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I randomly came across this "guide for restoring movement" after covid-19 by Johns Hopkins, and thought it was intresting to read. Sharing for informational purposes only. Bouncing back from Covid-19: Your guide to restoring movement...

(Not ME, but still relevant.) New blog article (in English and Swedish) by Swedish expert patient Sara Riggare. This is why patient involvement is important for improving healthcare or “It seems inconvenient, but if you really want to, you can try” https://www.riggare.se/2024/08/08/this-is-why/

I just want to mention that based on my personal experience (very severe OI), knee-high compression socks (class II, 23-32 mmHg) is enough to make a noticeable and useful difference, measurable by the blood pressure monitor as well. Thigh-highs are more effective, but the knee-highs really do...

Thank you @Hutan, very helpful :)

"028 - New findings: more evidence of poor oxygen perfusion in the brain. We seeing high levels of lactate and low levels of choline in the brains of Gulf War Illness sufferers. This quick update covers our new analyses and why the may be important to those with chronic pain, fatigue, and...

According to info on social media, Karolinska in Sweden is apparently currently recruiting for an ECCP study in POTS. I would be interested in learning more, so please share if you happen to come across any information about this study :) ECCP = Enhanced External Counterpulsation. "EECP...

As a person living with ME, I have to disagree with your statement that 'feeling better' is ultimately what matters. To me better function, that my body is actually functioning (a bit closer to) properly, is much more meaningful to me than 'how I feel'. I can still 'feel' absolutely shite as...

According to "anecdotal cases" ie experiences shared for example in Swedish dysautonomia groups, there are some people who are currently getting IV saline twice a week for a number of weeks on a trial basis. They have reported that it helps them so much that they are even able to go to work part...

Få regioner har kvar särskilda mottagningar för postcovid https://lakartidningen.se/aktuellt/nyheter/2024/07/fa-regioner-har-kvar-sarskilda-postcovidmottagningar/ It's a long article with lots of details. ME is mentioned:

"027 - New lab results - low brain oxygen in chronic disease Here are brand new results from a recent brain study we conducted. We found reduced oxygen circulation in the brains of people with Gulf War Illness. We are also analyzing individuals with ME/CFS and fibromyalgia. You can find the 7...

Two Swedish news articles about exhaustion disorder. (Not ME or LC, but I think still relevant because I suspect many with what is diagnosed as ED in Sweden would end up under the CFS umbrella in many/most other countries.) Allt fler drabbas av utmattning...

Dr Cathy Pedersen talks about this study on the latest episode of the podcast The POTScast. E215:Intensive Pain/Exercise Programs for POTS with Dr. Cathy Pederson https://www.standinguptopots.org/podcast

A couple of Swedish news articles today: Dålig kunskap om hur utmattning ska behandlas – Daniella: ”Ingen lyssnade” https://www.svt.se/nyheter/inrikes/dalig-kunskap-om-hur-utmattning-ska-behandlas-daniella-ingen-lyssnade Evelina blev utmattad – fick själv ta initiativ till behandlingar...

"Clinicaltrials.gov is the official registry of human treatment studies. This video is a quick introduction to using the online tool to find out what trials are happening around you now. - Jarred Younger www.clinicaltrials.gov"

Dr Cathy Pederson is the founder of https://www.standinguptopots.org/

Authors: Cathy L. Pederson, Rachel E. Wilson Abstract Intensive, hospital-based rehabilitation programs are recommended for many POTS patients. Electronic surveys were taken by 1,130 POTS patients to assess the long-term effects of these programs, including a demographic questionnaire, the...

Thank you for starting this thread :) I often get adrenaline surges, usually from trying to do my basic ADLs and/or basic household activities. This is true for me as well. I haven't tried any medications, though. The only other thing I've found that helps limit the length of the episode/help...

"Many people are concerned about the loss of their sense of smell that persists long after a SARS-CoV-2 infection. I want to explain how this anosmia occurs, and how it likely resolves over time. - Jarred Younger"

Yes, short for psychosomatic...

Reduced Blood Flow to Head in Post-Exertional Malaise https://lumiahealth.com/blogs/news/reduced-supine-blood-flow-to-head-in-post-exertional-malaise-pem