Oh, sad to hear that. I remember that after the mononucleosis he was asked if this was similar to depression and he clearly said it wasn't. Then someone posted an article from much later where he said something like he managed to overcome it and it sounded like he was talking about mental health issues. I thought he managed to recover, whatever the reason, but it looks like unfortunately he didn't.
I’m curious how many professional sports people who get glandular fever/ mononucleosis return to full recovery ie back to professional level performance and for how long? Presumably sports scientists might know this? Has there ever been anyone researching the effect of EBV on sports professionals? Would Leonard Jason know? Or the good people at The Workwell Foundation?
A problem could be that those that don't recover stop doing sports, and it is not coupled with their infection, but rather that they weren't really cut out for sports after all. When I started to get ill and my grades dropped at school, it was explained away as me having trouble with "more challenging material", not that my cognititive abilities were shot due to ME (and even if my grades had dropped they were still "good enough" to be used as evidence that I wasn't ill ) I have no doubt children/young adults will get similar messages in sports.
Any Danes here might want to look at this parliamentary petition asking for the establishment of a biomedical research programme. https://www.borgerforslag.dk/se-og-stoet-forslag/?Id=FT-11693&fs=e&s=cl
More about the Swedish ME clinic Västerbotten and Masano Health here: Sweden: Masano Health digital rehab for ME/CFS
[Preprint] Coenzyme Q10 as Treatment of Post COVID-19 Condition, 2022, Hansen et al A nice paper assessing a treatment for Long Covid from a Danish team that appear to be setting up to assess other Long Covid treatments. Good quality research, although the team would benefit from a chat with people who know about PEM and OI symptoms in ME/CFS and Long Covid.
(Not about ME specifically.) A Swedish news article about violence against women with disabilities. MFD: Det dolda våldet behöver synliggöras https://sverigesradio.se/artikel/mfd-det-dolda-valdet-behover-synliggoras
(Not a recommendation, just passing on the link.) New private ME/CFS and fibromyalgia clinic in Ängelholm, Sweden. "Dr Ninarika." http://www.drninarika.com/ According to the info on her website, she has ME/CFS herself, is a doctor and a cattle farmer, and her view is that ME/CFS is an autoimmune condition.
Austerity and identity formation: How welfare cutbacks condition narratives of sickness https://onlinelibrary.wiley.com/doi/full/10.1111/1467-9566.13545
The Norwegian public broadcaster has an article today about the young and severe ME sufferer Aurora who is stuck at a nursing home for elderly people. ME-syke Aurora (25) er tvunget til å bo på sykehjem google translation: ME sufferer Aurora (25) is forced to live in a nursing home Although she is an adult, Aurora does not get to decide on her own life and where she will live. The 25-year-old is one of many young people in this country who live in nursing homes against their will. - It is an attack on me as a disabled person that I am not allowed to be an adult. I am reduced to a person who only needs to be cared for and who is a patient and who is not a whole person.
Survey by the Norwegian ME Association. From OMF email: This survey is in English and is open for anyone with ME/CFS to participate. Caregivers may answer on behalf of patients who are too ill to complete the survey themselves. The survey consists of two sections, approximately 10 minutes each. You may pause at any time while filling in the questions and return later. Answers are not final until you submit the survey. As the Norwegian ME Association has shared, “We hope that as many as possible take time to answer! We know answering surveys requires a lot of effort, and we greatly appreciate that patients and carers spend valuable time and energy answering.” https://www.surveymonkey.com/r/courseofillness22 Post copied to a new thread: ME/CFS - course of illness survey, 2022, Norwegian ME Association, open to all
Not sure which thread to ask about this in: There was a Europe-wide ME survey in 2021 where an individual breakdown by country was planned. As I recall, it was being run by a Norwegian ME charity. Were the results ever published? If so, does anyone have a link. Thanks. ETA: Found the thread on it so have asked there: https://www.s4me.info/threads/2021-pan-europe-me-patient-survey-emea.22819/page-3
Opinon piece in the journal of the Swedish Medical Association, by prof Jonas Bergquist and others. Postinfektiösa tillstånd kräver kunskapsstyrning https://lakartidningen.se/opinion/debatt/2022/09/postinfektiosa-tillstand-kraver-kunskapsstyrning/
Thank you, Prof. Bergquist Building evidence-based multidisciplinary care requires nationally coordinated professions. A certain section of the profession would benefit from finding a little more humility in the face of the unknown. And by a little, I mean a lot.
Swedish influencer Vanja Wikström (37.7K followers) announces on Instagram that her husband will be starting DNRS, in an attempt to treat his ME... She will be blogging about his "journey".
" The Dynamic Neural Retraining System™ is a drug-free, self-directed program that uses the principles of neuroplasticity to help reverse limbic system impairment in the brain, and to regulate a maladapted stress response involved with many chronic illnesses such as Long Covid, Chronic Fatigue Syndrome, Multiple Chemical Sensitivity, Fibromyalgia, Chronic Lyme Disease, Food Sensitivities, Anxiety, Chronic Pain, Postural Orthostatic Tachycardia Syndrome and many other conditions." https://retrainingthebrain.com/ No credible evidence of causation but, as usual, presented as such. The mirage of desire for a panacea (sigh!)
