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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.
Phoenix Rising Articles
No Longer Naive in the Ways of The Beast
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After having lived for years with ME/CFS, Jody Smith learned there's more to this beast of an illness than she realized, and that what might help one person may not help others ...
When I first got back online five years ago, I was naive in the ways of this beast we call ME/CFS. I guess I thought that whatever it was that I had was what you had ... what they had ... what that person laying on their face over there had ...
Turns out I couldn't have been more wrong.
I had been slowly recovering and I wanted so much to share what I learned with other people who were sick because then they would all get better too.
Yeah. Kind of naive.
I started supplying free articles on ME/CFS to...
After having lived for years with ME/CFS, Jody Smith learned there's more to this beast of an illness than she realized, and that what might help one person may not help others ...
When I first got back online five years ago, I was naive in the ways of this beast we call ME/CFS. I guess I thought that whatever it was that I had was what you had ... what they had ... what that person laying on their face over there had ...
Turns out I couldn't have been more wrong.
I had been slowly recovering and I wanted so much to share what I learned with other people who were sick because then they would all get better too.
Yeah. Kind of naive.
I started supplying free articles on ME/CFS to...
The Fable known as The PACE Trial
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Graham, Janelle and Bob, have once again excelled themselves with their latest take on the 'poisoned apple' that was the PACE Trial...
Once upon a time, long, long ago a king and queen ruled over a distant land. The queen was kind and….
Whoops, sorry there! I got confused for a moment. Wrong fantasy tale...
Several years ago a team of psychologists and psychiatrists published the first of their fables about the effectiveness of CBT (and graded exercise) in treating ME/CFS. It was known throughout the world as “The PACE Trial”.
A group of valiant, honest crusaders, mostly members of Phoenix Rising, struggled diligently and...
Graham, Janelle and Bob, have once again excelled themselves with their latest take on the 'poisoned apple' that was the PACE Trial...
Once upon a time, long, long ago a king and queen ruled over a distant land. The queen was kind and….Whoops, sorry there! I got confused for a moment. Wrong fantasy tale...
Several years ago a team of psychologists and psychiatrists published the first of their fables about the effectiveness of CBT (and graded exercise) in treating ME/CFS. It was known throughout the world as “The PACE Trial”.
A group of valiant, honest crusaders, mostly members of Phoenix Rising, struggled diligently and...
The Fable known as The PACE Trial
View the Post on the Blog
Graham, Janelle and Bob, have once again excelled themselves with their latest take on the 'poisoned apple' that was the PACE Trial...
Once upon a time, long, long ago a king and queen ruled over a distant land. The queen was kind and….
Whoops, sorry there! I got confused for a moment. Wrong fantasy tale...
Several years ago a team of psychologists and psychiatrists published the first of their fables about the effectiveness of CBT (and graded exercise) in treating ME/CFS. It was known throughout the world as “The PACE Trial”.
A group of valiant, honest crusaders, mostly members of Phoenix Rising, struggled...
Graham, Janelle and Bob, have once again excelled themselves with their latest take on the 'poisoned apple' that was the PACE Trial...
Whoops, sorry there! I got confused for a moment. Wrong fantasy tale...
Several years ago a team of psychologists and psychiatrists published the first of their fables about the effectiveness of CBT (and graded exercise) in treating ME/CFS. It was known throughout the world as “The PACE Trial”.
A group of valiant, honest crusaders, mostly members of Phoenix Rising, struggled...
First Direct Evidence of Neuroinflammation - 'Encephalitis' - in ME/CFS
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Simon McGrath reports on the new study that indicates low-grade encephalitis in ME/CFS ...
A small study with just nine patients has captured the attention of patients and researchers alike after reporting direct evidence of inflammation in the brain of ME/CFS patients. The finding was one of the highlights picked out by Professor Anthony Komaroff in his IACFS/ME conference round up.
Neuroinflammation may be behind ME/CFS symptoms
Photo credit: Canstock...
Simon McGrath reports on the new study that indicates low-grade encephalitis in ME/CFS ...
A small study with just nine patients has captured the attention of patients and researchers alike after reporting direct evidence of inflammation in the brain of ME/CFS patients. The finding was one of the highlights picked out by Professor Anthony Komaroff in his IACFS/ME conference round up.
Neuroinflammation may be behind ME/CFS symptomsPhoto credit: Canstock...
First Direct Evidence of Neuroinflammation - 'Encephalitis' - in ME/CFS
View the Post on the Blog
Simon McGrath reports on the new study that indicates low-grade encephalitis in ME/CFS ...
A small study with just nine patients has captured the attention of patients and researchers alike after reporting direct evidence of inflammation in the brain of ME/CFS patients. The finding was one of the highlights picked out by Professor Anthony Komaroff in his IACFS/ME conference round up.
Neuroinflammation may be behind ME/CFS symptoms
Photo credit: Canstock...
Simon McGrath reports on the new study that indicates low-grade encephalitis in ME/CFS ...
A small study with just nine patients has captured the attention of patients and researchers alike after reporting direct evidence of inflammation in the brain of ME/CFS patients. The finding was one of the highlights picked out by Professor Anthony Komaroff in his IACFS/ME conference round up.
Neuroinflammation may be behind ME/CFS symptomsPhoto credit: Canstock...
First Direct Evidence of Neuroinflammation - 'Encephalitis' - in ME/CFS
View the Post on the Blog
Simon McGrath reports on the new study that indicates low-grade encephalitis in ME/CFS ...
A small study with just nine patients has captured the attention of patients and researchers alike after reporting direct evidence of inflammation in the brain of ME/CFS patients. The finding was one of the highlights picked out by Professor Anthony Komaroff in his IACFS/ME conference round up.
Neuroinflammation may be behind ME/CFS symptoms
Photo credit: Canstock...
Simon McGrath reports on the new study that indicates low-grade encephalitis in ME/CFS ...
A small study with just nine patients has captured the attention of patients and researchers alike after reporting direct evidence of inflammation in the brain of ME/CFS patients. The finding was one of the highlights picked out by Professor Anthony Komaroff in his IACFS/ME conference round up.
Neuroinflammation may be behind ME/CFS symptoms
Photo credit: Canstock...
The Mighty Egg: New Life Springs Forth Despite ME/CFS
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Jody Smith finds that even with ME/CFS, new life as symbolized by the mighty egg, can still spring forth ...
The egg has been a symbol of new life since ancient times. Recently, this symbolism has struck home for me personally.
I've eaten a lot of eggs in my time. Particularly in my vegetarian years, I leaned heavily on eggs. Fried, boiled, on their own and in omelets ... And I confess in retrospect that I took them for granted. They were a mainstay that I perhaps didn't fully appreciate till I could no longer eat them.
In February of 2002 I was vaguely aware of a queasiness that...
Jody Smith finds that even with ME/CFS, new life as symbolized by the mighty egg, can still spring forth ...
The egg has been a symbol of new life since ancient times. Recently, this symbolism has struck home for me personally.
I've eaten a lot of eggs in my time. Particularly in my vegetarian years, I leaned heavily on eggs. Fried, boiled, on their own and in omelets ... And I confess in retrospect that I took them for granted. They were a mainstay that I perhaps didn't fully appreciate till I could no longer eat them.
In February of 2002 I was vaguely aware of a queasiness that...
The Chronic Fatigue Initiative and Interview with Mady Hornig
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In a follow-up article to the recent IACFS/ME conference presentation in San Francisco, and after speaking at length with Dr. Mady Hornig, 'searcher' delves deeper into the impressive work being completed by the Chronic Fatigue Initiative, and focuses in on those cytokine results ...
Members of the Chronic Fatigue Initiative (CFI) and Scott Carlson, the executive director of the Hutchins Family Foundation, gave a talk at lunch-time on the second day of IACFS/ME to share their research thus far and their future plans.
This presentation was one of the highlights of the conference to me because of the high quality research...
In a follow-up article to the recent IACFS/ME conference presentation in San Francisco, and after speaking at length with Dr. Mady Hornig, 'searcher' delves deeper into the impressive work being completed by the Chronic Fatigue Initiative, and focuses in on those cytokine results ...
Members of the Chronic Fatigue Initiative (CFI) and Scott Carlson, the executive director of the Hutchins Family Foundation, gave a talk at lunch-time on the second day of IACFS/ME to share their research thus far and their future plans.
This presentation was one of the highlights of the conference to me because of the high quality research...
Leptin
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Andrew Gladman reflects upon the recent IACFS/ME conference and the buzz surrounding a small molecule, leptin.
It's safe to say that the past couple of weeks, following the IACFS/ME 2014 conference, have been something of a whirlwind in terms of new ME/CFS research being unveiled.
Now that the dust has had a chance to settle let's take a step back and discuss a topic that many consider to be one of the most promising findings discussed at the conference.
Leptin Molecule. Image by I, Vossman via Wikimedia Commons
Leptin seemed to be the...
Andrew Gladman reflects upon the recent IACFS/ME conference and the buzz surrounding a small molecule, leptin.
It's safe to say that the past couple of weeks, following the IACFS/ME 2014 conference, have been something of a whirlwind in terms of new ME/CFS research being unveiled.
Now that the dust has had a chance to settle let's take a step back and discuss a topic that many consider to be one of the most promising findings discussed at the conference.
Leptin seemed to be the...
Patient Experience: "What Bronllys taught me about pacing."
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In 2012, Maya, who had tried to cope with ME/CFS on her own for many years, attended a pain management centre in Wales, U.K., and is now able to achieve more through pacing and acceptance, than she had been able to before the course...
My name is Maya, I’m 42 and live in Mid- Wales. I have had ME for 8 years, am mostly housebound and use a wheelchair outside.
In April 2012, I underwent a three week residential ME/CFS management programme at Bronllys Pain and Fatigue Management Centre, based in Brecon, Mid-Wales.
My GP has been very supportive since my diagnosis but had run out of ideas so, when she suggested pain management, I felt I had to give it a go.
In 2012, Maya, who had tried to cope with ME/CFS on her own for many years, attended a pain management centre in Wales, U.K., and is now able to achieve more through pacing and acceptance, than she had been able to before the course...
In April 2012, I underwent a three week residential ME/CFS management programme at Bronllys Pain and Fatigue Management Centre, based in Brecon, Mid-Wales.
My GP has been very supportive since my diagnosis but had run out of ideas so, when she suggested pain management, I felt I had to give it a go.
Pain was...
Science to Patients: Talking ME, Exercise and the Mitochondria - with Dr Charles Shepherd
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The latest video release from the Dutch group ME/cvs Vereniging, with Dr Charles Shepherd from the UK ME Association, and announcing a live chat session to be held Thursday, April 10, 2014...
Dutch group ME/cvs Vereniging present their latest video followed by a chat session with Dr Charles Shepherd from the UK ME Association
ME/cvs Vereniging launched a series of broadcasts from expert clinicians and researchers in January 2013, as part of a government subsidized project called, “Science to...
The latest video release from the Dutch group ME/cvs Vereniging, with Dr Charles Shepherd from the UK ME Association, and announcing a live chat session to be held Thursday, April 10, 2014...
Dutch group ME/cvs Vereniging present their latest video followed by a chat session with Dr Charles Shepherd from the UK ME Association
ME/cvs Vereniging launched a series of broadcasts from expert clinicians and researchers in January 2013, as part of a government subsidized project called, “Science to...
Time Change Equals Jet Lag, ME/CFS Style
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Jody Smith marvels at how much difference one hour can make to those with ME/CFS, as much of the world has endured The Time Change in recent weeks ...
Where I live, we recently went through a time change, compliments of Daylight Savings Time. Having ME/CFS, I don't need to travel anywhere to get jet lag. I just need the clock to be turned ahead, or backward by one hour.
I know that not everyone lives according to Daylight Savings Time but it happens twice a year in much of the world. Do you experience a crash that happens to occur after one of the time changes of the year?
The one that took place this past November really rocked my household. My son Jesse, who has ME/CFS as well...
Jody Smith marvels at how much difference one hour can make to those with ME/CFS, as much of the world has endured The Time Change in recent weeks ...
Where I live, we recently went through a time change, compliments of Daylight Savings Time. Having ME/CFS, I don't need to travel anywhere to get jet lag. I just need the clock to be turned ahead, or backward by one hour.
I know that not everyone lives according to Daylight Savings Time but it happens twice a year in much of the world. Do you experience a crash that happens to occur after one of the time changes of the year?
The one that took place this past November really rocked my household. My son Jesse, who has ME/CFS as well...
In Brief: The Adrenal Glands and ME
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The second in a new series of ‘In Brief’ articles, where Andrew Gladman provides a helpful insight into the science behind fairly common topics, exploring how they relate to ME/CFS. This time he discusses the adrenal glands and why they can be such a talking point ...
Diagram showing the location of the adrenal glands, above the kidneys
While the frequent topics of conversation relating to ME/CFS appear to now be infectious agents, autoimmunity and often a dysfunctional nervous system, many patients and researchers still turn their attention to problems within the endocrine system, namely the adrenal gland.
As the gland within the body centred around stress responses, it is...
The second in a new series of ‘In Brief’ articles, where Andrew Gladman provides a helpful insight into the science behind fairly common topics, exploring how they relate to ME/CFS. This time he discusses the adrenal glands and why they can be such a talking point ...
Diagram showing the location of the adrenal glands, above the kidneys
While the frequent topics of conversation relating to ME/CFS appear to now be infectious agents, autoimmunity and often a dysfunctional nervous system, many patients and researchers still turn their attention to problems within the endocrine system, namely the adrenal gland.
As the gland within the body centred around stress responses, it is...
The Lipkin Microbiome Crowdfunding Campaign Launches!
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An ambitious $1.27m international, patient-led fundraising campaign storms into action. Sasha invites you to join it!
Dr. W. Ian Lipkin.
Image courtesy of the Columbia University
Center for Infection and Immunity
This week sees the launch of a major new crowdfunding campaign: the Microbe Discovery Project. The campaign aims to raise $1.27 million (£760,000; €910,000) by 31 December 2014 to fund world-famous virus-hunter Dr. Ian Lipkin’s ground-breaking study of ME/CFS and the gut microbiome – our intestinal ecosystem of bacteria, viruses and fungi.
The study
The study is spectacular...
An ambitious $1.27m international, patient-led fundraising campaign storms into action. Sasha invites you to join it!
Dr. W. Ian Lipkin.
Image courtesy of the Columbia University
Center for Infection and Immunity
This week sees the launch of a major new crowdfunding campaign: the Microbe Discovery Project. The campaign aims to raise $1.27 million (£760,000; €910,000) by 31 December 2014 to fund world-famous virus-hunter Dr. Ian Lipkin’s ground-breaking study of ME/CFS and the gut microbiome – our intestinal ecosystem of bacteria, viruses and fungi.
The study
The study is spectacular...
California 2014: IACFS/ME Day Four: Translating Science into Clinical Care: 23 March 2014
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It is Day Four and the final conference session from San Francisco. In this review we hear from Searcher about the neurosciences session, and PET and EEG analysis, then a study on cognitive functioning, followed by a debate on the revised 2014 IACFS/ME Primer, and then we wrap-up the conference with a terrific summary from Dr. Antony Komaroff...
The 11th biennial IACFS/ME conference is being held in San Francisco.
Day Four, the finale, March 23, 2014.
A very warm welcome to our final review from Day Four (March, 23, 2014), of the IACFS/ME four-day conference. It has been a marathon series of presentations and a real team effort to keep...
It is Day Four and the final conference session from San Francisco. In this review we hear from Searcher about the neurosciences session, and PET and EEG analysis, then a study on cognitive functioning, followed by a debate on the revised 2014 IACFS/ME Primer, and then we wrap-up the conference with a terrific summary from Dr. Antony Komaroff...
The 11th biennial IACFS/ME conference is being held in San Francisco.
Day Four, the finale, March 23, 2014.
A very warm welcome to our final review from Day Four (March, 23, 2014), of the IACFS/ME four-day conference. It has been a marathon series of presentations and a real team effort to keep...
California 2014: IACFS/ME Day Three: Translating Science into Clinical Care: 22 March 2014
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Day Three, and Searcher continued to deliver the goods. We hear about the PANDORA national survey results, a very big familial case study from Spain, results from the Canadian Community Health Survey, more results from epidemiological studies (and a look at treatments and comorbidities), then perhaps the key section of the day: the science of exercise testing and post-exertional malaise...
The 11th biennial IACFS/ME conference is being held in San Francisco.
Day Three, Science Papers, March 22, 2014.
It's Day Three (March, 22, 2014), of the IACFS/ME four-day conference and another packed research presentation agenda. Our summation continues from mid-morning after...
Day Three, and Searcher continued to deliver the goods. We hear about the PANDORA national survey results, a very big familial case study from Spain, results from the Canadian Community Health Survey, more results from epidemiological studies (and a look at treatments and comorbidities), then perhaps the key section of the day: the science of exercise testing and post-exertional malaise...
The 11th biennial IACFS/ME conference is being held in San Francisco.
Day Three, Science Papers, March 22, 2014.
It's Day Three (March, 22, 2014), of the IACFS/ME four-day conference and another packed research presentation agenda. Our summation continues from mid-morning after...
California 2014: IACFS/ME Day Two: Translating Science into Clinical Care: 21 March 2014
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Searcher kicks us off on Day Two, with an autoimmunity overview, then we are into immunology and cytokines, we hear from Susan Levine and the allergy-related signatures study done with Lipkin et. al, a talk about paravirus B-19, Mady Hornig from CFI with more research, John Chia who presents on enteroviruses and we close with Nancy Kimas and Dan Peterson discussing diagnosis and treatments...
The 11th biennial IACFS/ME conference is being held in San Francisco.
Day Two, Science Papers, March 21, 2014.
We really are getting stuck into some serious science from our top researchers. Day Two (March 21, 2014), of the IACFS/ME four-day...
Searcher kicks us off on Day Two, with an autoimmunity overview, then we are into immunology and cytokines, we hear from Susan Levine and the allergy-related signatures study done with Lipkin et. al, a talk about paravirus B-19, Mady Hornig from CFI with more research, John Chia who presents on enteroviruses and we close with Nancy Kimas and Dan Peterson discussing diagnosis and treatments...
The 11th biennial IACFS/ME conference is being held in San Francisco.
Day Two, Science Papers, March 21, 2014.
We really are getting stuck into some serious science from our top researchers. Day Two (March 21, 2014), of the IACFS/ME four-day...
California 2014: IACFS/ME Day One: Translating Science into Clinical Care: 20 March 2014
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The location has now moved to San Francisco, for the first day of the IACFS/ME 11th biennial event, and another exciting round of presentations to an even larger audience. Searcher was again present, with her Press Pass, and along with some very kind help, from Hope, managed to submit a solid review of some of the highlights...
The 11th biennial IACFS/ME conference is being held in San Francisco from March 20-23, 2014
Conference objectives from Dr Fred Friedberg, IACFS/ME President:
“The conference will a provide a number of fresh updated perspectives on CFS/ME, including new innovative professional workshops on management of the severely ill patient, pediatric CFS/ME, and an immunology primer for...
The location has now moved to San Francisco, for the first day of the IACFS/ME 11th biennial event, and another exciting round of presentations to an even larger audience. Searcher was again present, with her Press Pass, and along with some very kind help, from Hope, managed to submit a solid review of some of the highlights...
The 11th biennial IACFS/ME conference is being held in San Francisco from March 20-23, 2014
Conference objectives from Dr Fred Friedberg, IACFS/ME President:
“The conference will a provide a number of fresh updated perspectives on CFS/ME, including new innovative professional workshops on management of the severely ill patient, pediatric CFS/ME, and an immunology primer for...
California Conference Season 2014: Stanford Presents - Advances in Clinical Care and Translation...
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The 2014 conference season began yesterday at Stanford, home of Dr. Jose Montoya and his team, and searcher was there to provide a live commentary on the presentations from an all-star line-up of clinicians and scientists and which featured some exciting new developments on the research front...
We will also aim to also...
The 2014 conference season began yesterday at Stanford, home of Dr. Jose Montoya and his team, and searcher was there to provide a live commentary on the presentations from an all-star line-up of clinicians and scientists and which featured some exciting new developments on the research front...
Stanford plays host to the first of five conferences over coming days, and, thanks to our volunteer 'searcher', all members of Phoenix Rising will be able to follow events as they unfold, live, in the members-only forum, and also with highlights via Twitter.
We will also aim to also...
Cognitive testing causes mental exhaustion lasting days
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Simon McGrath takes a brief look at a recent paper that reveals some of the most powerful evidence of cognitive problems in people with ME/CFS to date...
It might not come as a huge surprise to patients, but a new study has found that mental fatigue can persist long after mental exertion is over.
Specifically, after a 3-hour session of cognitive testing of memory and attention, healthy controls took an average of 7 hours to recover, compared with 57 hours - more than two days - for CFS patients.
While one previous study found mental fatigue continues...
Simon McGrath takes a brief look at a recent paper that reveals some of the most powerful evidence of cognitive problems in people with ME/CFS to date...
Specifically, after a 3-hour session of cognitive testing of memory and attention, healthy controls took an average of 7 hours to recover, compared with 57 hours - more than two days - for CFS patients.
While one previous study found mental fatigue continues...