ME Affects Four Times As Many Women As Men. Is That Why We're Still Disbelieved? |
|
International news
Wednesday 28 September 2016
From The Guardian:
Many ME patients are too ill to take part in the day of action
on 27 September, so they will leave pairs of shoes in
public
places as a symbol of the millions of lives
gone unlived,
jobs undone, relationships never formed.’
(Photograph: Millions Missing.)
|
ME affects four times as many women as men. Is that why we’re still disbelieved?
Sexism is part of the reason why people with ME struggle to get diagnosed and treated. We need more funding for research into this disabling condition.
By Nathalie Wright
Tuesday 27 September 2016
© 2016 Guardian News and Media Limited or its affiliated companies. All rights reserved.
Today [Tuesday 27 September] friends and families of people with myalgic encephalopathy (ME) are taking to the streets of cities around the world to call for more funding for medical research and education about ME. I am joining them at the London demonstration of the Millions Missing campaign, outside the Department of Health.
Many ME patients are too ill to take part the global day of action, so instead they will leave pairs of shoes in public places as a visual symbol of the millions of lives gone unlived, jobs undone, relationships never formed by people with the disease.
Full article… |
| |
| |
| |
Phenome-Wide Association Study Of Rheumatoid Arthritis Subgroups Identifies Association Between Seronegative Disease And Fibromyalgia |
|
International news
Wednesday 28 September 2016
From Arthritis & Rheumatology:
Phenome-Wide Association Study of Rheumatoid Arthritis Subgroups Identifies Association between Seronegative Disease and Fibromyalgia
Jayanth Doss MD, MPH1,*,
Huan Mo MD, MS2,
Robert J. Carroll PhD3,
Leslie J. Crofford MD4 and
Joshua C. Denny MD, MS5
DOI: 10.1002/art.39851
Author Information:
1Duke University, Rheumatology and Immunology
2Loma Linda University Medical Center, Pathology
3Vanderbilt University, Biomedical Informatics
4Vanderbilt University, Division of Rheumatology and Immunology
5Vanderbilt University, Biomedical Informatics and Medicine
© 2016, American College of Rheumatology
Abstract
Objective: The differences between seronegative and seropositive rheumatoid arthritis (RA) have not been widely reported. We performed electronic health record (EHR)-based phenome-wide association studies (PheWAS) to identify disease associations in seropositive and seronegative RA.
Full article… |
| |
| |
| |
Rows Of Empty Shoes Will Represent Chronic Fatigue Syndrome Sufferers At Millions Missing |
|
International news
Tuesday 27 September 2016
From UK newspaper the Oxford Mail:
Zoë Williams, who lives in Stanford in the Vale near
Wantage, was diagnosed with Chronic Fatigue Syndrome
when she was 13, and has spent most of her life in bed.
She is now 40.
|
Rows of empty shoes outside the Radcliffe Camera, Oxford will represent Chronic Fatigue Syndrome sufferers at Millions Missing
By Pete Hughes
Monday 26 September 2016
©Copyright 2001-2015
MORE than a hundred pairs of shoes will be lined up outside the Radcliffe Camera in Oxford tomorrow [Tuesday 27 September] to represent sufferers unable to attend a demonstration to raise awareness for one of the most debilitating and least understood conditions of our time.
The Millions Missing protest at midday on Tuesday will aim to kickstart a national conversation about Chronic Fatigue Syndrome (CFS), a condition which can leave sufferers housebound for decades but is still almost a complete mystery.
More than 100 Oxfordshire sufferers who would love to attend and show their support will not be able to: instead, as with similar events taking place across the world today, they will ask friends or family to take an item of clothing to represent them.
Among those who will be sending a pair of shoes is Zoë Williams from Stanford in the Vale near Wantage.
Full article… |
| |
| |
| |
Volunteers Wanted For UniSA Research |
|
South Australian news
Tuesday 27 September 2016
From the University of South Australia's Max Nelson (via email):
UniSA 2-day testing study
Researchers at the University of South Australia are looking for ME/CFS sufferers and healthy controls aged 18-65 to take part in a study which aims to investigate how non-invasive heart rate measures can be used to monitor post-exertional malaise. The study employs a 2-day maximal testing protocol, which has previously been shown to provide information on post-exertional malaise in ME/CFS patients, and may in addition be able to provide evidence on a reliable biomarker within the ME/CFS population.
Testing will all take place at the University of South Australia High Performance and Exercise Physiology Clinic located at the UniSA City-East campus on the corner of North Terrace and Frome Road. Testing will consist of one short familiarisation session (45 minutes), and two maximal testing sessions (90 minutes each). The maximal testing sessions need to be completed on consecutive days.
Read more… |
| |
| |
| |
Insurance Firm Stops Making Payments To Retired School Teacher Suffering From Chronic Fatigue Syndrome, Court Hears |
|
International news
Monday 26 September 2016
From Irish news outlet Independent.ie:
The High Court, Dublin
|
Insurance firm stops making payments to retired school teacher suffering form Chronic Fatigue Syndrome, court hears
By Aodhan O Faolain
29 September 2016
© Independent.ie
An insurance company stopped making payments to a retired secondary school teacher, who suffers from Chronic Fatigue Syndrome, because she refused to undergo a test it had requested, the High Court has heard.
Bridget Majella Daly has brought proceedings against Zurich Life Assurance over the insurer's decision to cease paying her a disability allowance she claims she is entitled to.
The 48 year old mother of three of The Chase, Clonmel, Co Tipperary, has suffered from a condition known as ME or Chronic Fatigue Syndrome for many years and has been deemed medically unable to work by the Dept of Education.
Ms Daly says that through the ASTI she signed up to a salary protection scheme with Zurich who ceased paying her benefits in April last and informed her that her case was under review.
As a result she decided to sue Zurich.
Full article… |
| |
| |
| |
Is Your Gut Bacteria Wearing You Out? |
|
International news
Monday 26 September 2016
From dailyRx News:
Is Your Gut Bacteria Wearing You Out?
Gut bacteria has been linked to chronic fatigue syndrome, Cornell study finds.
By Emma Fortel
September 23, 2016
Copyright © 2016 dailyRx® News Network, Inc. All Rights Reserved.
Chronic fatigue syndrome has puzzled physicians for decades. New research suggests an unlikely culprit may be causing chronic fatigue—the gut.
According to a press release issued by Cornell University, researchers have identified biological markers for chronic fatigue syndrome in gut bacteria and inflammatory microbial agents in the blood.
Chronic fatigue syndrome (CFS) is a debilitating disorder characterized by intense fatigue that doesn’t go away with rest, according to the Centers for Disease Control and Prevention (CDC). In addition to fatigue, CFS can cause muscle pain, impaired memory and insomnia. There are no known causes for CFS and no tests for doctors to diagnose CFS.
This study is the first to identify biological markers for CFS. In an unprecedented study, the research team was able to correctly diagnose chronic fatigue syndrome in 83 percent of patients using stool samples and blood work.
Full article… |
| |
| |
| |
Son Taken On Fitness Challenge For Mum's Fibromyalgia Battle |
|
International news
Sunday 25 September 2016
From UK newspaper the North Somerset Times:
Danny Lane with his mum, Gail.
|
Son taken on fitness challenge for mum’s fibromyalgia battle
A Clevedon man is taking part in a series of fitness challenges in support of his mum who suffers from a painful muscular condition.
By Liam Jones
14 September 2016
© 2016 Archant Community Media Ltd
Danny Lane, aged 30, has been tackling a variety of crossfit events which include a mixture of power-lifting, gymnastics and jump training in an effort to replicate the pain his mum, Gail, experiences as a result of her 21-year battle with fibromyalgia.
Danny, who trains at the Crossfit Ozbox gym, will complete his final two challenges on September 24 and 25 when he will also run the Bristol Half Marathon.
...
To follow the campaign, log on to www.facebook.com/FibromyalgiaChallenge.
Full article… |
| |
| |
| |
Chronic Fatigue Sufferers Getting The Wrong Treatment – Thanks To A Falsified Study |
|
International news
Sunday 25 September 2016
From What Doctors Don't Tell You:
Chronic fatigue sufferers getting the wrong treatment—thanks to a falsified study
By Bryan Hubbard
12 September 2016
© 2010 - 2016 WDDTY Publishing Ltd. All Rights Reserved
Sufferers of chronic fatigue syndrome (CFS) are not getting the proper treatment. The standard approach these days is cognitive behavioural therapy (CBT)—known as the ‘talking therapy’, which implies the problem is mainly in the sufferer’s head—but this is based on a landmark study whose results were falsified, it has been revealed this week.
The PACE study had concluded in 2011 that 61 per cent of sufferers were getting well on CBT and exercise—but the numbers who really benefited had been inflated three-fold by researchers.
Full article… |
| |
| |
| |
Trial By Error, Continued: The Real Data |
|
International news
Saturday 24 September 2016
From Virology Blog:
Trial By Error, Continued: The Real Data
By David Tuller, DrPH
22 September 2016
© Belfast Telegraph
David Tuller is academic coordinator of the concurrent masters degree program in public health and journalism at the University of California, Berkeley.
‘The PACE trial is a fraud.’ Ever since Virology Blog posted my 14,000-word investigation of the PACE trial last October, I’ve wanted to write that sentence. (I should point out that Dr. Racaniello has already called the PACE trial a “sham,” and I’ve already referred to it as “doggie-poo.” I’m not sure that “fraud” is any worse. Whatever word you use, the trial stinks.)
Let me be clear: I don’t mean “fraud” in the legal sense—I’m not a lawyer–but in the sense that it’s a deceptive and morally bankrupt piece of research. The investigators made dramatic changes from the methodology they outlined in their protocol, which allowed them to report purported “results” that were much, much better than those they would have been able to claim under their originally planned methods. Then they reported only the better-looking “results,” with no sensitivity analyses to analyze the impact of the changes—the standard statistical approach in such circumstances.
This is simply not allowed in science. It means the reported benefits for cognitive behavior therapy and graded exercise therapy were largely illusory – an artifact of the huge shifts in outcome assessments the authors introduced mid-trial. (That’s putting aside all the other flaws, like juicing up responses with a mid-trial newsletter promoting the interventions under investigation, failing to obtain legitimate informed consent from the participants, etc.)
Full article… |
| |
| |
| |
Fibromyalgia Finally Recognised As Long-Term Condition In Northern Ireland |
|
International news
Saturday 24 September 2016
From Irish newspaper the Belfast Telegraph:
Alliance's Paula Bradshaw
|
Fibromyalgia is recognised as a condition
By Staff Reporter
22 September 2016
© Belfast Telegraph
Fibromyalgia has finally been recognised as a long-term condition in Northern Ireland.
The illness, which mainly affects women, causes pain all over the body and can be difficult to diagnose.
Paula Bradshaw, an Alliance MLA, warned that without further health service reforms, victims would still not get the treatment they need.
Full article… |
| |
| |
| |
"Froggy Frog And The Pain Gang" Book Launch |
|
South Australian news
Friday 23 September 2016
From Facebook:
Foggy Frog and the Pain Gang by Megan Schartner : BOOK LAUNCH
Event: 24 September 2016
One in five people live with an invisible illness causing chronic pain and fatigue. It can be difficult to explain these symptoms to others but Foggy Frog and the Pain Gang can help.
This long awaited picture book has been developed to help raise awareness of invisible illnesses in the wider community.
Come and celebrate the launch of Foggy Frog and the Pain Gang with its author, Megan Schartner, and Dignity for Disability MLC Kelly Vincent. We are please to be launching the book in time for the start of Invisible Illness Awareness Week 2016, which runs from 26 September to 2 October 2016.
Join us on Saturday 24 September from 1:30pm at Burnside Library for light refreshments, a live story reading and book signing.
Books will be available for purchase on the day.
There will be chairs available during the event, however if it would make you more comfortable feel free to bring along a cushion to sit on.
Full article… |
| |
| |
| |
South Australian Health And Medical Research Institute (SAHMRI) Calling For Research Participants |
|
South Australian news
Friday 23 September 2016
From the South Australian Health and Medical Research Institute (via email):
South Australian Health and Medical Research Institute (SAHMRI)
Research participants wanted
Chronic fatigue syndrome: Leptin, interleukin 6 and clinical symptoms.
What is Chronic Fatigue Syndrome?
Chronic fatigue syndrome (CFS) is characterised by a constellation of symptoms in previously healthy and active individuals.
Because of these symptoms, quality of life of people with CFS can be extremely compromised. While the search for a clear-cut cause remains elusive, we believe that we can make a major contribution to a person’s quality of life by elucidating the biological basis of their clinical symptoms.
If the biology underlying the disabling symptoms of CFS is elucidated, we will be able to target treatments aimed at symptomatic improvement.
What is the purpose of this study?
To evaluate the relationship of the hormones (cytokines) Leptin and Interleukin-6 on the symptoms of Chronic Fatigue Syndrome. We can test these by using a blood sample. We are also embarking on the development of a genetic database for CFS.
Read more… |
| |
| |
| |
Bad Science Misled Millions With Chronic Fatigue Syndrome. Here's How We Fought Back |
|
International news
Thursday 22 September 2016
From STAT:
Bad science misled millions with chronic fatigue syndrome. Here’s how we fought back
New research finds a striking similarity
By Julie Rehmeyer
September 21, 2016
If your doctor diagnoses you with chronic fatigue syndrome, you’ll probably get two pieces of advice: Go to a psychotherapist and get some exercise. Your doctor might tell you that either of those treatments will give you a 60 percent chance of getting better and a 20 percent chance of recovering outright. After all, that’s what researchers concluded in a 2011 study published in the prestigious medical journal the Lancet, along with later analyses.
Problem is, the study was bad science.
And we’re now finding out exactly how bad.
Full article… |
| |
| |
| |
Chronic Fatigue Sufferers Getting The Wrong Treatment – Thanks To A Falsified Study |
|
International news
Thursday 22 September 2016
From ME Action:
PATIENTS’ REANALYSIS SINKS PACE’S “RECOVERY” CLAIMS
New research finds a striking similarity
By Alex Anderssen
September 21, 2016
Copyright © 2015 The Myalgic Encephalomyelitis Action Network, All Rights Reserved
Patients and statisticians have used the recently released data from the PACE trial to show that cognitive behavioural therapy and graded exercise therapy did not help patients in the study to recover.
Alem Matthees, an Australian patient who obtained the data after a two-year battle over his Freedom of Information request, applied the study authors’ own pre-planned analyses that they had abandoned after the trial had finished.
Working with independent statisticians and other patients with mathematical expertise, he showed that only 7% of the cognitive behavioural therapy group, 4% of the graded exercise group, and 3% of a no-therapy comparison group recovered. Differences between the groups were within chance variation, indicating no effect of the therapies.
Full article… |
| |
| |
| |
More In The News… |
|
|
