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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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Clark Ellis brings us Part 1 of an interview with Dr. Lucinda Bateman, where she answered questions posed by the patient community …

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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 will be published in two parts.

This part, the first, covers questions on the committee and IOM process, and the IOM’s diagnostic definition.… Read More

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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

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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

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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