• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Search results

  1. T

    Comments from an ME/CFS perspective on “The Green Paper on Disability Reform:a flawed effort to reform payments for people with disabilities"(Cousins)

    (This relates to matters in the Republic of Ireland so may have minimal interest for people in other countries) I thought I would make a quick post to share some extracts from, and comments on, “The Green Paper on Disability Reform: a flawed effort to reform payments for people with...
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    A comparison of using the social media channels Mastodon and Bluesky to post about ME/CFS and long Covid

    Perhaps of interest if, for example, you are thinking of joining another social media platform. My social media channels are listed here: https://me-pedia.org/wiki/Tom_Kindlon#Online_presence ==== Mastodon vs Bluesky Just in case of interest to anyone: I now have exactly the same number of...
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    Identifying and managing suicidality amongst people with ME: A Conversation with Dr Lily Chu and Dr Eleanor Stein

    I've started threads on this interesting interview on different social media platforms where I'm sharing some extracts: https://x.com/TomKindlon/status/1741193828072051162?s=20 https://bsky.app/profile/tomkindlon.bsky.social/post/3khrztunwzp2n https://www.threads.net/@tomkindlon/post/C1f80a_Cw4G...
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    My first cousin once removed, Lyra Chan, is raising money for the (UK) ME Association

    My first cousin once removed, Lyra Chan, is raising money for the (UK) ME Association. Incidentally, I spent a lot of time with her mum (Rachael) and her siblings and family growing up. They were from outside Newbury in Berkshire (my uncle Brendan was a dentist in Newbury). I had a number of...
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    DecodeME: Take Part in the World's Largest Genetic Study into ME

    People only have till November 15 to sign up. Please get the word out to encourage people to sign up
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    The viral origin of myalgic encephalomyelitis/chronic fatigue syndrome (Hanson, 2023)

    Viral Origins of Chronic Fatigue Syndrome May Be Hiding in Plain Sight HEALTH 03 September 2023 By CLARE WATSON https://www.sciencealert.com/viral-origins-of-chronic-fatigue-syndrome-may-be-hiding-in-plain-sight On recent paper by Maureen Hanson "The viral origin of myalgic...
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    Severe ME Day, August 8 2023 and Severe ME week

    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...
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    Severe ME Day, August 8 2023 and Severe ME week

    From the ME Association: #SevereMEWeek2023 - We need your stories, please..... #SevereME Week is a time to raise awareness of those in the community who are often most neglected. It is important that people understand that this condition can be extremely life-limiting – especially in the...
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    Severe ME Day, August 8 2023 and Severe ME week

    A thread on this
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    Autoantibodies to selenoprotein P in chronic fatigue syndrome suggest selenium transport impairment & acquired resistance to thyroid hormone, Sun,2023

    Free full text: https://www.sciencedirect.com/science/article/pii/S2213231723001970 Autoantibodies to selenoprotein P in chronic fatigue syndrome suggest selenium transport impairment and acquired resistance to thyroid hormone Qian Sun a b 1, Elisa Oltra c 1, D.A. Janneke Dijck-Brouwer d 1...
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    Recording for Dr William Weir talk (May 2023) now available to watch for free

    Recording for Dr Weir talk now on Facebook (you don't need a Facebook account) Thanks to our volunteers and supporters who make our activities possible. 👍
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    Large Irish Independent article: "ME in the family: ‘At 12, my daughter is teaching her brother how to manage symptoms. It’s sad seeing them share str

    Features the family of Sarah O'Connell, Dr Nigel Speight and Tom Kindlon (me) https://m.independent.ie/life/health-wellbeing/health-features/me-in-the-family-at-12-my-daughter-is-teaching-her-brother-how-to-manage-symptoms-its-sad-seeing-them-share-strategies/a20437052.html Unfortunately it is...
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    Comment by 'Tom Kindlon' in '(Dublin) Informal ME/CFS social meet-up hosted by Tom Kindlon (Irish ME/CFS Association)'

    2 days to go. 3 people have been in touch to say they are hopeful about attending. 4 others have said they are interested. Whoever comes, comes; I’ll be there with Ilise anyway. My mobility scooter should be nearby.
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    (Dublin) Informal ME/CFS social meet-up hosted by Tom Kindlon (Irish ME/CFS Association)

    3PM - 4:30PM on Monday, June 19 The Bell Bar & Restaurant, Dublin 15, D15 EW77, Ireland https://www.thebell.ie/ I thought I would try this. If it goes well, we might do another one at another stage. Transport/travel: Venue is close to the M50 junction 6. There is a quite big car parking on...
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    Series of free lectures in Ireland from a truly remarkable ME Dr, ICYMI

    The slides are now available for the 5 talks we arranged for Dr William Weir around Ireland this month. PDF file type: https://1drv.ms/b/s!AoHfldspRkWU0oo6jERYvWEMMAam5w?e=QtdXPW PowerPoint file type: https://1drv.ms/p/s!AoHfldspRkWU0oo5iKTN2D0D1AoEsA?e=Y8mkeh We hope to release a video...
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    Thank you card to Dr William Weir

    I've been asked to highlight this thank you e-card for Dr William Weir which anyone can sign. https://ecardforest.co.uk/card/?token=2.eyJjYXJkIjoiajU3NXo2dnozc3MwIiwidyI6MX0.XIGKBH0QgwZ-sNFw03pGaJFh_qQfIAGFjJvPh3JDDhg Many of you will recall that Dr Weir will be giving 5 talks around the...
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    Series of free lectures in Ireland from a truly remarkable ME Dr, ICYMI

    I've been asked to highlight this thank you e-card for Dr William Weir which anyone can sign. https://ecardforest.co.uk/card/?token=2.eyJjYXJkIjoiajU3NXo2dnozc3MwIiwidyI6MX0.XIGKBH0QgwZ-sNFw03pGaJFh_qQfIAGFjJvPh3JDDhg Many of you will recall that Dr Weir will be giving 5 talks around Republic of...
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    Dr David Tuller: Reporting on ME, ME/CFS, long Covid, and "Medically Unexplained Symptoms"

    I’ve donated and shared on Twitter (two accounts), Mastodon, Instagram, Tumblr and Facebook account (personal profile and my ME page). Have highlighted a bit in these places before including daily tweets, or retweets of others, on Twitter.
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    Comment by 'Tom Kindlon' in 'Dr Weir's 5 free Irish ME/CFS talks in Cork/Dublin/Galway/Limerick/Sligo, May 2023'

    I somehow initially gave the wrong address and Eircode for the Maldron Hotel Sandy Road. I have corrected that and thought I would also highlight it here. It is Maldron Hotel Sandy Road Headford Point Sandy Road Galway Co. Galway, Ireland H91 ET6N
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    Comment by 'Tom Kindlon' in 'Dr Weir's 5 free Irish ME/CFS talks in Cork/Dublin/Galway/Limerick/Sligo, May 2023'

    Here's an image I created for the event. Here's a link if anyone felt inclined to retweet or like it on Twitter
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    Series of free lectures in Ireland from a truly remarkable ME Dr, ICYMI

    Here's an image I created for the event. Here's a link if anyone felt inclined to retweet or like it on Twitter
  22. T

    Series of free lectures in Ireland from a truly remarkable ME Dr, ICYMI

    Thanks but. to be honest, I expect only people from the island of Ireland will come. So if you could change it, that would be great. But I appreciate your enthusiasm.
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    Series of free lectures in Ireland from a truly remarkable ME Dr, ICYMI

    Thank you very much for setting up this thread, @YippeeKi YOW !! . One small thing: can you change the title from: "Series of free lectures in UK/Ireland ..." to "Series of free lectures in Ireland ..." as none of the talks take place in the UK. Thanks again. :thumbsup:
  24. Dr Weir's 5 free Irish ME/CFS talks in Cork/Dublin/Galway/Limerick/Sligo, May 2023

    Dr Weir's 5 free Irish ME/CFS talks in Cork/Dublin/Galway/Limerick/Sligo, May 2023

    Dr Weir's 5 free Irish ME/CFS talks in Cork/Dublin/Galway/Limerick/Sligo, May 2023 The Irish ME/CFS Association is pleased to announce that it has arranged for Dr William Weir, a leading international ME/CFS expert from the UK, to give 5 ME/Chronic Fatigue Syndrome talks in Ireland in and...
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    Accommodating University Students with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS) (2020)

    Accommodating University Students with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS) A Guide for Colleges and Universities Lily Chu i , Lynn R Fuentesii , Olena M Marshall iii , Arthur A Mirin iv i Independent Consultant, Burlingame, CA ii CEO, Transformation Teaching, LLC...