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Help Keep Phoenix Rising Running!

Donations can be made online or via mail. One time  or recurring monthly donations (subscriptions) can be made on-line. Recurring donations are especially helpful to us as a more predictable source of income, and you only need expend the effort once!

Online via Dwolla or Paypal – You do not need to have a Paypal account to make a donation.

 

Mail – If you’d rather use mail, please make checks out to “Phoenix Rising” and send to the following address:

Phoenix Rising
12730 Thicket Ridge Dr
Jacksonville, FL 32258

Matching Donations – Many companies will match your donation to a certified non-profit and Phoenix Rising received substantial help from matching donations last year.… Read More

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Donate

Help Keep Phoenix Rising Running!

Donations play a vital role in Phoenix Rising’s support of the ME/CFS community. One-off or recurring monthly donations (subscriptions) can be made. Recurring donations are especially helpful to us as a more predictable source of income.

And there are ways of giving that don’t cost you any money, as you’ll see below!

Online via Paypal – You do not need to have a Paypal account to make a donation.

 

Mail – If you’d rather use mail, please make checks out to “Phoenix Rising” and send to the following address:

Phoenix Rising
12730 Thicket Ridge Dr
Jacksonville, FL 32258

Phoenix Rising is a registered 501(c)(3) non-profit organization and your donations are deductible to the full extent of the law.… Read More

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Mark Berry reports on Dr. Gibson’s introduction and Dr. Whittemore’s keynote speech, at the 11th Invest in ME International ME Conference in London.
11th Invest in ME Conference Logo

The 11th Invest in ME International ME Conference (IIMEC11) was held at One Great George Street, just down the road from its former home, on June 3rd, 2016.

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 for pre-order, and Kina did an amazing job tweeting the conference live for Phoenix Rising.

The first article in this series summarised all of the presentations at the conference.… Read More

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Mark Berry presents the first in a series of articles on the 11th Invest in ME International ME Conference in London …
11th Invest in ME Conference Logo

The 11th Invest in ME International ME Conference (IIMEC11) was held at One Great George Street, just down the road from its previous home on Birdcage Walk, on Friday June 3rd, 2016.

You can view the full conference agenda (with photos and biographies of the speakers) here and the Conference Journal is available to download as a PDF. The highly-recommended DVD of the conference is now available for pre-order, and Kina did an incredible job tweeting the conference live for Phoenix Rising.… Read More

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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 …

millionsmissing header graphic 3

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 …

Pixabay-watch

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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news-760984_640When a news story about ME/CFS appears online and allows comments, it’s our chance to get important information into the media, to raise awareness about our disease and to encourage people to donate to our biomedical research charities.

There are some key things to remember when posting:

  • If it’s a good article, thank the journalist.
  • If it’s a bad article, say that you’re disappointed and refer to the research reports, and then use the opportunity to get your own points across. Always be polite: we want to recruit more supporters.
  • Stick to your key points. Want to say it’s a real disease?

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letter-447577_640If there’s a local or regional newspaper in your area, they’re probably desperate for good-quality letters to the editor.

These papers often have a huge reach, and are a great way of raising awareness about ME/CFS and letting people know that there are research charities that they can donate to.

So if there’s a big ME/CFS story in the media, or if you’re creating some ME/CFS news yourself, write to the letters page of your newspaper about it!

Top tips:

  • Keep it short. 300 words or fewer is best.
  • Get to the point. Editors cut for length from the bottom up, and readers get bored from the top down.

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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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Research Charities

rainingmoneyOne of the most important things that we can do as ME/CFS patients is to donate to the charities that carry out biomedical research into the disease.

Governments are notorious for their decades of extreme underfunding of research into ME/CFS. But even if they increase their spend, for most diseases, it’s research charities who foot the bill for most research.

So please join in and give! With over 17 million patients worldwide, and our friends and families,  if we each give even a small amount we can generate huge amounts of cash.

ME/CFS research projects

As well as many excellent research charities to give to, crowdfunding — fundraising for specific projects — has been a big success in ME/CFS.… 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.

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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 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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