≡ Menu

Search: Donate

Donate-copy

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

{ 0 comments }

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

{ 0 comments }

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

{ 17 comments }
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

{ 5 comments }

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

{ 11 comments }

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?

Read More

{ 0 comments }

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.

Read More

{ 0 comments }
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

{ 109 comments }

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

{ 0 comments }

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

{ 33 comments }

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

{ 101 comments }

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

{ 210 comments }

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

{ 41 comments }
Dr Mady Hornig

Study leader Dr. Mady Hornig in her lab

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 profile hadn’t been seen before.

“Perhaps the most significant evidence yet that chronic fatigue syndrome has a biological basis”, said the Wall Street Journal. The immune signature discovered might eventually be the “basis of the first diagnostic test for the illness”, said The New York Times.… Read More

{ 36 comments }

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

wendy-ME-Advocacy-a

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 off the ground and have been busy implementing a wide range of projects outlined below.

We have seen in the past couple of weeks with the IOM roll out and subsequent media blitz just how important our image in the media is.… Read More

{ 75 comments }

In our second article on how to react to the publication of the draft P2P report, Gabby Klein provides her view of why she and a large group of advocates and patients are continuing their protest of the government’s ongoing control and manipulation of our disease via their processes of the P2P and IOM. 

pixabay-yes-no-maybe

In yesterday’s piece, Clark Ellis critiqued and praised elements in the draft report. Given the controversial nature of the report, Phoenix Rising is presenting both views in the interests of balance and representing the whole community… 

“We are not crumbs! We must not accept crumbs!”  – Larry Kramer

When I first read the draft report created by the panel for the P2P for ME/CFS, my first reaction was: They are throwing us crumbs — this is dangerous.… Read More

{ 33 comments }

Have you had enough of all the neglect and abuse of ME/CFS patients?  Gabby Klein says now is the time for a National PR Campaign for ME/CFS to impress a change. Join the Patient Revolution to restore power to ME patients …

Power to the people

Thirty years of neglect, incompetence and malfeasance by the Department of Human services (HHS) have rendered ME patients angry, frustrated and disgruntled.  They remain invisible, misunderstood and very sick.

Any possible advance in the science of the disease has been squashed by the gross lack of funding by NIH for this severe disabling disease.  In addition, the lack of education of the disease in medical schools has insured the lack of care for patients nationwide.… Read More

{ 72 comments }
Ian Lipkin

Dr. W. Ian Lipkin

Simon McGrath reports on Dr. Lipkin’s talk to patients in London … 

In a talk to patients in London on 3rd September, Dr. W. Ian Lipkin described the extraordinary lengths he and his team are prepared to go to in order to track down the source of an illness, with examples ranging from autism to the strange case of Kawasaki disease.

His talk emphasised the use of high-tech methods and following the evidence wherever it leads, before outlining his ME/CFS research programme that takes a similar approach. And he believes the action in his field is moving from acute illnesses such as SARS to chronic illnesses – including ME/CFS.… Read More

{ 42 comments }

Dr. Kerr, I presume?

Clark Ellis brings us a rare interview with British researcher Dr. Jonathan Kerr who is now living in Colombia.

JK-17aDr. Jonathan Kerr is regarded as one of Britain’s foremost myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) researchers, and an expert in microbiology, inflammation and genetics.Formerly of St. George’s University of London, he is now working at the Escuela de Medicina y Ciencias de la Salud, Universidad del Rosario, Bogota, Colombia.

Dr. Kerr kindly agreed to be interviewed, with topics including his recent publication, which identified SNPs associated with ME/CFS, his prior research of the disease, diet and its role in health, disease definitions, and why he dropped off the ME/CFS scene for a little while.… Read More

{ 40 comments }
W. Ian Lipkin

Dr. W. Ian Lipkin.
Image courtesy of the Columbia University Center for Infection and Immunity

An ambitious $1.27m international, patient-led fundraising campaign storms into action. Sasha invites you to join it!​

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, because of the series of crucial, cumulative steps that it makes to identify what might be driving our immune problems and hence our symptoms.… Read More

{ 63 comments }