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

4/

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

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

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

@tomkindlon @mecfs I know of four of us from my uni friendship circle who have confirmed #MECFS diagnoses. Makes me wonder whether we all had the same viral infection whilst there (1990-93) and then all developed #MyalgicEncephalomyelitis in late C20th/earlyC21st?

#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

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

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

"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

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

@BenDeNevis 🔗 https://mastodon.social/users/BenDeNevis/statuses/110948098889063051
-
A Sudden Illness

https://www.newyorker.com/magazine/2003/07/07/a-sudden-illness

From 2003: Laura Hillenbrand on the mysterious sickness that seized control of her life and wouldn’t let go.

No paywall
https://web.archive.org/web/20230128185530/http://www.newyorker.com:80/magazine/2003/07/07/a-sudden-illness

#MyalgicEncephalomyelitis
#COVID_19

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.”

https://www.rte.ie/lifestyle/living/2023/0823/1401191-martine-mccutcheon-on-living-with-an-invisible-illness/

*The Irish national, taxpayer-funded media outlet

@mecfs
#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

@mecfs

#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/

Full article: Home-based testing protocol to measure physiological responses to everyday activities in ME: a feasibility study

https://www.tandfonline.com/doi/full/10.1080/21641846.2023.2245584

Individuals with #MyalgicEncephalomyelitis (ME) have shown altered physiological responses during maximum cardiopulmonary exercise testing. However, maximal testing is not representative of the eve...

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

Bateman Horne Center:
Post-Exertional Malaise (PEM/PESE): Clinical Attributes, Part 2 of 7

https://youtu.be/84BVPaGdSJU

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

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

“If public health policymakers are to fully learn the profound lessons about human biology and pandemic resilience that this crisis has presented, it means grappling with the reality of complex, chronic illness as an outcome of any infection.” A Paradigm Shift in Research for Infection-Associated Illnesses

https://tcf.org/content/commentary/a-paradigm-shift-in-research-for-infection-associated-illnesses/

#MyalgicEncephalomyelitis
#LongCovid

#severemeweek

“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

“It’s heart-breaking when the people we trust don't trust us, that we are doing our best and know what we are saying. Don't believe in us. Relationships are ripped apart by this. And they have a lasting effect on us, what we perceive as our self-worth and new relationships. And it happens a lot.”

“I'm Katie, I’m 18 and living with #VerySevereME. I live my life in one room, always in my bed.“

https://rb.gy/d6d2o

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