CFS

britt,
@britt@mstdn.games avatar

The elusive good night sleep. 😴

I get one of these once every 3 months, maybe?

I shall compound my interest and make today a rest day. Onward to binging Netflix.

WagesOf,
@WagesOf@gamepad.club avatar

@britt Saturday is Blue Eye Samurai day. :D

rowdy, Dutch
@rowdy@mastodon.social avatar
rowdy,
@rowdy@mastodon.social avatar

@sarah @heiglandreas I couldn’t find a extensive version. I see they mention it in the CfP a bit.

sarah,
@sarah@phpc.social avatar

@rowdy @heiglandreas I noticed that as well, which makes me more comfortable, but I would love to have a formally written one.

Being trans has you looking for things like this, unfortunately.

nischenleben, German
@nischenleben@todon.eu avatar

Da, hier, mal Butter ins Aquarium. 🙈

Ihr 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)

tomkindlon,
@tomkindlon@disabled.social avatar

New from the Netherlands:

Another infection associated with long-term negative effects

Work participation, social roles, and empowerment of Q-fever fatigue syndrome patients ≥10 years after infection

https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0302573

@mecfs

drandrewv2,
@drandrewv2@freeradical.zone avatar

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 and lately, and…

📢 🚨

If you can’t do the job and preserve your health, there will come a point when you just can’t do the job.

That’s not a choice.

It’s an inescapable law of nature.

drandrewv2,
@drandrewv2@freeradical.zone avatar

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.

And join a fucking union.

VoxDei,
@VoxDei@qoto.org avatar

@drandrewv2 Sorry Jenny. That sucks. I hope you've got something interesting planned that you're able to do.

tomkindlon,
@tomkindlon@disabled.social avatar
tomkindlon,
@tomkindlon@disabled.social avatar

2/
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

https://www.emerge.org.au/news/racgp-handi-guide-exercise-for-me-cfs/


@mecfs

tomkindlon,
@tomkindlon@disabled.social avatar

3/
David Tuller DrPH: Australian GP Group Recommends "Incremental Physical Activity" for "CFS/ME" Patients.

Tuller calls this rebranding wilfully stupid and harmful to patients

https://virology.ws/2024/04/25/trial-by-error-australian-gp-group-recommends-incremental-physical-activity-for-cfs-me-patients/


@mecfs

tomkindlon,
@tomkindlon@disabled.social avatar

New from Norway:

Exploring levels of TSH and FT4 in patients with (), () and healthy controls did not reveal any associations between fatigue score and level of hormones

Free fulltext:
https://www.tandfonline.com/doi/full/10.1080/08039488.2024.2332442

@mecfs

@fibromyalgia

tomkindlon,
@tomkindlon@disabled.social avatar

2/

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".

@mecfs @fibromyalgia

tomkindlon,
@tomkindlon@disabled.social avatar

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

https://www.medpagetoday.com/opinion/second-opinions/109274

The 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


@mecfs

ahimsa_pdx,
@ahimsa_pdx@disabled.social avatar

@tomkindlon

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.

@mecfs

Sven,
@Sven@mstdn.games avatar

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.

Spring is around the corner, after all.

jimmyb,
@jimmyb@selfhosted.cafe avatar

@Sven Glad to see/hear you were able to get outside! 🌲🌿

eladnarra,
@eladnarra@disabled.social avatar

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).

/CFS

ahimsa_pdx,
@ahimsa_pdx@disabled.social avatar

@eladnarra I hope you get some helpful results 🤞

eladnarra,
@eladnarra@disabled.social avatar

@ahimsa_pdx Thank you!

tomkindlon,
@tomkindlon@disabled.social avatar

New
A systematic scoping review of how people with ME/ use the internet

Free
https://www.tandfonline.com/doi/full/10.1080/21641846.2024.2303887

"The internet is a valued source of support for people with in terms of sharing of experiences, legitimacy, empowerment, & integration into people’s everyday lives"

Looks sympathetic. Lead author has

@mecfs

bettje37,

@tomkindlon @mecfs it's true. the only thing I miss, but maybe that is expressed by the word empowerment, is information about research

tomkindlon,
@tomkindlon@disabled.social avatar
tomkindlon,
@tomkindlon@disabled.social avatar

From ME Research UK

& ME/CFS have overlapping symptoms, yet many studies overlook the proportion of individuals with long who meet ME/ criteria. Read more about current estimates of the proportion of individuals with long who meet criteria:

https://www.meresearch.org.uk/estimating-me-cfs-prevalence-in-individuals-with-long-covid

@mecfs
@longcovid
@covid19

VickiWoodward,
@VickiWoodward@aus.social avatar

Trying to work out how to help myself with anyone have any thoughts or experience with Joshua Leisk and his protocol etc? His site is https://bornfree.life

amberlove,
@amberlove@mastodon.social avatar

"scientists in the Netherlands constructed a startling picture of widespread abnormalities in muscle tissue that may explain this severe reaction to physical activity.

Among the most striking findings were clear signs that the cellular power plants, the mitochondria, are compromised and the tissue starved for energy."

https://www.npr.org/sections/health-shots/2024/01/09/1223077307/long-covid-exercise-post-exertional-malaise-mitochondria

tomkindlon,
@tomkindlon@disabled.social avatar

A big thank you to everyone who did anything, big or small, for the / cause in 2023 (including simply sharing messages on social media).

Together we can make a difference.

@mecfs

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