In 2012, Maya, who had tried to cope with ME/CFS on her own for many years, attended a pain management centre in Wales, U.K., and is now able to achieve more through pacing and acceptance, than she had been able to before the course…
My name is Maya, I’m 42 and live in Mid- Wales. I have had ME for 8 years, am mostly housebound and use a wheelchair outside.
In April 2012, I underwent a three week residential ME/CFS management programme at Bronllys Pain and Fatigue Management Centre, based in Brecon, Mid-Wales.
My GP has been very supportive since my diagnosis but had run out of ideas so, when she suggested pain management, I felt I had to give it a go.… Read More
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…
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
Jody Smith marvels at how much difference one hour can make to those with ME/CFS, as much of the world has endured The Time Change in recent weeks …
Where I live, we recently went through a time change, compliments of Daylight Savings Time. Having ME/CFS, I don’t need to travel anywhere to get jet lag. I just need the clock to be turned ahead, or backward by one hour.
I know that not everyone lives according to Daylight Savings Time but it happens twice a year in much of the world. Do you experience a crash that happens to occur after one of the time changes of the year?… Read More
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
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
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 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
It is Day Four and the final conference session from San Francisco. In this review we hear from Searcher about the neurosciences session, and PET and EEG analysis, then a study on cognitive functioning, followed by a debate on the revised 2014 IACFS/ME Primer, and then we wrap-up the conference with a terrific summary from Dr. Antony Komaroff…
The 11th biennial IACFS/ME conference is being held in San Francisco.
Day Four, the finale, March 23, 2014.
A very warm welcome to our final review from Day Four (March, 23, 2014), of the IACFS/ME four-day conference. It has been a marathon series of presentations and a real team effort to keep up the momentum.… Read More
Day Three, and Searcher continued to deliver the goods. We hear about the PANDORA national survey results, a very big familial case study from Spain, results from the Canadian Community Health Survey, more results from epidemiological studies (and a look at treatments and comorbidities), then perhaps the key section of the day: the science of exercise testing and post-exertional malaise…
The 11th biennial IACFS/ME conference is being held in San Francisco.
Day Three, Science Papers, March 22, 2014.
It’s Day Three (March, 22, 2014), of the IACFS/ME four-day conference and another packed research presentation agenda. Our summation continues from mid-morning after Searcher took a well-deserved break to try and recover some lost energy.… Read More
Searcher kicks us off on Day Two, with an autoimmunity overview, then we are into immunology and cytokines, we hear from Susan Levine and the allergy-related signatures study done with Lipkin et. al, a talk about paravirus B-19, Mady Hornig from CFI with more research, John Chia who presents on enteroviruses and we close with Nancy Kimas and Dan Peterson discussing diagnosis and treatments…
The 11th biennial IACFS/ME conference is being held in San Francisco.
Day Two, Science Papers, March 21, 2014.
We really are getting stuck into some serious science from our top researchers. Day Two (March 21, 2014), of the IACFS/ME four-day conference featured the presentation of new scientific papers.… Read More
The location has now moved to San Francisco, for the first day of the IACFS/ME 11th biennial event, and another exciting round of presentations to an even larger audience. Searcher was again present, with her Press Pass, and along with some very kind help, from Hope, managed to submit a solid review of some of the highlights…
The 11th biennial IACFS/ME conference is being held in San Francisco from March 20-23, 2014
Conference objectives from Dr Fred Friedberg, IACFS/ME President:
“The conference will a provide a number of fresh updated perspectives on CFS/ME, including new innovative professional workshops on management of the severely ill patient, pediatric CFS/ME, and an immunology primer for clinicians.… Read More
The 2014 conference season began yesterday at Stanford, home of Dr. Jose Montoya and his team, and searcher was there to provide a live commentary on the presentations from an all-star line-up of clinicians and scientists and which featured some exciting new developments on the research front…
Stanford plays host to the first of five conferences over coming days, and, thanks to our volunteer ‘searcher‘, all members of Phoenix Rising will be able to follow events as they unfold, live, in the members-only forum, and also with highlights via Twitter.
We will also aim to publish a public article – such as this one – on each of the days following a conference, providing everyone with a chance to catch-up on events, and after the conferences are finished, we will look at more in-depth analyses of the presentations: once we have had a chance to digest all the information, perhaps interview some of those involved – and pause for breath!… Read More
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…
It 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
In the first in a new series of ‘In Brief’ articles, Andrew Gladman provides a helpful insight into the science behind fairly common topics and explores how they relate to ME/CFS. This time he looks at the muscles, exploring how our reported symptoms might be associated with our condition and considers why such problems could occur…
Muscles of the human head. Patrick J. Lynch, medical illustrator
When ME/CFS is discussed, conversation quickly passes into the realm of infectious agents, immune system defects and, often, the autonomic nervous system.
Little heed is generally paid to one of the most obvious systems affected by the condition – the muscles.… Read More
Simon McGrath se aseguró recientemente una entrevista con el mundialmente famoso doctor Ian Lipkin – un científico que sigue creyendo que EM / SFC tiene una causa física – para descubrir más sobre sus planes para un importante estudio del microbioma intestinal y para averiguar por qué está pidiendo el apoyo de la comunidad de pacientes…
Dr. W. Ian Lipkin ha demostrado un claro compromiso con la investigación en EM / SFC. Primero fue su estudio sobre el virus Borna en la década de 1990, y luego el estudio histórico que descartó el XMRV como causa, y más recientemente hemos oído hablar del enorme estudio en lo inmune y patógenos – una gran colaboración con muchos médicos e investigadores principales, entre ellos el Dr.… Read More
Gabby Klein considers the efforts Dr. Enlander has gone to to ensure that the reality of ME/CFS is presented to the world at large, and gives us an insight into his opinions on some current issues, including an update on the formation of an academy for ME and CFS physicians, announced recently at the Institute of Medicine meeting during his presentation…
Dr Derek Enlander
I am honored to be presenting an interview with my own ME/CFS clinician, Dr. Derek Enlander. He diagnosed my disease 10 years ago when all other doctors were either stumped or unbelieving of my severe symptoms.
He is a brilliant clinician, evidenced by the fact that he started medical school at the age of only 17!… Read More
Jody Smith considers how things we consider beautiful can help feed a starving soul ...
I spent every day for years propped up on pillows on my bed. I could see out my window to the left. My messy closet was to the right. Looking straight ahead I saw a television, a messy desk and a dresser.
Then one year on a rare Christmas shopping expedition, my daughter Rachel the Chauffeur was with me in a department store, and as we neared a bunch of prints (pictures not fabric) I said in passing, “That’s nice.” I stood and looked for a moment at a scene of what felt like a French village.… Read More
The WHO ICD featured recently in an online article (since withdrawn), which heightened patient concern over what might happen when the current ICD-10 is finally revised. N.A.Wright provides a timely summary of this international classification system, considers some of the issues surrounding the existing and proposed listing, and calls on our advocacy organisations to get involved…
The World Health Organization (WHO) is responsible for producing an International Classification of Diseases – the ICD.
An important document in standardising epidemiological data, the ICD has often been a source of confusion in discussions about ME/CFS.
The ICD is subject to continuous review with updates published annually and major revisions are intended to be produced every ten years.… Read More
Andrew Gladman considers the importance of dysautonomia and several of its component parts — neurally mediated hypotension, inappropriate sinus tachycardia and postural orthostatic tachycardia syndrome — all recognised as problematic comorbidities by ME/CFS patients …
Orthostatic intolerance is a frequent problem for those suffering with dysautonomia.
Dysautonomia, most commonly experienced as postural orthostatic tachycardia syndrome (POTS), is a recognised comorbidity of ME/CFS. There is little debate surrounding this and much research literature exists to support such an association.
Understandably, considering the relative frequency with which some or all of the symptoms are reported, much discussion has occurred among patients, clinical experts and researchers, as to what might be causing the condition, and what role it might play in our understanding of ME/CFS.… Read More
It has been seven years since Jody Smith began seeing her Naturopath Doctor. Time then for a brief reflection on the extent to which a variety of interventions may have helped move Jody forwards in her own battle with ME/CFS…
February, this year, marks seven years since I began seeing my naturopath, Dr. Kelly Upcott. For six and a half years, I saw her every month, and if, for some reason, there was five or six weeks between appointments, I would begin to deteriorate rapidly. But all that changed last summer.
Circumstances prevented me from getting in for two months, and we were both pleased to find that there had been no setbacks.… Read More
Gabby Klein provides a useful summary of what was a very important, and quite extensive, IOM open meeting. US Government representatives, patient organizations, advocates and individual patients all made formal presentations…
Chair, Dr Ellen Wright Clayton,
Committee for Diagnostic Criteria ME/CFS
The Institute of Medicine (IOM) has been formally engaged by the US Department of Health and Human Services (HHS), to complete a review of diagnostic criteria and available evidence, for the purpose of making recommendations for a new clinical definition for ME/CFS, one that might also result in a new name for the disease(s).
The first open IOM meeting was watched by ME/CFS stakeholders from around the world and representatives from our community made impressive presentations to the assembled committee.… Read More
Simon McGrath recently secured an interview with the world famous Dr Ian Lipkin – a scientist who continues to believe that ME/CFS has a physical cause – to discover more about his plans for a major study of the gut microbiome and to find out why he’s asking the patient community for its support…
Dr W. Ian Lipkin has demonstrated a clear commitment to ME/CFS research. First came his study looking at Borna virus in the 1990′s, and then the landmark study that ruled out XMRV as a cause, and most recently we have heard about the huge pathogen and immune study – a vast collaboration with many key clinicians and researchers, including Dr Dan Peterson and Professor Jose Montoya.… Read More