• 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, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Blog entries by Tom Kindlon

Tom Kindlon
6 min read
Views
1K
Reaction score
3
User Blogs
(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...
Tom Kindlon
1 min read
Views
280
User Blogs
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...
Tom Kindlon
2 min read
Views
1K
Reaction score
2
Comments
2
User Blogs
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...
Tom Kindlon
4 min read
Views
4K
Reaction score
3
Comments
3
User Blogs
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...
Tom Kindlon
3 min read
Views
1K
Reaction score
7
Comments
5
User Blogs
Title: I’m very grateful for the online chronic illness community and feel it can and does make a positive contribution --- I was recently asked to submit some comments about my experiences of using the Internet as somebody with an energy-limiting chronic illness. As I was one of many people who...
Tom Kindlon
3 min read
Views
1K
Reaction score
3
Comments
1
User Blogs
Art has kindly given me permission to share this How many Long COVID patients develop ME/CFS? Art Mirin, 8/20/22 Overview: Of the 5 studies of Long COVID patients below, 4 of them addressed ME/CFS onset (per case definition); the other looked at ME/CFS symptoms. Two of them used CCC, one used...
Tom Kindlon
1 min read
Views
2K
Reaction score
3
User Blogs
Educational event for GPs: "Key messages for Primary Care on the Diagnosis and Management of Post-Viral Fatigue Syndrome and ME/CFS" Time & date: Monday, May 30 2022. 7:30 PM Duration: For just over one hour Cost: Free This is a *doctor-only* event Venue: Online Format: Dr Ros Vallings...
Tom Kindlon
1 min read
Views
6K
Reaction score
1
User Blogs
Educational event for GPs: "Key messages for Primary Care on the Diagnosis and Management of Post-Viral Fatigue Syndrome and ME/CFS" Time & date: Tuesday, March 23, 2021. 7:30 PM Duration: For just over one hour Cost: Free This is a *doctor-only* event (Dr Vallings also recently gave a talk...
Tom Kindlon
1 min read
Views
873
Reaction score
1
User Blogs
From: Irish ME Trust & Irish ME/CFS Association Hi Everyone, The YouTube link below relates to the Online talk and Q&A with Dr Ros Vallings on Tuesday, December 8th. The slides can be downloaded from either here...
Tom Kindlon
1 min read
Views
907
Reaction score
3
Comments
1
User Blogs
I'm posting this to some yahoogroups tonight. In case it is of interest to anyone, I thought I would share it here. Tom --- With yahoogroups closing on December 15, I thought I would share some links to alternative forums and some other links that people might find of use. Phoenix Rising...
Tom Kindlon
2 min read
Views
5K
Reaction score
4
Comments
1
User Blogs
Ten years ago, I believe I was the first to highlight in a peer-reviewed ME/CFS publication that there was no formal system to report adverse reactions to nonpharmacological interventions such as graded exercise therapy, such as the yellow card system that exists for drugs. The following year...
This has now been cancelled: see message below The Irish ME/CFS Association is pleased to announce that it has arranged for Dr William Weir, a leading international ME expert from the UK, to give 4 ME/Chronic Fatigue Syndrome talks in Ireland this May. The talks entitled "ME: Past, Present and...
Tom Kindlon
2 min read
Views
1K
User Blogs
(Ireland) Limerick event on Sat, February 15 (for all with a particular focus on children/young people & parents) Sarah Warde, coordinator of the Limerick ME Self-Help Group has gone to quite a bit of trouble to organise a free event on Saturday, February 15. It is being held in Dooradoyle...
Tom Kindlon
4 min read
Views
2K
Reaction score
2
Comments
1
User Blogs
There is a popular tweet going around by somebody with ME in the UK complaining that biomedical research shouldn't have to be funded/crowd-funded by charities. I have no wish to name this individual; I imagine lots of people have a similar view. But it does give me an opportunity to highlight...
Tom Kindlon
4 min read
Views
2K
Reaction score
3
Comments
2
User Blogs
I think it is important that there is private money raised for research to speed up research progress. For example, researchers will have a better chance of getting government grants if they have pilot data which can be paid for from private funds. Also, ideally private funds would step in to...
Tom Kindlon
5 min read
Views
5K
Reaction score
3
Comments
13
User Blogs
It'd be great if ME/CFS research funds could be set up in more countries, either as part of existing groups, stand-alone or affiliates of other charities As I have argued before, research progress is most likely if all of the following are contributing significant funds to research: (i)...
Tom Kindlon
5 min read
Views
6K
Reaction score
3
Comments
16
User Blogs
(This is an updated version of something I wrote in July 2017) I am fortunate to have managed to get my BMI down to a healthy 21.7 by losing 70 lb / 32kg / 5 stone while ill with severe ME/CFS. (I hope to lose a bit more again: I feel I have the habits now to be able to do that slowly, without...
Tom Kindlon
1 min read
Views
2K
Reaction score
18
Comments
11
User Blogs
I am fortunate to have managed to get my BMI under 25 (24.7) by losing 48lb / 22kg / 3st 6lb while ill with severe ME/CFS. (I hope to lose more again). It took me 2.5 years so I didn't break any records. I thought I would share some techniques I used to lose the weight as a few people did ask...
Tom Kindlon
1 min read
Views
1K
Reaction score
1
Comments
3
User Blogs
This week is my 28th anniversary of becoming sick (aka "sickaversary") with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome at age 16. I've spent nearly 22.5 years severely affected. I'm one of millions around the world. We need more public and private money to make research progress...
Tom Kindlon
2 min read
Views
941
Reaction score
4
Comments
1
User Blogs
Some reasons why I donate to research into my illness (ME/CFS) (Following on from a discussion elsewhere, I was prompted to write this) I see donating to ME/CFS research as ways to: - Help myself. There clearly isn't enough known about the condition. So much is guesswork. I would like...
Back