Re: Dr Cheney Connecticut Interview - A question

February 19, 2006

Thanks I knew there were some really really bad apples in Belgium but I

didnt know who they were. Thanks for the info on Van Houdenhove

kevin_be2001 <kevin_be2001@...> wrote: Hi Cortt,

I live in Belgium and I think that the second study wasn´t done on

real cfs patients.

It was done by Boudewijn Van Houdenhove, a psychiatrist, he is well

known here for his views on cfs and throughout the years he has done

a lot of harm for cfs patients.

About ten years ago he said that cfs was linked with childhood abuse

and all kinds of trauma. The last few years he talks about people

with cfs being unable to cope with the demands of modern society and

social and family life and that they have a de-regulated stress

system.

He is very shrewd with what he says in interviews, he will never

openly say that people with cfs have an attitude problem and are

uncapable of holding their own in life, but when you read between

the lines this is what it basically comes down too.

He of course uses graded exercise therapy and behaviour therapy.

He has his own psychosomatic department at the university of Leuven

and he advises our parliament on cfs and is very influental.

He writes lots of books with titles like " Tired in Times of Stress "

and he says the RNASE-L test is a pseudo objectifying strategy.

He most likely works with people who have psychological problems and

who are depressed and because they are also tired he can get away

with saying they have cfs and use them in every study he can with

the intent to show that there are no physical abnormalities in cfs

and that it is all psychological.

So I think we can strike out that study as having any value.

Take care,

>

> Thats quite a story! Just so you know where I'm coming from with

this fludrocoritsone stuff - all I have is studies cited on

PubMed. They obviously dont explain the range of CFS

experience...too many people have stories like yours but that is

where I get my info. Heres what I have with regards to that - two

studies that did not show a difference overall in CFS. Obviously

it made a big difference for you...but thats what doctors like

Cheney are for - to figure out what works for who.

>

> Fludrocortisone acetate to treat neurally mediated hypotension

in chronic fatigue syndrome: a randomized controlled trial.

>

> Rowe PC, Calkins H, DeBusk K, McKenzie R, Anand R, Sharma G,

Cuccherini BA, Soto N, Hohman P, Snader S, Lucas KE, Wolff M, Straus

SE.

>

> Departments of Pediatrics and Medicine, s Hopkins Hospital,

600 N Wolfe St, Baltimore, MD 21287, USA.

>

> CONTEXT: Patients with chronic fatigue syndrome (CFS) are more

likely than healthy persons to develop neurally mediated hypotension

(NMH) in response to prolonged orthostatic stress. OBJECTIVE: To

examine the efficacy of fludrocortisone acetate as monotherapy for

adults with both CFS and NMH. . CONCLUSIONS: In our study of adults

with CFS, fludrocortisone as monotherapy for NMH was no more

efficacious than placebo for amelioration of symptoms. Failure to

identify symptomatic improvement with fludrocortisone does not

disprove the hypothesis that NMH could be contributing to some of

the symptoms of CFS. Further studies are needed to determine whether

other medications or combination therapy are more effective in

treating orthostatic intolerance in patients with CFS.

>

> Am J Med. 2003 Jun 15;114(9):736-41. Related

Articles, Links

>

> Combination therapy with hydrocortisone and fludrocortisone does

not improve symptoms in chronic fatigue syndrome: a randomized,

placebo-controlled, double-blind, crossover study.

>

> Blockmans D, Persoons P, Van Houdenhove B, Lejeune M, Bobbaers H.

>

> Department of General Internal Medicine, University Hospital

Gasthuisberg, Leuven, Belgium. .Blackmans@...

>

> PURPOSE: Chronic fatigue syndrome has been associated with

decreased function of the hypothalamic-pituitary-adrenal axis.

Although neurally mediated hypotension occurs more frequently in

patients with chronic fatigue syndrome than in controls, attempts to

alleviate symptoms by administration of hydrocortisone or

fludrocortisone have not been successful. The purpose of this study

was to investigate the effect of combination therapy (5 mg/d of

hydrocortisone and 50 microg/d of 9-alfa-fludrocortisone) on fatigue

and well-being in chronic fatigue syndrome. METHODS: We performed a

6-There were no differences between treatment and placebo in patient-

reported fatigue or well-being There were also no between-group

differences in fatigue measured with the Abbreviated Fatigue

Questionnaire, the Short Form-36 Mental or Physical Factor scores,

or in the Hospital Anxiety and Depression Scale. CONCLUSION: Low-

dose combination therapy of hydrocortisone and fludrocortisone was

not effective in

> patients with chronic fatigue syndrome.

>

This list is intended for patients to share personal experiences with each

other, not to give medical advice. If you are interested in any treatment

discussed here, please consult your doctor.

February 19, 2006

I've some interesting stuff about Belgium, I wonder if you would be interested

in doing a 'Report from Belgium'? It would consist of the below questions and

would appear in an edition of the Phoenix Rising newsletter. Please let me know

what you think, Thanks, Cort

The questions I have are.

How long have you had CFS?

How well is CFS known in Belgium? If you mention you have CFS to someone do

they know what it is? What are their general mpression of it?

Does the Belgium government recognize CFS as a disability? Are people who

have CFS able to get government support?

In your experience how well informed are doctors about CFS? Do they

generally view it as a 'real disease' with a biological underpinnings or do they

tend to think it has a psychological basis?

What kinds of treatments are available in Belgium for CFS? Are alternative

minded doctors readily available or do you mainly have access to more

traditional physicians.

If see a supplement on the internet are you likely to be able to find it in

your country?

Do you have a sense of how active the CFS 'community' is there? Are there

many support groups?

Is there much research that you are aware of occurring in Belgium?

kevin_be2001 <kevin_be2001@...> wrote:

Hi Cortt,