35% of their patients are CURED

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12 May 2002

Editorship: j.van.roijen@...

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35% of their patients are CURED

----------------------------------------------

Reference: ''CFS/ME Report -Correspondence Lancet'' -

Co-Cure, 10 May 2002.

In one of the three letters in the Lancet about the -The Chief

Medical Officer Working Group's report on CSF/ME - Dr. Abhijit

Chaudhuri state:

''.....In my practice, the designation CFS/ME identifies patients

with a fatiguing illness due to a neurological disorder, (2)

similar to postpolio fatigue or multiple sclerosis. Patients with

myalgic encephalopathy are clinically distinct from those with

chronic fatigue due to psychiatric disorders, such as

depression, phobic anxiety, or somatisation, who may also fulfil

the diagnostic criteria for CFS. (3) Overlap exists in some

cases, but distinguishing neurological from psychiatric patients

is probably as important as the distinction between the broad

classifications of chronic headache, dementia, or Parkinsonian

syndromes not least because therapeutic approaches may

differ....''

and:

''...Therapeutic approach to CFS/ME is another contentious

issue in this report rather than simply an unpalatable truth. I

advise only pacing as a specific strategy for my CFS/ME

patients, but should I now recommend cognitive behaviour

therapy, graded exercise therapy, or both? I have my

reservations for several reasons. Graded exercise therapy is

associated with worsening of symptoms in nearly 50% of

CFS/ME. (4)

In addition, patients' satisfaction with cognitive behaviour

therapy is rather low. (5) Secondly, these treatments have

seldom been advocated in managing fatigue in neurological

disorders. Third, their role for people with severe CFS/ME is

unclear. Given the size of the long-standing and severely

disabled CFS/ME population, these interventions may not offer

realistic hope to many, and cost may not differ greatly from

pacing, general rehabilitation, and regular contact with

understanding physicians and therapists.....''

********************

Judith B Prins, Gijs Bleijenberg and Jos W M van der Meer

from the Dutch University Nijmegen, who are fanatic followers

of the " Wessely School " have another idea about this

subject; they say:

''.....We agree that this treatment may not be a cure for all CFS

patients, but it certainly has been for at least 35% of those who

fulfilled the stringent criteria for recovery in our trial. (3)

Recovered patients returned to work and other activities.

Everyday bodily signs and symptoms were no longer

interpreted as indicating CFS. Most importantly, these people

no longer labelled themselves as having CFS. If this is not cure,

what is?.........''

------------

They refer (3) to their own publication: Prins JB, Bleijenberg G,

Bazelmans E, et al. Cognitive behaviour therapy for chronic

fatigue syndrome: a multicenter randomised controlled trial.

Lancet 2001; 357: 841-47

This article can be found at:

http://www.thelancet.com/journal/vol357/iss9259/full/llan.357.9259.original_rese\

arch.15523.1

The criteria used in this study:

" ...Patients were eligible for the study if they met the US

Centers for Disease Control and Prevention criteria for

CFS,1 WITH THE EXCEPTION of the criterion requiring four

of eight additional symptoms to be present....... "

These eight additional criteria are: impaired memory or

concentration, sore throat, tender cervical or axillary lymph

nodes, muscle pain, multi-joint pain, new headaches,

unrefreshing sleep, post-exertional malaise.

In these US Centers for Disease Control and Prevention

criteria is clearly stated:

''...If a patient's fatigue is not severe enough, or if the symptom

criteria for CFS are not met, he or she will be classified as

having IDIOPATHIC CHRONIC FATIGUE....!!!''

It is therefore not surprising, that the MEAN Karnofsky scale of

the selected patients was 71.5. So there must also have been

many patients with a much higher Karnofsky scale:

80 = Normal activity with effort: some symptoms of disease

90 = Able to carry on normal activity: minor symptoms of disease

100 = Normal, no complaints, no evidence of disease.

This research of ''Nijmegen'' is Monkey Business. The ''cured''

patients were of course no ME/CFS patients at all, but patients

with idiopathic chronic fatigue; '' ...due to psychiatric disorders,

such as depression, phobic anxiety, or somatisation, who may

also fulfil the diagnostic criteria for CFS.... " (Chaudhuri above)

Later on Prof. Van der Meer claimed in a TV program

(Noorderlicht), that if he should leave out patients, who are

engaged in a lawsuit for health insurance, he could CURE 70%

of the patients. [ In the same program Dr. P De Becker (VUB

University - De Meirleir - Brussels) said: ''The patients which

we are treating in Brussels, are not of the same kind as those

at the clinic of Nijmegen''. ]

**********************

The University of Nijmegen is for ME/CFS, the most influential

organisation for medical journals, the media and governmental

institutes in the Netherlands. Their credo for more then ten

years: no biological abnormalities and the best treatment is a

''biopsychosocial'' (?) approach with cognitive behaviour therapy

and graded exercise.

The situation for ME/CFS patients is therefore dreadful in this

country. The majority of the physicians (GP's and Specialists)

don't know anything about this neurological disorder. In the

most important university hospital in Amsterdam, it is even

forbidden to treat ME/CFS patients.

There never has been done a good prevalence study, but with

a population of 16 million people, there must be at least 30.000

- 80.000 CFS patients. The LISV (a governmental institute for

social insurance) announced this year, that there are 500 (!)

ME/CFS patients, who get a health insurance.

Last year several ME organisations have presented a rapport

to the government about the rising social expenses for this

disorder. This made the government nervous and the Minister

of Health has promised 3 million Euro's for research. The

''Gezondheidsraad'' (advisory committee for important health

affairs) will advise, which kind of research will be subsidized.

And who is an important member of this advisory committee?

Yes: dr JWM van der Meer. He is a councillor of the board

''Infection and Immunity'' (vice-president) and of the board

''Medical Science''.

And who, do you think, will gather in the biggest part of the 3

million Euro's.......?

I'm very concerned about the treatment of ME/CFS patients in

this country for the next coming ten years.

Jan van Roijen

*******************************

Dr. Ellen Goudsmit has the following comment on the

correspondence in the Lancet:

There are two positive letters in today's Lancet (Colby and

Chaudhuri) and the usual tosh from Nijmegen. (35% of their

patients are CURED after CBT. Sure they are!) They also

show a distinct lack of knowledge of pacing as a concept, as

well as a lack of respect for their fellow psychologists who have

been studying this for 10-20 years. But as you recall, these

people are after a couple of million euros for their own clinics.

So they have to plug their chosen approach. Gone are the days

when 'scientists' felt obligated to stick to facts and to avoid

hype.