CFS is too long minimized, the patients are too long ignored
OPINION - 05/12/12, 7:52
Being right is more important than the solution, put John Crombez, Maya Detiège and Christine Van Broeckhoven fixed. Crombez's Secretary and former member of the Welfare Committee in the Flemish Parliament; Detiège is an MP and member of the Health Committee, Van Broeckhoven is professor and biologist.
"Vilvoords hospital wants CFS doctor dismiss," headlined The Morning yesterday. We are not medical tribunal, about the reasons for the redundancies can and we do not want exhausts. But the discussion is unfortunately symptomatic of the Cinderella treatment of chronic fatigue syndrome (CFS) and the CFS patients. The struggle within the medical world between doctors and specialists rages - for example the 'psychiatric' treatment versus the "physical", like Doctor Francis Coucke - (h) recognizes the importance of the patient even more. Being right is more important than the solution.
It can also be different. The number two of the Norwegian Ministry of Health, hit not long ago mea culpa because Norway CFS patients for years has left to their fate. He is not alone. U.S. President Barack Obama gave this summer National Institutes of Health and Department of Health and Human Services instructed to give priority to research into CFS.
In Belgium, it is too quiet. The latest news - the controversy in Vilvoorde - was that Inami funding of university reference centers for CVS will put stop. Only a veto by Health Minister Laurette Onkelinx (ps) is the draining of the centers still in the way. We hold no plea to the centers in their present form to maintain, but amidst this type of administrative discussions, nobody still the question of where the patients still can go. We only hear ominous reports about Inami that CFS patients have their benefits reduced. "Two kilometers to walk 'is sufficient for a benefit to lose. Only a limited number of CFS patients is supported by a distribution of that group pushes Inami still have a part in the misery.
Uncertainty and despair
How many people suffer from CFS, we do not know. Each year must report 750 patients with the reference centers, but they are only the tip of the iceberg. Indeed, not all patients find their way to the reference centers. Various estimates indicate that the actual number of CFS patients is about 25,000. All these people have in common that they through the forest in the fog should go. One by one.
The lack of research and treatment caused uncertainty in CFS patients. Desperation often. The miracle therapy does not exist. Hopefully they ever found, but that guarantee you never have. Now the CFS patients, however, on their own to find anyone who can give them a glimmer of hope, it will focus on their own. Often with extensive therapeutic and financial consequences, sometimes even dangerous. Because of the lack of clear guidelines for the treatment to be followed (and) put the door at least ajar for charlatans on the back of searching, sometimes desperate patients trying to earn money. Or worse, that they foist a therapy that they are worse off.
We advocate a clear primary contact for all patients with suspected CFS. Further research should ensure that they are there as soon as you can get a conclusive diagnosis and reliable information about the best treatment they follow. The lack of research into chronic fatigue syndrome attention to it but not to investigate and not to treat - as is likely to happen - is twisted logic with far-reaching consequences for the CFS patients.
Clear approach
People with CFS are not looking for healing, especially in the beginning. Do to improve. To a place where they can go, to people them with knowledgeable guide, for people accompanying them. CFS patients do not ask much, but even those simple questions, we are far removed.
Sp.a asks parliamentary hearings with all parties and opinions: doctors, scientists, reference centers, Inami and of course the CFS patients themselves. These hearings should result in a different, better approach to CFS. No reduction of research, no savings in treatment and above all not in the towel, but clarity and uniformity of approach. About the different governments around, without - and this mistake is all too often made - that we make the choice on how that happens.
We need thousands of people to apologize for what happened not too long. CVS is too long minimized, the patient too long ignored. Tired - tired - is unfortunately no choice.
