Ihr #cfs betroffenen, kann mir jemand eine Einschätzung geben, ob es eine Variation in der Ausprägung gibt? Also was außer „ich liebe 24/7 im abgedunkelten Schlafzimmer“ noch dazu zu rechnen ist?
Ich bekomme nur widersprüchliche aussagen und würde gerne von Menschen mit Informationen aus erster Hand etwas darüber erfahren.
Also wie ungefähr ist die Range von „Schlafzimmer“ bis „nur geringfügig eingeschränkt“ und ab wann geht das über „Du Simulant“ hinaus?
(Sorry, wenn ich mich seltsam ausdrücke, aber ich weiß es derzeit nicht wirklich besser)
So, here’s some personal and professional news… I’m going to be leaving my job pretty soon. 😬
It’s a bit of a wrench, because this job has been a big and exciting thing, for lots of reasons. But, you know, I have been having a shit of a time with the old #CFS and #POTS lately, and…
I know I’m waaay luckier than most people in such situations … I’m not facing financial ruin or homelessness; I have state-funded healthcare etc … so I’m wary about dishing out sanctimonious advice (fellow disabled folk, feel free to tell me to get lost), but I urge everyone to fight for work-life balance/rest/recovery/adequate sick-leave/workplace accommodations/remote working/occupational health support/whatever might help you BEFORE you get to the ‘no choice’ stage.
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Emerge Australia responds with a statement of concern to updated an Royal Australian College of General Practitioners ME/CFS Guideline which recommends incremental physical activity, as a replacement in name for Graded Exercise Therapy
Exploring levels of TSH and FT4 in patients with #ChronicFatigueSyndrome (#CFS), #fibromyalgia (#FM) and healthy controls did not reveal any associations between fatigue score and level of #thyroid hormones
Fukuda criteria were used for CFS diagnosis. The authors conclude that, although they found no between group differences, "we suggest future studies to examine the field further by exploring the influence of thyroid receptors and responses of the thyroid hormone cascade".
Be Wary of Flawed Diagnosis Criteria for ME/CFS
— A new CDC-funded paper includes criteria that may be leading to inaccurate prevalence rates
by Leonard Jason
The #CFS empirical case criteria (Reeves, 2005) are a weird operationalisation of the Fukuda criteria. I campaigned against them previously, including setting up this petition against them which people can still sign https://www.ipetitions.com/petition/empirical_defn_and_CFS_research
Agreed! Any diagnostic criteria for ME/CFS that does not include PEM (post exertional malaise, also called PESE, post exertional symptom exacerbation) seems seriously flawed to me.
We often hear from people with ME seeking our support because they have to see a physiotherapist for a problem other than ME. This could be something like a shoulder injury, or following knee surgery, or neck pain etc....
I think today was the first day this year that I managed to go on a stroll again. My negativity bias is shocked that it took almost two months, but I hope it'll be the first step of progress.
Day 1 of my 2-day CPET done! Feeling pretty exhausted; hopefully that means all the numbers when I do it again tomorrow will show post exertional malaise (PEM).
"The internet is a valued source of support for people with #MECFS in terms of sharing of experiences, legitimacy, empowerment, & integration into people’s everyday lives"
#LongCOVID & ME/CFS have overlapping symptoms, yet many studies overlook the proportion of individuals with long #COVID who meet ME/ #CFS criteria. Read more about current estimates of the proportion of individuals with long #COVID19 who meet #MECFS criteria:
Trying to work out how to help myself with #CFS anyone have any thoughts or experience with Joshua Leisk and his protocol etc? His site is https://bornfree.life
"scientists in the Netherlands constructed a startling picture of widespread abnormalities in muscle tissue that may explain this severe reaction to physical activity.
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New:
"A visual comparison of the symptom profiles of individuals with a confirmed diagnosis of ME/#CFS versus #LC/#PC revealed a great overlap. Upon closer inspection, the symptom profiles in Figure 1a,b, are nearly identical"
2-minute video of Dave reading his poem plus a separate text piece by him
Dave who became ill with #CFS at 21 17 years ago, describes what it’s like to live with the condition, the impact on his life & sense of self worth, & how he has built a meaningful life, despite the condition.
“Living with chronic fatigue syndrome (CFS) is like being erased. It rubs out what my brain and body can do, turning me into a reduced version of myself.”
“Having CFS is like being a dormant seed, waiting for just enough energy to come alive.”
“There are then the hits to my sense of worth. Often, when my body produces less, I'm seen as worth less. This message is reinforced by
the meagre amounts of finance and research put towards CFS in Australia. It is disheartening when something like the burrowing habits of an animal receives more funding than humans trapped inside their homes by CFS.”
Study done in 2021-2022 had already started including long Covid. Interesting that people in the article complain that their CFS was ignored until they said "long covid"
CDC survey: Chronic fatigue syndrome is not rare
likely boosted by some of the patients with long COVID. The condition clearly “is not a rare illness
ME/CFS Research Published 27 November – 4 December 2023
There have been five new ME/ #CFS studies and twenty-one new #LongCovid studies this week.
Paper four this week is a preprint (meaning the science has not been peer-reviewed and verified) which looks into the relationship between immunological characteristics and intestinal barrier function in #MECFS
patients.
