Saturday, January 9, 2010

Simon Wessely: Pay Attention GIGO ...

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

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:

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

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

The patients who have tested positive for XMRV in
the Mikovits et al studies have very different medical

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,

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

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

Without consistency, there is no science. Only

Mary M. Schweitzer, Ph.D.


Katieann said...

Thank you Mary, and Dr. Speedy.

If Nothing else, the public should understand that, if CFS was Not an organic disease, why then has the **CDC 'recommended' that CFS patients Not donate blood? Why is the CFS department in the CDC within the viral and infectious disease division? And why did the CDC have CFS in the top ten of "New and Emerging Infectious Diseases' for over 10 years?

** I was also told this by Dr. James Jones in 1998 when he diagnosed me with CFS.

If this does not make the tiny hairs on the back of your neck stand up then... ~shrug~

Cathy Davis said...

I have a cousin who has ALS, and stem cells are going to be the key to his cure. We follow religion too, but I don't see the harm in taking benefit of new discoveries. Medical science is booming only because people need it and it is high time more research should go on for the newer the treatment methods.

Katieann said...

oops. I was wrong on the '10 years' on top ten list. I cannot find the evidence to say how many years it Was there.but I cant find anything regarding that, so bah, and please disregard that statement in my comment I left earlier.

I think it started in 1995 according to this quote from Hillary Johnson's Osler's Web

"...It was not until 1995--ten years later--that scientists at the CDC gave CFS a "Priority 1" listing among their "New and Reemerging Infectious Diseases" category."

Anonymous said...

Rather disturbingly, the CBT practitioner who I was referred to in the UK didn't even know that CFS patients couldn't give blood...

She is my local "specialist". I rest my case.

Anonymous said...

Please remember not all Simon wessleys patients are only mentally ill.
1. I very innocently attended his hospital. Having little idea what his treatment was about. I found a cutting in the paper and asked my gp to send me.
2. I didn't have any of those terrible illnesses that you have described nearly all the WPI cfs sufferers had. I did however have bad flu and sickness before I got cfs.
Simon wessleys treatment did however give me 1% confidence that these awful ill feelings can't seriously harm me. However his treatment has since made me doubt all everyday physical feelings I have.
I often doubt am I really having period pain or is this really a tooth ache I've got. Also his treatment has convinced me I'm un fit. Even thoughive tried everything to get fit. Heck I'm in my 20s im not un fit so that's Not why I can't Hoover- but yet because of there treatment that's what I believe now.
Also his treatment made me think i'm un stoppable and can keep going. However moving your body with the power of your mind can only work so long untill you can hardly feel reality anymore.
Please please spare a thought for those cfs patience that did see Simon wessley but still might have the real xmrv. And please don't dismiss those who didn't have a serious health problem before cfs on set.

I was a kid I was happy , I had everything yet I caught some flu virus oneday and my life was stopped.

Donna said...

Great article, that explains so much of what UK ME sufferers have been telling us about their plight there. Im SO glad WPI made a quick reply to this poor study as it was starting to get press about XMRV not being a real issue. Thank you!

cinderkeys said...

Thanks for the post. Everyone who knows anything about the history of ME/CFS expected these results from that particular corner. Too bad the news media will report it without any mention of the different patient populations.

Cathy Davis said...

I have a cousin who has ALS, and stem cells are going to be the key to his cure. We follow religion too, but I don't see the harm in taking benefit of new discoveries. Medical science is booming only because people need it and it is high time more research should go on for the newer the treatment methods.

Pris said...

Fantastic post! Even now, with more research and more education (relatively speaking) we still find ourselves in the psychiatric dumpheap. I was a clinical psychologist before this illness got me in 1990. Too many of my colleagues never thought for themselves, but just accepted what came down the pike. I surely hope I would've caught on had I never had ME/CFS.

Adding you to my links.

Anonymous said...

Wessely et al defend themselves here:

Anonymous said...

Stephen Ralph posted this on Co-cure:

"The dogma of the last 20 years has been created by the system that has had
control of "CFS/ME".

If Professor Wessely and his colleagues had no fear of finding XMRV in
patients with a diagnosis of Chronic Fatigue Syndrome then they would not be
frightened of using a selection criteria not used previously ie. the
Canadian Consensus Criteria.

If Lombardi et al were able to effectively utilise the Canadian Criteria as
they were then why were those at Imperial not allowed to use patients
selected the same way?

Surely if one wants to replicate a groundbreaking study with the best
possible source material then one would want to do things in accordance with

The only reason I can see for the failure to replicate the Lombardi patient
selection protocol is that those behind the patients selected for the
Imperial study were actually afraid of the outcome had they used the same
methods for selecting patients.

What other explanation can there be?

Sure it would have taken longer but then that would have prevented the rapid
publication but then again I was always told that if you wanted to do a job
well you should do it thoroughly regardless of rushing yourselves to get a
quick yet flawed result or outcome.

I guess for Imperial that did not come into their deliberations.....

Wessely, Cleare and Collier claim that their patients were not mental health
patients yet time and again Wessely, Cleare, White, Sharpe et al discuss
their patients in terms of mental health perpetuation and treat their
patients with CBT and Graded Exercise.

Two examples of exactly how the "Wessely School" demonstrate their beliefs
surrounding mental health and Chronic Fatigue Syndrome are given in my
previous e-mail that includes the PLOS One comments.

Why exactly were the same old patients chosen for this study?
Why were no severely affected patients chosen who have never had the luxury
of attending a clinic run by Professor Wessely or one of his colleagues?
The 25% ME Group have a membership list of prime candidates all severely
affected patients with G93.3 Myalgic Encephalomyelitis who are too ill to
take part in CBT and Graded Exercise.

Why exclude those too ill to be "regulars" at Professor Wessely's clinic and
why use patients already "screened" by Professor Wessely and his colleagues.

As there are potential conflicts of interest with the involvement of ANY
psychiatrists such as Cleare, Wessely, White, Sharpe et al, why accept a
study that has any involvement of any of the usual collaborators?

This may be unfair but on a very basic level, one XMRV positive patient
previously diagnosed with CFS is one less recruit for a CBT and Graded
Exercise session or indeed one less participant for the PACE trial.

So when are we going to get a genuine replication study that isn't tainted
by any interests that could possibly pollute or distort the outcomes?

Lombardi et al did their work diligently and produced their study over a
period of six months.

Lombardi et al tested their study over three centres of excellence to ensure

All of their work was vigorously assessed by those who published the study
in Science.

They did not on the other hand knock out a "quickie" study in an obscure
journal to grab some misleading news media headlines in the space of only a
few weeks.

If any UK study is to be worthy of any scientific credibility then it has to
be a genuine independent objective replication study with no conflicts of

It has to use the precise patient replication process employing Fukuda AND
the Canadian Consensus Criteria that was so apparently easy to employ by
Lombardi et al yet impossible and overly complicated to use here in the UK...

Anonymous said...


Why the complication - surely those wanting to get it right would want to
make an effort to do it right?

Any studies worth reading are also obliged to use the precise testing and
analysing protocols used by Lombardi et al. such as isolating the white
blood cells to concentrate the sample instead of diluting the samples by
only looking at whole blood.

Anything less would lead any scientist to wonder why a study has
deliberately chosen not to replicate.

Anything less than genuine replication is open to legitimate questions and
deconstruction including the motivations of those deliberately failing to
replicate when there is no real reason why they could not do so.

We live in interesting times and I have a feeling that this is not going to
be the first study from the UK, produced in association with psychiatrists
with vested interests where 0% of patients test using non-replication of
Lombardi et al find their results being plastered all over the media for
superficial but effective political gains at that.

Should we be surprised - absolutely not.
Stephen Ralph DCR(D) Retired."

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Anonymous said...

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