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Tom Kindlon · @tomkindlon
752 followers · 1929 posts · Server disabled.social
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#MyalgicEncephalomyelitis #chronicfatiguesyndrome #mecfs #cfs #pwme #myalgice #SevereME #severemecfs #severecfs #verysevereme

Last updated 1 year ago
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Tom Kindlon · @tomkindlon
725 followers · 1824 posts · Server disabled.social
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Austria:
"Artists severely affected by have created an exhibition about their disease which is currently on display at Künstlerhaus in Vienna

Link that should translate webpage into whatever language you want:
www-kuenstlerhaus-at.translate

@mecfs



@severeme

#mecfs #MyalgicEncephalomyelitis #chronicfatiguesyndrome #cfs #pwme #myalgice #cfsme #meeps #cfids #seid #NeuroME #SevereME #severemecfs #severecfs #verysevereme

Last updated 1 year ago
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Irish ME/CFS Association · @IrishMECFSAssociation
178 followers · 1548 posts · Server mastodon.ie

“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 . I live my life in one room, always in my bed.“

rb.gy/d6d2o

@mecfs

#verysevereme #mecfs #cfs #myalgice #myalgicencephalomyelitis #severeme #pwme

Last updated 1 year ago
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PurpleSpeedwell · @PurpleSpeedwell
140 followers · 292 posts · Server disabled.social
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#SevereME #pwme #myalgice #verysevereme

Last updated 1 year ago
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Tom Kindlon · @tomkindlon
696 followers · 1658 posts · Server disabled.social
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From: @brokenbattery

New Video: Very Severe is a debilitating condition causing profound suffering and life threatening symptoms. They are bedridden and dependent on care. Most doctors have had no training; leading to misdiagnosis, Inappropriate management and medical neglect.



@severeme @mecfs

#mecfs #SevereME #severemecfs #severecfs #verysevereme #severemeday #MyalgicEncephalomyelitis #chronicfatiguesyndrome #cfs #pwme #myalgice #cfsme

Last updated 1 year ago
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Tom Kindlon · @tomkindlon
696 followers · 1657 posts · Server disabled.social
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On (August 8), I remember my friend Ruth Nolan from Glasnevin, Dublin, Ireland who has spent 3 decades bedbound with

For 14+ yrs she has had : she's only able to have a few very short conversations & very little cognitive/mental stimulation☹️

@mecfs#MyalgicEncephalomyelitis @severeme

#severemeday #SevereME #verysevereme #mecfs #pwme #cfs #chronicfatiguesyndrome

Last updated 1 year ago
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Irish ME/CFS Association · @IrishMECFSAssociation
175 followers · 1448 posts · Server mastodon.ie
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#severeme #severemecfs #severecfs #verysevereme #mecfs #cfs

Last updated 1 year ago
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Tom Kindlon · @tomkindlon
635 followers · 1352 posts · Server disabled.social
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One month ago to August 8, severe ME day.

I have a Pinterest board with 564 pins on severe ME/CFS here pinterest.ie/tomkindlon/mecfs- 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 @mecfs

#SevereME #severemecfs #severecfs #verysevereme #MyalgicEncephalomyelitis #chronicfatiguesyndrome #mecfs #cfs #myalgice #pwme

Last updated 1 year ago
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Irish ME/CFS Association · @IrishMECFSAssociation
145 followers · 1019 posts · Server mastodon.ie

27/

May is Myalgic Encephalomyelitis (M.E.) Awareness Month.

You can help by retooting this 15-minute video on
& : "Severe & Very Severe ME / CFS / "

Includes comments from professionals (incl. Drs
Muirhead/Weir/Speight/Shepherd/Nacul), patients & carers (incl. Association chair)
Discusses various distressing topics
dialogues-mecfs.co.uk/films/se

@mecfs @cfs

#severeme #verysevereme #myalgicencephalomyelitis #ChronicFatigueSyndrome #meded #Day27 #mecfs #cfs

Last updated 1 year ago
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Anna · @halcionandon
56 followers · 87 posts · Server disabled.social

Need to make if can. Small things. Help.

No help IRL.

#legal #will #law #australia #chronicillness #NEISvoid #disabilitytwitter #verysevereme #pwme

Last updated 2 years ago
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Anna · @halcionandon
496 followers · 1289 posts · Server aus.social

Need to make Legal if can. Small things. Help.
No help IRL.

#will #law #australia #chronicillness #NEISvoid #disabilitytwitter #verysevereme

Last updated 2 years ago
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Tom Kindlon · @tomkindlon
565 followers · 918 posts · Server disabled.social
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"The Gurney Guide for Severe ME Transportation" by Galen Warden

galenwarden.com/post/gurney-gu

I haven't read this free guide. It looks like it focuses on the US with a little discussion on the UK & Australia


@severeme

#SevereME #severemecfs #severecfs #verysevereme #MyalgicEncephalomyelitis #chronicfatiguesyndrome #mecfs #cfs #myalgice #pwme #meeps #cfsme #cfids #seid #NeuroME #bedbound

Last updated 2 years ago
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Anna · @halcionandon
51 followers · 81 posts · Server disabled.social

I can’t keep up with life and am missing out on medical care because doctors don’t understand how bad having plus a dozen other diseases is. And this is before they understand how bad my environment is. Last GP was abusive himself.

#verysevereme

Last updated 2 years ago
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Tom Kindlon · @tomkindlon
559 followers · 871 posts · Server disabled.social

2/

Includes a two-minute interview with a woman bedbound with whose weight dropped so low she needed a nasogastric tube for feeding. Also featured is a young woman who is now a long term patient in a hospital.

@severeme

#SevereME #mecfs #cfs #pwme #myalgice #verysevereme #MyalgicEncephalomyelitis #chronicfatiguesyndrome

Last updated 2 years ago
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Tom Kindlon · @tomkindlon
554 followers · 854 posts · Server disabled.social

ME Association:

Tiegan Greenwood – a very long day’s golf for an exceptionally good cause

At 4am on Saturday 17th June, Wayne – the father of an 18-year-old girl who has been unable to get out of bed for months because of her severe M.E. – will gather with friends at Hagley Golf Course just outside Stourbridge to play four complete rounds of the course by sundown.

meassociation.org.uk/2023/04/t

@SevereME

#SevereME #severemecfs #severecfs #verysevereme #mecfs #cfs #myalgice #pwme #meeps #cfsme

Last updated 2 years ago
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Tom Kindlon · @tomkindlon
544 followers · 802 posts · Server disabled.social
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(UK) Tube feeding questionnaire

A patient advocate who I respect plugged this, saying:

·Should not take more than 30 minutes, depending on your responses.

·Open for 2 months.

bournemouth.onlinesurveys.ac.u

A paper copy can be obtained from PINNT Charity pinnt.com/Home.aspx



@severeme

#SevereME #severemecfs #severecfs #verysevereme #MyalgicEncephalomyelitis #chronicfatiguesyndrome #mecfs #cfs #myalgice #pwme #meeps #cfsme #cfids #seid #NeuroME

Last updated 2 years ago
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Irish ME/CFS Association · @IrishMECFSAssociation
121 followers · 703 posts · Server mastodon.ie
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#myalgicencephalomyelitis #ChronicFatigueSyndrome #mecfs #cfs #myalgice #pwme #meeps #severeme #severemecfs #severecfs #verysevereme

Last updated 2 years ago
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Tom Kindlon · @tomkindlon
542 followers · 759 posts · Server disabled.social
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A lot of this is made up of useful extracts on what the NICE ME/CFS Guidelines says about Severe M.E/C.F.S
=======
(In UK)
ME Foggy Dog

This is an ongoing project (M.E Awareness Hour went very well last night!)

Please forward the guide to your politician (applies to devolved nations too) either tag them on social media or drop them an email.

Guide link - d1fdloi71mui9q.cloudfront.net/

youtu.be/G_KOdTrYyvQ
@severeme

#mpdoyourjob4me #pwme #mecfs #SevereME #severemecfs #severecfs #verysevereme

Last updated 2 years ago
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Tom Kindlon · @tomkindlon
532 followers · 694 posts · Server disabled.social
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"Seeking people aged under 65 and living in residential aged care"

Learn more just starts an email to education@emerge.org.au rather than a link

@severeme

#australia #SevereME #severemecfs #severecfs #verysevereme #MyalgicEncephalomyelitis #chronicfatiguesyndrome #mecfs #cfs #pwme

Last updated 2 years ago
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Tom Kindlon · @tomkindlon
532 followers · 694 posts · Server disabled.social
ME Association - Tiegan’s parents join our hunt for treatments and a cure | The ME Association

"A Shropshire couple, who provide devoted round-the-clock care for their bedridden 18-year-old daughter, have chosen to raise awareness of her condition through a fundraiser with The ME Association. Their daughter has a severe form of M.E. linked to ()."

meassociation.org.uk/2023/03/t

@severeme

#PosturalOrthostaticTachycardiaSyndrome #pots #MyalgicEncephalomyelitis #chronicfatiguesyndrome #mecfs #cfs #myalgice #pwme #meeps #SevereME #severemecfs #severecfs #verysevereme

Last updated 2 years ago
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