A Swedish ME/CFS charity has slammed the attitude of the country’s government towards the disease.
In an interview with British ME/CFS fundraiser Mike Harley, the charity’s representatives stated, “The government appear to take no interest at all in this disease, which means that there isn’t any serious commitment, no sense of urgency whatsoever.”
“There currently is no biomedical research funding and no program investments, no clinical trials into medical treatments, and there’s a desperate lack of accurate medical education and biomedical ME/CFS specialist centres.”
The Riksföreningen för ME-patienter members (RME, the Swedish ME Association), were discussing the general situation in Sweden, where an estimated 40,000, mostly undiagnosed patients have ME/CFS.
The RME referred to “an obvious lack of awareness and knowledge… particularly regarding the current state of biomedical research on ME/CFS” among doctors and the government, and the lack of national treatment guidelines.
“Sadly, the psychosocial view is common, and there is a disturbing tendency to clump ME/CFS together with medically unexplained symptoms (MUS). However, there are a minority of doctors who recognise ME/CFS as a biomedical illness.”
Sweden has two specialist ME/CFS centers, both biomedical. The RME said, “The ME/CFS centre at Stora Sköndal opened in 2015 and, because of the long-standing countrywide lack of ME/CFS specialists, has been completely swamped from the very first day.” However, the Gottfries Clinic will close in November after 18 years of operation and “The local politicians are now in the process of procuring biopsychosocial services instead.”
Both clinics, along with Professors Jonas Blomberg and Jonas Bergquist, perform biomedical research.
The RME said, “We would like there to be a biomedical specialist clinic in every region… The most important step would be to stop inappropriate and potentially very harmful treatments such as GET, and to make sure that patients would no longer be denied proper medical investigations, tests, symptomatic treatment or treatment for comorbidities by those falsely claiming that ME/CFS is simply ‘false illness beliefs’, a psychological/behavioural disorder.”
“We believe and hope that there’s reason to be optimistic,” but added, “At the same time there are disturbing tendencies… The psychiatric lobby and supporters of the MUS concept continue to try and claim ME/CFS as one of theirs. The belief in CBT and GET as ‘effective treatments’ for ME/CFS is still strong, among politicians and decision makers in particular.”
Mike Harley’s full interview can be found here.
Sweden is the latest of the 28 countries of the European Union to be visited by Harley, who is fundraising for UK biomedical research charity Invest In ME by running a marathon in each country. He plans to contact someone within the ME/CFS community in each location to raise the profile of the illness and the need for research into treatments.
He has already published interviews about the ME/CFS situation in Greece, Ireland, Finland and the Czech Republic.
He said, “I’m running my sixth European Union marathon in Stockholm, Sweden on June 4th for biomedical ME research projects via Invest In ME (UK) and would love to meet up with anyone able to come cheer me on or meet for photos and a chat.” His Facebook page is here.
In August, we shared with you that we and six other ME/CFS organizations had submitted a proposal to the National Center of Health Statistics (NCHS) to fix the coding of ME/CFS in the US International Classification of Diseases (ICD-10-CM). Today, we are writing with an update on that proposal and asking that you sign the