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Tom Kindlon · @tomkindlon
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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
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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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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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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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Tom Kindlon · @tomkindlon
634 followers · 1340 posts · Server disabled.social
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5/

Good to see that the severely affected might need accommodations with regard to the physical examination

@mecfs @severeme

#SevereME #severemecfs #severecfs

Last updated 1 year ago
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Irish ME/CFS Association · @IrishMECFSAssociation
155 followers · 1187 posts · Server mastodon.ie
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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
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Irish ME/CFS Association · @IrishMECFSAssociation
144 followers · 984 posts · Server mastodon.ie

18/

May is (ME) Awareness Month.

You can help to raise awareness and understanding by retweeting and/or
liking this 7 minute 8 second-video made on young UK woman with severe
ME

Day 18

www.youtube.com/watch?v=cPH3kKkEYAI&feature=youtu.be

@mecfs @cfs @severeme

#myalgicencephalomyelitis #severeme #severecfs

Last updated 1 year 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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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
533 followers · 709 posts · Server disabled.social


“They only see us on our better days and that might be once every three months but people judge you on that one meeting. Don’t see me on bad days when I don’t eat and try and make it to the toilet.” - Liam Pike, on Facebook

I don't have a direct link for this but it's taken from p34 InterAction 109 Christmas 2021 (magazine of AfME)

actionforme.org.uk/uploads/pdf

@severeme

#SevereME #severemecfs #severecfs #pwme #mecfs #cfs

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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Tom Kindlon · @tomkindlon
532 followers · 694 posts · Server disabled.social
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#MyalgicEncephalomyelitis #pwme #chronicfatiguesyndrome #mecfs #cfs #myalgice #SevereME #severemecfs #severecfs #verysevereme

Last updated 2 years ago
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Tom Kindlon · @tomkindlon
532 followers · 694 posts · Server disabled.social

11/

“Many patients had chosen to say “no, thank you” to help in the home from local authorities. The nurses and other helpers who came to the patient’s home typically had no knowledge about ME/CFS, light and sound hypersensitivity, or how vulnerable the patients were”

@severeme @mecfs

#MyalgicEncephalomyelitis #chronicfatiguesyndrome #SevereME #verysevereme #severecfs #severemecfs

Last updated 2 years ago
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Tom Kindlon · @tomkindlon
532 followers · 694 posts · Server disabled.social
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8/

Trude Schei reports on the results of a rare survey that documented the situation people with face in Norway

healthrising.org/blog/2023/03/

Some extracts below


@severeme @mecfs

#SevereME #MyalgicEncephalomyelitis #verysevereme #chronicfatiguesyndrome #mecfs #cfs #severemecfs #severecfs #meeps

Last updated 2 years ago
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Irish ME/CFS Association · @IrishMECFSAssociation
121 followers · 567 posts · Server mastodon.ie
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From David Tuller

“To access my right to this welfare payment,” she wrote, “I am required to prove my life has been devastated, presenting it as a collection of medico-historical facts about all the things I can’t do, which reminds me of all the things I might have wanted to do and makes my existence sound abject and pitiful.”

codastory.com/waronscience/chr


@severeme

#myalgicencephalomyelitis #ChronicFatigueSyndrome #mecfs #cfs #myalgice #pwme #severeme #severemecfs #severecfs #verysevereme

Last updated 2 years ago
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