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Tom Kindlon-IrishME
@IrishMECFS
Focuses on Irish news on #MyalgicE/#ChronicFatigueSyndrome or is related (+ some personal news). #MEcfs #CFS #PwME.
Main (international) account:
Tom Kindlon-IrishME’s Tweets
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Image is popular Oct 11 Irish Times article on #MyalgicEncephalomyelitis.
Can still be read for free here:
irishtimes.com/health/your-we
Contains personal stories on various illness severities & general discussion
Thanks to those who spoke (some tagged)
#LongCovid #PwME #MyalgicE
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#MEcfs #MEcvs #LongCovid #PostCovid #PASC #QVS #ChronicLyme
"Progress in treating the disease has been hindered by an inaccurate belief that it’s a psychological disorder"
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"More recently, patient activism, combined with new data on the underlying biology of the illness, has resulted in changes in treatment guidelines and a renewed focus on ME as a biologically grounded post-viral disease."
#MECFS #LongCovid #DecodeME
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Really thorough article from @PatrickFreyne1 in @IrishTimes, with valuable historical account of the medical misogyny towards #MECFS from @b_m_hughes.
Plus the text-to-speech button on the page is helpful for #brainfog as well as visual impairments
irishtimes.com/health/your-we
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Great article here on ME. After my outing on Monday I still haven't recovered. More research needs to be done.
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Last year we published this research paper: “Understanding the economic impact of #myalgicencephalomyelitis/#chronicfatiguesyndrome in Ireland:a qualitative study”
hrbopenresearch.org/articles/3-88 with
From a project
#costofdisability #CFS
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Watch our video for International Day for the Eradication of Poverty which highlights the #costofdisability featuring the stories of self-advocates Mark Mitchell & Catherine Cooper youtube.com/watch?v=xy9Y1L #EndPoverty #EndPersistentPoverty #17OctIRL @MSIRELAND @centralremedial
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In 2021 we published this research paper: “Understanding the economic impact of #myalgicencephalomyelitis/#chronicfatiguesyndrome in Ireland: a qualitative study”
hrbopenresearch.org/articles/3-88 with
From a project
#CostOfDisability #MEcfs
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"The money for disability, it doesn’t cover the costs. I think people are going to suffer this winter. Especially people with disabilities."
Catherine highlights the extra #CostOfDisability in our #IDEP2022 #17OctIRL video.
youtube.com/watch?v=xy9Y1L #EndPersistentPoverty
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POP QUIZ!
#MECFS or #LongCovid?
- no cure
- no effective treatment
- 100,000 - 250,000 Aust cases
- disproportionately affects women
Answer: BOTH
* Long Covid is basically MECFS v2.0
* MECFS ranks as the worst health related quality of life condition 😕
Insightful article below
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I spoke to a lot of people about the changing understanding of ME and wrote this piece:
irishtimes.com/health/your-we
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Best Irish article I have seen yet on post viral illnesses such as ME and Long Covid.
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I spoke to a lot of people about the changing understanding of ME and wrote this piece:
irishtimes.com/health/your-we
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#LongCovid has been a #gamechanger to #MECFS.
“frontline healthcare workers, people who know a lot…have lingering symptoms that are so similar to #ME…and these doctors are not fooled by traditional medical folklore that psychotherapy will do the trick.”
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Image is popular Oct 11 Irish Times article on #MyalgicEncephalomyelitis.
Can still be read for free here:
irishtimes.com/health/your-we
Contains personal stories on various illness severities & general discussion
Thanks to those who spoke (some tagged)
#LongCovid #PwME #MyalgicE
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Bravo
Thanks to
No doctors specialising in #ME for 7500 in NI
ME: ‘I spend 20 hours a day lying down. I have four upright hours in the day’ – The Irish Times
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A must-read for everyone studying/working within #healthcare, welfare and/or in schools
Excellent #article by about the strongly debilitating and often misunderstood #neuroimmunological disease #MyalgicEncephalopathy
aka #MyalgicEncephalomyelitis or #MEcfs
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ME: ‘I spend 20 hours a day lying down. I have four upright hours in the day’ irishtimes.com/health/your-we
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“Those with very severe #ME lie motionless, are tube fed, suffer multiple level pain, suffer periodic paralysis, blood pressure and heart issues…”
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"I spend 20 hours a day lying down. I have four upright hours in the day. That includes sitting. So everything has to happen in those four hours. The cognitive dysfunction, the longer I’m upright, the worst that gets. Pain will set in and get worse."
#pwME
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I spoke to a lot of people about the changing understanding of ME and wrote this piece:
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“He’s not worn out. Alan is very, very sick. He can barely talk. He is at a stage where he can say a couple of words maybe a couple of times a week if it’s a good week." #Myalgicencephalomyelitis #LongCovid #mecfs
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This is a fantastic article which I urge you to read. At the height of my severe M.E., I was land flat for twenty-four hours, seven days a week. Interestingly, I was on blood thinning injections and it didn't cure my symptoms, although they did improve over time.
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For me, having #MECFS is like being a ghost in my own life. I can see what my life could be, glimpse what I'm missing, but cannot participate. Years slip by & all I can do is endure each day, hoping for a cure. #MyalgicEncephalomyelitis
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Thank you to all involved in writing this amazing & hard-hitting article on ME. Thanks to @PatrickFreyne1 for listening to & writing about the truth as known by the ME experts as well as patients @IrishMECFS, @Millondolly68 & carers @Anonetal123 . 

irishtimes.com/health/your-we
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Thank you to all involved in writing this amazing & hard-hitting article on ME. Thanks to for listening to & writing about the truth as known by the ME experts as well as patients , & carers . 💙🙏👊
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Thank you for this brilliant article. So refreshing to read something so balanced giving an accurate insight into the constant battle with this horrible illness. Its shameful that it’s taken so long (and LC) for ME to be talked about seriously. But we will continue to fight 💪🏻💙
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I spoke to a lot of people about the changing understanding of ME and wrote this piece:
irishtimes.com/health/your-we
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Replying to
Thank you Patrick, for venturing into the shadowy world of ME. Instead of care and understanding, so many people with ME are shunned & ridiculed. For the most severely affected, they're barely managing to cling on to life; 'living' a solitary existence that few could comprehend.
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I couldn't believe my eyes when I read this yesterday morning, an article on ME in the Irish Times hitting all the right points, interviewing all the right people, empathetic, attentive, determination to do the subject and patients justice, thank you very much!
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"I have better control of my life but I still live with my parents. I’m 50. I’ve had no relationships. I was too ill to have anything like that. No jobs. It’s really had a huge effect on my life."
Great article depicting the sad realities of life with ME.
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Excellent piece on Myalgic Encephalomyelitis in todays Irish Times, thanks to for his broad research on the subject, for his engaging & attentive questioning & for reaching all the right people for interview who spoke so factually about ME
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Living with severe ME. "She thinks that in a society obsessed with productivity, the idea of someone needing rest and recuperation is viewed as morally suspect. You’ve got to find another way to be in the world.”
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“I end up with about 6-8 hours/week which I call disposable time,like disposable income.All work/socialising/hobbies happens in those 6-8 hrs. It’s v v limited in one way but on the other hand,u learn what’s really important & to put your energy into what is really of value to u”
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ME: ‘I spend 20 hours a day lying down. I have four upright hours in the day’ irishtimes.com/health/your-we
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Thanks to everyone who shared +/or read the Irish Times article on ME👍 👏irishtimes.com/health/your-we
In Irish Times morning email bulletin, it was at #3. This would have meant more random people would have read it
#MyalgicEncephalomyelitis #MEcfs #CFS #PwME #MEeps #CFSME #NeuroME
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screencap of the article! if you’re a friend, take a little time out of your day and learn something new 🥺
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From the Irish Times. "ME: ‘I spend 20 hours a day lying down. I have four upright hours in the day’"
irishtimes.com/health/your-we
I also discussed my personal story
Also includes: @Millondolly68/@b_m_hughes/@dbkell/@RoisinKeogh4/@Anonetal123
#MEcfs #CFS #MyalgicE #PwME #LC #CFSME
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We are so lucky to have patient advocates like Tom and Moira , much thanks to them and everyone who contributed to this article! Good to see such an accurate media article on M.E.
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That’s me speaking about my life today in the Irish Times
Others interviewed include @b_m_hughes, @Millondolly68, @dbkell, @RoisinKeogh4, @Anonetal123.
#MyalgicEncephalomyelitis #LongCovid #PwME #SevereME twitter.com/kimisgubbed/st…
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This is a great article on #MECFS, for those curious and wanting to learn more.
This one does a good job too of being more inclusive of the full spectrum of this post infectious illness.
Thank you ! 🙏
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I spoke to a lot of people about the changing understanding of ME and wrote this piece:
irishtimes.com/health/your-we
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A brilliant article that captures the intricacies of this awful illness. All journalists writing about ME/CFS and LC should be following the lead of and - carefully researching and focusing on the patients and the science
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I spoke to a lot of people about the changing understanding of ME and wrote this piece:
irishtimes.com/health/your-we
Show this thread
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Thank you for listening to and sharing our story, one of many, some much worse than ours. Thanks also to for facilitating and big thanks to for getting a hardcopy version for us. I so hope that one day my husband will be well enough to read it.
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I spoke to a lot of people about the changing understanding of ME and wrote this piece:
irishtimes.com/health/your-we
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An excellent piece on this difficult illness. As someone who has been dealing with this for decades since encountering a virus & getting a deadly prognosis (but still here!🤗) its accuracy brought me to tears. Luckily mine does not limit mobility, but it is extremely limiting.
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I spoke to a lot of people about the changing understanding of ME and wrote this piece:
irishtimes.com/health/your-we
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Replying to
It's excellent thanks, can't fault it unlike most articles about ME. I've already shared it a few times today, it should be used as a good example of journalism on this this subject along with the recent one by
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Such a brilliant article! You have really captured the intricacies of this awful illness. Your carefully researched writing is a breath of fresh air, I wish all journalists writing about this followed your lead and focused on the patients and the science!
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For some people I've spoken with, 4 hours upright would be an improvement.
Wade into this piece to build your understanding of #ME, and are excellent follows to learn more.
irishtimes.com/health/your-we
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I spoke to a lot of people about the changing understanding of ME and wrote this piece:
irishtimes.com/health/your-we
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Times interview with tells of the reality of ME for one man, but speaks to the realities for so many people living with ME/CFS and also of his/their fortitude to expend precious energy campaigning for better care - remarkable!
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Good work everyone who has been reading and sharing it.
It is now at number 3!
I'll be going to bed soon. Perhaps people can keep an eye on it to see does go any higher:
irishtimes.com/most-read/
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