Jørgen Jelstad writes about ME ( Journalist that has big inpact on the ME / CFS groups in norway. --- New report: This mean US health authorities should guide future ME research ME / CFS exists. Draft report, Pathways to Prevention Workshop, NIH Lately there has been yet another fierce debate about ME / CFS Aftenposten debate pages. I have simply had too much to do to involve myself in the debate, but I have obviously noted that it still goes in familiar tracks. Its possible Im going to write something around Aftenposten debate during Christmas, but I have not quite country if I think it will have any value. I have more faith in emphasizing that outside our small country takes several important advances in ME / CFS-front. And these advances are themselves a kind of comment on the debate in Norway. The central health authorities in the United States, National Institutes of Health, put earlier this year started a Pathways to Prevention program (P2P) for ME / CFS. That is a comprehensive study about what it takes to get progress in research on ME / CFS. What we know and what is missing? The final report of this work will be a very important document for further work in the US. Therefore, it has been attached great excitement to the result. First, a bit about how the work has proceeded. An independent research group should prepare a Evidence report about diagnosis and treatment. The seven scientists from the Pacific Northwest Evidence-based Practice Center conducted a systematic process of sifting out relevant research on these topics and then summarize what we know and do not know - what the researcher language called a systematic review. This was followed by a two-day workshop on 9 and 10 December. A new, independent group of five professionals got here to hear input from various ME / CFS experts and also some patient representatives. Then compiled these five professionals a report with its conclusions and recommendations on the way forward. As the five professionals writes in the report: After reviewing the findings of research report (evidence report), presentations from experts and public comments, prepared an independent panel this report that identifies gaps in the research and future research priorities. Among ME / CFS patients in the United States, and also among some ME / CFS researchers, it has been attached great uneasiness to whether research groups without any knowledge of the extensive and complicated ME / CFS controversies, during fairly short time would fail to understand the field. There was a fear that the reviews would not take into account the fact all the problems related to the diagnosis and different patient selection. In a previous blog post, you can read more about diagnostic confusion. Ive also been excited at the result, while I have also meant that this field really need independent reviews and evaluations. ME / CFS and field research must be ripe for it now. You need someone who sees this outside, unprejudiced and without having invested his career in theories that they feel they must defend. ME / CFS field need this because independent voices carry more weight. It provides more impact. An independent review can obviously go both ways. It can be made with harelabb. Without an effort to really understand why things are the way they have been. So, how land P2P report? With a steady swoop. Both the final report after the workshop and research review on the diagnosis and treatment have largely managed to see and understand the problem. They also come with some clear recommendations I have not seen to be expressed so strongly before. Let us see what they are writing. I come here just to take some short excerpts from the 19-page final report: (NB: this is my translations, and they are certainly not good enough all places, so please do read the report in its entirety) ME / CFS is an area where research and the medical community has frustrated those affected, through failure to assess and treat the disease and through permitting the stigmatization of patients. What is the incidence of ME / CFS, and who frames it? ME / CFS exists. ME / CFS can strike anyone. The lack of consistent, sensitive and specific diagnostic tests and criteria have been an obstacle to research on the causes and treatment, which has done damage and prevented that ME / CFS has been considered as a distinct pathology. Fatigue has been the defining focus of research, but many more symptoms must be examined, primarily neurocognitive dysfunctions (brain fog), malaise after load (post-Exertion malaise), and pain. Patients with ME / CFS are often labeled as lazy, untrained and looking for insurance rights; this hinders research progress. Both society and the medical research community often treats patients with ME / CFS with distrust, suspicion and lack of respect. Patients are often treated with psychiatric, and other maladaptive, medications that can cause harm. How can we promote innovative research for better development of treatment for patients? Over the past 20 years there have been minimal progress on improving research status for patients with ME / CFS, and both the victims and those who want to help are frustrated. Strong evidence suggests immunological and inflammatory disease mechanisms, disturbances in neurotransmitters and microbiome and deviations in metabolism and mitochondria in ME / CFS - which could potentially be important to define and treat ME / CFS. Although psychological aftereffects (eg. Depression) often occurs as a result of CFS / ME, this is not a mental illness. To focus only on the symptom fatigue can identify many with ME / CFS. But just looking at this symptom isolated, fails to capture the essence of this complicated condition. Earlier studies have excluded people with the distinct disorder described above, which may have led to delayed diagnosis, conflicting diagnoses and treatment, incomplete follow-up and inappropriate healthcare. Existing treatment studies (CBT (CBT) and graded exercise therapy (GET)) have shown measurable improvement, but this has not led to improved quality of life in patients. This is thus not a primary treatment strategy should be used as part of a larger treatment regimen. Recommendations for the future. Patients must be at the center of research efforts, and their involvement is crucial. The findings in the research literature is inconsistent, and there are many holes (eg. ME / CFS is one disease?). The research has overlooked many of the underlying biological factors in the startup and development of ME / CFS. Priorities in research should turn to including basic research and research on mechanisms that will help to develop tools and targets biomarkers and new treatment. recommendations: 1. Define disease parameters. 2. Creating new knowledge. 3. Improved methodology and measurement methods. 4. Provide training and education. - We believe that ME / CFS is a distinct disease that requires multidisciplinary treatment (eg. Doctors, nurses, social workers, psychologists) to provide optimal support. 5. Finding new ways to obtain research funding. 6. Conducting clinical trials. 7. Better treatment. Conclusion: The conclusion The many diagnostic criteria for CFS / ME has hindered progress. To continue using the Oxford criteria may hamper progress and be harmful. Therefore, we recommend that: 1. Oxford criteria are not used. 2. ME / CFS community agree on one lens set of criteria for diagnosis (although it is not perfect). 3. patients, doctors and researchers agree on a meaningful definition of recovery (recovery). We hope our work has brought dignity back to (dignified) ME / CFS and those affected, while we have provided a knowledge-based guidance to the National Institutes of Health and the research community. There was a small excerpt from the report of the major health institution in the United States. Feel free to read the whole, youll find it at the link below. This is the first time Ive seen it so explicitly be stated that the Oxford criteria for diagnosis should on the scrap heap. These are the loosest criteria for diagnosis which only requires onset fatigue over six months as a criterion for diagnosis - no other symptoms or findings are required. There are also those criteria that are used in the majority of research on cognitive therapy and GET. Also conclusions of the research summary in Evidence Report -a point to the same. Here we have not just one but two independent research groups that after a thorough evaluation, the Oxford criteria are not good enough. The final report is also clear that one must now prioritize biomedical research to a far greater extent. And not least that more funds must be inserted in the struggle to find causal mechanisms and better treatment. As they write: ME / CFS exists. After three decades of growing evidence on exactly that, it should be unnecessary to have to write it in a report from 2014. But it is still necessary. ME / CFS exists. Time to do something about it. Here you can read the entire final report from P2P. And here you find the review of research on the diagnosis and treatment: Evidence Report. Here you can watch videos from the workshop days. Another very important work that is underway in the United States under the auspices of the Institute of Medicine, and you can read more about in my previous blog post The Great Contract.
Posted on: Mon, 29 Dec 2014 20:45:33 +0000
Trending Topics
Recently Viewed Topics
© 2015