When a 17-Year-Old Girl Is Diagnosed with Myalgic Encephalomyelitis: A Case Study from the Swedish Health Care System—A Parent Perspective Eva Bojner Horwitz, Jonas Axelsson, Olli Polo, Leif Widebert, Töres Theorell, Anabelle Paulino, David Ullman, Jonas Bergquist Abstract This case study presents different strategies that were explored by the patient’s mother (who is a researcher in music and medicine) when her 17-year-old daughter was diagnosed with ME (Myalgic Encephalomyelitis), also known as Chronic Fatigue Syndrome (CFS). ME is not widely recognized in the Global as well as the Swedish population at large, and within healthcare, there are no standardized recommended treatments, partly due to the lack of published evidence-based studies. This case study aims to provide insights into how the Swedish healthcare system works, how different clinics and hospitals within it operate and interconnect; and how these contribute to health outcomes after 15 months of treatment. https://www.scirp.org/journal/paperinformation.aspx?paperid=119015
This is a really abnormal medical response to the disease given how usually its anxiety and your shoved out the door with an SSRI and nothing else and that is it. The vast majority of ME patients never get a diagnosis let alone this level of tests and treatment. This really speaks to me personally, I have gone from a somewhat distrusting doctors to considering them evil combined with how society at large is treating ME patients. Peoples lack of humanity and their continuing gaslighting has not left a good impression of humanity as a species. Joining the underclass of those almost everyone can be prejudicial against has been awful and its all been led by doctors. Has it? The funding hasn't changed for ME and nothing seems to have actually practically changed that wasn't already. Long Covid is getting funding but its not trickling down to ME in any way. Ron Davis finally got funding but it wasn't from the NIH it was from the Department of Defence and that is probably the cause of Gulf War syndrome was determined and the DOD is liable for it. I see no wider acceptance of ME, no flood of researchers or the cutting edge moving at anything but a snails pace with the same faces. This I feel just isn't true. We wish it to be true but its not and we can see that every week in the meassociation papers of note where the Long Covid ones outnumber the ME ones 3 to 1 and often there is nothing for ME at all. Its even worse than that because the bulk of research in the UK remains on exercise and CBT because the NHS purged all the other specialisms from the ME/CFS space when it put the psychologists and physiotherapists in charge. So there is no one to actually take that research money and do anything with it in a position with patients to test. This is a case study of about the best case of ME/CFS medical interaction, its extremely rare levels of acceptance and attempted treatments. Even with all that care the top thing still comes out as pacing showing how there still remains no treatments proven to work in ME, after 80 years of research. We have a long way to go before this somatic version of the disease is turned around, a really long way and only then will real research be able to begin in any quantity.
In the 1990s, here in the US, when patients with Chiari malformation were given operations their CFS was cured. There was a TV broadcast about some of the patients. I asked Dr. Lapp about it, he said they were misdiagnosed as CFS. my bolding
