tomkindlon, 1 month ago to mecfs

(From the bird site)

ME nieuws @mecvsnieuws

#MEawarenessday video: The ME you don't see

Behind closed doors in the dark, Margot, @StillViv, @DaschaEliza, Ilse, @AnilvanderZee , Lara talk about life with severe ME. @LouCorsius talks about Céline.

Watch full video here: https://youtu.be/DJGk-2G3yE4 (NL+ENG subs)

#millionsmissing @mecfs

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @severeme
#SevereME #SevereMECFS
#SevereCFS #VerySevereME

video/mp4

tomkindlon, 2 months ago to mecfs

Full text published today:

Longitudinal cytokine and multi-modal health data of an extremely severe ME/CFS patient with HSD reveals insights into immunopathology, and disease severity

Free:
https://www.frontiersin.org/journals/immunology/articles/10.3389/fimmu.2024.1369295/full

Funded by the Open Medicine Foundation

@mecfs

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

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tomkindlon, 2 months ago to mecfs

Byline Times: 'A Rollercoaster Of Awful Emotions': Family Speaks Out for NHS Overhaul to Prevent Deaths of Severely Ill ME Patients

https://t.ly/6R73W

The heartbreaking & currently ongoing critical case of #severeME sufferer Millie McAnish

#SevereMEcfs #MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MyalgicE #MyE #ME #millionsmissing #CFSME #CFIDS
#SEID #NeuroME @severeme #severecfs

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tomkindlon, 2 months ago to mecfs

From ABC (Australia):

"Parents of son with #MyalgicEncephalomyelitis / #ChronicFatigueSyndrome want more research into disease"

https://www.abc.net.au/news/2024-03-18/myalgic-encephalomyelitis-chronic-fatigue-syndrome-research/103521080

Also involves EMERGE Australia CEO & medical adviser

#MEcfs #CFS #PwME #SevereME #SevereMECFS #SevereCFS @mecfs @severeme

tomkindlon, 2 months ago to mecfs

🧵

"Failings in the care of patients with #VerySevereME" by Dr Nigel Speight

https://meglobalchronicle.wordpress.com/2024/03/12/failings-in-the-care-of-patients-with-very-severe-me-vsme/

A shocking new article by Dr Speight who helps many desperate young people with ME & their families, to try to arrange safe care & nutrition.

He gives case study information on historic & current patients at risk
in NHS hospitals in the UK.

@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @severeme
#SevereME #SevereMECFS
#SevereCFS #VerySevereME

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tomkindlon, 3 months ago to mecfs

I decided when sending a card to Millie, I would include a couple of interesting papers which show a 20° tilt is enough to cause problems in ME/CFS & separately that orthostatic intolerance wasn't found to be related to deconditioning.

Info:

https://www.change.org/p/save-millie-s-life-royal-lancaster-infirmary-must-stop-causing-millie-harm

@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @severeme
#SevereME #SevereMECFS
#SevereCFS #VerySevereME

tomkindlon, 3 months ago to mecfs

"Currently in the UK, patients with severe ME who become unable to eat are routinely denied tube feeding and left to starve."
https://mecfs.substack.com/p/the-need-for-an-nhs-protocol-to-combat

Tragically, I'd say such patients are vulnerable in many other countries also

@severeme
#SevereME #SevereMECFS
#SevereCFS #VerySevereME
@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

tomkindlon, 9 months ago to mecfs

Autonomy, dignity & independence

It's not a topic I'm that familiar with so I found it a bit abstract: I would have preferred more examples

Html:
https://www.emerge.org.au/autonomy-dignity-and-independence/

PDF:
https://emerge.org.au/wp-content/uploads/2023/04/autonomydignityandindependence-final.pdf

@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE
#SevereME #SevereMECFS
#SevereCFS #VerySevereME
@severeme

IrishMECFSAssociation, 10 months ago to mecfs

"Caring for people with ME/CFS who are bedbound" (2023)

8-page fact sheet from
@EmergeAus

https://emerge.org.au/wp-content/uploads/2023/04/caringforpeoplewithmecfswhoarebedbound.pdf

#SevereME #SevereMECFS #SevereCFS #VerySevereME #MEcfs #CFS @mecfs @severeme

tomkindlon, 11 months ago to mecfs

One month ago to August 8, severe ME day.

I have a Pinterest board with 564 pins on severe ME/CFS here https://www.pinterest.ie/tomkindlon/mecfs-severe-mecfs-mecfs-myalgic-encephalomyelitis/ that could be shared around. It mainly contains images but also links to videos and articles.

You don't need to be on Pinterest.

#SevereME #SevereMECFS
#SevereCFS #VerySevereME @severeme #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #MyalgicE #PwME @mecfs

tomkindlon, 11 months ago to mecfs

🧵
Extracts from:

"European Network on #MyalgicEncephalomyelitis / #ChronicFatigueSyndrome (EUROMENE): Expert Consensus on the Diagnosis, Service Provision, & Care of People with ME/CFS in Europe (2021)"
which I thought was good

Free:
https://www.mdpi.com/1648-9144/57/5/510

#MEcfs #CFS #PwME @mecfs

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IrishMECFSAssociation, 11 months ago to mecfs

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

https://www.meaction.net/event/me-caregiver-support-call/2023-07-15/

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

Find the time in your time zone here:
https://www.meaction.net/event/me-caregiver-support-call/2023-07-15/

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #MyalgicE #PwME #longhaulers #LongCovid #Covidlonghaulers #PwLC #PostCovidSyndrome #postcovid #postcovid19 @mecfs @longcovid #SevereME #SevereMECFS
#SevereCFS

IrishMECFSAssociation, 1 year ago to longcovid

Saturday, May 20:
Caregiver Support Call (for caregivers of people with ME (#MyalgicEncephalomeylitis), #LongCovid and Associated Conditions)

3:30 PM EDT/8:30 PM GB & Ireland
Find the time in your time zone here:
https://www.timeanddate.com/worldclock/fixedtime.html?msg=CAREGIVER+SUPPORT+CALL&iso=20230520T1530&p1=179&ah=1

We welcome caregivers of people with chronic diseases such as ME, @longcovid, #MCAS, etc. to join our calls to connect with and support each other.
https://www.meaction.net/event/me-caregiver-support-call/2023-05-20/

#ChronicFatigueSyndrome #MEcfs #CFS #SevereME @severeme #SevereCFS #VerySevereME

IrishMECFSAssociation, 1 year ago (edited 1 year ago) to mecfs

May is Myalgic Encephalomyelitis (ME) Awareness Month.

You can help by liking and/or retooting this video. This 2017 TED talk features @jenbrea.

https://youtu.be/Fb3yp4uJhq0

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

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