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Chronic Fatigue Syndrome / Myalgic Encephalomyelitis

ME/CFS Awareness Month Activities (May 2016)

Free ME Documentary Screenings

We are pleased to announce that we have arranged 4 free screenings during May of a new documentary on ME/CFS, 'Forgotten Plague'. A two-minute trailer is available here.


The talks will take place in the following venues:

Limerick - Thursday May 5, 2016 at 11:30 AM
South Court Hotel, Raheen, Limerick cityhttp://www.southcourthotel.com


Galway - Thursday May 12, 2016 (International ME/CFS Day) at 7:30 PM
Maldron Hotel (formerly Pillo Hotel), Sandy Road (off the Kirwan Roundabout, Headford Road), Galway cityhttp://www.maldronhotelsandyroadgalway.com


Dundalk, Co. Louth - Tuesday May 17, 2016 at 2 PM
An Tain Theatre, Crowe St (just off Roden Place).
The theatre is next to the side entrance of The Court House which faces the Square. There is a taxi rank in front of the building.
http://www.antain.ie


Blanchardstown, Dublin 15 - Sunday May 29, 2016 at 3 PM
Crowne Plaza Hotel, The Blanchardstown Centrehttp://www.cpireland.crowneplaza.com/dublin-blanchardstown/

All are welcome. There is no booking required.

If you want further information, please contact us.

You can contact us at:

Irish ME/CFS Association

PO Box 3075

Dubllin 2

Tel: 01-2350965

Email: [email protected]

@IrishMECFSAssoc

http://www.irishmecfs.org/index.html

 
TRIBUNAL ORDERS RELEASE OF PACE DATA
A tribunal panel has ordered Queen Mary University of London (QMUL) to release anonymised data from the PACE trial to Mr. Alem Matthees, a patient who requested it. The ruling has important implications for CFS patients both in the UK and worldwide.

The David-vs-Goliath outcome represents the first successful attempt to begin to counter the PACE authors’ claims — believed by many scientists and thousands of patients to be highly questionable — that the PACE trial showed graded exercise and cognitive therapy to be effective treatments for CFS.

The tribunal was held in April in London, and the panel heard three days of evidence on QMUL’s appeal against the UK Information Commissioner’s decision that they must release the data. Mr. Matthees had requested the data in March 2014 under the Freedom of Information Act, to allow him to conduct main outcome and recovery analyses specified in PACE’s own protocol but abandoned during the trial.

“This is a huge victory for patients, who have a right to examine the evidence for the treatments that affect their lives.”

–Tom Kindlon

Mr. Tom Kindlon, a patient who has published criticism of the PACE trial in medical journals, said, “This is a huge victory for patients, who have a right to examine the evidence for the treatments that affect their lives. I expect that the recovery rate will only be a small fraction of what they claimed, due to the dramatic changes they made to the criteria.” ...

http://www.meaction.net/2016/08/16/tribunal-orders-release-of-pace-data/
 
Controversy will continue but there ius now more evidence for a biological basis for CFS.

Blood biomarkers may help diagnose chronic fatigue syndrome

Inflammation biomarkers may help doctors diagnose chronic fatigue syndrome (CFS), a poorly-understood condition in which people feeling continually exhausted. These biomarkers could also give new clues to what causes the condition, and how to treat it.

The biomarkers were discovered when a team of researchers screened the blood of 192 people with chronic fatigue syndrome for cytokines – substances used by the immune system to control inflammation. The team compared the levels of 51 different cytokines in the people with CFS and 392 people who didn’t have the condition, and found that 17 cytokines rose in tandem with how bad a person’s CFS was.

“These 17 go up by various degrees in a straight line with severity,” says José Montoya, of Stanford University.

Overall, only one cytokine was consistently higher in people with CFS. But when severity was taken into account, the other 16 emerged from the analysis as being linked to the condition. For example, three-times as much of the appetite hormone leptin, which is part of the cytokine family, was present in people with very bad cases of CFS.

Biological basis
It is not yet clear whether the increase in inflammation markers could be a cause or result of the condition.

However, Montoya says the results support mounting evidence that CFS is a physiological condition, not a psychosomatic disorder. “There’s no question this is something that’s biologically based,” he says. “This is a disease that does not get cured with psychological treatments, counselling or anti-depression drugs.” ..

https://www.newscientist.com/articl...hobox&utm_source=Twitter#link_time=1501542059
 
New report contradicts previous study which DWP used to harass M.E. sufferers.

The publication of a study into what an MP called one of the “biggest medical scandals of the 21st century” has sparked a war of words between areas of the medical and science communities. Caught in the crossfire are between 17 and 24 million disabled people worldwide, on whom critics of this latest research are effectively declaring war if they dare to question current mainstream treatment.

PACE Trials: controversial from the start
The PACE Trial was a study into treatment for people living with myalgic encephalomyelitis/chronic fatigue syndrome, commonly referred to as ME/CFS. The research has also been applied to people living with fibromyalgia and Ehlers-Danlos syndromes (EDS), among other illnesses. The PACE Trial claims that people living with ME/CFS can improve their illnesses, and sometimes recover, by having cognitive behavioural therapy (CBT) and by using graded exercise therapy (GET).

The results of the £5m trial, part-funded by the UK Department for Work and Pensions (DWP), were originally published in The Lancet in 2011. But they have been dismissed by many medical professionals and disabled people alike as damaging and ineffective. In the US in 2016, the federal Agency for Healthcare Research and Quality (AHRQ) downgraded the reliability of GET for ME/CFS patients, saying there was “insufficient evidence of effectiveness of GET on any outcome”. It also said there was “low strength” or “insufficient” evidence about the effectiveness of CBT. In 2017, the US Center for Disease Control (CDC) also removed CBT and GET as recommended treatments.

In the UK, CBT and GET are still the NHS’s approved treatment under guidelines from the National Institute for Health and Care Excellence (NICE). But NICE is undertaking a review of this.

Now, a new study into the PACE Trial’s original research has been released. Its evidence completely contradicts the results of the original study, and to cast even more doubt over the PACE Trial’s findings, the study has used the trial’s original data to prove its point. ...

https://www.thecanary.co/discovery/...y-just-declared-war-on-people-living-with-me/
 
New research project

British scientists are launching the world’s largest research project to unlock the genetic clues to a debilitating, poorly understood condition affecting 250,000 people in the UK and leaving many bedridden.

The £3.2 million DecodeME programme aims to identify the minute differences in DNA that put people at risk of developing myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome. The study will recruit 20,000 patients to submit DNA “spit and post” samples and potentially pave the way for the first tests and treatments for an illness which is hard to diagnose and has no cure.

Similar genome-wide association studies have been vital to understanding the roots of other diseases including Alzheimer’s and type 2 diabetes. The project, launched today, is being publicly funded by the Medical Research Council and the National Institute for Health Research.

https://www.thetimes.co.uk/past-six...e-syndrome-search-for-genetic-clues-kfclg0qh6
 
Feeling fatigued at scientific/medical ignorance regarding M.E.? A new report reveals some pointers but the golden grail has yet to be found.

The deepest dive yet into myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) offers a complex view of this mysterious condition. ME/CFS produces crushing exhaustion, particularly after even mild exertion. Many patients struggle to find care, or doctors who believe their symptoms aren’t imagined.

The new work, published this week in Nature Communications, affirms that ME/CFS is unquestionably biologically rooted, says Avindra Nath, clinical director of the U.S. National Institute of Neurological Disorders and Stroke, who led the study. It revealed brain activity differences, along with immune and other abnormalities, in 17 people with ME/CFS compared with 21 healthy controls.

The paper “does bring together the complexity” of the condition, says Jo Cambridge, an immunologist at University College London (UCL) who has found potentially related signs of immune dysfunction in ME/CFS patients. “It highlights all the things you’ve got to take into account when you’re investigating this disease.” ...

https://www.science.org/content/art...-brings-clues-not-clarity-mysterious-syndrome
 
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