"What #LongCOVID investigators can learn from four decades of ME/CFS research"

Free:
https://www.sciencedirect.com/science/article/pii/S2949834123000211

@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE @longcovid
#PwLC #PostCovidSyndrome #postcovid #postcovid19 #LC

On this page you will find ongoing ME/CFS clinical trials looking for participants

https://ammes.org/clinical-trials/

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE @mecfs

I cannot express how huge this is. Being able to get a diagnosis via blood test is so HUGE. For those lucky enough to have never experienced it, many of the conditions along with #MECFS that they hope this blood test could diagnose with over 90% certainty normally take YEARS to be diagnosed. #LongCovid #fibromyalgia #ms #LymeDisease
These are all life changing illnesses. The quicker you are diagnosed the quicker you can be treated.

https://www.sciencealert.com/new-blood-test-for-chronic-fatigue-syndrome-has-91-accuracy

3/
A summary article which has lots of embedded links:

“New Blood Test For #ChronicFatigueSyndrome Has 91% Accuracy”

https://www.sciencealert.com/new-blood-test-for-chronic-fatigue-syndrome-has-91-accuracy

@mecfs #MEcfs #CFS #MyalgicE #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome

New level of eccentricity unlocked 😜

I like getting some “outside time” but sometimes rain may be coming so have started to lie under the table

[As I said before, with my ME I’m too ill to go for walks]

@mecfs #MEcfs #CFS #MyalgicE #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome

New Blood Test For Chronic #Fatigue Syndrome Has 91% Accuracy

https://www.sciencealert.com/new-blood-test-for-chronic-fatigue-syndrome-has-91-accuracy

> It can take years for people living with chronic fatigue syndrome to receive a formal diagnosis, and they are a favored few.

#mecfs

"#Yale School of Medicine (YSM) officially launched its new Center for #Infection & #Immunity (CII), established within the Department of #Immunobiology, on August 18."

"The mission of the new center will be to provide a greater understanding of the basic science behind infectious diseases, with an emphasis on #LongCOVID, post-treatment #Lyme disease, and myalgic encephalomyelitis/chronic fatigue syndrome (#MECFS)."

#science #covid19

https://medicine.yale.edu/news-article/post-acute-infection-syndromes-will-be-the-focus-of-new-ysm-center/

ME/CFS Activity Management with a Heart Rate Monitor from Workwell Foundation @4Workwell

https://workwellfoundation.org/wp-content/uploads/2023/01/HRM-Factsheet.pdf

@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE @longcovid
#LongCovid #PwLC #PostCovidSyndrome #postcovid #postcovid19 #LC

Oh fuck I’m crashing!

Sit…

Breathe…

Get pulse down…

Did I do too much just now? Was hardly anything! Overdid it yesterday? Felt mostly ok. The errands the day before? Thought I paced myself well…

Body aches…Nausea…Fog…No no no I really have to get to work—

*let it go, forgive yourself, back to bed, rest, day over*

Trying to gauge activity capacity is hard when post exertion malaise can hit 0–72h later with a big hard NOPE

#PEM #MECFS @mecfs #LongCovid

If things go bad & I can’t get #pain #meds on time, can anyone recommend #herbs/remedies/whatever to help withdrawal?

Also, is there anything legal & equivalent in pain control to 25ug fentanyl (not as strong as you think). If I can find something I don’t need a script for that would be great so I’m not held hostage like this in future.

Medicating yourself is pretty much illegal in #Australia unless it’s alcohol.

#Kraktom is illegal btw

#ChronicPain @chronicpain
#Mecfs @mecfs #Endometriosis

4/

We got this email today which confirms the competition is still ongoing.

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE
@mecfs

Over 5,200 signatures in a week!

Thank you to all of you who have signed and shared so far, it has been especially moving reading all the comments left, most talking about harms from inappropriate exercise 'therapy'.

#MECFS #LongCovid

https://www.change.org/p/cochrane-withdraw-the-harmful-2019-exercise-therapy-for-cfs-review

"Ähnlich wie Long Covid ist ME/CFS eine Erkrankung, die u. a. durch große Müdigkeit gekennzeichnet ist."

Große Müdigkeit?? Ich schreie gleich! (Später im Artikel wird dann eh differenziert, aber.)

#MECFS #MillionsMissing
https://science.orf.at/stories/3221149

Today is not a day for the to-do lists that normally help me chug along and keep things more or less on track. I am jelly, and my brain can't get out of neutral. No pain, just #MECFS. Like I am half anethetised. Yeah and I can't spell either.

Need to clear (metaphorical) desk of things to do and decisions to make.

This has snuck up on me a bit. A decision to pull out my entire yarn stash and reorder was probably a bit foolish. Because also, now I'm looking at piles of the stuff and feeling overwhelmed. It would be good to at least just carry this stuff to the back room and shut the door on it. I have a carer later today who could do it, but that would also mean I'd have to explain to her what to do. And that is also a big effort. Herein lies the problem of getting help when you're crashing.

Medically Documenting Disability in #MyalgicEncephalomyelitis / #ChronicFatigueSyndrome (ME/CFS) Cases (2019)

https://shorturl.at/hERST

Coauthored by the lawyer who prevailed on the disability case of @brianvastag disability case and a clinician who has done many ME/CFS disability cases

@mecfs #MEcfs #CFS #MyalgicE #PwME #MyE #ME #millionsmissing #CFSME #CFIDS

Probably of use to some with #LongCovid @longcovid
#PwLC #PostCovidSyndrome #LC #postcovid

“What Does It Mean to Really, Truly Rest?” (December 2022)

https://www.self.com/story/what-does-rest-mean

#spoonie @spoonies #chronicillness @chronicillness #fatigue #fatiguetips #chronicfatigue #chronicfatiguesucks #pacing #rest #resting @mecfs #MEcfs #CFS #MyalgicE #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MyE #ME #millionsmissing #CFSME @longcovid
#LongCovid #PwLC #PostCovidSyndrome #LC #postcovid

September 19

https://batemanhornecenter.org/event/online-support-group-55/

3 PM EDT/8 PM GB & Ireland

Find the time in your time zone here:
https://www.timeanddate.com/worldclock/fixedtime.html?msg=September+19+online+support+group&iso=20230919T13&p1=220&ah=1

Topic: Let's Talk about What Works

Support Group Format

The first 30-minutes will focus on a predetermined topic followed by a general discussion. Support groups are designed to include people with #MECFS, #FM, #LongCOVID, etc.

@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #CFS #PwME @longcovid
#PwLC #PostCovidSyndrome #postcovid #postcovid19 #LC

From the Solve ME/CFS Initiative:

Our flagship research and advocacy journal, The Chronicle, has arrived! This special edition features key resources from our website that community members can utilize as they navigate their journeys with #MECFS or #LongCovid.

Click to read: https://solvecfs.org/wp-content/uploads/2023/09/Solve-Summer-2023-Digital-Resources-Chronicle.pdf

@mecfs #MEcfs #CFS #MyalgicE #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #CFSME #CFIDS
#SEID #NeuroME

UK Patient & Public Involvement (PPI) in ME/CFS research

An ME/CFS-related Immune Research Project based at Imperial College is looking to recruit 2 PPI members for an initial scoping call. The proposal is not currently funded. If the grant is awarded then there will be quarterly online meetings and some remuneration

From @CGATist

https://shorturl.at/gsDM3

@mecfs #MEcfs #CFS #MyalgicE #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MyE @s4me

The German government agency BMBF has announced new funding for the "promotion of interdisciplinary networks for research into the pathomechanisms of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)".

English-language discussion of this
https://www.s4me.info/threads/german-government-announces-new-funding-guidelines-for-me-cfs.35107/ with German link

@mecfs_de @mecfs
#MEcfs #CFS #MyalgicE #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome