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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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Tom Kindlon
- Author Tom Kindlon
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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...
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...
Title: I’m very grateful for the online chronic illness community and feel it can and does make a positive contribution
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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...
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...
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...
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...
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...
I'm posting this to some yahoogroups tonight. In case it is of interest to anyone, I thought I would share it here. Tom
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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...
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...
(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...
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...
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...
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)...
(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...
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...
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...
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...
I have been reflecting on reasons why I'm passionate to get rid of Chronic Fatigue Syndrome (CFS) following a Twitter exchange yesterday.
I had a long battle against the CDC's empiric criteria which found that 2.54% of the population were affected. It was a terrible definition. For example, 89%...
(I originally posted this on Co-Cure back in 2007 but thought I'd post it somewhere else now. The same points still apply
I thought people might find it interesting to look at the SF-36 physical functioning sub-scale as it is one of the two primary outcome measures in the PACE trial and in...