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ME/CFS Australia Ltd
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ME/CFS AUSTRALIA (SA) INC

Registered Charity 698

Email:
sacfs@sacfs.asn.au

Mailing address:
PO Box 28,
Hindmarsh,
South Australia 5007

Office:
Closed while relocating

Phone:
1300 128 339

Office Hours:
Wednesdays, 10am-3pm

ME/CFS Australia (SA) Inc supports the needs of sufferers of Myalgic Encephalomyelitis, Chronic Fatigue Syndrome and related illnesses. We do this by providing services and information to members.

Disclaimer

ME/CFS Australia (SA) Inc aims to keep members informed of the various research projects, diets, medications, therapies etc. All communication, both verbal and written, is merely to disseminate information and not to make recommendations or directives.

Unless otherwise stated, the views expressed on this Web site are not necessarily the official views of the Society or its Committee and are not simply an endorsement of products or services.

Support

Eco Pest Control

ME/CFS Australia (SA) Inc wishes to thank Eco Pest Control for its support of the Society.

BankSA & Staff Charitable Fund

ME/CFS Australia (SA) Inc wishes to thank BankSA & Staff Charitable Fund for its support of Talking Point, the Society’s official journal.

Society Seminars for 2016
Saturday 20 February 2016
1:30pm
Topic: Dr Katia Ferrar and Ms Minh Pham from the University of South Australia will discuss the research study “Physical activity and time use patterns of adults with chronic fatigue syndrome”, which relates to determining parameters for ME/CFS activity incapacity, and how this will help to develop treatment options.

Saturday 9 April 2016
1:30pm
A screening of the ME/CFS documentary, Forgotten Plague.

Saturday 25 June 2016
1:30pm
Speaker: Dr Ian Buttfield.
Dr Buttfield will discuss the ANRES register.

Saturday 27 August 2016
1:30pm

Saturday 19 November 2016
Annual General Meeting
1:30pm
Details for all seminars…

ME/CFS Diagnostic Criteria and Guidelines

www ME: International Consensus Criteria
(Journal of Internal Medicine, Aug 2011)
PDF

For GPs:
ME – Adult & Paediatric:
International Consensus Primer for Medical Practitioners
(2012)
(PDF, 1.49 MB)

PDF

ME/CFS: A Clinical Case Definition and Guidelines for Medical Practitioners
– An Overview of the Canadian Consensus Document
(2005)
(PDF, 1 MB)

  Note: See here for an overview on the Canadian Consensus Criteria for Fibromyalgia (PDF, 1.70 MB)

PDF

ME/CFS Guidelines for GPs
(South Australian Department of Health)
(English) (PDF, 460 KB)

PDF

ME/CFS Guidelines for GPs
(South Australian Department of Health)
(German) (PDF, 186 KB)

PDF

For Psychiatrists (in English):
CFS: Assessment and Treatment of Patients with ME/CFS – Clinical Guidelines for Psychiatrists
(Eleanor Stein MD FRCP[C], 2005)
(PDF, 460 KB)

PDF

For Psychiatrists (in German):
Chronic Fatigue Syndrom: Diagnose und Behandlung von Patienten mit ME/CFS – Klinische Leitlinien für Psychiater
(Eleanor Stein MD FRCP[C], 2005)
(PDF, 313 KB)

 
Australian ME/CFS Societies
NATIONAL
ME/CFS Australia Ltd
Address: PO Box 7100 Dandenong VIC 3175
Phone: (03) 9793 4500
Fax: (03) 9793 1866
Web: www.mecfs.org.au
Email: ceo@mecfs.org.au
AUSTRALIAN CAPITAL TERRITORY
ACT ME/CFS Society, Inc
Address: c/o SHOUT, PO Box 717, Mawson ACT 2607
Phone: (02) 6290 1984
Fax: (02) 6290 4475
Web: www.mecfscanberra.org.au
Email: mecfsadmin@shout.org.au
NEW SOUTH WALES
ME/CFS Society of NSW Inc
Postal address: PO Box 5403, West Chatswood NSW 1515
Office address: Suite 204, 10 Help Street, Chatswood NSW 2067
Phone: (02) 8006 7448
Web: www.me-cfs.org.au
Email: admin@me-cfs.org.au
NEW SOUTH WALES
The ME/CFS & FM Association NSW
Web: www.mecfsnsw.org
Facebook: ME/CFS & FM NSW Support Group
Facebook: Chronic Fatigue Syndrome NSW
NORTHERN TERRITORY
ME/CFS Australia (Northern Territory)
Address: PO Box 120, Prahran, VIC 3181
Reception: (03) 9529 1344
Support Line: (03) 9529 1600
Web: www.mecfs-vic.org.au
Email: admin@mecfs-nt.org.au
QUEENSLAND
ME/CFS/FM Support Association Qld Inc
Address: c/o Mission Department, St. Vincent’s Hospital, Toowoomba Qld 4350
Phone: (07) 4632 8173
Web: www.mecfsfmq.org.au
Email: mefmtba@bigpond.com
Facebook Page
SOUTH AUSTRALIA
ME/CFS Australia (SA) Inc
Postal address: PO Box 28, Hindmarsh SA 5007
Address: 266 Port Road, Hindmarsh SA 5007
Phone: (08) 8346 3237 ('834 MECFS')
Support line: (08) 8346 3237 or 1300 128 339 for country callers
Web: www.sacfs.asn.au
Email: sacfs@sacfs.asn.au
TASMANIA
ME/CFS Australia (Tasmania)
Address: PO Box 120, Prahran, VIC 3181
Reception: (03) 9529 1344
Support Line: (03) 9529 1600
Web: www.mecfs-vic.org.au
Email: admin@mecfs-tas.org.au
VICTORIA
ME/CFS Australia (Victoria)
Office address: 2/240 Chapel Street, Prahran, VIC, 3181
Postal address: PO Box 120, Prahran, VIC 3181
Reception: (03) 9529 1344
Support Line: (03) 9529 1600
Web: www.mecfs-vic.org.au
Email: admin@mecfs-vic.org.au
WESTERN AUSTRALIA
The ME/CFS Society of WA (Inc)
Address: The Centre for Neurological Support, The Niche, 11 Aberdare Road, Nedlands, Perth WA 6009
Phone: (08) 9346 7477
Fax: (08) 9346 7534
Web: www.mecfswa.org.au
Email: info@mecfswa.org.au

PDF

List of Australian ME/CFS organisations
(PDF, 19 KB)

Word

List of Australian ME/CFS organisations (Word, 41 KB)

 

 

ME Sufferer Coming To The End Of Her Step-By-Step Charity Challenge

International news

Wednesday 1 June 2016

 

From UK newspaper The Argus:

 

Alison Woodland
Alison Woodland
(Photo: Sarah Staples)
 

ME sufferer coming to the end of her step-by-step charity challenge

By Siobhan Ryan
May 31, 2016

© Copyright 2001-2015

A TEACHING assistant struck down by a debilitating illness with no known cure is set to finish a year-long challenge.

ME sufferer Alison Woodland made a pledge to walk 250,000 steps in 12 months, one for every person in the UK with the condition.

Ms Woodland took on her challenge in aid of the ME Association, which supports those with the condition, which is also known as chronic fatigue syndrome.

The former Chichester College student has already walked more than 230,000 steps and expects to finish her challenge in June.

To make a donation, visit justgiving.com/fundraising/make-every-step-count.

 

Full article…

 
 
 

Tisha Bratt Tells Of 'Exhausting' Struggle With Chronic Fatigue Syndrome

International news

Wednesday 1 June 2016

 

From UK newspaper the Southern Daily Echo:

 

Tisha with Tibetan terrier Maddie
Tisha with Tibetan terrier Maddie
 

High-flying director Tisha Bratt tells of 'exhausting' struggle with chronic fatigue syndrome

By Sally Churchward
May 31, 2016

© Copyright 2001-2015

HAVING endured more than 20 operations for breast cancer and gynaecological issues, Tisha Bratt was ready to put her health problems behind her.

But she didn't know she was about to be struck down by little-understood health problem that would see the high-flying financial director unable to do basic sums or even write her own name, leave her bed bound for months at a time and still be affecting her 22 years later.

Despite her health problems, Tisha was as active and fit as she could be.

She first noticed her strange new symptoms following an activity holiday, when she suddenly developed a ‘horrendous’ pain in her finger.

“It was like someone was pushing a hot metal spike into my finger – it was really odd,” says the 60-year-old who lives in Chandler's Ford with her husband, Simon.

“The next day it was gone but then a week later I felt the same pain in my toe. Then, when I was driving, I went to change gear and it felt like my left arm was going to break. I thought it was because I’d hurt it playing squash, but then it occurred to me that I’m right handed, so it didn’t make sense.

“Then I developed flu-like symptoms. I’d be off work for a few days, feel better and go back and then be ill again.

“I was so exhausted, I kept having to have time off. I would be in bed and be so exhausted that I couldn’t even turn over.”

Eventually Tisha’s GP sent her to a specialist who diagnosed ME.

 

Full article…

 
 
 

Fibromyalgia Treatment Often Depends On Physician's Specialty

International news

Wednesday 1 June 2016

 

From Fibromyalgia News Today:

 

Stethoscope
 

Fibromyalgia Treatment Often Depends on Physician’s Specialty

By Daniela Semedo, PhD
May 27, 2016

© Copyright 2015 - 2016 BioNews Services, LLC

Despite published guidelines, fibromyalgia (FM) treatment still varies depending on physicians’ specialties, according to the findings of a study recently published Pragmatic and Observational Research.

FM is a chronic pain condition, characterized by numerous associated symptoms that include widespread pain, fatigue, sleep disturbances and dyscognition. Some symptoms may be shared with other conditions also in the FM patient.

As with many forms of chronic pain, multiple treatment approaches can be considered. Clinicians often match the appropriate treatment strategy with the needs of the individual patient.

Historically, the management of FM had largely fallen under the purview of rheumatologists. Most recently, patients have been reaching out for treatment from a wider range of health experts that include primary care physicians, psychiatrists, and neurologists.

In the study “Variations in the management of fibromyalgia by physician specialty: rheumatology versus primary care,” a team of researchers evaluated the effect of physician specialty regarding diagnosis and treatment of FM, and assessed the clinical status of patients initiating new treatment for FM.

 

Full article…

 
 
 

Allodynia And Fibromyalgia

International news

Tuesday 31 May 2016

 

From ProHealth:

 

Cactus
 

Allodynia and Fibromyalgia

By Nikki Albert
May 28, 2016

© 2016 ProHealth, Inc. All rights reserved.

Does your skin burn like it has a sunburn on it? Does contact with your clothes aggravate you beyond belief? Does even the lightest touch make you want to jump out of your skin? That sounds like Allodynia.

Allodynia is a type of pain associated with Fibromyalgia and is considered a rare type of pain. With allodynia, there is a triggered pain response from stimuli that does not normally cause pain. In this case, it causes a great deal of skin pain. The skin burns to the touch and is often described as a sunburn sensation. Clothes will hurt against the skin. Even the slightest of breezes will feel painful against the heightened and tender skin. There is no exact cause for allodynia, but it is considered to be from central sensitization where there is an increase of excitability in the neurons of the central nervous system. As such, harmless stimulus – like a light touch – activates the nociceptors which are usually activated only in response to intense stimulus causing damage to the tissue and thus causing pain where there should be none.

The pain caused by touch is called tactile allodynia; when caused by movement, it is mechanical allodynia. Thermal allodynia is related to temperature. Other pain conditions can create this response such as neuropathy, post herpetic neuralgia and migraines. In fact, with migraines, allodynia is common in the scalp, although it can occur anywhere.

 

Full article…

 
 
 

Why Are Fibromyalgia Researchers Wasting Time And Money On The Obvious?

International news

Tuesday 31 May 2016

 

From the National Pain Report:

 

Donna Gregory Burch
Donna Gregory Burch
 

Why are Fibromyalgia Researchers Wasting Time and Money on the Obvious?

By Donna Gregory Burch
May 28, 2016

Copyright 2016 National Pain Report

Since I’ve been reporting on fibromyalgia, I’ve had the opportunity to interview some awesome researchers. Even though it feels like a cure for fibromyalgia is far away, there are some incredibly committed, talented researchers out there who are working so hard to help us. I think some of them want the answers just as much as we do, and their perseverance and dedication is paying off.

Nearly every month there’s another study hinting at the mechanisms causing fibromyalgia symptoms, or there’s more progress being made in developing new treatments. Reading about these breakthroughs is always exciting because it means fibromyalgia is gaining legitimacy, and we are slowly – albeit very, very slowly – moving toward a potential cure.

But for every one of those exciting headlines, there are others that just make me shake my head in frustration. Here are a few recent examples:

  • “Fibromyalgia symptoms can include breast pain”
  • “Female fibromyalgia patients experience sexual dysfunction and mood, anxiety disorders, according to study”
  • “Fibromyalgia sufferers have difficulty maintaining continuous sleep, study says”
  • “Fibromyalgia disability status linked to severe symptoms, higher medication use and physically demanding jobs”
  • “[Fibromyalgia is] worse than chronic pain alone, but exercise helps”

 

Full article…

 
 
 

Song For #MillionsMissing: "One Voice" By Jularah

International news

Monday 30 May 2016

 

From Jularah Hannam-Burns:

 

Millions Missing
 

MILLIONS MISSING

Jularah Hannam-Burns
May 15, 2016

#MillionsMissing - Video by Jularah in support of the #MillionsMissing M.E & C.F.S campaign. Song 'One Voice' by Jularah. It took me months to record due to ill health and I had to get a guitarist to play for me due to pain and fatigue.

Please support:

visit - meaction.net and changeformechangeforus.co.uk

[Note: The song begins at 0:42]

 

 

View on YouTube…

 
 
 

Dr Ron Davis Interview In San Francisco For #MillionsMissing

International news

Monday 30 May 2016

 

From The ME Action Network on YouTube:

 

ME Action Network
 

Dr. Ron Davis Interview SF #MillionsMissing

May 27, 2016

Dr. Davis speaks about ME/CFS, research, the need for funding, and his severely ill son.

 

 

View on YouTube…

 
 
 

UK Christian Set For Long-Term Tanzanian Mission

International news

Monday 30 May 2016

 

From UK Christian news outlet Network Norwich:

 

Joy McCann and two Tanzanians
Joy McCann (right)
 

Norwich Christian set for long term Tanzanian mission

New Costessey Christian Joy McCann will head out to Tanzania on Sunday as a long term missionary, after visiting Africa for the first time in April, when she realised a vision God had given her during her 13 years of ill health with Chronic Fatigue Syndrome.

May 27, 2016

In April Joy McCann (25) from New Costessey embarked on a three week trip to visit the Christian organisation Tanzania Bridge of Hope. On Sunday, May 29 Joy will head back to East Africa to serve as a long-term missionary.

Joy’s journey to Africa began in 2002 when she was diagnosed with Chronic Fatigue Syndrome/ME. It was during this time that she had visions from God of a place in Africa where she was to go to when she was better.

Last year after suffering with the illness for 13 years Joy was healed, through a lot of prayer at her church, Gateway Vineyard, in Norwich.

Here Joy describes her experience of visiting rural Mwanza in April and how it has led to her exciting decision to become a full time missionary with the organisation Tanzania Bridge of Hope.

 

Full article…

 
 
 

South African Woman Home-Bound By Invisible Disease

International news

Monday 30 May 2016

 

From South African newspaper the Benoni City Times:

 

Retha Viviers (left) and Leigh-Ann Horn
Retha Viviers (left) and Leigh-Ann Horn live with ME/CFS, a
disease which causes chronic fatigue and depletion of energy.
 

Woman home-bound by invisible disease

A woman previously known for her flourishing podiatry practice in Northmead, is now homebound by an invisible and exhausting disease.

By Erik van Dijk
May 27, 2016

Copyright © 2016 Caxton & CTP Printers and Publishers Ltd.

Leigh-Ann Horn was a podiatrist in Benoni for 18 years, but she sold her practice after the onset of Myalgic Encephalomyelitis (ME) or Chronic Fatigue Syndrome (CFS), also known as ME/CFS.

She has lived with the disease for the past 15 years, being forced to stay at home on most days, due to a lack of energy.

Sufferers feel exhausted most of the time and often can’t function for more than three hours at a time, without sleep.

Additionally, people with the disease can’t perform physically straining activities, crashing quickly after doing something mundane, such as running a few metres too far or walking in a swimming pool for a few minutes too long.

Sleep often doesn’t help and stress makes the disease worse.

The Morehill resident worked with the early symptoms of the disease for several years, but eventually couldn’t anymore.

 

Full article…

 
 
 

Ron Davis On Possibly Explaining (Almost) Everything In ME/CFS: The #MissingMillions Talk

International news

Sunday 29 May 2016

 

From Health Rising:

 

Martin Arber
Ron Davis
 

Ron Davis on Possibly Explaining (Almost) Everything in ME/CFS: The #MissingMillions Talk

By Cort Johnson
May 28, 2016

"We can make a model for that (mitochondrial problems) and explain almost everything about what we see in this disease."
Ron Davis

What an exciting presentation took place at the San Francisco #MissingMillions protest site on May 25th. Not only did Ron Davis of the Open Medicine Foundation say that he thinks (very early in the OMF's End ME/CFS project, by the way) that not only do they believe that they're really onto something, but that they're already pursuing compounds that might help and talking with drug companies.

Obviously, it's early days yet, but the OMF clearly believes they may have opened an important new beachhead in this disorder – one that could explain much.

First some ME/CFS and OMF news....

The Consortium Approach Wins Out

Ron must have been smiling when NINDS ME/CFS project director Vicky Whittemore outlined the broad strokes of the Working Group's strategy to reinvent ME/CFS research. About a year ago on one of her frequent trips to Washington, Linda Tannenbaum, the Executive Director of the Open Medicine Foundation, plopped Ron Davis's plan to end ME/CFS down on Vicky Whittemore's desk.

Whittemore's eyes widened: here was a comprehensive plan featuring some of the top researchers in the country. I wouldn't be surprised if the mere presence of this plan featuring these figures helped convince Whittemore ithat she could successfully push the NIH hard to take ME/CFS seriously.

The plan proposed that a consortium of researchers from across the country participate in a methodical effort to understand and cure ME/CFS. Yesterday, Vicky Whittemore proposed that the NIH fund a consortium of research/treatment sites that would work in unison to solve ME/CFS.

 

Full article…

 
 
 

Online Survey: Fibromyalgia – Coping And Functioning

South Australian news

Saturday 28 May 2016

 

From The University of Adelaide's Heather Trainor:

 

The University of Adelaide
 

Fibromyalgia: Coping and Functioning study

Dear Participant,

You are invited to participate in the research project described below.

What is the project about?

The project aims to explore how ways of coping with pain and other symptoms of fibromyalgia are related to functioning in people with fibromyalgia. It is hoped that results may assist psychologists in targeting treatment for improved functioning, however no causal links will be able to be identified in this study.

Who is undertaking the project?

This project is being conducted by Heather Trainor. This research is part of the degree of Master of Psychology (Health) at The University of Adelaide, under the supervision of Professor Helen Winefield, Miriam Henke, and Dr John Baranoff.

Who is invited to participate?

Participation in this study is open to people who:

  • Have received a diagnosis of Fibromyalgia from a medical practitioner
  • Are Australian residents
  • Are over the age of 18
  • Are proficient in English (no translation services available)

 

Read more…

 
 
 

#MillionsMissing: Elderly UK ME/CFS Sufferer Raises Awareness Of Devastating Effects Of Illness Through Virtual Protest

International news

Friday 27 May 2016

 

From UK newspaper the Wanstead & Woodford Guardian:

 

Martin Arber
Martin Arber is taking part in a virtual demonstration
for a better deal for ME sufferers this week.
 

Elderly ME sufferer from Clayhall to raise awareness of devastating effects of illness through a virtual protest

By Lara Keay, Reporter, covering Wanstead and Woodford. 
May 25, 2016

©Copyright 2001-2015

A 76-YEAR-OLD who has suffered from chronic fatigue syndrome for 30 years is calling on people to take part in a worldwide demonstration to improve awareness of the disease.

Martin Arber, of Cheriton Avenue, Clayhall, was diagnosed with chronic fatigue syndrome (ME) in the late 1980s, after he found himself with constant headaches and lack of energy.

After his diagnosis at former Barking, Havering and Redbridge University Trust (BHRUT) hospital, Oldchurch in Romford, he was referred to a specialist day-care hospital in Hertfordshire.

But when the NHS cut the funding needed for his treatment, Mr Arber was forced to re-mortgage his home and pay for regular visits to the specialist centre himself.

He said: “Medical research in this country has been distorted to say that ME is only in people’s minds.

“It’s not just psychological, it affects your whole body – it’s thrown our lives completely upside down.”

 

Full article…

 
 
 

#MillionsMissing: Sea Of Empty Shoes Left Outside UK's Department Of Health In Global ME Protest

International news

Friday 27 May 2016

 

From UK newspaper the Evening Standard:

 

Shoes
Silent protest: Shoes representing the 'millions missing'
as a result of ME and chronic fatigue syndrome
(Photo: Robert Tanczos)
 

#MillionsMissing: Sea of empty shoes left outside Department of Health in global ME protest

By Tom Marshall
May 26, 2016

A sea of empty shoes filled the pavement in Whitehall today as part of a silent demonstration by sufferers of ME and chronic fatigue syndrome.

The "#MillionsMissing" protest outside the Department of Health was part of an international day of action highlighting the plight of people with the conditions - and calling for more help and greater funding from governments.

Activists remained completely silent, some wearing gags over their mouths, as they protested alongside the pairs of shoes from midday to 2pm.

The tagline and the empty footwear referenced the fact that millions of people are missing from their careers, schools, social lives and families across the globe due to the debilitating symptoms of the disease, the organisers said.

 

Full article…

 
 
 

Allergies Keep Auckland Woman Living In Isolation

International news

Friday 27 May 2016

 

From New Zealand news outlet Stuff.co.nz:

 

Sabrina Paige
Sabrina Paige has multiple chemical sensitivity syndrome
and has been left isolated with limited human interaction.
(Photo: Catrin Owen / Fairfax NZ)
 

Allergies keep Auckland woman living in isolation

By Catrin Owen
May 26, 2016

© 2016 Fairfax New Zealand Limited

Imagine being allergic to almost everything.

Unable to give someone a hug because they're wearing perfume, have to take a shower after a trip to the supermarket and find it hard to find a suitable home.

This is what Auckland resident Sabrina Paige has suffered from for almost 20 years.

Paige has multiple chemical sensitivity syndrome (MCS), a disorder triggered by low level exposure to multiple chemical substances commonly found in the environment.

 

Full article…

 
 
 

South Australian Health And Medical Research Institute (SAHMRI) Calling For Research Participants

South Australian news

Friday 27 May 2016

 

From the South Australian Health and Medical Research Institute (via email):

 

SAHMRI
 

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.

 

Full article…

 
 
 

Why We Shouldn't Call It 'Chronic Fatigue Syndrome'

International news

Thursday 26 May 2016

 

From Stat:

 

Shoes
(Photo: Chip Somodevilla / Getty)
 

Why we shouldn’t call it ‘chronic fatigue syndrome’

By Rivka Solomon
May 24, 2016

It started with a bout of mononucleosis. Two college roommates and I got it at the same time. They felt better after a month. I didn’t. Decades later, I’m still living with bone-penetrating exhaustion and brain fog as thick as pea soup. I spent much of my 30s and 40s tethered to my bed, too weak to function. I’ve had to abandon both my career in international relations and my social life.

My mono had morphed into something more permanent, a neuroimmune disease the World Health Organization calls myalgic encephalomyelitis (ME). It affects between 1 million and 2.5 million Americans and 17 million people worldwide.

It’s a disease that can force you to put your life on hold. According to the Institute of Medicine, it can reduce an individual’s ability to function more than heart failure, multiple sclerosis, or end-stage kidney disease. There’s no generally accepted diagnosis for ME. It can take up to five years to be accurately diagnosed, and up to 90 percent of people with it are never accurately diagnosed. Worse still, the FDA hasn’t given the green light to any treatments for it.

Those of us with ME have long hoped the government would come to our aid. Instead, in 1988 it gave the disease a new name, chronic fatigue syndrome, that stigmatizes people with this condition. And the National Institutes of Health has generally looked the other way. Year after year, the NIH has set aside a paltry $5 million to $7 million of its $30 billion annual budget for ME research. Compare that with the $100 million set aside for research on multiple sclerosis, which affects about 400,000 Americans.

 

Full article…

 
 
 

Be Aware And Beware: Chronic Fatigue Syndrome Is An Equal Opportunity Disease

International news

Thursday 26 May 2016

 

From The Huffington Post:

 

The Huffington Post
 

Be Aware and Beware: Chronic Fatigue Syndrome Is an Equal Opportunity Disease

By Maureen Hanson
Researcher; Geneticist; Professor, Cornell University
May 20, 2016

Chronic Fatigue Syndrome, or CFS, is an innocuous name given to a debilitating disease. Its seriousness is better indicated by the term Myalgic Encephalomyelitis (ME), a label preferred by many of its victims. On May 17-18, the Department of Health and Human Services hosted the biannual public meeting of the Chronic Fatigue Syndrome Advisory Committee by webinar. This was a fitting time for such a meeting, as May is International ME/CFS Awareness Month.

The trigger for CFS/ME is not known. The lack of research on the disease means there is no truly effective and widely available therapy that would allow the more seriously ill victims to lead meaningful lives free of pain and incapacitating fatigue.

The disease often appears to strike at random. It’s impossible for any of us to know how to protect ourselves from the illness.

 

Full article…

 
 
 

PLOS Editors Discussing Authors' Decision To Remove Chronic Fatigue Syndrome Data

International news

Thursday 26 May 2016

 

From Retraction Watch:

 

Retraction Watch
 

PLOS editors discussing authors’ decision to remove chronic fatigue syndrome data

By Alison McCook
May 20th, 2016

After PLOS ONE allowed authors to remove a dataset from a paper on chronic fatigue syndrome, the editors are now “discussing the matter” with the researchers, given the journal’s requirements about data availability.

As Leonid Schneider reported earlier today, the 2015 paper was corrected May 18 to remove an entire dataset; the authors note that they were not allowed to publish anonymized patient data, but can release it to researchers upon request. The journal, however, requires that authors make their data fully available.

Here’s the correction notice:

S1 Dataset was published in error. The error was corrected in the XML and PDF versions of this article on May 9, 2016. Please download this article again to view the correct version.

 

Full article…

 
 
 

17 Texts People With Chronic Illnesses Would Love To Get After Canceling Plans

International news

Thursday 26 May 2016

 

From The Mighty:

 

Text message
 

17 Texts People With Chronic Illnesses Would Love to Get After Canceling Plans

By Melissa McGlensey
February 1, 2016

Nobody likes to have to cancel plans, but for many people who live with chronic illnesses, it’s a regular part of life. Having an unpredictable condition means you can’t always make it out of the house, even when you want to. Some friends get it and will always be happy to reschedule, but unfortunately not everyone understands.

We asked our readers to tell us some texts they’d love to get, instead of silence or frustrated replies, when they have to cancel plans due to illness. If you’re ever unsure how to respond to your friend’s last-minute cancellation, we hope one of these sparks an idea.

 

Full article…

 
 
 

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