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

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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

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Sometimes ME/CFS emerges after mononucleosis, or glandular fever. Simon McGrath shares results from a long-term follow-up study from Haukeland University Hospital in Norway …

results“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 hardly spectacular.

Read More

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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. 

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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

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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.

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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 process is flawed and invalid and we should either fight it, or ignore it, rather than participate.… Read More

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

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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.… Read More

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Give ME the Money

December 15, 2014

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.… Read More

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ResearchThe 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!… Read More

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

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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.… Read More

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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

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

pixabay-2-faceIf 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’ in the grand tradition of calling diseases after the people who first documented them.… Read More

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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

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The ePatient Revolution

October 30, 2014

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

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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 because it has a massive social media impact.… Read More

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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 …

pixabay-privacyErgonomics 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.… Read More

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Dr. Kerr, I presume?

October 14, 2014

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

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Mark Berry introduces the new President of Phoenix Rising, Dr. Gary Solomon, and welcomes Professor Jonathan Edwards to the Phoenix Rising Board of Directors.

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On behalf of the Phoenix Rising Board of Directors, I’m delighted to announce the appointment of two new board members. Regrettably, I also have to say goodbye to one.

Karen Luoto has stepped down as President.

I would like to express my profound gratitude to Karen for the vital work she has done in the last two years to stabilize and professionalize Phoenix Rising’s core administrative processes. I cannot stress enough what a crucial job this has been.… Read More

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Gabby Klein gives an overview of the  P2P process, shedding light on the pitfalls with advice as to what we can do in protest …

Right after I wrote this article, the draft review was made public  HERE.   We have started a thread HERE on Phoenix Rising in order to discuss this review. The review in its final form will be the  evidence presented to the P2P panel in advance of the Workshop in December.  

Comments will be accepted till October 20th - HERE.  

What is the P2P?

 The National Institutes of Health (NIH), through the Office of Disease Prevention (ODP) has a new program called the Pathways to Prevention (P2P).… Read More

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New grandma Jody Smith shares her frustrations about not being able to visit the new baby…

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My daughter and son-in-law just had a baby last week. We are thrilled. But we won’t be able to see the baby or hold her any time soon. We won’t be able to take over little gifts or help out with housework or babysitting.

The little family lives a province away and we can’t afford to make the trip. And that includes not being able to afford the energy it would require.

People automatically — and naturally — ask if we’re going to fly out to see them, and I must repeat to one then another that, no we won’t be able to go.… Read More

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Persuasion Smith shares some thoughts on the stigma that comes with ME/CFS …

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We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.

 It is not just a case of stigma. Yes, who wants to admit that they have ME/CFS? But then who wants to openly admit they have AIDS or hepatitis C, or that they wear a colostomy bag?

 All illnesses are stigmatised: when you get ill people prefer to stay away.… Read More

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Jody Smith loves knitting. Again. She thought her days of knitting and purling were long over but … she’s back …

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A dozen years ago I was so decimated by ME/CFS that I couldn’t read, watch TV, or flip through a magazine. My days were spent zipping back and forth along the spectrum of waking and sleeping.

I was wide awake staring at the ceiling, undulating with a seasick vertigo and parasthesia. I was fitfully in and out of sleep. I was sleeping deeply for long and irregular hours, waking sometimes in the middle of the night, in the middle of the afternoon, in the evening … interesting that rarely did I wake at a “normal” hour of the morning.… Read More

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Andrew Gladman explores the current and historic hypotheses relating to nitric oxide problems in ME/CFS. This second article in a 2-Part series puts nitric oxide under the microscope and explores what it is, what it does and why it is so frequently discussed in the world of ME/CFS.

The focus of this article is to build upon the previous article and explore how the hypotheses surrounding ME/CFS and nitric oxide weigh up against one another. It is therefore advised to read Part 1, which can be found here, first.

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In the last article we explored what exactly nitric oxide is, how it is produced in the body and the numerous different functions it has over a variety of different bodily systems.… Read More

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