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When you say "these people", are you referring to Peter Rowe?

I'll be blunt now. It seems like you are making a lot of assumptions without actually knowing or even bothering to try and look things up. A quick Google search will show you that Rowe has published research articles on this since 1995 (maybe even longer?), so it's simply not true to suggest...

@MittEremltage found this study from 2023, by van de Leur together with Elin Lindsäter and others. Psychometric and structural properties of the Karolinska Exhaustion Disorder Scale: a 1,072-patient study https://bmcpsychiatry.biomedcentral.com/articles/10.1186/s12888-023-05138-4 Lindsäter is...

Postural orthostatic tachycardia syndrome (POTS): State of the science and clinical care from a 2019 National Institutes of Health Expert Consensus Meeting Part 1 https://www.autonomicneuroscience.com/article/S1566-0702(21)00058-8/fulltext Part 2...

Exhaustion disorder, not ME. Relevant because of how often pwME are misdiagnosed as having ED (and in many other countries people with ED are lumped into the CFS diagnosis). Press release by Uppsala University: Fel fokus vid behandling av utmattningssyndrom...

He's been working with ME and POTS/OI patients since 1996. I imagine it would be very difficult to do without gaining at least some amount of clinical experience. Not to mention the research he has done over the years. He has also been invited and participated in POTS state of the science and...

Well, Sasha asked if there are guidelines that are put forward on the basis of clinical experience, so I hope this helps her in her search for information.

Summary by Peter Rowe: https://www.dysautonomiainternational.org/pdf/RoweOIsummary.pdf https://www.dysautonomiainternational.org/ https://www.potsuk.org/managingpots/ (Edited spelling.)

From my perspective as a person with severe OI, this kind of "pacing" is absolutely essential and actually helps. Lying down to avoid fainting (and falling, vomiting etc), and using compression garments to allow yourself a sliver more upright time in order to (for example) be able to use the...

New blog post by @MittEremltage: Är det vettigt att uppdatera ett vårdprogram mitt i sommaren? https://mitteremitage.wordpress.com/2024/07/09/ar-det-vettigt-att-uppdatera-ett-vardprogram-mitt-i-sommaren/

I feel that she would definitely have approved of @MittEremltage and @Clementine's and others efforts, because their approach is nearly identical to how Anne used to work :heart: There's a piece of Anne in all the activism/advocacy I do, and carrying her work forward is a huge part of it.

Also, note the ongoing case started by the Patient Complaints Board in Stockholm in April this year. The proposal (see below) was formally approved in May. It is not clear to me at this point in time if, or how, the political decisions and the updates to the guidelines are connected. It...

Do also note the timing of these changes. As many of you already know, there is a very strong summer holiday culture in Sweden. The four to five-week summer holiday is entrenched in Swedish society, schools are out for 10 weeks during the summer, and summer in Sweden means workplaces emptying...

New blog post by @MittEremltage: Är granskaren av vårdprogrammet för ME oberoende, obunden och objektiv? https://mitteremitage.wordpress.com/2024/07/08/ar-granskaren-av-vardprogrammet-for-me-oberoende-obunden-och-objektiv/

I've started a new thread for the changes to Region Stockholm's guidelines for ME: Sweden: Problematic changes to Region Stockholm's ME/CFS guidelines https://www.s4me.info/threads/sweden-problematic-changes-to-region-stockholms-me-cfs-guidelines.39260/

I've started a new thread for the changes to Region Stockholm's guidelines for ME: Sweden: Problematic changes to Region Stockholm's ME/CFS guidelines https://www.s4me.info/threads/sweden-problematic-changes-to-region-stockholms-me-cfs-guidelines.39260/

Forum thread on Elin Lindsäter's related research study (currently recruiting): Sweden: Psychological treatment for severe fatigue: A feasibility study, Lindsäter et al https://www.s4me.info/threads/sweden-psychological-treatment-for-severe-fatigue-a-feasibility-study-linds%C3%A4ter-et-al.39238/

I posted about this issue in the News from Scandinavia thread last week, but as things keep unfolding I think it deserves its own thread. A massive thank you to patient advocates @MittEremltage, @Clementine and others, for digging into this and doing a phenomenal job trying to hold the...

Here's the forum thread for the study, which is currently recruiting: Sweden: Psychological treatment for severe fatigue: A feasibility study, Lindsäter et al https://www.s4me.info/threads/sweden-psychological-treatment-for-severe-fatigue-a-feasibility-study-lindsäter-et-al.39238/

"Here are the results from a small pilot study I conducted on French maritime pine bark (Pycnogenol) for Gulf War Illness, with a particular focus on chronic pain/fatigue. You can find the full-text of the paper here: https://pubmed.ncbi.nlm.nih.gov/33802272/ - Jarred Younger"