The CDC PCOCA telephone broadcast on 10 September 2013, featured a lengthy presentation from Dr Ian Lipkin who revealed some stunning initial results from the study that is primarily hunting for pathogens in ME/CFS. Simon McGrath and Russell Fleming (Firestormm) review this exciting and possibly game-changing news…

Lipkin - CFI

Dr Ian Lipkin
Lead Researcher
Chronic Fatigue Initiative (CFI)
Pathogen Discovery and Pathogenesis Study

Read the full Lipkin Transcript: Here.

Dr Ian Lipkin has been a human whirlwind in ME/CFS research since he became involved a few years back, and he’s just surprised us all by announcing the first results from the world’s largest ever biomedical ME/CFS study in a public broadcast!… Read More

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Andrew Gladman explores the current research climate of ME/CFS, discussing how existing research ties into the emerging autoimmune hypothesis. 

Monoclonal Antibody

Link: ‘New data reveal first predictive biomarkers to tailor rheumatoid arthritis therapy’
Image: computer generated image of an antibody

Throughout the history of ME it is safe to say that understanding of the condition and the research itself has been somewhat fractured at best and lacking significance in many areas. In the last 30 years, following the Lake Tahoe outbreak which piqued the interest of doctors and media, little progress seems to have been made in terms of physiological understanding of the disease processes involved, perhaps due to the stigma of ME as a purely psychological entity which is only in recent years being shaken off.… Read More

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Valentijn sets her sights on the recent NHS ME/CFS and Fibromyalgia online clinic, and targets some of the myths that formed an albeit small part of the expert responses…

gunslinger

Shooting down some ME/CFS myths

Between August 14 and August 20, 2013 the National Health Service (NHS) in England hosted an online question and answer clinic in partnership with talkhealth

This clinic invited patients from around the world with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) or Fibromyalgia to ask questions which were then answered by a panel of 10 experts who were all volunteering their time.  These questions and answers will now remain on the talkhealth site to be used as a resource for other ME/CFS patients seeking answers.… Read More

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The first in a new series of (mercifully) short pieces on recent research. By Simon McGrath

A new study used data from the large PACE Trial to see if CBT and Graded exercise (GET) improved ME/CFS pain. (The main trial itself found a moderate effect of CBT and GET on self-reported fatigue and function.) The study looked at muscle and joint pain frequency, and fibromyalgia status. And it compared CBT and GET to both specialised medical care (SMC) and APT (pseudo-pacing).

The questions are, did CBT or GET have any effect on these – and if so, how big was the effect?… Read More

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Prof Jo Edwards

Professor Jonathan Edwards

by Sasha

The charity Invest in ME’s plans for a UK Rituximab trial got a substantial boost at the end of July when Jonathan Edwards, Emeritus Professor of Connective Tissue Medicine at University College London (UCL), agreed to act as their advisor for the study.

‘No UK expert is better placed than Professor Edwards to advise us on setting up a Rituximab trial for ME patients’, stated the charity, and it’s hard to argue with that. Drs Fluge and Mella believe that the timing of ME patients’ response to Rituximab-induced B cell depletion indicates that ME may be an autoimmune disease, and it was none other than Professor Edwards who proposed, in a 1999 paper in Immunology, that self-perpetuating B lymphocytes drive human autoimmune disease.… Read More

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by Charlotte Dyer

HandsIn May 2005 I met my future husband. Living 200 miles apart we led a hectic life rushing between work and family and meeting each other at the weekends for 48 hours before starting all over again. Joel’s job was particularly demanding, meaning he often had to work until the early hours of the morning, snatching a few hours of sleep before making the two hour journey to my house to spend two nights together before he had to make the journey back home again.

His job also required him to travel abroad sometimes and most notable was a trip he took to India during which he felt terribly ill and seemed to take several weeks to recover.… Read More

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by Sasha

Coins by Catalina Olavarria

Though notes would be good…
Photo: Catalina Olavarria/Flickr

‘Go the extra mile,’ you’re thinking, as you lie on your sofa. ‘I can’t go the extra inch. This isn’t some sponsored walk thing, is it?’

No, my friends, it’s not. It’s an exercise in financial efficiency – oh, the fun! – that will allow even the most broke among us to have a go at raising some money for our favourite charities.

Here’s how it works. Most of us have everyday opportunities to save a bit of money here and there but we don’t bother because the amounts are fairly trivial and it doesn’t seem worth the extra effort.… Read More

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by Jody Smith

pixabay-shadow-ladyOf all the things ME/CFS is responsible for causing in our brains, this may be one of the biggest. Before I was lambasted by ME/CFS, I was an idealistic and trusting sort, loyal to a fault. I tried to see the best in people, tried to give the benefit of the doubt.
 
My soft malleable center has been pretty well kicked out of me over these many years of sickness. Along with the illness, there came a new world view, if you will. Because as the sickness settled in for a long stay, the people in my life gradually disappeared out the back door, never to return.… Read More
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Gabby (Nielk) looks at the background to The Chronic Fatigue Syndrome Advisory Committee (CFSAC) and interviews 5 members including the Chairman…

cfsac_members - August 2013

 ”Any committee is only as good as the most knowledgeable, determined and vigorous person on it. There must be somebody who provides the flame.” Lady Bird Johnson

The mission of the U.S. Department of Health and Human Services (HHS) is to enhance the health and well-being of Americans by providing for effective health and human services and by fostering sound, sustained advances in the sciences underlying medicine, public health, and social services.

We are fortunate that The Chronic Fatigue Syndrome Advisory Committee (CFSAC) is one of ten advisory committees assigned by HHS.… Read More

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Professor Stephen Holgate says ME/CFS is a spectrum of disorders that need to be understood through new approaches, and patients must be partners in research. Simon McGrath reports.

Image from Wikimedia

Houses of Parliament, site of Prof Holgate’s talk

ME/CFS probably isn’t one disease, or even a few different ones – but could be as many as fifteen. So said Professor Stephen Holgate, Chair of the UK Research Collaborative (CMRC), when he addressed the Forward ME Group in the House of Lords on 2nd July. He also argued that a radical New Science was needed to tackle ME/CFS and said patients must be partners in research.… Read More

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by Sasha

Photo: fussy onion/Flickr

London: site of the proposed UK Rituximab trial
Photo by fussy onion/Flickr

On June 6, the Norwegian Medical Research Council agreed to give a large enough grant to the Haukeland Rituximab trial for the study to begin. Later that day, the charity Invest in ME announced that they were initiating a UK Rituximab trial. It seemed to come out of nowhere. There were no details – cost, size, location, research team – but there didn’t need to be. The ME community started throwing money at the trial and trusted Invest in ME when it said it could be done.… Read More

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by Jody Smith

skeleton-jaw

Poor dental health may not be at the top of the list when you think of ME/CFS problems. But many of us who have been sick for any length of time can tell you some horror stories about our teeth. I don’t know if having ME/CFS is directly linked to poor teeth and all that can result, but the inability to get to a dentist or to pay for a visit will assuredly have a direct effect.

Do you have dental coverage? Many with ME/CFS don’t. I certainly don’t. We followed the only path open to us for years, which was to not go to the dentist. … Read More

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Gabby (Nielk) reports on the launch by The 25% Group of this special day of understanding and remembrance for those severely affected by ME

August 8thI wrote the poem below about two years ago, in the midst of one of my harshest crashes.  I was bedridden for many months.  I was in pain most of the time and totally helpless and reliant on others.  It was the darkest time of my life… 

However, I consider myself one of the lucky ones, in that I eventually recovered to the point where today I am able to somewhat function: mostly within the confines of my house.… Read More

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Mark Berry invites readers to join 11 organizations and 31 advocates and write to the CDC, asking them to include appropriate medical tests in their multi-site study.

The historical approach of the US Centers for Disease Control and Prevention (CDC) to the study of ME/CFS has not been universally well-received – and that’s an understatement. The majority opinion of the ME/CFS community seems to be that the CDC has had its head stuck in the sand, as far as ME/CFS is concerned, ever since CDC epidemiologists finally rolled into Lake Tahoe to investigate the outbreak there in 1984. But in recent years there have been some promising signs that the CDC may at last be starting to take the disease more seriously.… Read More

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Hooked up for a CPET

Hooked up for a CPET

Simon McGrath reports on Dr Snell’s new study demonstrating that ME/CFS patients have a reduced capacity to exercise when they repeat a maximum exercise test one day on – unlike healthy controls.

One of the biggest problems of getting ME/CFS taken seriously is that often we ‘look’ normal, even though we feel lousy, and most lab tests produce ‘normal’ findings. How do we prove to the world that we are sick?

A defining feature of ME/CFS is Post-Exertional Malaise (PEM) and a couple of studies have clearly demonstrated PEM in patients [see box]. However, PEM is a subjective experience and one that can only be measured by patient self-report, which won’t satisfy everyone.… Read More

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by Jody Smith

pixabay-shopping-carts-2

Chronic illness and the Poverty Diet often go together. Far too often. I was on the Poverty Diet for many years. I have ME/CFS, my husband Alan deals with crippling past injuries and fibromyalgia. We raised our children on the Poverty Diet during more than half their childhoods.

It is a no-brainer (pardon the ME/CFS pun) that when you can’t work, you aren’t making any money. It is less obvious, to many who haven’t been through it, that people who can’t work because of poor health are not automatically protected by any kind of federal safety net – social, financial or otherwise.… Read More

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Mark Berry introduces Dr Neil Coulson and Anna Maddison from the University of Nottingham, and their new 2-part research project with Phoenix Rising

globe-86244_640The most rewarding part of my work with Phoenix Rising is meeting people who tell me that treatment information they have found on our forums has dramatically changed their lives and their health, or that the forums provide them with valuable social and emotional support in their isolation and are a vital ‘lifeline’ for them. After all, the forums are a central part of Phoenix Rising’s work – they are the largest ME/CFS forums in the world, and how I found the organization in the first place – and the non-profit provides and manages these forums in the hope and belief that they are a valuable resource to the ME/CFS community.… Read More

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by Sasha

Amazon River by markg6 on Flickr 500 pxls

No, not that one!
Photo: Markg6, Flickr

Amazon.com, Inc.: it’s huge! It’s the biggest online retailer in the world and, weirdly, we can easily divert some of its mighty river of money into Phoenix Rising’s coffers. For free! Free, my friends!

First I’m going to tell you how to do it and then I’m going to tell you why.

How to make Amazon give Phoenix Rising free cash

Amazon pays a whacking 5% to 8% of the price of your purchase to any affiliate site from which you arrive at it, with absolutely no extra cost to you.

Phoenix Rising has affiliate links to the following Amazon stores and clicking on your country’s link will take you straight to your usual Amazon home page (go on, have a go):

Phoenix Rising’s US Amazon Store
Phoenix Rising’s UK Amazon Store
Phoenix Rising’s Canadian Amazon Store
Phoenix Rising’s Deutsches Amazon Speichern
Phoenix Rising Française Amazon Store
Phoenix Rising Españoles Amazon Store

Whatever you buy during that ‘trip’ to the store will benefit Phoenix Rising.… Read More

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by Sasha

Backwards, forwards.. just so long as you vote! Image by Dean Terry/Flickr

Backwards, forwards.. just so long as you vote!
Image by Dean Terry/Flickr

After pushing so hard for so many of our organizations in these online voting contests, it’s refreshing to ask you to vote for us this time! Both Phoenix Rising and PANDORA are in the Bogs (lovely name) Footwear contest in which the top two charities will each win $2,500 (£1,700, €1,900), and we can all vote for both.

Phoenix Rising, of course, provides the ME/CFS community with reliable information, advocacy, support for other charities and a busy forum; PANDORA Org advocates and educates about neuro-immune diseases including ME/CFS, fibromyalgia, Lyme and Gulf War Illness, targeting local and national US government agencies to influence policy and improve patients’ lives.… Read More

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by Simon McGrath

revolutionary-woman2Let the Patient Revolution begin‘. A militant cry from those difficult, demanding ME/CFS patients unwilling to listen to doctors and researchers who only have patients’ best interests at heart? No, this dramatic call comes from a pillar of the medical establishment, the British Medical Journal (BMJ). Its recent editorial argues that the healthcare system as a whole is, far from being benign, actually badly broken and can only be fixed by an active partnership with patients:

 

[Most patients face] tests and treatments whose merits are hyped and harms underplayed…

Practice is informed by an incomplete research base bedevilled with selection and reporting bias, and at worst fraud.

Read More

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