approach, already abused in the previous century: "Dear Sirs...I am sick...". That is satire by well-paid American "medical scientists" of folks like me, anno 1986.

Personally, I am sick of and because of medical sadism: Studies in MEdical Sadism - 0 - for it seems to me that I have been having pain now for over two decades because e.g. this self-proclaimed medical specialist in helping people with pain, dr. Mark Borogini, in whose opinion it seems I must be "a jihadi terrorist", since I have ME and write about it, if not to an incompetent or liar like he must be, has not done his job properly, neither in medical science nor in medical ethics.

There is - you may not be amazed to read - much more to be found on the internet in this connection  and indeed I did read some of it, but I suppose this is the general drift, possibly best caught by Amy Dockser Marcus' title: New Hope in Fatigue Fight - for thus is is, including the fact stressed by Alter and Lo as well that more works needs to be done and is happening and coming.

Indeed, here is one more finding and reporting, namely of a study by professor De Meirleir, for which I use the English Google-produced translation I found on Phoenix Rising, with the link supplied to the Belgian original, for readers of Dutch, with the qualification that I have seen and read the Dutch article, but that its server was down when I last tried. Anyway, this is it in English:

  • Meirleir confirms XMRV findings in Europe:

    VUB researchers find new virus in patients with chronic fatigue syndrome

    Researchers at the Free University of Brussels (VUB) and the Belgian biotech company Red Laboratories have succeeded in distinguishing a new retrovirus in patients with chronic fatigue syndrome (CFS / ME patients). Thus they confirm recent U.S. findings on this issue. VUB-Press Service reports that Tuesday.

    U.S. researchers at the University of Nevada in October 2009 found that the majority of CFS / ME patients are carriers of a new retrovirus XMRV. These findings have also been confirmed by the Harvard Medical School and the National Institutes of Health (NIH). New to the study led by Professor De Meirleir VUB is that the virus was found in CFS / ME patients from across Europe. Moreover, the immunological signature, a kind of footprint in the immune system, is similar to that of symptomatic HIV patients. "It seems that for the roughly 17 million CFS / ME patients world-wide end to a long ordeal surrounding the recognition of their illness. The development of targeted therapies is already underway, both in Belgium and abroad" says De Meirleir.

    His new findings on 7 September 8 and presented at a workshop of NIH in Washington.

Finally, just in case Dr. Mark - Jihadi Terrorist - Borgini may have succeeded insinuating some:

I quote one passage on testing:

Andrew L. Mason, an associate professor of medicine at the University of Alberta in Edmonton, Alberta, Canada, says it's time to act, not point fingers.

There have been several studies showing the presence of this virus in the blood of people with chronic fatigue syndrome and prostate cancer, but other studies have not found it.

"We don't know why that is," he says. "It is baffling, and we need to sort it out rather than ignore it. It's there. Does it cause disease? We don't know, but it's there and that needs to be investigated."

"There is only one way to prove or disprove XMRV's role and that is to do a proper study with antiviral drugs," Mason says. In an editorial accompanying the new study, he suggests studies that compare antiviral drugs with placebo or dummy pulls on viral load and CFS symptoms in affected individuals are now feasible.

Such drugs are used to treat HIV, the virus that causes AIDS, and can cause several side effects.

"The drugs are well-tolerated, and we would be justified ethically to see if they work," he tells WebMD. He likens this situation to the now Nobel-prize-winning research that first tested antibiotics to determine if some ulcers are caused by the bacterium H. pylori.

"We didn't know that H. pylori was causative until they tried using medicine and it worked," says Donnica Moore, MD, a women's health expert and president of Sapphire Women's Health Group in Far Hills. N.J.

The issue is a personal one for Moore, whose son was diagnosed with CFS about six years ago.


P.S. In brief: There is still much to find out, but a beginning of a very interesting path and set of possible explanations has been found and confirmed, and while the opposition, as witnessed by the execrable Borgini above, is far from gone, the evidence is just to good, and indeed the dangers involved just to large, not to be researched further and cleared up, indeed possibly quite soon in some respects.

There is one somewhat interesting odd fact as I write this in the evening of August 24:

While there have been quite a few press-reports in the US and in other countries, the press in England and in The Netherlands, and possibly in Germany too, is mostly silent so far.

I do not know the explanation, but one possibility is that the English and Dutch and possibly German leading pseudoscientific psychoshrinks of the Wessely-school have been busy trying to keep the news out of the leading papers.

Whether this is so, I don't know. What I do know is (1) investigative journalism is almost wholly dead, both in England and in Holland, incidentally not for reasons having to do with ME, but with the combined onslaught of the internet on the papers (and their incomes derived for a century from advertisements), and the rise of postmodernism and the general dumbing down of education in Western Europe since decades and (2) messrs. Wessely and Van der Meer, never really concerned or bothered with doing real science, have successfully cultivated editors, journalists and media-persons and have had the ears, if perhaps not the hearts and minds, of quite a few journalists available to their astroturf.

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.


Maarten Maartensz

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