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Simon McGrath provides a patient-friendly version of a peer-reviewed paper which highlights some of the most promising biomedical research on ME/CFS …

published

Recently, Professor Jonathan Edwards, with patients and carers as co-authors (including me), published a peer-reviewed editorial in the medical journal Fatigue: Biomedicine, Health & Behavior. The article became their most-viewed paper within a few days.

The editorial highlights some of the most promising biomedical research on ME/CFS, discusses possible broad models to understand the illness, and suggests practical steps to speed up progress.

Our paper is a direct call to the wider biomedical research community to actively target ME/CFS, but we hope that patients will also find the paper useful as a summary of current theories about what causes the illness, and some of the most promising research leads right now.… Read More

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Phoenix Rising
is delighted to support the demands being made in the ME/CFS community’s first-ever global day of protest …

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Campaign platform #MEAction is organising a global day of protest for ME and CFS, with a campaign called “Millions Missing,” reflecting the millions of patients “missing from their careers, schools, social lives and families,” the millions of dollars “missing from research and clinical education funding that ME should be receiving” and the millions of doctors who are “missing out on proper training to diagnose and help patients manage this illness.”

The campaign quickly outgrew its original focus on the US capital and now includes patient-led protests on May 25th at US Department of Health and Human Services (HHS) offices in Washington DC, Dallas, San Francisco, Seattle and Boston, and the Centers for Disease Control and Prevention (CDC) offices in Atlanta.… Read More

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Sasha announces a new resource of appropriate photos for ME/CFS media stories …

We’ve all seen them in the news stories about ME/CFS: the guy in a suit at the office, yawning; the beautiful woman sitting at her desk with her immaculate make-up and elegantly coiffed hair, hand to her head and looking slightly pained.

Orthostatic-intolerance-chronic-fatigue

No! Not this beautifully groomed woman with a mildly troublesome sore throat!

But do pictures that illustrate ME/CFS by showing office workers suggest that this level of function is as bad as this condition gets?​

For years, patients have been up in arms about this issue, and #MEAction recently started a great campaign for patients to contribute their own photos to the cause.… Read More

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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… 

ME-CFS-PACE-dataOn 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 abandon its appeal against the Information Commissioner’s decision that it must release PACE trial data to a patient who had requested it for independent analysis.… Read More

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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

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 studies ever proposed for ME/CFS: Professor Stephen Holgate’s Grand Challenge, which is now moving forward.… Read More

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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

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 cohort that could be 10,000 patients strong.… Read More

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

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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.… Read More

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professor-james-coyne
Professor James Coyne

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.

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 heavily criticised.

The slides from Professor Coyne’s talk have been viewed online over 8,000 times.… Read More

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Sasha invites you to sign a new petition to the HHS to protect patients against the PACE trial, CBT and GET … Pixabay-petition-signature

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 beneficial for patients with chronic fatigue syndrome.

Patients have long criticised the trial’s poor methodology and bizarre analyses.… Read More

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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. IIMEC10

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, which gives details of the speakers, and abstracts of the talks, is available as a PDF document here. Invest in ME (IiME) have posted a conference report by Rosamund Vallings, and Phoenix Rising tweeted the conference live.… Read More

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poster 2Why 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.… Read More

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Professor Olav Mella (left) and Dr Oystein Fluge

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 to this study: cancer specialists Fluge and Mella treated an ME patient for cancer with the immune-system drug rituximab.… Read More

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newspapers-444444_640Sasha 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 serious research into this disease;
  • everyone should be donating to our biomedical research charities.

Read More

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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.… Read More

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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’:

capitol-720677_640Wanted: Member of Congress prepared to take up a cause.

Political party affiliation: Unimportant.

Geographic representation: Unimportant.

Fund-raising potential: Minimal.

Reward: Undying gratitude, lavish praise, thanks beyond counting.

Job description: In any way you can, draw attention to a debilitating, life-abducting disease.

Read More

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11193297_1598344087114658_1011865320453080262_nSasha 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 things.… Read More

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

photo by geralt/pixabay

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 here.

Questions have been arranged roughly by topic and have been published in two parts. Part 1 can be found here. Part 1 covered questions on the committee and IOM process, and the IOM’s diagnostic definition.… Read More

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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.​

london-by-night-735085_1280The 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 colloquium — now in its fifth year — where some of the world’s top ME researchers can put their minds together and make things happen.… Read More

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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.

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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?… Read More

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

History

HOPE-MECFS-FacebookThe 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 agent of AIDS, the retrovirus later named HIV (human immunodeficiency virus) and created another paradigm shift which legitimized the illness.… Read More

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