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
#myalgicencephalomyelitis #ChronicFatigueSyndrome #mecfs #cfs #pwme #myalgice #LongCovid #pwLC #postcovidsyndrome #PostCovid #postCOVID19 #lc
4/
We got this email today which confirms the competition is still ongoing.
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE
@mecfs
#myalgicencephalomyelitis #ChronicFatigueSyndrome #mecfs #cfs #pwme #myalgice
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
#mecfs #fm #LongCovid #myalgicencephalomyelitis #ChronicFatigueSyndrome #cfs #pwme #pwLC #postcovidsyndrome #PostCovid #postCOVID19 #lc
#MEACTION GEORGIA SUPPORT CALL
https://www.meaction.net/event/meaction-georgia/2023-09-21/
People anywhere in the world are welcome.
1:00 PM EDT/6 PM in Great Britain & Ireland
Find the time in your time zone here
https://www.timeanddate.com/worldclock/fixedtime.html?msg=%23MEACTION+GEORGIA+SUPPORT+CALL&iso=20230921T13&p1=25&ah=1
@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE
#meaction #myalgicencephalomyelitis #ChronicFatigueSyndrome #mecfs #cfs #pwme #myalgice
Free, professionally-facilitated online support group
September 12 @ 1:00 pm - 2:00 pm MDT Free
https://batemanhornecenter.org/event/online-support-group-54/
3 PM EDT/8 PM GB and Ireland
Find the time in your time zone here:
https://www.timeanddate.com/worldclock/fixedtime.html?msg=September+12+Online+Support+Group&iso=20230912T13&p1=220&ah=1
Topic: Strategies for Approaching Treatments
@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE @longcovid
#LongCovid #PwLC #PostCovidSyndrome #postcovid #postcovid19
#myalgicencephalomyelitis #ChronicFatigueSyndrome #mecfs #cfs #pwme #myalgice #LongCovid #pwLC #postcovidsyndrome #PostCovid #postCOVID19
Saturday, September 16
CAREGIVER SUPPORT CALL (for caregivers of people with ME (myalgic encephalomeylitis), #LongCOVID and associated conditions)
https://www.meaction.net/event/me-caregiver-support-call/2023-09-16/
3:30 PM EDT/8:30 PM in Great Britain & Ireland
Find the time in your time zone:
https://www.timeanddate.com/worldclock/fixedtime.html?msg=September+16+CAREGIVER+SUPPORT+CALL&iso=20230916T1530&p1=179&ah=1
@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE @longcovid
#LongCovid #PwLC #PostCovidSyndrome #postcovid #postcovid19 #LC #Covidlonghaulers #longhaulers
#LongCovid #myalgicencephalomyelitis #ChronicFatigueSyndrome #mecfs #cfs #pwme #myalgice #pwLC #postcovidsyndrome #PostCovid #postCOVID19 #lc #covidlonghaulers #LongHaulers
"Wexford woman on a lifetime of chronic pain–‘if I ever get bed-ridden again I’m going to end my life’"
Yvonne tragically spent 7 years bedbound with ME. This gets across the difficult life she has had due to ME & #Fibromyalgia
Shared with journalist's permission
We had difficulty getting an interviewee: thanks to Yvonne for stepping forward 👍
@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE #Fibromyalgia #Fibrositis #Fibro #FMS #FM @fibromyalgia
#fibromyalgia #myalgicencephalomyelitis #ChronicFatigueSyndrome #mecfs #cfs #pwme #myalgice #fibrositis #fibro #fms #fm
3/
Thanks very much to everyone who has gone to https://www.paypal.com/fundraiser/set-favorite-charity & searched for Irish Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Association .
We've just received €157 through this scheme (presumably mostly from the competition) for which we are very grateful. 👍👏
@mecfs #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE
#myalgicencephalomyelitis #ChronicFatigueSyndrome #mecfs #cfs #pwme #myalgice
Light article on the RTE* website:
“Martine McCutcheon says living with an invisible illness [#ChronicFatigueSyndrome] has given her a helpful "perspective of reality" – especially when it comes to falling into the trap of comparing yourself to others.”
*The Irish national, taxpayer-funded media outlet
#ChronicFatigueSyndrome #mecfs #cfs #myalgice #myalgicencephalomyelitis #pwme
Trustee @tomkindlon attended a webinar on Aug 17 organised by the Irish ME Trust, "Social welfare – Disability Allowance & Invalidity Pension"
Access his notes which contain a link to the slides here:
https://1drv.ms/b/s!AoHfldspRkWU04FWBjyxvEM9CtBbqg?e=jbF5TF
or
https://www.mediafire.com/file/rc67xqzspsa064z/webinar.pdf/file
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE
#myalgicencephalomyelitis #ChronicFatigueSyndrome #mecfs #cfs #pwme #myalgice
🧵
Our update for the Hospital Saturday Fund
Thanks very much to the HSF for the core grant of €3000 we received this year which helped us continue our ongoing work and contributed to us being able to organise 5 free meetings with an international speaker, Dr William Weir, during May in Cork, Dublin, Galway, Limerick & Sligo followed by a chance to chat with others over free tea/coffee and biscuits.
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @mecfs @tomkindlon
1/
#myalgicencephalomyelitis #ChronicFatigueSyndrome #mecfs #cfs #pwme
Webinar: Social Welfare – Disability Allowance & Invalidity Pension (organised by the Irish ME Trust)
Tom: I attended a similar webinar last year and found it very good
Email: Info [ @ ] imet dot ie
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE @mecfs
#myalgicencephalomyelitis #ChronicFatigueSyndrome #mecfs #cfs #pwme #myalgice
Bateman Horne Center:
Post-Exertional Malaise (PEM/PESE): Clinical Attributes, Part 2 of 7
This video series is intended to review the clinical presentation, scientific underpinnings, and treatment approach for patients with post-exertional malaise (#PEM)/post-exertional symptom exacerbation (#PESE).
#MEcfs #CFS #MyalgicE @mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome
#PwME #longcovid @longcovid
#pem #pese #mecfs #cfs #myalgice #myalgicencephalomyelitis #ChronicFatigueSyndrome #pwme #LongCovid
ME/CFS article from Emerge Australia
Effective Communication Strategies For Carers
https://emerge.org.au/effective-communication-strategies-for-carers
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE #SevereME @mecfs
#myalgicencephalomyelitis #ChronicFatigueSyndrome #mecfs #cfs #pwme #myalgice #severeme
“I cling to one thing, hope. Hope for a cure, if not for me, for all of my brothers and sisters who suffer with ME, hope that one day the medical profession will make us a priority, and offer understanding, diagnosis, treatment of our multiple symptoms and ultimately the cure.”
https://meassociation.org.uk/2023/08/severe-me-week-2023-sylvias-story/
@severeme @mecfs #MEcfs #CFS #MyalgicE #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
#PwME #MyE #severeme
#severemeweek #mecfs #cfs #myalgice #myalgicencephalomyelitis #ChronicFatigueSyndrome #pwme #mye #severeme
New
“I have had #severeME for 26 years”
“The frustrating thing about sometimes having 30% capacity is that I can do so much more from well-rested but it is an illusion, which masks my true capacities. They are always much lower than I think”
https://meassociation.org.uk/2023/08/severe-me-week-2023-mikes-story/
@severeme @mecfs #MEcfs #CFS #MyalgicE #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
#PwME #MyE #ME #millionsmissing #CFSME
#severeme #mecfs #cfs #myalgice #myalgicencephalomyelitis #ChronicFatigueSyndrome #pwme #mye #me #millionsmissing #cfsme
2/
2/
Martine McCutcheon: “I also ask my friends to google CFS / #fibro symptoms. If they love you, it’s the least they can do! Understanding helps with support. So thank you to our friends who came with a few hours notice!
@mecfs #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE
#fibro #myalgicencephalomyelitis #ChronicFatigueSyndrome #mecfs #cfs #pwme #myalgice
Extract:
"She continued to explain how she manages her life, explaining: "So now, I only surround myself with people who understand that if I need to cancel something (& that can happen often) it’s not a choice I want to make and that they go ahead and book something and if they see me rocking up, it’s a bonus!
https://www.thesun.ie/tv/11161664/martine-mccutcheon-hospitalised-illness-dizzy/
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE @mecfs
1/
#myalgicencephalomyelitis #ChronicFatigueSyndrome #mecfs #cfs #pwme #myalgice
Some medical educational initiatives we have planned for later in the year.
Feel free to send on your GP's details
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE @mecfs
#myalgicencephalomyelitis #ChronicFatigueSyndrome #mecfs #cfs #pwme #myalgice
Thursday, August 17 Lunch & Learn – Virtual Event
Topic: Interior design, remodeling, and refreshing rooms with a chronic illness.
https://batemanhornecenter.org/event/lunch-learn-virtual-event-41/
1:30 PM ET/6:30 PM in Great Britain & Ireland
Find the time in your time zone here
https://www.timeanddate.com/worldclock/fixedtime.html?msg=Thursday%2C+August+17+Lunch+%26+Learn+%E2%80%93+Virtual+Event&iso=20230817T1130&p1=220&ah=2
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE #chronicillness #LongCovid #PwLC #PostCovidSyndrome @longcovid
#myalgicencephalomyelitis #ChronicFatigueSyndrome #mecfs #cfs #pwme #myalgice #chronicillness #LongCovid #pwLC #postcovidsyndrome