Thursday, January 7, 2010

Pay Attention to the Data Set: More on UK XMRV study

 
May Be Reposted:

I have posted a response under the title, "Pay Attention to the Data Set," to the article, "CFS patients in UK show no signs of suspect virus," in New Scientist online:
<http://www.newscientist.com/article/dn18341-cfs-patients-in-uk-show-no-signs-of-suspect-virus.html>

Pay Attention To The Data Set

Thu Jan 07 04:52:29 GMT 2010 by Mary M. Schweitzer, Ph. D.

There is an old saying in computerized statistics: GIGO. It means garbage in-garbage out - the study is only as good as the data set. In this case, the data set came from patients diagnosed with a version of CFS that is entirely psychiatric. Simon Wessely, one of the co-authors, has stated numerous times that he believes the disease to be a type of neurosis once called "neurasthenia" ("the vapors," a "nervous condition," a "nervous breakdown").

Two more of the seven authors on this study work with Wessely at Kings College, London. Wessely once told a patient with neurally mediated hypotension (suggested as a cause or contributing factor in JAMA, fall 1995) that she could not possibly have CFS because all patients with physically explainable symptoms would have been weeded out before they reached his clinic for diagnosis. Makes for a tautology, then, if there are no physical abnormalities in his patients.

Kings College, London, follows the theory that patients with CFS hold "inappropriate illness beliefs," and they have to re-learn that (1) they are well, through cognitive behaviour therapy (CBT), and (2) they can be reconditioned, through graded exercise therapy (GET) - and then they can happily go back to work and family.

These theories have sent children and even adults to foster care or psychiatric hospitals for the sin of having "chronic fatigue syndrome."

The Kings College picture of CFS can be viewed on their website, at <http://www.kcl.ac.uk/projects/cfs/health/>

If you are pressed for time, read the section called "Letting go of support," at

<http://www.kcl.ac.uk/projects/cfs/health/#Support>

The fact of the matter is that patients so diagnosed do not have the disease that was studied at the Whittemore-Peterson Institute. Most likely, they have a form of depression.

A great deal of useful resarch into biomedical markers and viruses has been conducted using the Fukuda definition for CFS (CDC, 1994). Wessely, White, Sharpe, Cleare, Chalder, et al, however, origionally rejected the Fukuda definition, substituting instead a definition that did not include any physical symptoms but allowed depression. The result, not unsurprisingly, is that most of their patients suffer from some form of depression. (Ironically, the jury is still out on whether CBT/GET even helps the depressed patients.)

In this article, however, the researchers claimed to have used the U.S. CDC Fukuda definition. The definition requires six months of debilitating fatigue plus four our of eight possible physical symptoms. If the correct symptoms are chosen, particularly if interpreted more generally, it is possible to make depressed patients look like they fit the Fukuda definition.

Note what happens if you use the following:

- Six months of fatigue

- Headaches

- Sleep abnormalities

- General aches and pains

- Distraction or confusion

Who needs a retrovirus when "CFS" can be so easily "cured"? According to Kings College, "Our routine treatment is cognitive behaviour therapy ... Some individuals receive CBT over the telephone if they live a long way from the unit or find travelling difficult."

The patients who have tested positive for XMRV in the Mikovits et al studies have very different medical histories. Most have other diagnosed medical conditions - including, but not limited to, Coxsackie B, Adenovirus 4, HHV-6 (Variant A), recurring EBV, HHV-7, cytomegalovirus, chlamydia pneumonae, mycoplasma. Many of them have a nonexistent natural killer cell function, a viral antibody truncated in half (the 37kDa Rnase-L), and/or inverted T-cell ratios. Some who have been sick for decades have developed myocarditis, stem cell cancer, Burkett's lymphoma - and of these, too many have already died.

What on earth do the King's College clinic's patients have in common with those of Dan Peterson at Incline Village, NV? Only the name "chronic fatigue syndrome." There is no shared meaning.

For a true evaluation of the XMRV research, it's necessary not only to follow the process precisely, but also to use a comparable data set. This data set has absolutely nothing in common with the one used by the WPI, NCI, and Cleveland.

And that is what is meant by the old saying, GIGO.

Reviewers of research for publication must pay more attention to the data sets being used. The results mean nothing if you are comparing apples to oranges.

It is also well past time that political entities charged with the health and well-being of the public ALSO pay attention to the way research has been constructed, not just the abstract or the final paragraph.

Without consistency, there is no science. Only opinions.

Mary M. Schweitzer, Ph.D.
 
 
 

1 comment:

Joanne said...

An excellent article thank you for posting this.

My ME/CFS turned out to be lyme Disease another equally controversial illness skewed by money and politics for financial gain. Sounds familiar!

Even NICE say that Lyme Disease should be excluded before a diagnosis but with the controversy and testing being only 50% reliable then how many people ever get properly considered to see if their ME/CFS is actually Lyme disease and after long term antibiotics patients can get their health back?
See http://www.ilads.org/