Wednesday, January 7, 2009

Reeves' definition of CFS is a Useless Melange

I suggest that CFS-Reeves should be called "chronic illnes melange" (CIM)

Since the CFS-Reeves definition started to be used, it is quite a mess in
order to sort out which article has used which definition, and what
definition that have been used in the articles that the article referes to.
Ultimately this puts the validity of the research at risk.

If things would work properly in this world, CFS-Reeves should to be called
something else than CFS, because it is a supergroup to something that is
already defined. It is like calling all mammals for apes. Only because apes
are a subgroup of mammals, it does not mean that all mammals are apes.

I have modified my earlier document about categorization (   ) slightly. I suggest that
CFS-Reeves should be called "chronic illnes melange" (CIM) instead of CFS.

"Reeves definition should not have been allowed to be referred as CFS, but
instead for example "chronic illness melange". "

/Kasper (  )

My messages about definition in chronographic order

Use the Canadian criteria 2003 for CFS in the USA
June 22, 2008  

Resolution in order to make cohorts less heterogeneous
1st of September 2008  

How to categorize ME and CFS
October 23, 2008  

CFS is no longer CFS, and it was never ME
5 December 2008
* * *
I agree with Kaspar 100%.  We've seen innumerable "CFS" studies in which it is apparent that they are studying everything else but.  Most often, depression and other fatiguing psychiatric conditions.  Things which lack the hallmark of "exercise intolerance" that identifies Real CFS, i.e., the disease that struck Incline Village/Lake Tahoe.  Selection criteria that select out those of us who have "Tahoe Disease" in favor of those who are depressed with none of the physical abnormalities that are inherent in "Tahoe Disease".
On the surface, Reeves, Wessely et al. seem to be proving that CFS is just a psychiatric condition, but when you read more deeply (as Tom Kindlon is wont to do), you realize that what they have actually proved is that depression is depression, as none of their subjects have what we have.

Tuesday, January 6, 2009

Tom's notes on childhood trauma in "CFS"

To me on, the basic design of the study:

Childhood Trauma and Risk for Chronic Fatigue Syndrome: Association
With Neuroendocrine Dysfunction

Journal: Arch Gen Psychiatry. 2009;66(1):72-80.

Authors: Christine Heim, PhD; Urs M. Nater, PhD; Elizabeth Maloney, MS,
DrPH; Roumiana Boneva, MD, PhD; James F. Jones, MD; William C. Reeves, MD,

looks fine except for one major flaw, the definition of Chronic Fatigue
Syndrome used
(however I'm happy to be corrected that there are other

A problem is that for most readers of the study, they won't even be aware
that the authors aren't using the Fukuda definition as normally defined but
are using the "empirical" defintion (Reeves, 2005) version of the Fukuda

I'm appending the text below (see Appendix 1).

There are no direct references to the Reeves (2005) empiric definition paper
so as I say, most people won't know how unusually CFS is defined.  All one
basically has is the reference to paper 3

3. Reeves WC, Jones JF, Maloney E, Heim C, Hoaglin DC, Boneva RS, Morrissey
M, Devlin R. Prevalence of chronic fatigue syndrome in metropolitan, urban,
and rural Georgia. Popul Health Metr. 2007;5:5.

where one would see that the emperic definition was used.

But how many people are going to notice that?

The other point of note is that despite the paper appearing quite a
comprehensive review of the area, there is actually no mention of:

Sexual abuse, physical abuse, chronic fatigue, and chronic fatigue
syndrome: a community-based study.
Taylor RR, Jason LA.
J Nerv Ment Dis. 2001 Oct;189(10):709-15.
(Appendix 2 contains the abstract)

The authors would be aware of the study as four of them were involved in:

Early adverse experience and risk for chronic fatigue syndrome: results from
a population-based study.
Heim C, Wagner D, Maloney E, Papanicolaou DA, Solomon L, Jones JF, Unger ER,
Reeves WC.
Arch Gen Psychiatry. 2006 Nov;63(11):1258-66.
PMID: 17088506

which had the following quote:

"The only published
community-based study on the relationship
between childhood adversity and CFS assessed sexual
and physical abuse in one question each and did not
find significant associations with CFS
.30 However,
chronic fatigue cases diagnosed as having a primary
psychiatric disorder were treated as a separate group in
this study, and rates of abuse were markedly elevated in
this group
. Unfortunately, these psychiatric disorders
were not specified, and it remained unclear whether
these disorders corresponded to those defined as exclusionary
for CFS in the 1994 research case definition. In
a subsequent report based on the same sample,31 childhood
abuse was found to predict fatigue and anxiety
disorders, including PTSD, which are not exclusionary
of CFS. In sum, the association between childhood
adversity and the risk for CFS warrants further investigation.
The failure to use psychometrically validated
dimensional instruments to measure multiple types of
childhood trauma has been a particular difficulty in previous
studies of CFS.27-30"

To not make readers aware of this study seems strange in the current study
which includes 49 references.  There aren't exactly many random community
studies in the area.

The current paper also gives an idea of the background of Christine Heim
before her involvement with the CDC CFS program (she is involved in a lot of
their studies now) which the team were probably aware of before the start of
the involvement:

"Based on these considerations, we suggest that hypocortisolism
as a consequence of childhood trauma might be
a preexisting risk factor that is associated with failure of
the organism to adapt and compensate in response to challenge
and thereby promotes the development of CFS and
associated emotional and somatic disorders.11"

11. Heim C, Ehlert U, Hellhammer DH. The potential role of hypocortisolism
in the
pathophysiology of stress-related bodily disorders.

"Dysfunction of the HPA axis characterized
by lower-than-normal cortisol secretion is one of the
hallmark biological features of CFS.11,12 Of note, similar hypocortisolism
has also been observed in animal models of
early-life stress16,17 and in adults with childhood adverse

18. Heim C, Newport DJ, Bonsall R, Miller AH, Nemeroff CB. Altered
axis responses to provocative challenge tests in adult survivors of
abuse. Am J Psychiatry. 2001;158(4):575-581.

"The salivary cortisol response
to awakening has received considerable scientific attention34,35
and has been shown to be sensitive to detect HPA
axis dysregulation related to stress and disease, including CFS36-38
and early adverse experience.39,40"

39. Meinlschmidt G, Heim C. Decreased cortisol awakening response after
early loss
experience. Psychoneuroendocrinology. 2005;30(6):568-576.

I hope all the media coverage this study is getting will encourage others to
do something to challenge the use of the Reeves 2005 "empiric" definition
for 2005.  The literature is going to be even more of a mess if it continues
to be used.

Tom Kindlon

Appendix 1.

"Subjects were diagnosed with CFS if they met criteria of the
1994 case definition21 as applied following recommendations
of the International Chronic Fatigue Syndrome Study Group
regarding measurement of the major illness domains.22 Subjects
completed a series of rating scales to assess symptoms of
CFS and functioning, including the 36-Item Short Form Health
Survey,24 the Multidimensional Fatigue Inventory,25 and theCDC
Symptom Inventory.26 Classification as a current CFS case was
based on cutoff scores in these rating scales with respect to the
3 dimensions of CFS specified in the case definition, ie, impairment,
fatigue, and accompanying symptoms.3 Subjects meeting
these criteria at the time of the study were classified as having
CFS (n=113). Subjects who met no criteria were classified
as well (n=124). By definition, case and control groups differed
on all scales (all P<.001) (details in the article by Reeves
et al3)."


Appendix 2

This study wasn't referred to:

Sexual abuse, physical abuse, chronic fatigue, and chronic fatigue
syndrome: a community-based study.

Taylor RR, Jason LA.

J Nerv Ment Dis. 2001 Oct;189(10):709-15.

Department of Occupational Therapy, University of Illinois at
Chicago, 60612, USA.

Using a randomly selected community-based sample, this investigation
examined whether histories of childhood sexual, physical, and death
threat abuse predicted adulthood outcomes of specific medical and
psychiatric conditions involving chronic fatigue. This study also
tested prior suggestions that most individuals with chronic fatigue
syndrome report a past history of interpersonal abuse. Multinomial
logistic regression was used to examine the relationship between
abuse history and chronic fatigue group outcomes while controlling
for the effects of sociodemographics. Compared with healthy controls,
childhood sexual abuse was significantly more likely to be associated
with outcomes of idiopathic chronic fatigue, chronic fatigue
explained by a psychiatric condition, and chronic fatigue explained
by a medical condition. None of the abuse history types were
significant predictors of chronic fatigue syndrome. A closer
examination of individuals in the chronic fatigue syndrome group
revealed that significantly fewer individuals with CFS reported abuse
as compared with those who did not.
The implications of these
findings are discussed.

PMID: 11708672

It really IS all in your head (sort of)

Over the years, I’ve been labelled with "depression", "anxiety", "hypochondria" and "over-active imagination" by doctors who couldn’t be bothered to figure out what was really wrong. When I was married, my symptoms were blamed on resenting my husband telling me what to do and when I was divorced, not having a husband was the cause of them; I’ve heard from numerous other female patients that, whatever their marital status, they’re told the solution is to change it – if you’re married, divorce him; if you’re divorced, get remarried.

And heaven help you if you’re a middle-aged never-married woman! They’re sure you’re just depressed because you’re an old maid, and that you’re an old maid because you’re a whiner and a hypochondriac and scared off all the men who might have married you.

In fact, every time doctors have taken the time to search out the root of the problem, they’ve found something very wrong with me.

The pain was not somehow all in my head – it was in my fractured spine. When that was treated, my pain was substantially reduced. Handing out psychiatric drugs is not the correct treatment for broken bones under any circumstances. But because I had that prior CFS diagnosis, all I was given was Advil and anti-depressants, and a line of BS that it couldn’t possibly hurt that much, they weren’t going to give me pain pills because I might become addicted to them, just ignore the pain. Anyone else with a fractured spine would’ve been put in traction and kept there for weeks to make sure it didn’t get worse and paralyze them; I was being encouraged to do all the things that a spinal fracture patient should never do, because no one thought it necessary to look for the cause of the pain.

The generalized not feeling well also was not all in my head. Eventually, someone did a non-specific blood test for inflammation/infection. That test didn’t identify precisely what virus was causing the problem, but it proved beyond a shadow of a doubt that there was something going on in my body, not my head. It had nothing to do with my marital status at all.

The fact is, these quacks are half-right. The problem with CFS really is "in your head", just not the way they think. Brain scans and MRIs show a variety of problems in the brain, ranging from lesions to reduced blood flow. Neurological testing shows abnormalities. Autopsies have shown viral damage to the brain and spinal cord. Those things can’t be caused by someone just deciding that they don’t want to work any more.

I am here and writing this blog despite doctors, not because of them. They very easily could have killed me on a number of occasions with their complete ignorance of what CFS is and how it can be treated.

More than 3/4 of CFS patients report bad experiences with doctors, doctor-recommended treatments making them worse – some have even committed suicide because doctors refused to take their complaints seriously. As would anyone else with chronic pain that’s left untreated because the doctor has all sorts of crackpot theories about how you can fix it yourself without medication; it’s a wonder we don’t have more CFS/fibro patients jumping off bridges and putting their migraine-y heads on railroad tracks to avoid another 20 years of non-stop pain, and verbal abuse from the people they rely on to ease the pain.

Yet, when the patient turns snarky on the doctor and hands out the same verbal abuse she’s getting, the doctor starts *itching about respect. Nope, you’ve got to EARN my respect, and you’re not earning it by treating me with disrespect and contempt.

Monday, January 5, 2009

What's in a Name?

"Some people think that if they change the names of
things, the things themselves will have changed, too."
                               David O. McKay
CDC changed the name of Myalgic Encephalomyelitis to CFS, thinking that if they changed the name, they could make the disease less troublesome.
All they did was make it less troublesome to the government and insurance companies.  It didn't solve the problems suffered by patients.  In fact, it made the problems worse, since everyone interpreted it as simple fatigue -- as Dr. John calls it, TATT, Tired All The Time -- the connection to other encephalo- and -myelitis diseases was (intentionally) lost.
What the name change achieved was a bunch of irate patients, the formation of activist groups which hadn't existed when it was called ME.

Calgary Conference Podcasts now available

Dr. Ellie Stein has just announced the following:

Great News, the podcasts of the CME course and the Public Lecture
are now freely available on the U of Calgary website.  I have tried
each one and they seem to be working.  I can't seem to fast forward
though.  One has to allocate time to listen all at once (at least
for each segment).

Lydia E. Neilson, M.S.M.
Chief Executive Officer
National ME/FM Action Network
512 - 33 Banner Road
Nepean, ON K2H 8V7 Canada
Tel. (613) 829-6667     Fax (613) 829-8518
Web: www.mefmaction