In 2 previous articles (link, link) I explored the reasons why, according to me, a successful action by a patient movement didn’t get the attention it deserved by the media. To my surprise, a rather questionable organization, the CFS Society, did manage to get some media attention.
On Friday July 8, 2011 an article “Van klagen word je niet beter” (“Complaining will not make you better“) was published in “Het Nieuwsblad” (most popular newspaper in Belgium). In this article Stefan Pasture explains how he overcame CFS and what he wants to achieve with his CFS Society.
How is it possible that this article made the news? First of all, the article only appeared in the regional section of the newspaper, so only the people living in and around Leuven could read it. It also appeared online and in “De Streekkrant”, a local paper for Leuven. Stefan Pasture lives in that region and the journalist mostly writes about that region. Maybe they know each other.
KISS
Another reason why it might have been published, is because it is based on the KISS-principle: “Keep It Simple, Stupid”.
I have already provided a link to the original article and to the Google translation, but now I will try to recount the story in my own words.
Once upon a time there was a principal who loved life very much. He couldn’t get enough of it. He worked hard and had lots of hobbies. He lived life at 200 km an hour (maximum speed on Belgian highways is 120 km/h). Suddenly things weren’t going so well anymore. He became more and more fatigued. Dark clouds gathered over his carefully planned life. And finally he became too sick to work and to live that life.
He wanted to get well again. He started on a new quest towards the light. He went to lots of different doctors, therapists and psychiatrists and tried lots of different treatments. Finally he found some treatments (cognitive behavioral therapy, mindfulness, dolphin therapy, deer therapy, cranio sacral therapy) that helped him overcome the darkness that had engulfed him. It gave him a new life, a different life not as intense as before, but for which he is CFS grateful. It also gave him a new mission, namely to help fellow patients.
He now has a couple of deer in his backyard and they lived happily ever after.
Now you try to explain the Canadian Consensus Criteria for ME/CFS or the International Consensus Criteria for ME with such a simple story.
After reading the article and his website, I fail to identify with him. My first impression was, and I am not alone in this, that this is not about CFS, let alone ME/CFS. To me it sounds like he had a burn-out. Patients tend to ridicule or make fun of his organization, because it is clear to us after reading his site and other patient testimonials on his site that it is not about ME/CFS. You see that and I see that, but the majority of the people won’t see the difference, including doctors, journalists and politicians. It would be a very bad move to underestimate the influence he can have on the policy towards CFS (ME/CFS, ME) in Belgium:
- As a former principal and teacher he knows how to tell a story in public.
- As an inspector for the Ministry of Education he is well-connected.
- His story is far more simple.
- As he works he is not restricted by the rules for those who rely on benefits (for example: no volunteerwork)
- He gets lots of support: Belgacom (largest telecom provider in Belgium), Cera (a financial group), a Rotary club, a professor from the Catholic University of Leuven, a dance school (?), …
Stefan Pasture is also the only self-professed patient advocate who contributed to the book “Luisteren naar het lichaam – Het dualisme voorbij” (“Listen to the body – Past the dualism”), a liber amicorum in honor of prof. emeritus Boudewijn Van Houdenhove, in which he thanks CFS for changing his life.
For my international readers:
Boudewijn Van Houdenhove is to Belgian ME/CFS patients, what Simon Wessely is to patients in the UK and William Reeves is to patients in the USA.
No worries, we have doctors and scientist who support us too. Have we?
Biomedical doctors
In Belgium we have nothing that can be compared to the Scientific Advisory Board of the CFIDS Association of America (USA). Some members of that board: Lucinda Bateman, Nancy Klimas, Robert Silverman and Vincent Racaniello. To my knowledge there is also no single doctor or scientist who advises or supports an organization like dr. Charles Shepherd does for the ME Association (UK).
Given that, who do we have that could support us?
- Prof. Dr. Michael Maes. Has recently published a book in which he names names and settles some scores, and then he left for Thailand. Exit
Michael Maes. - Prof. Dr. Kenny De Meirleir. Unfortunately he has put himself outside the medical establishment, that looks down upon his research and treatments as unscientific and medically unethical. As former patient I can only confirm that. Exit
Kenny De Meirleir. - Dr. Francis Coucke. He is probably the most media savvy of the 3 and a lot of patients support him, but he risks a fine of €635,000 and losing his medical license. Exit
Francis Coucke. - There are other doctors who treat ME/CFS patients (or at least claim to have a treatment), but prefer to remain under the radar and don’t publish their findings. Meaning they lack credibility to promote the biomedical aspect of ME/CFS.
Still no worries? Luckily we have some patient organziations.
Patient organizations
We have several patient organizations, movements, clubs, groups and advocates. What they have in common is that they are small, closed-knit groups and secretive. A sudden spur of activity can be followed by months of inactivity. And they can’t stand each other. I do not doubt their good intentions, but as the saying goes, the road to hell is paved with them.
I admit, I am a little worried.
Achievements
Let’s look at some of the achievements of our advocates in 2011:
- Four mediacampaigns or press-releases that I know of, failed in a predictable way.
- A self-professed patient advocate managed to anger the publisher of 2 of the main newspapers in Belgium to such an extent that they threatened with a lawsuit.
- The most active movement of this moment declared the Minister of Healthcare, of all people, persona non grata.
I am very worried.
A Glimmer of Hope
However, that same movement, the WUCB, managed to get enough politicians interested that the Health Committee of Parliament will organize a round-table conference on CFS later this year. This is a major achievement. Kudos for this.
The same movement also invited other organizations and individual advocates for a meeting later this week to prepare the round-table conference. Must be a bit like herding cats, but kudos for this too.
I only hope that they realize that an opportunity like this occurs only once every few years and that they will use it to raise awareness and to find solutions. It is a round-table conference, not a tribunal. May common sense prevail, and the best of luck to them.
| Coming together is a beginning; keeping together is progress; working together is success. |
| Henry Ford |
PS: Some arguments that can be used against the CFS Society:
- Criteria:
They are the only ones who are promoting the Fukuda (CDC 1994) criteria. Organizations and patients normally advocate the use of Canadian Consensus Criteria for ME/CFS or the new International Consensus Criteria for ME. - Quackery and psychotherapy:
Some of the treatments the CFS Society promotes: mindfulness, cranio sacral therapy, dolphin therapy, and deer therapy. All research into dolphin therapy or cranio sacral therapy have never been able to show any effect beyond the placebo effect. Treatments promoted by readers of his site and and published with approval of the owner: cognitive behavioral therapy, yoga, (vitalized) pure water, exercises, psychotherapy, acupuncture and refloxology to stimulate the energy channels in the body, Mickel therapy, Ayurveda, affirmations, and kinesiology. Yoga, mindfulness, and massage can be very relaxing, but they are no treatments for a disease. Mickel therapy, affirmations, and stimulating energy channels are best described as quackery. What we have here is a list of relaxation techniques, psychotherapy and quackery. Ironically, the owner of the site is convinced that he is promoting scientific research.
PPS: The WUCB I mentioned earlier did get half a page in the “Gazet van Antwerpen” past weekend in which, for the first time in Belgium, the International Consensus Criteria for ME were mentioned. 
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