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Phoenix Rising Articles

Phoenix Rising tells QMUL: release the PACE trial data

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Mark submitted a new blog post:

Phoenix Rising tells QMUL: release the PACE trial data

Mark Berry, Acting CEO of Phoenix Rising, presents the Board of Directors’ open letter to Queen Mary University of London (QMUL) urging them to release the PACE trial data, and hopes that other non-UK organisations will join British charities in the same request...


On 1 February, ME/CFS patient Clark Ellis wrote an open letter to seven major British ME/CFS charities to ask them to contact QMUL.

He wanted them to write their own open letters to request QMUL to...

The power and pitfalls of omics part 2: epigenomics, transcriptomics and ME/CFS

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The power and pitfalls of omics part 2: epigenomics, transcriptomics and ME/CFS

Simon McGrath concludes his blog about the remarkable Prof George Davey Smith's smart ideas for understanding diseases, which may soon be applied to ME/CFS.


George Davey Smith

Last November, science star Professor George Davey Smith gave a talk at the UK CFS/ME Research Collaborative (CMRC) Annual Science Conference laying out ideas for bigger, better, smarter research. Although much of his talk wasn’t focused specifically on ME/CFS in particular, his points are of great interest to the ME/CFS community.

This is because Davey Smith has said he’s keen to play a role in the largest research set of...

The Power and Pitfalls of Omics: George Davey Smith’s storming talk at ME/CFS conference

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Simon submitted a new blog post:

The Power and Pitfalls of Omics: George Davey Smith’s storming talk at ME/CFS conference

Read about the talk that stole the show at a recent ME/CFS conference in Simon McGrath's two-part blog.

Here's Part 1:



George Davey Smith

Last November, science star Professor George Davey Smith gave a talk at the UK CFS/ME Research Collaborative (CMRC) Annual Science Conference that focused on bigger, better, smarter approaches to research.

Since then, Davey Smith has said he’s keen to play a role in the largest set of studies ever proposed for ME/CFS: Professor Stephen Holgate’s Grand Challenge, which is now moving forward.

The plans are for a 'big data' study using a huge...

Looking Ahead to Change: Little by Little

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Looking Ahead to Change: Little by Little

As the old year wanes and the new one beckons, Jody Smith reflects on the nature of change ...


Does the end of the year make you pensive and cause you to look back? It has that effect on me.

I don't make New Year's Resolutions. I don't think I ever really did, but the last decade or two would have been enough to stifle that impulse. I've just been too aware that I don't have that much control over what happens in my life.

It may just be that I am living less under the illusion that I am the Master of my own universe than people who haven't been ill or broke for years. I have come to the end of my rope more than once — many different kinds of ropes — and have had it beaten into me that pure...

James Coyne “lays waste” to PACE trial in Edinburgh

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Sasha submitted a new blog post:

James Coyne “lays waste” to PACE trial in Edinburgh

Sasha summarises Professor James Coyne's recent no-holds-barred talk on the PACE trial and points you to the slides, video, audio and transcript.


Professor James Coyne

Outspoken psychologist and professor of psychology James Coyne of the University of Pennsylvania blasted the PACE trial in a public talk in Edinburgh, Scotland, on 16 November, 2015.

The PACE trial was a £5 million UK trial of cognitive behavioural therapy (CBT) and graded exercise therapy (GET) for patients with chronic fatigue syndrome (CFS). Its authors claimed that the therapies were beneficial to patients, but its methods have been...

Get PACE removed from clinical guidelines – sign the petition!

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Sasha submitted a new blog post:

Get PACE removed from clinical guidelines – sign the petition!

Sasha invites you to sign a new petition to the HHS to protect patients against the PACE trial, CBT and GET ...


A brand-new and crucial #MEAction petition has just been launched, opening a new front in the rapidly escalating battle to protect ME/CFS patients from the misleading results of the PACE trial and similar studies.

The PACE trial was a £5 million UK trial, published in The Lancet, whose authors claimed that it showed that cognitive behavioural therapy and graded exercise therapy were...

Agents for Change: The 10th Invest in ME International ME Conference, 2015 - Part 1

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Agents for Change: The 10th Invest in ME International ME Conference, 2015 - Part 1

Mark Berry reports on the 10th Invest in ME International ME Conference in London.

The 10th Invest in ME International ME Conference (IIMEC10) was held, as usual, in the Lecture Theatre at 1 Birdcage Walk in Westminster on May 29th, 2015.



You can view the full conference programme (with photos and biographies of the speakers) here. The highly-recommended DVD of the conference is now available.

Also, the pre-conference issue of the Journal of IiME,...

Home care is the theme for Severe ME Day on August 8th

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Home care is the theme for Severe ME Day on August 8th

Why should home care be the theme on Understanding and Remembrance Day for Severe ME on August 8? Helen Brownlie of the 25% ME Group has written an explanation for Phoenix Rising ...


August 8, 2015, will be the third annual Understanding and Remembrance Day for Severe ME. To mark this, the 25% ME Group — a support organisation for people who have severe myalgic encephalomyelitis — are focusing on care. We’ve done this in view of the truly dreadful service responses that our members increasingly report encountering here in the UK.

Clearly there’s a major gap between the care needs of people with severe ME and professional perception...

Fluge & Mella's pre-trial study highlights life-changing potential of rituximab

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Sasha submitted a new blog post:

Fluge & Mella's pre-trial study highlights life-changing potential of rituximab

Professor Olav Mella (left) and Dr Oystein Fluge

Sasha gives the background and Simon gives the interpretation of the latest study from Haukeland, published today...

It’s out! Dr Øystein Fluge and Professor Olav Mella have published their new study in PLoS ONE. And though the study was not a blinded, placebo-controlled trial, the results are further evidence that rituximab is beneficial in some ME/CFS patients, and potentially life-changing for a substantial minority. The findings also give important new insights into the optimum dosing schedule to maintain those benefits in the long run.

We all know the story that led up...

How we can hijack the media, in four easy lessons

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Sasha submitted a new blog post:

How we can hijack the media, in four easy lessons

Sasha explains how we can each help to make the most of big media stories about ME/CFS ...

Love it, hate it, good story, bad story... the media are going to keep reporting on ME/CFS no matter what. But isn’t it time that we saw that coverage as an opportunity?



I think we should, because when an ME/CFS story breaks, the doors open to getting responses to that story into the media. It’s our chance to get out our key messages, particularly:

  • scientific research shows that this is a devasting organic disease, not a psychological illness;
  • governments are underfunding...

Red Hot researchers spice up Chilli ME Challenge — Live!

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Red Hot researchers spice up Chilli ME Challenge — Live!

Can you take the heat? Join Simon McGrath in support of the Chilli ME Challenge ...

Watch renowned researchers Drs. Ian Lipkin and Mady Hornig take the Chilli ME Challenge, LIVE from New York by webcast this coming Wednesday, 1st July at 1 p.m. EST.



To spice things up, the researchers from Columbia University have promised that the more you give, the hotter the chilli peppers they will eat! And every dollar goes directly to their cutting-edge programme of ME/CFS research.

Some like it hot

Their spice-o-meter currently shows they will be eating spicy jalapeño chillis, and are just shy of taking on red hot Thai chillies. Your gift can make that difference!

The team have made a brilliant trailer...

Wanted by Llewellyn King: Member of Congress to take up the ME/CFS cause

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Sasha submitted a new blog post:

Wanted by Llewellyn King: Member of Congress to take up the ME/CFS cause

Sasha reports on Llewellyn King’s campaign to find a lone Congress member to do the right thing ...

Llewellyn King, a well-known political journalist and long-time friend to the ME/CFS community, has made a direct call to U.S. Congress members to help us.

Posting on The Hill, a Congress-focused news blog, King has put out an attention-grabbing ‘want ad’:


Wanted: Member of Congress prepared to take up a cause.

Political party affiliation: Unimportant.

Geographic...

Jen Brea launches mass-advocacy platform — #MEAction goes live!

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Jen Brea launches mass-advocacy platform — #MEAction goes live!

Sasha gives you the tour and tells you what it’s all about...


Jen Brea is a phenomenon. After working as a freelance writer in China and Africa, she enrolled for a PhD at Harvard in political science but, four years ago, got sick. She had a fever that lasted ten days.

Her health collapsed, and she was forced to go on medical leave. She got married, but was too ill to say her vows.

This was her entry into the world of ME/CFS. But fortunately for us, she had the skills, connections, support and attitude to use social media to do amazing...

Dr. Bateman answers IOM questions from the community: Part 2

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ClarkEllis submitted a new blog post:

Dr. Bateman answers IOM questions from the community: Part 2

Clark Ellis brings us Part 2 of an interview with Dr. Lucinda Bateman, where she answered questions posed by the patient community …


The Institute of Medicine recently published its report into myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). One of the committee members, Dr. Lucinda Bateman, graciously agreed to answer questions submitted by members of the patient community.

Questions were submitted on the Phoenix Rising forum and they...

Get a Ringside Seat for Invest in ME’s 10th International Conference on 29 May

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Get a Ringside Seat for Invest in ME’s 10th International Conference on 29 May

Sasha and Simon preview the attractions and tells you how you can watch it unfold ...

This Friday, 29 May sees the tenth International ME Conference put on by UK research charity Invest in ME (IiME) in London. The day-long conference will include 220 participants from 17 countries and will be attended by researchers, clinicians and patients.


The conference has grown from small beginnings to being one of the most important events on the international ME research calendar, not least because it’s preceded by a two-day, invitation-only research...

International ME/CFS and FM Awareness Day is May 12: The World Will Know

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Jody submitted a new blog post:

International ME/CFS and FM Awareness Day is May 12: The World Will Know

Hey, May 12 is our Day. Join with Jody Smith and let's make some noise ...

Did you know that May 12 belongs to us? Lots of us are aware of this. We share the buzz on it amongst ourselves. We add blue ribbons to profile pictures. We raise our voices, join our hands, mount the few podiums available to us and tug at the sleeve of the rest of the world.


We want their attention. We want to tell them all about us and we have a few questions of our own:

Did you know we are here? Did you know this day belongs to this chronically ill community?

Do you know what it's like for the...

The End ME/CFS Project: History Taking Root

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ClarkEllis submitted a new blog post:

The End ME/CFS Project: History Taking Root

Clark Ellis spoke with Dr. Ronald W. Davis and Linda Tannenbaum about the End ME/CFS Project ...

History

The history books record that in the nineteenth century Louis Pasteur formulated a “germ theory” of microbes as the causative agents of disease, and thus revolutionized medicine. His findings, along with his contemporary, John Snow (who linked cholera to infected water supply), changed the way we thought about disease causation, putting the previously popular miasma theory to bed.

In 1983 Robert Gallo and Luc Montagnier independently discovered the causative...

Dr. Bateman answers IOM questions from the community: Part 1

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ClarkEllis submitted a new blog post:

Dr. Bateman answers IOM questions from the community: Part 1

Clark Ellis brings us Part 1 of an interview with Dr. Lucinda Bateman, where she answered questions posed by the patient community ...


The Institute of Medicine recently published its report into myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). One of the committee members, Dr. Lucinda Bateman, graciously agreed to answer questions submitted by members of the patient community.

Questions were submitted on the Phoenix Rising forum and they can all be viewed...

New era for ME/CFS research as top cytokine study attracts media headlines

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Simon submitted a new blog post:


Simon McGrath describes ME/CFS research presently in the media spotlight ...

The immune systems of patients who have recently developed ME/CFS look markedly different from those who have been ill for much longer, according to a major new study from Drs. Ian Lipkin and Mady Hornig at Columbia University. This shift in immune function hadn’t been seen before.


Study leader Dr. Mady Hornig in her lab

“Perhaps the most significant evidence yet that chronic fatigue syndrome has a biological basis”, said the...

MEAdvocacy.org Update and a Call for Continued Support

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Nielk submitted a new blog post:

MEAdvocacy.org Update and a Call for Continued Support

Gabby Klein reports on news and updates from MEadvocacy.org ...


I have tried raising money by asking for it, and by not asking for it. I always got more by asking for it.”
- Millard Full





ME Advocacy has been very busy implementing new projects and are seeking your continued support for their upcoming projects.

Thank you for your support of MEadvocacy.org. Because of your efforts, they have been able to get their PR project...