I've only read the summary so far, but it looks amazing. Here are a few Google translated quotes from the summary: "A key message in the report is: The most ill ME patients are an extremely vulnerable group with minimal or no margins, where even small mistakes can lead to prolonged and severe deterioration. Help that harms is worse than no help. Anyone working with the patient needs basic knowledge about what characterizes ME, and must show respect for the patients' and relatives' experience, needs and wishes. All help services must be designed in collaboration with the patient and any relatives." "One main message in the report is that the scope and type of care and assistance must be based on what each patient can tolerate and need, and be considered in the context of the housing situation, financial situation and help and support that the patient receives from relatives." "The support system The responses about the help services describes a system that fails many of the sickest ME patients. There are three main problems: (i) insufficient assistance is offered; (ii) the assistance provided is not adapted to the needs of the sick and leads to deterioration; (iii) lack of knowledge and understanding of the sick person's needs and challenges at all levels. In addition, the application process for support and aid schemes is so energy-intensive that many choose not to apply, even if they meet the requirements and are entitled to the schemes. " "Only 1 in 3 say they feel they are believed by healthcare professionals, and only 10% of those with severe ME believe they receive adequate health care, compared to 20% of those with very severe ME. Many do not get home visits by healthcare professionals when they need it. A large proportion is de facto without health care. About 2 out of 3 respondents have had such negative experiences with one or more health care providers that they no longer dare to contact them. Many free-text responses emphasize that it is better not to get help than to get help that causes extra strain and harm for the sick." "Main principles for good help The survey asked questions about what changes the respondents would like in health care, municipal services, NAV [DWP] and other actors. Many emphasized that the help service must be based on solid knowledge of the disease. Two basic characteristics of ME must be the foundation of this: (i) ME sufferers have an activity and stimuli intolerance. Activity and stimuli beyond the tolerance limit lead to symptom deterioration (PEM) which can be severe and last a long time. For the most severly ill people, this intolerance is extreme, and even the smallest stresses can cause severe and prolonged deterioration. For the severely ill, the assistance must be arranged with the focus that one should not under any circumstances risk harm to the patient. (ii) The disease and symptoms fluctuate from day to day. All help services therefore require great flexibility on the patient's terms. At the same time, predictability is an important part of a good help offering, but part of the "predictability" is getting help when needed in an unpredictable situation." "The greatest knowledge about this patient group is currently with the patients themselves and with their relatives. As a group, these patients are too ill to participate in studies, and there is little or no formal knowledge of care. All those who are to work with this group of patient must meet patients and relatives with humility towards the experiences and the expertise they possess." "Overall, the report reveals a patient group with a serious disease, a very large - sometimes extreme - burden of disease and an extensive need for help. The situation of patients with a very severe degree of ME is in many ways shocking and often compared to dying patients. The public support system is not sufficient, and in some cases, interventions also worsen the condition. The way to a better life situation for ME sufferers is not always more help, but accurate help."