CDC Chronic Fatigue Research Program

[Guest guest]

From: Tom Kindlon

Buried in the following report:

http://www.cdc.gov/cfs/pdf/cdc_cfs_research_program-external_review.pdf

CDC Chronic Fatigue Research Program

External Peer Review

5-7 November 2008

Panel of External Reviewers:

* Boulton, MD, MPH,

* L. Komaroff, MD (Chair),

* Gudrun Lange, PhD,

* Oleske, MD (excused),

* White, MD

is:

Potential areas for development

" The panelists recommend that the CDC program

urgently consider intervention studies to help to

elucidate the direction of causality in the several

pathophysiologies identified by the CDC.

This strategy was not articulated clearly. For

example, since both cognitive behavior therapy and

graded exercise therapies are known to address

some of the abnormalities found, and since both

these therapies have been shown to be efficacious

for CFS, these behavioral interventions should be

seriously considered. Collaborations with providers

and medical schools practised in randomised

controlled trials might provide the best means to

achieve this. "

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As people know, virtually all of the money that has

been given by public agencies in the UK for research

is going to GET and CBT intervention trials. Nearly all

of the rest has been given to other research of the

" CBT School " or " Wessely/Sharpe/Chalder/White

School of Thought " .

There has already been some trials that used a lot of

public funding in the area in the US.

For example, as I pointed out in a message at:

http://tinyurl.com/5be382 i.e.

http://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind0705B & L=CO-CURE & P=R5830 & I=-3

at least $9.9m (I'm not sure of the exact figure) was

spent on: " Cognitive Behavioral Therapy and Aerobic

Exercise for Gulf War Veterans' - Illnesses A

Randomized Controlled Trial "

Such trials can be expensive. For example, Prof.

Sharpe one of the co-organisers of the PACE

Trial in the UK estimated it would cost nearly £ 4m -

all taxpayers money.

A trial of GET don't necessarily get at the core issues

e.g. why people drop-out, what are the

abnormalities. To do them, one needs to study

amongst other things, the abnormal response to

exercise in the condition.

The CDC has already found some interesting results

in the area.

For example, in, " Transcriptional Control of

Complement Activation in an Exercise Model of

Chronic Fatigue Syndrome "

Journal: Mol Med. 2008 Nov 16. [Epub ahead of print]

Authors: Sorensen B, JF, Vernon SD, Rajeevan

MS.

http://www.pubmedcentral.nih.gov/picrender.fcgi?artid=2583111 & blobtype=pdf

amongst other things, they say:

" By contrast, expression of several complement

genes remained at higher level in CFS subjects

before and post-exercise indicating a lack of

acute phase transcriptional response by these

genes which may lead to localized and

uncontrollable inflammation mediated tissue

damage (37). "

I think it is reasonable to speculate that

White, one of only four co-authors of the review,

was involved in this suggestion.

I think it's fair to say that he is obsessed with

graded exercise therapy with regard to the treatment

of CFS. Some doctors may combine it with other

drug methods; he thinks it's sufficient on its own. I

can't think many private doctors in the US would

think the NICE Guidelines are good but he has been

promoting them a lot, etc.

He believes that the condition should be seen as

homogeneous regarding treatment i.e. no antivirals

or other disease altering drugs for anyone, graded

exercise therapy on its own for everyone.

I think people in the US should object to this

suggestion and possibly make use of Prof. White's

background views in any critique.

Also White himself has said, with regard to the

PACE Trial, " No biological measures were

sufficiently well established to justify their use as

outcomes in the trial. "

http://www.biomedcentral.com/1471-2377/7/6/comments

so as I said, I think it is better if they are

" established " before another expensive trial is

undertaken.

Perhaps it could also be mentioned that the report

does not mention commercial payments at least one

person (PDW) received or has received from

insurance companies. Insurance companies, at least

in the UK and Ireland, often put pressure on patients

to do CBT and/or GET programs.

Of course the other major criticism is that there is

no criticism of the empirical definition. Indeed

there is praise of a sort:

" In particular, CDC has led the world in defining

the illness, including improving the quantitative

precision with which the illness is defined-through

development of a standardized case definition.

While some have recently criticised the recent

standardization of the research criteria for CFS,

the panelists believed that the CDC's work on

psychometric operationalization of the existing

1994 case definition should improve the reliability

of research. "

The empirical definition gives a prevalence of 2.54%

or 1 in 40 adults. (And of course because of the way

the CDC excludes patients with other conditions,

some of the " proper " ME or CFS patients may not be

in this group).

The more the CDC uses this definition, the more it is

not just going to be a waste of money, but the more

spurious findings they may find (e.g. early childhood

trauma) as well as the fact that they'll find no

abnormalities in areas where there are almost

certainly abnormalities.

This could be a good time to challenge the CDC,

perhaps through the media, political representatives,

or other means available. Unfortunately, I won't be

able to get involved too much myself as have a lot of

" homework " in Ireland to be doing.

Regards,

Tom Kindlon