mango
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The Swedish medical information website 1177.se Vårdguiden recently changed their info on ME/CFS.
http://www.1177.se/Uppsala-lan/Fakta-och-rad/Sjukdomar/MECFS/
1177 is one of the main (the main?) sources for medical info in Sweden, and is used by “everyone”, e.g. patients, journalists, healthcare staff, authorities etc.
The info on 1177 is provided by the county councils (”landsting” in Swedish: the self-governing local authorities/administrative subdivisions that are responsible for the public health care system).
I haven’t compared all of it in detail (yet), but what I’ve read so far is making me feel very disappointed and irked The previous version was far from perfect, but at least it got several hugely important points across in a very clear and unambiguous way.
Some of what has been removed are these two crucial sentences:
As yet there is no cure for ME/CFS and the illness is considered lifelong.
The following has also been removed:
Also gone is the text about pharmacological treatments targeting the immune system, and a paragraph that talked about current research into the immune system, autoimmune and autoinflammatory processes etc...
I’d say that the overall changes make it sound as if ME/CFS isn’t very serious at all, and there is a lot of focus on fatigue, depression etc. One big step back, sadly (Not everyone would agree with me, I’ve read some comments from PWME who think the new version is 'good' or 'great'.)
The info on PEM and pacing is sorely inadequate (it was in the previous version too).
There’s some new text added that I think is very odd/incorrect, for example this one:
Also, I can’t help noticing that they’ve replaced the previous reviewer (a well-known biomedical ME/CFS specialist, highly appreciated by the patient community) with a dr that is known (and often criticised) for her psychosocial approach to ME/CFS…
It would be very interesting to know who initiated these changes, and why…
http://www.1177.se/Uppsala-lan/Fakta-och-rad/Sjukdomar/MECFS/
1177 is one of the main (the main?) sources for medical info in Sweden, and is used by “everyone”, e.g. patients, journalists, healthcare staff, authorities etc.
The info on 1177 is provided by the county councils (”landsting” in Swedish: the self-governing local authorities/administrative subdivisions that are responsible for the public health care system).
I haven’t compared all of it in detail (yet), but what I’ve read so far is making me feel very disappointed and irked The previous version was far from perfect, but at least it got several hugely important points across in a very clear and unambiguous way.
Some of what has been removed are these two crucial sentences:
(sloppy translation: ) Long-term reduction in functional capacity may lead to substantial and permanent reduction of capacity for work, or difficulties fulfilling school attendance as well as managing daily activities and personal care.1177.se said:"Långvariga funktionsnedsättningar kan leda till omfattande och stadigvarande nedsättning av arbetsförmågan, eller svårigheter att fullfölja skolgång liksom att klara dagliga verksamheter och personlig omvårdnad."
“Det finns ännu inget botemedel mot ME/CFS och sjukdomen räknas som livslång.”
As yet there is no cure for ME/CFS and the illness is considered lifelong.
The following has also been removed:
People with ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome) describe an extreme physical and mental exhaustion, often in combination with malaise. The Swedish term kroniskt trötthetssyndrom [literally ”chronic fatigue syndrome”] is actually a misleading phrase in this context and should not be confused with sleepiness.1177.se said:“Personer med ME/CFS (myalgisk encefalomyelit/chronic fatigue syndrome) beskriver en extrem fysisk och mental utmattning ofta i kombination med sjukdomskänsla. Det svenska begreppet kroniskt trötthetsyndrom är egentligen en missvisande term i sammanhanget och ska inte blandas ihop med sömnighet.”
Also gone is the text about pharmacological treatments targeting the immune system, and a paragraph that talked about current research into the immune system, autoimmune and autoinflammatory processes etc...
I’d say that the overall changes make it sound as if ME/CFS isn’t very serious at all, and there is a lot of focus on fatigue, depression etc. One big step back, sadly (Not everyone would agree with me, I’ve read some comments from PWME who think the new version is 'good' or 'great'.)
The info on PEM and pacing is sorely inadequate (it was in the previous version too).
There’s some new text added that I think is very odd/incorrect, for example this one:
How much symptoms you get depends on whether you have received diagnosis, treatment and adjustments in an early or later stage of the illness.1177.se said:"Hur mycket symtom du får beror på om du har fått diagnos, behandling och anpassning i ett tidigt eller senare skede av sjukdomen."
Also, I can’t help noticing that they’ve replaced the previous reviewer (a well-known biomedical ME/CFS specialist, highly appreciated by the patient community) with a dr that is known (and often criticised) for her psychosocial approach to ME/CFS…
It would be very interesting to know who initiated these changes, and why…
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