Julie interviews our three #ThereForME heroes. A relaxed chat about how the campaign came to be, how they all met, how ideas for their campaign tend to crystallise. They talk about the the #FundThePlan initiative and how their campaign might grow in the future.
Buzzfeed link provided above as well as Spotify, as it doesn’t currently require a subscription to listen. Listening via Spotify makes it easier to listen whilst doing something else on your browser or phone.
What can wage development before and after a G93.3 diagnosis tell us about prognoses for myalgic encephalomyelitis?
A Norwegian study has shown that patients diagnosed with ME typically decline permanently in terms of their earning capabilities, as illustrated below by the drop in their average wage income over a period starting 9 years before diagnosis in 2016, until 9 years later in 2025. Less than 6% maintained an income of at least median wages after diagnosis.
Nine years before diagnosis, the men earned slightly less than their controls. Wages in the men’s groups then started falling sharply towards Y0 and continued falling in the first year after (Y1). They then fell more gradually towards Y9. The women’s average wages 9 years before diagnosis were slightly below their female controls. The wages fell more sharply between 2 years before and 1 year after diagnosis, where they stabilized at a low level.
Fig. 3. Comparing group average wages for men and women 18–67 years old, diagnosed with G93.3, from 9 years before until 9 years after diagnosis (N = 6249) using 2009–2018 data to simulate values for the control group (N = 2739).
A Meta Study, Comparing ME/CFS and Long Covid symptoms and quality of life. From the conclusions section:
Shared impact patterns were observed between the two illness cohorts. Profound impairments were consistently observed in self-perceptions of overall health status, physical health domains and ability to perform daily activities. Although only provided in one study, there were no significant differences in direct comparisons of HRQoL outcomes between pwME/CFS and pwPCC.
Harry Leeming introduces the Visible App and wearable armband
Harry Leeming introduces the Visible App monitoring and wearable armband, allowing daily symptom tracking, morning Heart Rate Variation measurement (even without the armband) and with the armband, continuous Heart Rate monitoring and Pace Point scoring.
Extracts from full Mayo Clinic Article Originally published in October 2023. Selected text and images only included below see full article link at end of page
Concise review for clinicians Volume 98, Issue 10, p1544-1551, October 2023: Stephanie L. Grach, MD, Jaime Seltzer, MS, Tony Y. Chon, MD, Ravindra Ganesh, MD, MBBS
Extract – Abstract
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a chronic neurologic disease often preceded by infection. There has been increased interest in ME/CFS recently because of its significant overlap with the post-COVID syndrome (long COVID or post-acute sequelae of COVID), with several studies estimating that half of patients with post-COVID syndrome fulfill ME/CFS criteria. Our concise review describes a generalist approach to ME/CFS, including diagnosis, evaluation, and management strategies. (c) 2023 THE AUTHORS. Published by Elsevier Inc on behalf of Mayo Foundation for Medical Education and Research. This is an open access article under the CC BY-NC-ND license (http://creativecommons.org/licenses/by-nc-nd/4.0/) n Mayo Clin Proc. 2023;98(10):1544-1551
The Lumia Device sits on your outer ear and measures changes in blood flow to the head. This short video on X/Twitter shows how it can show changes in blood flow for those with Orthostatic Intolerance when standing, sitting or lying down.
Today, #ThereForME launched a campaign to strike back at the Government asking them to #FundThePlan.
People with ME were invited to produce a short video appealing to Wes Streeting (Secretary of State for Health ) and Ashley Dalton (recently appointed Under-Secretary of State / Department of Health and Social Care)to allocate new funding to the long awaited UK Delivery Plan for ME
In this SciShow video, Stefan Chin presents a snappy summary that trying to exercise your way out of ME/CFS is going to end in tears. They say that “ME/CFS, or Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, is way more than being tired at the end of the day. And, contrary to situations like that, exercise is the last thing you’d want to do.”
There are over 1400 comments on the video here on YouTube if you are keen to hear what people are saying or to give feedback yourself:
