Phoenix Rising Articles

Sasha submitted a new blog post:

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...

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...

Sasha submitted a new blog post:

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...

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...

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


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

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...

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.

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

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...

Simon submitted a new blog post:

Surprisingly good outcomes for people who get ME/CFS after Mononucleosis (Glandular Fever)


"When will this end?" It's a question that most ME/CFS patients have probably asked themselves and their doctor many times. I certainly have.

Yet there is astonishingly little hard data on recovery rates from this illness or on how much patients improve, and the evidence there is doesn't give too much hope.

Step forward a long-term follow-up study that shows unexpectedly good rates of improvement for younger people who developed ME/CFS after infectious mononucleosis (glandular fever) – though the results are...

Nielk submitted a new blog post:

The Call for Opposition: Challenging the P2P and IOM Processes

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.

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...

Phoenix Rising Team submitted a new blog post:

P2P, or not P2P, that is the question

As the 16 January, 2015 deadline for responding to the controversial P2P draft report draws near, and in the interests of balance and representing the whole community, Phoenix Rising presents two differing views on how to react. Today, Clark Ellis flags up important content to critique and to praise in the report. In her article, Gabby Klein makes the case for protesting the P2P process and not responding to its content.


P2P, or not P2P, that is the question.

So what’s the answer? When you boil it down there are only really two options.

1. The P2P...

Jody submitted a new blog post:

Did You Have Yourself a Crashy Little Christmas?

Jody Smith may have dodged a holiday bullet this year. She's hoping. Only time will tell. How did you fare?


How have you survived the holiday season? I've been thinking of you in the Phoenix Rising community all week. I wanted to write something before Christmas but ... I thought I was in for a crash, as old symptoms started reappearing in mid-December.

I had been doing really well for some months -- hadn't needed my naturopath since August -- and then I guess it was the creeping nearer of Christmas that was the final straw.

I started having trouble finding my thoughts, and when I could find them, finishing them. The vibrating...

Graham submitted a new blog post:

Give ME the Money

Graham McPhee spells out some of the cold, hard facts about the dismal state of ME research and politics, and has some suggestions as to what we can do about it ...

The new video from ME Analysis highlights the shocking lack of funding for biomedical research into ME: less than £2 million in over 25 years.

(If you don't see the video watch it here.)

I think there are two things that all of us with ME can agree upon. The first is that too little money has been spent on biomedical research into ME, and the second is that the psychological interpretation of the illness has been allowed to have too much influence. You may phrase it much more strongly than that, of course!
...

Mark submitted a new blog post:

AVIVA Semi-Finals: National ME/FM Action Network is competing for $100,000


The National ME/FM Action Network in Canada is competing for $100,000 for biomedical research of ME and FM in the Aviva Community Fund contest. With thanks to all who helped, they made it through the first round of voting into the Semi-Finals.

The Semi-Finals are now underway and require casting a daily vote through Dec 10th. Voting ends at 4pm EST on December 10th.

The top 20 from the large prize division will become Finalists in the judging phase to determine how much each project will receive. Each Finalist is guaranteed $5,000 and could win up to $100,000!

Voting Is Simple!

If you have not voted before, just go to https://www.avivacommunityfund.org and...

Jody submitted a new blog post:

A Little Poisoning Along the Road to ME/CFS

Anyone else been poisoned along the way? Jody Smith tells part of her horror story ...


Looking at my symptoms, many of which are far less these days and some are gone, it would be easy to figure that I'd just been dealing with some heavy-duty menopausal issues.

The sleep abnormalities, the brain fog, digestive issues, astonishing weight gain, I was the right age ... I fit the menopause profile.

But then I remember some of toxins I've been exposed to over the decades, and I realize that whether menopause had anything to do with my becoming so sick for so long, there was more to it than that.

Until fairly recently, I thought of the pain, inflammation, swelling, and subsequent...

Nielk submitted a new blog post:

Join the National PR Campaign for ME/CFS: Power to the Patient (P2tP)

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 ...


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...

persuasion submitted a new blog post:

A disease with two faces? Re-naming ME/CFS

Persuasion Smith covers the bases on the misleading and disreputable name for our disease we've all been saddled with ...

If there is one thing that is sure to get ME/CFS sufferers riled up, it is the name of our disease.

The very fact that two names are attached to each other, janus-like, almost as if mocking one another seems emblematic of all the controversy surrounding the illness.




If only we could just sort out the name, perhaps everything else would fall into place.

For how can anyone trust a condition with such a slippery, inconclusive title?

Dr. Derek Enlander suggested that we could re-name the illness 'Ramsay's disease'...

Simon submitted a new blog post:

Hunting down the cause of ME/CFS & other challenging disorders - Lipkin in London

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.

Lipkin is a...

RyanPrior submitted a new blog post:

The ePatient Revolution

Ryan Prior shares his experience and his thoughts from attending the Stanford Medicine X Conference as he contemplates the rising of the ePatient Revolution ...


We need more and more ME/CFS patients to integrate into the ePatient (“engaged/empowered patient”) Revolution. Get informed, tell your story, unite with other patients online, and change health care for the better.

Six weeks ago, I attended the Stanford Medicine X Conference, an annual forum that celebrates “emerging technologies in medicine.”

The conference, similar to what you might expect from a TED conference, is particularly notable because it so thoroughly celebrates the patient perspective and...

Jody submitted a new blog post:

Ergonomics and ME/CFS: Have You Hurt Yourself Without Knowing It?

Having a chronic illness like ME/CFS can make it hard to avoid problems that come from bad ergonomics. Jody Smith has learned some lessons the hard way ...

Ergonomics can help people to navigate in a healthy way through their world, so they are not slouching, bent funny or stuck in the same position for too long, and so they can avoid the aches, pains and problems that result from same.

Ergonomics and ME/CFS may seem like strange bedfellows. And in fact, actual ME/CFS bedfellows, those who must live all day long in their beds, may not find anything useful here. As with so many things, those who are bedridden do not...