Phoenix Rising Articles

by the Phoenix Rising Content Team

Do you ever read a Phoenix Rising article and think, ‘I could write something like that'? Or do you fancy helping articles through the publication process, onto the front page and beyond?

Then maybe you’d like to join our Content Team of writers and editors and help produce articles that will be seen here, on the world’s largest ME/CFS online forum:

The second in series of short articles attempting to explain the science behind fairly common topics and exploring how they relate to ME. This time the topic is Autoimmunity – by Andrew Gladman.

In the last few years it’s fairly safe to say that the topic of autoimmunity has moved from a fairly unknown entity in the ME field to perhaps the leading hypothesis in many peoples’ eyes. This surge in attention likely comes from the rituximab trials in Norway...

It will cost you nothing more than an online vote to help see the National ME/FM Action Network enter the second round of the Aviva community competition to win $100,000. Voting in this round closes 14th October and you can vote every single day until then - so please join us and cast your vote now! By Firestormm.


This is the first of three qualifying rounds of the online competition. At the time of writing we have 12 days left until all the votes...

The first in a new series of short articles attempting to explain the science behind fairly common topics and exploring how they relate to ME. This time we delve into the complex and somewhat controversial world of viruses - by Andrew Gladman.


I think it safe to say that no topic is quite as disputed as the role that viruses might play in the pathology...

The first in a new series of short articles attempting to explain the science behind fairly common topics and exploring how they relate to ME. This time we delve into the complex and somewhat controversial world of viruses - by Andrew Gladman.

Computer generated image of Rhinovirus 3 capsid comprised of hundreds of copies of 3 proteins. Within this shell there is the viral genome and several functional enzymes to allow for replication of the genome and to aid the hijacking process.

I think it safe to say that no topic is quite as disputed as the role that viruses might play in the pathology of ME. Scientists, doctors, and patients all have their own opinions about...

Jody Smith explains how growing virtual lettuce created a real sense of satisfaction and provided a subtle return to the land of the living...

I knew I was coming back a bit to the land of the living after several years' exile when I was able to go online again. Getting onto Facebook and learning my way around was quite a coup.

It was a ridiculously challenging and exhausting ordeal. What should have only taken days, instead took a few weeks. And even once I knew what I was doing, I would find myself frazzled and sweating as I'd write a few status updates and replies to friends.

Just to be able to say to myself "I have friends," was a novelty that got endorphins moving which had seemingly forgotten how to move for years. True, I...

Mary Dimmock reviews a most welcome announcement from our expert clinicians and researchers who have urged HHS to adopt the Canadian Consensus Criteria and save money by cancelling the contract with the Institute of Medicine...

On September 23, 2013, the US Department of Health and Human Services announced that it had entered into a contract with the Institute of Medicine (IOM) to begin work to develop “clinical diagnostic criteria” for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS).

But wait, there’s more...

Stop the press!

On the same day, 35 of the leading international researchers and clinicians in the field of ME/CFS have written an...

Gabby (Nielk) reviews the shennanigans employed by the DHHS recently to try and blindside us with a new clinical definition for our disease; and explains how you can help stop them...

International Call for Action: Your community needs you!

Everyone: please email HHS today and every day till September 30th - see draft below

US Citizens: please email your Congressional representatives - see instructions below

Kathleen Sebelius
US Secretary of Health and Human Services

The Department of Health and Human Services (HHS) describes itself as "the United States government’s principal agency for protecting the health of all Americans and...

About 10 years ago I began looking online for information and answers about my mystery illness. At that time, my sleeping and waking hours were upside down. I would sleep most of the day and be up throughout the night till dawn. I spent many disturbing hours online looking for answers.

Back then, most of what I could find was pessimistic at best, terrifying at worst. Implications of heart disease and brain damage, irreversible hormonal disruption, malfunctions of the heretofore unheard of hypothalamic-pituitary-adrenal axis, and plenty more that I could not translate into...

The CDC PCOCA telephone broadcast on 10 September 2013, featured a lengthy presentation from Dr Ian Lipkin who revealed some stunning initial results from the study that is primarily hunting for pathogens in ME/CFS. Simon McGrath and Russell Fleming (Firestormm) review this exciting and possibly game-changing news...

Read the full Lipkin Transcript: Here....

Link: 'New data reveal first predictive biomarkers to tailor rheumatoid arthritis therapy'
Image: computer generated image of an antibody

Throughout the history of ME it is safe to say that understanding of the condition and the research itself has been somewhat fractured at best and lacking significance in many areas. In the last 30 years, following the...

Valentijn sets her sights on the recent NHS ME/CFS and Fibromyalgia online clinic, and targets some of the myths that formed an albeit small part of the expert responses...

Shooting down some ME/CFS myths


Between August 14 and August 20, 2013 the National Health Service (NHS) in England hosted an online question and answer clinic in partnership with talkhealth.

This clinic invited patients from around the world with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome...

The first in a new series of (mercifully) short pieces on recent research. By Simon McGrath

A new study used data from the large PACE Trial to see if CBT and Graded exercise (GET) improved ME/CFS pain. (The main trial itself found a moderate effect of CBT and GET on self-reported fatigue and function.) The study looked at muscle and joint pain frequency, and fibromyalgia status. And it compared CBT and GET to both specialised medical care (SMC) and APT (pseudo-pacing).

The questions are, did CBT or GET have any effect on these - and if so, how big was the effect? The answers were unimpressive:


So CBT helped a little with muscle pain compared with SMC (but...

Professor Jonathan Edwards

by Sasha

The charity Invest in ME’s plans for a UK Rituximab trial got a substantial boost at the end of July when Jonathan Edwards, Emeritus Professor of Connective Tissue Medicine at University College London (UCL), agreed to act as their advisor for the study.

‘No UK expert is better placed than Professor Edwards to advise us on setting up a Rituximab trial for ME patients’, stated the charity, and it’s hard to argue with that. Drs Fluge and Mella believe that the timing of ME...

by Charlotte Dyer



In May 2005 I met my future husband. Living 200 miles apart we led a hectic life rushing between work and family and meeting each other at the weekends for 48 hours before starting all over again. Joel's job was particularly demanding, meaning he often had to work until the early hours of the morning, snatching a few hours of sleep before making the two hour journey to my house to spend two nights together before he had to make the journey back home again.

His job also required him to travel abroad sometimes and most notable was a trip he took to India during which he felt terribly ill and seemed to take several weeks to recover. In February 2007 we bought our first house together and five months later we stood before our friends and family to say our wedding vows and...

by Sasha

Though notes would be good...
Photo: Catalina Olavarria/Flickr

‘Go the extra mile,’ you’re thinking, as you lie on your sofa. ‘I can’t go the extra inch. This isn’t some sponsored walk thing, is it?’

No, my friends, it’s not. It’s an exercise in financial efficiency – oh, the fun! – that will allow even the most broke among us to have a go at raising some money for our favourite charities.

Here’s how it works. Most of us have everyday opportunities to save a bit of money here and there but we don’t bother because the amounts are fairly trivial and it doesn’t seem worth the extra effort. Perhaps your usual breakfast cereal is on special offer but there’s no room...

Gabby (Nielk) looks at the background to The Chronic Fatigue Syndrome Advisory Committee (CFSAC) and interviews 5 members including the Chairman...

"Any committee is only as good as the most knowledgeable, determined and vigorous person on it. There must be somebody who provides the flame." Lady Bird Johnson


The mission of the U.S. Department of Health and Human Services (HHS) is to enhance the health and well-being of Americans by providing for effective health and human services and by fostering sound, sustained advances in the sciences underlying medicine, public health, and social services.

We are fortunate that...

Professor Stephen Holgate says ME/CFS is a spectrum of disorders that need to be understood through new approaches, and patients must be partners in research. Simon McGrath reports.

Houses of Parliament, site of Prof Holgate's talk

ME/CFS probably isn't one disease, or even a few different ones - but could be as many as fifteen. So said Professor Stephen Holgate, Chair of the UK Research Collaborative (CMRC), when he addressed the Forward ME Group in the House of Lords on 2nd July. He also argued that a radical New Science was needed to tackle ME/CFS and said patients must be partners in research. Not bad going for one talk....

by Sasha

London: site of the proposed UK Rituximab trial
Photo by fussy onion/Flickr

On June 6, the Norwegian Medical Research Council agreed to give a large enough grant to the Haukeland Rituximab trial for the study to begin. Later that day, the charity Invest in ME announced that they were initiating a UK Rituximab trial. It seemed to come out of nowhere. There were no details – cost, size, location, research team – but there didn’t need to be. The ME community started throwing money at the trial and trusted Invest in ME when it said it could be done.

This trust was...