By Esther:
Physicians missed the diagnosis Cancer in Dutch patient with ME/CFS, because her symptoms were supposedly ‘psychosomatic’.
Great Britain, Belgium and the Netherlands are the Bermuda triangle when it comes to ME/CFS. The disease ME vanished from the earth when the so called disorder CFS made its unfortunate entry. Nowadays patients with ME aren’t taken serious anymore when they consult their physician with new symptoms. Influenced by the psychobabble of so called CFS-experts they tend tot think ‘It is all in the patients’ heads’.
The choice of the healthcare-system to use this approach to ME/CFS has disastrous consequences and one of the patients write:
“I’m angry with the Dutch healthcare-system, angry about the arrogance of Dutch physicians in regard to patients with ME/CFS. Even in the light of all the counter facts they persist in their idea that ME/CFS isn’t a real disease, but a psychosomatic disorder.”
One of the members of a Dutch ME/CFS forum maintained a diary/weblog for more than a year. For more than nine months she developed serious physical symptoms. After she got diagnosed with XMRV by dr. De Meirleir in Belgium, a renowned ME/CFS specialist, her health declined fast. She soon felt to weak to travel the long distance to Brussels and thereforesought help in her immediate environment.
Every physician she went to visit, sended her back home despite the abnormal bloodresults and the fact that she was XMRV+. The lumb in her breast was at first sight perfectly normal and the pain she was complaining about was ‘all in her head’, they reassured her. When she couldn’t eat anymore, she started losing a lot of weight. And while she became weaker day by day the physicians claimed she ‘didn’t want to’ eat. After all ME/CFS is a psychological disorder. “Therapists should help CFS patients overcoming obstacles to change, such as maladaptive coping styles en personality aspects.” One should definitely not execute more examinations when these patients complain, because it would confirm their sickness-believes. The fact that XMRV is linked to certain types of cancer, Ila Singh found it in a percentage of breastcancers, was dismissed. They didn’t want to go through the hassle of a breastscan and she was encouraged to eat a bit more.
Fortunately this patient was determined to find a physician who would take her symptoms serious. After the martyrdom of over nine months, she finally found a physician who wanted to examine the increasing lumb in her breast. The diagnosis: Breast Cancer, by now spread in Lymph glands. The physians she consulted refused over and over again to feed her by stomach tube and now the patient lost so much weight that she is to weak to start the necessary treatment right away.
Physicians, you who claim that ME/CFS is not a serious disease, should be ashamed. You play with human life. You are not living up to the oath you once have taken. This is criminal behavior!”
We hope our friend and fellow ME-sufferer will overcome this tremendous hurdle you have put there. She is one hell of lady, an example for all of us. If things turn out bad, then we know who to blame, we know who is responsible. It’s a crime against humanity that physicians continue to believe that ME/CFS patients are hypochondriacs. Besides the fact that this disease is real and devastating and mortal in some cases, it is unacceptable that the lack of examination and treatment by physicians is ‘killing’ too.
Thanks to Felixloena for the Dutch article.
In honour of our beloved friend Niessie.
Esther
See also: Cerebrospinal fluid profiles can differentiate between Lyme disease, ME/CFS and healthy controls
See also: Professor of Psychology, Rhona Johnston shows that ME/CFS is NOT a psychological condition (on a UK Government website !!!) … a MUST READ
See also: The main characteristic of ME is an abnormally delayed muscle recovery after doing trivial things, if you don't have that, you don't have ME
2 comments:
"Great Britain, Belgium and the Netherlands are the Bermuda triangle when it comes to ME/CFS." Sorry, but that's simply not true. Sure, the situation with CFS/ME could be better in all those countries, but it is still 100x better than in many countries, e.g. Finland, so I feel this is very insulting.
In Finland there is one CFS/ME doctor in the whole country (it is over 1000 km from North to South making it much less feasible to travel to another city than e.g. here in the Netherlands), the illness officially does not exist (not as a psychiatric condition, it doesn't exist at all - it's relatively easy to get on disability for psychiatric conditions but impossible for CFS/ME). There are no celebrities or politicians talking about CFS/ME, no patient organizations, no support groups, just a single website (which I maintain). No studies have ever been done. Health and medical websites don't even mention the illness. Most doctors haven't even heard of it.
At least in those three countries there are several treatment experts and other good doctors, there's research done (granted some of it is biopsychosocial bullshit, but also real studies), articles being published, patient organizations and support groups.
What happened to Denise is extremely sad and unfortunate and definitely should not happen to anyone. But it could have happened (and sadly happens all the time!) in any country, and also to someone suffering from another chronic illness like MS or lupus. My grandma's sister died of ovarian cancer and her symptoms were blamed on IBS.
XMRV has absolutely nothing to do with any of this, except to reduce the credibility of this piece.
I would also include Denmark and Germany in the terror region for people with ME.
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