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Sep 16, 2011           

me+ME: Good news - money for biomedical research into ME!

A bit of really good news about ME - and I quote Ms. Amy Dockser Marcus from the Wall Street Journal, in blue, also with the article linked in the title:

Applying Venture Philanthropy to Chronic Fatigue Syndrome

By Amy Dockser Marcus

Venture philanthropy — the model used to accelerate research and drug development in diseases such as multiple myeloma and cystic fibrosis — is now being applied to a new arena: chronic fatigue syndrome.

Scott A. Carlson, executive director of the newly launched Chronic Fatigue Initiative, tells the Health Blog the Hutchins Family Foundation is providing “over $10 million” in funding for projects through 2014, with the possibility of more depending on the findings.

The initiative wants to fund projects that hunt for the causes of the illness, the creation of a central bio-bank for blood and other biological specimens and the development of a cohort of 200 patients and 200 healthy controls for studies.

As “over $10 million” is a lot of money, the research may find something interesting. Here is more from Ms. Marcus's article:

The first group of funded projects includes the enrollment of 200 CFS patients at different sites around the country. Researchers will use “very specific criteria to ensure we have representation of many of the aspects of CFS that may increase chances of finding a pathogen if it is still present in blood samples or other samples we will be acquiring,’’ says Mady Hornig of Columbia University, who is a co-director of the pathogen discovery piece.

In addition to blood, the researchers are collecting patients’ saliva, tears, urine — even a rectal swab. “You are trying to get a sense of what is different about them,” says Nancy Klimas of the University of Miami, who is in charge of the cohort recruitment project.

Samples will be stored in a central bio-bank, along with material from matched healthy controls, who are being recruited with help from the Red Cross.

Very good - that's the rational way to go about it, and indeed the way that should have been followed, and maybe might have been followed, were it not for the despicable pseudoscientific bullshit emanating from Reeves, Wessely and Bleijenberg and co. since 1988 about ME/CFS.

More from Ms. Marcus:

Another funded project involves a large epidemiological study using data from over 250,000 people who are part of three long-running Harvard School of Public Health studies, including two groups of female nurses who have been providing information and health data for decades.

Alberto Ascherio, a Harvard professor who is leading this project, says researchers will try to identify people who have chronic fatigue syndrome and then study biological samples in addition to lifestyle, environmental, and other information to get a better estimate on the prevalence of the disease and its risk factors.

Again very sensible - and good to read there is "a Harvard professor" involved: With clever statistics, also given the data from "two groups of female nurses who have been providing information and health data for decades" this may also produce useful results, especially if it is done by real medical scientists, and not by biased or financially interested and anyway not really scientifically qualified psychiatrists.

Indeed one of my own complaints against medical doctors who have misjudged me and millions of others is that they seem never to look at the facts about how I and millions of others with the disease are forced to live our lives, and instead of looking into that only do some standard bloodtest, usually not even testing a specific hypothesis, and - in Holland, land of the Bleijenberg moral and intellectual dwarfs - then conclude "Nothing can be found, so it must be psycho-somatic, so there is no need for more testing, and so there can be no help for your kind of somatoformer!" (It's not quite like saying "for all I care, as a medical doctor, you can go and hang yourself", but it sure comes very close! And probably some really thought so, but only refrained from saying so for fear of litigation.)

Two final bits, with my personal thanks to Ms. Marcus, who in my experience has consistently written very sensibly about ME/CFS:

Ironically, one of the key players in the new venture philanthropy effort has a lead role in the effort to determine if XMRV is linked to CFS. Virus hunter Ian Lipkin of Columbia, who is co-leading the pathogen discovery effort as part of the Chronic Fatigue Initiative, was appointed by NIH to direct a major study to determine whether or not the XMRV link exists.
Once samples start coming in to the bio-bank, Lipkin says they plan to do an initial search for 20-30 infectious agents implicated in the past to be connected to CFS, including the herpes and Epstein-Barr viruses.

This is also rationally sensible and good news, and indeed for me, who started ME with EBV (Epstein-Barr Virus) that is one path to investigate more closely.

Besides, it is nice to see that Dr. Lipkin seems convinced there is something real and biomedical involved in causing the symptoms of ME, and also is willing to invest more of his own research efforts on it. 

So... altogether that is quite a lot of good news, not only because of the money, though that surely helps a lot to do the biomedical research that is so much needed, but also because it shows there are quite a few really qualified biomedical researchers who are willing to do the right kind of biomedical research into ME, and have not at all been convinced of the pseudoscience from Reeves and Wessely and their ilk.

P.S. Corrections, if any are necessary, 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)
3.  Hillary Johnson The Why
4.  Consensus of 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)
 Maarten Maartensz
ME in Amsterdam - surviving in Amsterdam with ME (Dutch)
 Maarten Maartensz Myalgic Encephalomyelitis

Short descriptions of the above:                

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:

7. A space- and computer-scientist takes a look at psychology.
8. Malcolm Hooper puts things together status 2010.
9. I tell my story of surviving (so far) in Amsterdam/ with ME.
10. The directory on my site about ME.

See also: ME -Documentation and ME - Resources
The last has many files, all on my site to keep them accessible.

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