FedSearch
Irish ME/CFS Association · @IrishMECFSAssociation
182 followers · 1900 posts · Server mastodon.ie
Open media

#myalgicencephalomyelitis #ChronicFatigueSyndrome #mecfs #cfs #pwme #myalgice #LongCovid #pwLC #postcovidsyndrome #PostCovid #postCOVID19 #lc

Last updated 1 year ago
Original post

Irish ME/CFS Association · @IrishMECFSAssociation
182 followers · 1876 posts · Server mastodon.ie
Open media

September 19

batemanhornecenter.org/event/o

3 PM EDT/8 PM GB & Ireland

Find the time in your time zone here:
timeanddate.com/worldclock/fix

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 , , , etc.

@mecfs
@longcovid

#mecfs #fm #LongCovid #myalgicencephalomyelitis #ChronicFatigueSyndrome #cfs #pwme #pwLC #postcovidsyndrome #PostCovid #postCOVID19 #lc

Last updated 1 year ago
Original post

Irish ME/CFS Association · @IrishMECFSAssociation
182 followers · 1848 posts · Server mastodon.ie
Open media

Free, professionally-facilitated online support group

September 12 @ 1:00 pm - 2:00 pm MDT Free
batemanhornecenter.org/event/o

3 PM EDT/8 PM GB and Ireland

Find the time in your time zone here:
timeanddate.com/worldclock/fix

Topic: Strategies for Approaching Treatments

@mecfs
@longcovid

#myalgicencephalomyelitis #ChronicFatigueSyndrome #mecfs #cfs #pwme #myalgice #LongCovid #pwLC #postcovidsyndrome #PostCovid #postCOVID19

Last updated 1 year ago
Original post

Irish ME/CFS Association · @IrishMECFSAssociation
182 followers · 1848 posts · Server mastodon.ie
Open media

#LongCovid #myalgicencephalomyelitis #ChronicFatigueSyndrome #mecfs #cfs #pwme #myalgice #pwLC #postcovidsyndrome #PostCovid #postCOVID19 #lc #covidlonghaulers #LongHaulers

Last updated 1 year ago
Original post

Dom · @dom_mecfs
98 followers · 703 posts · Server mas.to

Wow I started one of the EPA brands that @LongCovidPharmD recommended in her substack and the difference is huge! I was just thinking to myself why do I have this much energy this is weird what is going on.

Then I realised I'd taken 2g of EPA. I took the pureepa brand. I had tried a few others including standard mixes with dha and didn't see much benefit. So this is quite a shock.

Pharmepa Restore, 1000mg Pure EPA amzn.eu/d/eERS5Fq

#epa #pwLC #pwme

Last updated 1 year ago
Original post

Irish ME/CFS Association · @IrishMECFSAssociation
178 followers · 1532 posts · Server mastodon.ie
Open media

#myalgicencephalomyelitis #ChronicFatigueSyndrome #mecfs #cfs #pwme #myalgice #chronicillness #LongCovid #pwLC #postcovidsyndrome

Last updated 1 year ago
Original post

Craig Groeschel · @craig_groeschel
12 followers · 70 posts · Server zeroes.ca

I've been dealing with a new symptom the last week or so: my skin feels like it has acid on it (it doesn't, but I want to get some pH test strips), or like I got a bad sunburn a day or two ago (I haven't been outside), or like it is on fire (I am not on fire). I'm thinking dysesthesia. (I like that better than MCAS (in the sense of which one I would bet on), but who knows.)

medicalnewstoday.com/articles/

I don't think it is heat rash because there is no visible rash or hives.

Showering mostly doesn't help. Baking soda slurry mostly doesn't help. NSAIDs kind of help. I feel it mostly on my arms and chest. It's not too bad atm, just my nerves being eaten away, if that's what it is.

Anybody else have this?

#LongCOVID #pwLC

Last updated 1 year ago
Original post

Gary Robinson · @lessorfewer
569 followers · 497 posts · Server mstdn.social

Some questions about cholesterol, statins, and insulin resistance in @longcovid @longcovid@a.gup.pe

Some research shows higher cholesterol after COVID, e.g., thelancet.com/journals/landia/

My LDL-C went sky high with long COVID. I've been taking atorvastatin for 7 months now.

I had confirmed endothelial damage (flourescent microscopy test at Mülheim) and was told that high cholesterol is related to endothelial damage.

1/?

#PostVac #pwme #pwLC #mecfs #LongCovid

Last updated 1 year ago
Original post

BenNevis · @BenNevis
38 followers · 423 posts · Server mastodon.org.uk
Open media

🥀
🕊️

2018

whatdotheyknow.com/request/518

The term chronic fatigue syndrome (CFS) is used to describe an illness that is characterised by physical and mental fatigue and fatigability




#unum #maximus #dwp #myalgicencephalomyelitis #LongCovid #pwme #pwLC

Last updated 1 year ago
Original post

Professor Kerstin Sailer · @kerstinsailer
860 followers · 749 posts · Server sciences.social

Such a good read on what it's like to care for people with a chronic and debilitating illness

One of the many great paragraphs:
"I do accept that this is my role now— I’m a writer and I’m a carer—but no one told me I’d be trapped in a time loop explaining this disease to a society which isn’t listening."

rob-obrien.medium.com/dont-for

#pwLC #pwme #LongCovid #livingwithlongcovid #neisvoid #disability

Last updated 1 year ago
Original post

Irish ME/CFS Association · @IrishMECFSAssociation
157 followers · 1232 posts · Server mastodon.ie
Open media

Lunch & Learn – Virtual Event
July 20 @ 11:30 am - 1:30 pm MDT Free

1:30 PM ET/6:30 PM in Great Britain & Ireland

Find the time in your time zone here
timeanddate.com/worldclock/fix

Comment: Finding joy with this illness is a worthy aim by
itself. If this was someone selling, we probably wouldn't highlight it
but that doesn't look like it's the case.

@mecfs @longcovid

#myalgicencephalomyelitis #ChronicFatigueSyndrome #mecfs #cfs #myalgice #pwme #LongHaulers #LongCovid #covidlonghaulers #pwLC

Last updated 1 year ago
Original post

Irish ME/CFS Association · @IrishMECFSAssociation
155 followers · 1187 posts · Server mastodon.ie
Open media

Saturday, July 15 caregiver support call (for caregivers of people with me (mylagic encephalomeylitis), long covid and associated conditions)

meaction.net/event/me-caregive

3:30 PM EDT/8:30 PM in Great Britain & Ireland

Find the time in your time zone here:
meaction.net/event/me-caregive

@mecfs @longcovid

#myalgicencephalomyelitis #ChronicFatigueSyndrome #mecfs #cfs #myalgice #pwme #LongHaulers #LongCovid #covidlonghaulers #pwLC #postcovidsyndrome #PostCovid #postCOVID19 #severeme #severemecfs #severecfs

Last updated 1 year ago
Original post

Irish ME/CFS Association · @IrishMECFSAssociation
149 followers · 1147 posts · Server mastodon.ie
Open media

From the bird site 🐦
From @tmprowell (MD)

This paper about the impact of on language & cognitive function is frankly devastating.

A couple examples of how affected individuals fared when confronted with photos of objects & asked to name them. Lots of struggling & pauses.

sciencedirect.com/science/arti

@LongCovid

#LongCovid #medtwitter #pwLC #cognitivepsych #brainfog #PostCovid #postCOVID19 #postcovidconditon #CovidLong

Last updated 1 year ago
Original post

Irish ME/CFS Association · @IrishMECFSAssociation
147 followers · 1129 posts · Server mastodon.ie
Open media

Concluding comments from Dr Nigel Speight in June 19 Irish Independent article:

"ME in the family: ‘At 12, my daughter is teaching her brother how to manage symptoms. It’s sad seeing them share strategies’"

m.independent.ie/life/health-w

@longcovid @MEcfs

#LongCovid #pwLC #myalgicencephalomyelitis #ChronicFatigueSyndrome #mecfs #cfs #myalgice #pwme

Last updated 1 year ago
Original post

Irish ME/CFS Association · @IrishMECFSAssociation
147 followers · 1124 posts · Server mastodon.ie
Open media

Thanks to Filomena for this in-depth article in the Irish Independent today👍

It focuses on the family of one of our members Sarah O'Connell. Dr Nigel Speight & our committee member @tomkindlon are also quoted on the 3rd page

@mecfs
---
Original tweet from: Filomena Kaguako 👠 🗞 @FilomenaKaguako

Thank you @SarahOC_MECFS for trusting me with your story for today's @Independent_ie 🗞

m.independent.ie/life/health-w

#mecfs #cfs #pwme #pans #pwLC #myalgicencephalomyelitis #LongCovid #pandaspan

Last updated 1 year ago
Original post

Irish ME/CFS Association · @IrishMECFSAssociation
146 followers · 1071 posts · Server mastodon.ie
Open media

#myalgicencephalomyelitis #pwme #ChronicFatigueSyndrome #mecfs #cfs #myalgice #LongHaulers #LongCovid #covidlonghaulers #pwLC #postcovidsyndrome #PostCovid #postCOVID19 #lc

Last updated 1 year ago
Original post

Irish ME/CFS Association · @IrishMECFSAssociation
146 followers · 1070 posts · Server mastodon.ie
Open media

Thursday June 15 Lunch & Learn – Virtual Event
batemanhornecenter.org/event/l

1:30 PM ET/6:30 PM in Great Britain & Ireland
Find the time in your time zone here:
timeanddate.com/worldclock/fix

Presentation Topic: “The Things I’ve Learned and the Ways I’ve Grown With This Condition”

@mecfs @cfs @longcovid

#myalgicencephalomyelitis #ChronicFatigueSyndrome #mecfs #cfs #myalgice #pwme #LongHaulers #LongCovid #covidlonghaulers #pwLC #postcovidsyndrome #PostCovid #postCOVID19 #lc

Last updated 1 year ago
Original post

Irish ME/CFS Association · @IrishMECFSAssociation
146 followers · 1069 posts · Server mastodon.ie

#myalgicencephalomyelitis #ChronicFatigueSyndrome #mecfs #cfs #myalgice #pwme #LongHaulers #LongCovid #covidlonghaulers #pwLC #postcovidsyndrome #PostCovid #postCOVID19 #lc

Last updated 1 year ago
Original post

Irish ME/CFS Association · @IrishMECFSAssociation
146 followers · 1066 posts · Server mastodon.ie
Open media

ME/CFS-like illness following COVID-19 slides: cdc.gov/me-cfs/pdfs/21-sec-cal

Page 12:
Burden of ME/CFS-like illness after COVID-19 might be very large

United States
258,327,312 adults ×50% had COVID-19 ×1 in 200 with ME/CFS-like illness after COVID-19 = 673,985 (95% confidence interval 177,985-1,169,886)

@mecfs @cfs @longcovid

#myalgicencephalomyelitis #ChronicFatigueSyndrome #mecfs #cfs #myalgice #pwme #LongHaulers #LongCovid #covidlonghaulers #pwLC #postcovidsyndrome #postCOVID19 #lc

Last updated 1 year ago
Original post

Irish ME/CFS Association · @IrishMECFSAssociation
146 followers · 1064 posts · Server mastodon.ie
Open media

#mecfs #cfs #pwme #fibromyalgia #fibro #fms #fm #myalgicencephalomyelitis #ChronicFatigueSyndrome #LongHaulers #LongCovid #covidlonghaulers #pwLC #postcovidsyndrome #PostCovid #postCOVID19 #lc

Last updated 1 year ago
Original post