Wednesday, November 25, 2009

Current concerns

For the first time since my entire digestive tract was inflamed top to bottom my weight has dropped to under 9 stone (around 57kg) despite my gastric symptoms being ok for me...

( IBS plays up now and then with pain and diarrhea alternting with rabbit dropping constipation, but not hing like it was before I cut out dairy - vomiting every day or food passing through in just a few hours...)

I do have a chronic cough and frequent sweats plus the usual overwhelming fatigue, migraines etc etc so off for a chest x-ray first then god knows what the GP will do next..ho hum

C.F.S. Q&A

Worth a read...

Times Delivers E-Mail - Sign Up:

"When Chronic Fatigue Syndrome Goes Undiagnosed
Q.Dr. Klimas,
Do you have any thoughts as to how many C.F.S. patients are under the radar because they were not eager to sign up for a “wastebasket” diagnosis, or otherwise frustrated out of the medical system early on?
There are many other labels that would be easier to deal with: chronic Lyme, depression, etc. What are the ramifications of an actual clinical diagnostic test for C.F.S. on the medical and patient communities? Can you foresee any possible unintended consequences?

A.Dr. Klimas responds:
Currently only 16 percent to 17 percent of the people with chronic fatigue syndrome whose symptoms are severe enough to meet the case definition for the illness have been diagnosed. Whether this is coming from the patient, as you suggest, or a medical community that does not know how or is reluctant to make the diagnosis is less clear."

Monday, November 16, 2009

More evidence of inflammation in (ME)CFS

Margaret Williams 14th November 2009

In his presentation in Bergen on 20th November 2009, Professor Peter White's
power point slides state about (ME)CFS that maintaining factors include
illness beliefs, the search for legitimacy, being on benefits, and the
diagnostic label, and that immune or viral measures are NOT involved in the
maintenance of the disorder

( ).

White's assertion that immune or viral measures are not involved in the
maintenance of the disorder would seem to be a direct denial of the evidence
of two of the world's leading immunologists who specialise in ME/CFS,
Professors Mary Ann Fletcher and Nancy Klimas, who recently published yet
more confirmatory evidence of immune dysfunction in the maintenance of the
disorder (Journal of Translational Medicine 2009:7:96:
doi:10.1186/1479-5876-7-96). Their peer reviewed article was published
immediately upon acceptance.

Fletcher and Klimas et al are clear that cytokine abnormalities are common
in (ME)CFS and that the cytokine changes observed are more likely to be
indicative of immune activation and inflammation, rather than specific for
(ME)CFS, as people with fibromyalgia, Gulf War Illness, rheumatological
disorders and multiple sclerosis may also have similar cytokine patterns.
...."The elevations in LTa, IL-1a, IL1b and IL-6 indicate inflammation, likely
to be accompanied by autoantibody production, inappropriate fatigue, myalgia
and arthralgia, as well as changes in mood and sleep patterns.

"This study is among the first in the (ME)CFS literature to report the
plasma profiles of a reasonably large panel of cytokines assessed
simultaneously by multiplex technique.

"Cytokine abnormalities appear to be common in (ME)CFS. The changes from the
normal position indicate immune activation and inflammation.

"The results imply a disorganised regulatory pattern of TH1 function,
critical to antiviral defence.

"The results from this study support a TH2 shift, pro-inflammatory cytokine
up-regulation and down-regulation of important mediators of cytotoxic cell

Since it is now unequivocal that people with (ME)CFS show markers of
inflammation, what will be the impact on the Wessely School's MRC PACE Trial
that is predicated on the assumptions of deconditioning, on the "perception"
of effort and on aberrant illness beliefs and whose participants are
instructed about "sleep hygiene"?

Sunday, November 15, 2009

Chronic fatigue syndrome: neurological, psychological or both?

Chronic fatigue syndrome: neurological, psychological or both?

Peter White, Professor of Psychological Medicine, Barts and the London Medical School

A long read but well worth it


Neurology and Psychiatry SpRs Teaching Weekend

12 to 14 December 2008 St Anne's College - Oxford




09:50 Chronic fatigue syndrome: neurological, psychological or both?

Peter White, Professor of Psychological Medicine, Barts and the London
Medical School

The extract I am appending is a summary of Professor Peter Denton White's
presentation (Page 46 of PDF) in which he talks about the taxonomy of CFS
"being a mess".

During his Royal Society of Medicine "CFS" Conference presentation, in
April 2008, White had said, ominously:

"...So ICD-10 is not helpful and I would not suggest, as clinicians, you
use ICD-10 criteria. They really need sorting out; and they will be in due
course, God willing."

See unofficial transcript of part of White's RSM presentation, here, in
which he presents his thoughts on current ICD taxonomy:

Prof Peter White discouraging RSM Conference from using ICD-10:

In an April 2009 paper, co-authored by White, the authors propose a change
to current ICD-10 codings:

Psychological Medicine Preprint "Risk markers for both chronic fatigue and
irritable bowel syndromes: a prospective case-control study of primary

In the section "Implications for Further Research" the authors state that
because the paper finds that:

"These data also suggest that fatigue syndromes are heterogeneous
(Vollmer-Conna et al. 2006), and that CFS/ME and PVFS should be considered
as separate conditions, with CFS/ME having more in common with IBS than
PVFS does (Aggarwal et al. 2006). This requires revision of the ICD-10
taxonomy, which classifies PVFS with ME (WHO, 1992)"


Extract: presentation given at Neurology and Psychiatry SpRs Teaching

Chronic fatigue syndrome: neurological, psychological or both?

Peter White, Professor of Psychological Medicine, Barts and the London
Medical School

Epidemiology of fatigue and CFS

Fatigue is a common symptom in both the community and primary care. When
asked, between 10 and 20 per cent of people in the community will report
feeling abnormally tired at any one time.

At the same time, fatigue is continuously distributed within the community,
with no point of rarity.

Therefore any cut-off is arbitrary and the prevalence will vary by how the
question is asked, the symptom volunteered, and its context. Between 1.5 %
and 6.5 % of European patients will consult their general practitioner with
a primary complaint of fatigue every year, the incidence varying by age and
population. Fatigue is more commonly reported and presented to general
practitioners by women and the middle-aged, and is most closely associated
with mood disorders and reported stress. It does not seem to vary by
ethnicity in the UK, but there is an intriguing paradox in that it is
reported more commonly by those in high income countries, yet is presented
to medical care more often in low income countries.

Prolonged or chronic fatigue is significantly less common than the symptom
of fatigue and it is only in the last 10 years that consensus has emerged
about the existence of a chronic fatigue syndrome (CFS), also called
myalgic encephalomyelitis (ME). CFS is now accepted as a valid diagnosis by
medical authorities in the UK, in the United States of America, as well as
internationally. About one third of patients presenting to their doctor
with six months of fatigue will meet criteria for a chronic fatigue
syndrome. The other two thirds have fatigue secondary to another condition,
most commonly mood and primary sleep disorders. Its primary symptom is
fatigue, both physical and mental, which particularly follows exertion.
Other symptoms agreed in consensual guidelines include poor concentration
and memory, sleep disturbance, headache, sore throat, tender lymph glands,
muscle and joint pain.

There are several criterion based definitions of CFS. These definitions
were derived by consensus and have not been supported by empirical studies,
and continue to be refined. Their utility stems from providing reliable
criteria for research studies, rather than clinical use. The prevalence of
CFS is between 2.5 % and 0.4 % depending on the definition used and whether
comorbid mood disorders are excluded (that is mood disorders that are not
thought to be the primary diagnoses). It is most common in women, the
middle-aged, and ethnic minorities (unlike fatigue) - at least in English
speaking countries.

The diagnosis and classification of CFS

The clinical taxonomy for CFS is a mess. The ICD-10 classification defines
CFS within both the neurology chapter and mental health chapters. Myalgic
encephalomyelitis, the alternative name for CFS, is classified as a
neurological disease (G93.3) (a.k.a. post-viral CFS), whereas neurasthenia
(a.k.a. CFS not otherwise specified) is classified within mental health

[Ed: Note that White does not mention, here, that Chronic fatigue syndrome
is listed in ICD-10: Volume 3, The Alphabetical Index* at G93.3, the same
coding as for Benign myalgic encephalomyelitis, and for Postviral fatigue
syndrome (ICD-10: Volume 1: The Tabular List).]

Friday, November 13, 2009

comments on meeting of the Chronic Fatigue Syndrome Advisory Committee

One patient wrote to me recently describing her immense relief: she had been afraid she would die without ever finding out what was wrong with her.

I imagine many thousands—maybe hundreds of thousands of others—who fell ill in the epidemic years of the 1980s, felt the same. I know I did. The question was never whether we were ill with one of the worst diseases imaginable—it was whether we could ever learn the answer to the great mystery, the actual cause, the pathogen, before we dropped dead of it. And now it has been clarified: twenty-five years of retroviral infection, untreated, ignored, laughed at, allowed to wreak havoc, allowed to spread until penetration in the general population may have reached four percent—give or take.



Dr. Vincent Lombardi, the primary investigator and first author on a paper that appeared in the 8 October 2009 issue of “Science”, is the Director of Operations for the licensing and development of the XAND test assays used by VIP Dx for the detection of XMRV. To read this landmark publication, 'Detection of an Infectious Retrovirus, XMRV, in Blood Cells of Patients with Chronic Fatigue Syndrome', please go to ( We are pleased to announce that VIP Dx has licensed this technology allowing us to offer the most accurate and sensitive testing available for XAND (XMRV associated neuro-immune disease).
To learn more about our XMRV tests, CLICK HERE."



A recent review of the relevant scientific literature shows that the
"revalidation therapies" for patients with ME/CFS, which are monopolized by
the governmental institutions for example in the UK, Belgium and the
Netherlands, are not only not efficient, but also aggravate the condition of
many patients.

Antwerp (Belgium); Limmen (the Netherlands), October 27th, 2009.

ME/CFS is a debilitating disease, affecting many biological systems.
According to the CDC, the level of impairment of ME/CFS patients is often
comparable to that of patients with some well-known, very severe medical
conditions, such as MS, AIDS, end-stage renal failure, and chronic
pulmonary disease.

There is now sufficient evidence that ME/CFS is a disorder that
primarily involves an inflammation with dysregulated and suppressed
immune functions, oxidative stress, infections, autoimmunity and
mitochondrial dysfunction. During the last few years, many scientific
including gene expression research, have confirmed that patients with
ME/CFS suffer from the above organic disorders.

Despite several major scientific breakthroughs, ME/CFS is still
described in the popular media as a medically unexplained disorder.
Psychotherapy (cognitive behavioral therapy) and graded exercise therapy
(GET) are declared to be the only possible therapies.

A thorough analysis of the current medical scientific literature and
international patient surveys, however, shows that CBT/GET is not only
ineffective for the majority of the ME/CFS patients, but also potentially
harmful. Scientific studies and large-scaled patient surveys have shown that
treatments with CBT/GET seriously deteriorate the condition of many patients
with ME/CFS. The work capacity decreased as well!

The review also explains why GET and exercise do aggravate
characteristic complaints, like “fatigue”, pain, neurocognitive problems
concentration and memory). Pre-existing biological aberrations, e.g.
inflammation, oxidative stress, and dysfunctional ion channels, will be
amplified by a minor exertion, like walking or reading a book … and by
“rehabilitation therapies” like CBT/GET.

The reviewers urge policy makers to change their policies drastically,
by putting a stop to potentially harmful and ineffective "rehabilitation"
programs, and investing into medical research and therapies targeted at the
immune system, infections and other pathological aspects of this horrible
/wasting disease.


Twisk FNM, Maes M. A review on Cognitive Behavorial Therapy (CBT) and
Graded Exercise Therapy (GET) in Myalgic Encephalomyelitis (ME) / Chronic
Fatigue Syndrome (CFS): CBT/GET is not only ineffective and not
but also potentially harmful for many patients with ME/CFS. Neuro
Endocrinol Lett. 2009 Aug 26;30(3):284-299.

Maes M, Twisk FNM. Chronic fatigue syndrome: la bête noire of the Belgian
health care system. Neuro Endocrinol Lett. 2009 Aug 26;30(3):300-311.

Frank Twisk MBA BEd BEc
Stichting ME-de-patiënten / ME-de-patiënten Foundation
Zonnedauw 15
1906 HB Limmen
Nederland / the Netherlands
Tel. +31-(0)72-505 4775 (here you can download the full text)