≡ Menu

Research

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

{ 5 comments }

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

{ 96 comments }

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

{ 28 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 }
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 }

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 }

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

{ 78 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 }

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 }

Andrew Gladman explores the current and historic hypotheses relating to nitric oxide problems in ME/CFS. Part 1 of 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. Part 1 focuses on what nitric oxide is, how its produced and what exactly it does …

nitric oxideOver the years there have quite a number of proposed disease mechanisms relating to nitric oxide (NO) problems of patients suffering with ME/CFS. Studies have however, over the years, proven somewhat inconclusive in the past.

Dr. Pall is historically one of the staunch believers in the hypothesis that ME/CFS is a result of abnormal functioning of the nitric oxide cycle and the downstream effects this can have.… Read More

{ 34 comments }

Mark Berry continues his series of articles on the 9th Invest in ME International ME Conference in London, with the emphasis shifting from autoimmunity to pathogens and the gut …

IIMEC9logo2wThis is the second in a series of articles reporting on the 9th Invest in ME International ME Conference (IIMEC9), held as usual in the Lecture Theatre at 1 Birdcage Walk in Westminster on May 30th, 2014.

You can view the full conference programme (with biographies of the speakers) here, and the Conference Journal is available as a PDF document here. Invest in ME have posted a conference report by Dr.Read More

{ 20 comments }

Mark Berry begins a series of articles on the 9th Invest in ME International ME Conference in London, with a look at three presentations on autoimmunity

IIMEC9logo2wThis is the first in a series of articles reporting on the 9th Invest in ME International ME Conference (IIMEC9), held as usual in the Lecture Theatre at 1 Birdcage Walk in Westminster on May 30th, 2014.

You can view the full conference programme (with biographies of the speakers) here, and the Conference Journal is available as a PDF document here. Invest in ME have posted a conference report by Rosamund Vallings, and Phoenix Rising tweeted the conference live.… Read More

{ 7 comments }

Simon McGrath looks at theories that microglia, the brain’s immune cells, might be overactive and driving the symptoms of ME/CFS and fibromyalgia.

In Part 1, he described how the body reacts to infection or wounding with a “sickness response” that partly resembles ME/CFS, and how the microglia are the last step in the physiological mechanisms that lead to sickness response.

Could microglia be behind the symptoms of ME/CFS?                   Artist’s image of a microglia.  © 2012 Hagop Kaneboughazian

Sickness response is a good thing, helping us survive by resting to fight off infection. But it evolved as a short-term response, and may be harmful if it sets in for the long-term, perhaps playing a role in ME/CFS.… Read More

{ 35 comments }

Simon McGrath looks at theories that microglia, the brain’s immune cells, could trigger and perpetuate the symptoms of ME/CFS and fibromyalgia.

sick

‘Sickness Behaviour’: the immune system releases cytokines in response to infection, which activates microglia in the brain and creates symptoms including fatigue, pain and cognitive problems.

Your dog can’t tell you when she’s feeling sick, but even so, you know. She moves slowly, she doesn’t eat, she sleeps a lot, she curls up in a corner by herself. “Sickness behavior” is shared by all mammals, and in humans it’s been shown to include fatigue, cognitive problems, body aches and pains and disturbed sleep.… Read More

{ 32 comments }

Graham, Janelle and Bob, have once again excelled themselves with their latest take on the ‘poisoned apple’ that was the PACE Trial…

PACE Recovery Song Video 6Once upon a time, long, long ago a king and queen ruled over a distant land. The queen was kind and….

Whoops, sorry there! I got confused for a moment. Wrong fantasy tale…

Several years ago a team of psychologists and psychiatrists published the first of their fables about the effectiveness of CBT (and graded exercise) in treating ME/CFS. It was known throughout the world as “The PACE Trial”.

A group of valiant, honest crusaders, mostly members of Phoenix Rising, struggled diligently and bravely to produce an analysis of the faults of the trial and, hosted by Phoenix Rising, published their report.… Read More

{ 35 comments }

In a follow-up article to the recent IACFS/ME conference presentation in San Francisco, and after speaking at length with Dr. Mady Hornig, ‘searcher’ delves deeper into the impressive work being completed by the Chronic Fatigue Initiative, and focuses in on those cytokine results …

CFI LogoMembers of the Chronic Fatigue Initiative (CFI) and Scott Carlson, the executive director of the Hutchins Family Foundation, gave a talk at lunch-time on the second day of IACFS/ME to share their research thus far and their future plans.

This presentation was one of the highlights of the conference to me because of the high quality research CFI is doing. Read More

{ 13 comments }

The latest video release from the Dutch group ME/cvs Vereniging, with Dr Charles Shepherd from the UK ME Association, and announcing a live chat session to be held Thursday, April 10, 2014…

MEcvs Vereniging

Dutch group ME/cvs Vereniging present their latest video followed by a chat session with Dr Charles Shepherd from the UK ME Association

ME/cvs Vereniging launched a series of broadcasts from expert clinicians and researchers in January 2013, as part of a government subsidized project called, “Science to Patients”.

Each expert has also taken part in Q & A sessions, enabling patients to ask questions on both theoretical and practical aspects of ME/CFS.… Read More

{ 64 comments }

The second in a new series of ‘In Brief’ articles, where Andrew Gladman provides a helpful insight into the science behind fairly common topics, exploring how they relate to ME/CFS. This time he discusses the adrenal glands and why they can be such a talking point …

Diagram showing the location of the adrenal glands, above the kidneys.

Diagram showing the location of the adrenal glands, above the kidneys

While the frequent topics of conversation relating to ME/CFS appear to now be infectious agents, autoimmunity and often a dysfunctional nervous system, many patients and researchers still turn their attention to problems within the endocrine system, namely the adrenal gland.

As the gland within the body centred around stress responses, it is initially quite a logical place to look for problems.… Read More

{ 39 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 }

Simon McGrath takes a brief look at a recent paper that reveals some of the most powerful evidence of cognitive problems in people with ME/CFS to date…

Confused, exhausted, depressed - pixabayIt might not come as a huge surprise to patients, but a new study has found that mental fatigue can persist long after mental exertion is over.

Specifically, after a 3-hour session of cognitive testing of memory and attention, healthy controls took an average of 7 hours to recover, compared with 57 hours – more than two days – for CFS patients.

While one previous study found mental fatigue continues days after physical exertion, this appears to be the first research paper to demonstrate that mental exertion itself leads to prolonged mental fatigue.… Read More

{ 89 comments }