This was briefly and positively mentioned in the Dutch morning news on TV, which pretty much everyone sees. The TV coverage only mentioned the bit about the gross disparity in funding and treatment, despite similar severity between the misunderstood and recognized disease. Their source for it was this article:
http://www.trouw.nl/tr/nl/4516/Gezo...-onbegrepen-ziekte-lijden-is-even-groot.dhtml
The article is mostly about the impact of CFS, FM, and IBS (misunderstood) versus RA and MS (recognized). It also looks like there were some head-to-head comparisons between CFS and MS, and between FM and RA, due to the similar symptoms, and the quoted research found that the impacts were the same for both diseases in each pair in regards to limitations and interfering with work.
But the researcher also points out that despite the similar levels of suffering, there is much more money and attention given to the better understood diseases. As a result, doctors find patients with the unexplained diseases to be troublesome and have no treatments for them. She says that CFS patients have more psychological problems than MS patients, but suggests that it is due to lack of recognition and disbelief from the doctors.
The director of an ME/CFS patient organization was interviewed, and is glad that attention is being brought to the issues, but would prefer that research was investigating the medical cause of the disease.
The Health Council will be looking into the issues, commissioned by the Dutch House of Representatives following a petition by patients and supporters. That should happen after the summer.
Then there's a really stupid excerpt about "Barbara" being diagnosed with CFS and being oh so very lucky to get referred to a psychosomatic CBT clinic, where GET saved her!
http://www.trouw.nl/tr/nl/4516/Gezo...-onbegrepen-ziekte-lijden-is-even-groot.dhtml
The article is mostly about the impact of CFS, FM, and IBS (misunderstood) versus RA and MS (recognized). It also looks like there were some head-to-head comparisons between CFS and MS, and between FM and RA, due to the similar symptoms, and the quoted research found that the impacts were the same for both diseases in each pair in regards to limitations and interfering with work.
But the researcher also points out that despite the similar levels of suffering, there is much more money and attention given to the better understood diseases. As a result, doctors find patients with the unexplained diseases to be troublesome and have no treatments for them. She says that CFS patients have more psychological problems than MS patients, but suggests that it is due to lack of recognition and disbelief from the doctors.
The director of an ME/CFS patient organization was interviewed, and is glad that attention is being brought to the issues, but would prefer that research was investigating the medical cause of the disease.
The Health Council will be looking into the issues, commissioned by the Dutch House of Representatives following a petition by patients and supporters. That should happen after the summer.
Then there's a really stupid excerpt about "Barbara" being diagnosed with CFS and being oh so very lucky to get referred to a psychosomatic CBT clinic, where GET saved her!
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