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ME/CFS AUSTRALIA (SA) INC

Registered Charity 3104

Email:
sacfs@sacfs.asn.au

Mailing address:

PO Box 322,
Modbury,
South Australia 5092

Phone:
1300 128 339

Office Hours:
Monday - Friday,
10am - 4pm
(phone)

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 various research projects, diets, medications, therapies, news items, 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.

 

Society Seminars for 2019
Saturday 23 March 2019
1:30pm
Speaker:
[to be confirmed]
Topic: Pacing
Venue: Sophia House, 225 Cross Road, Cumberland Park

Saturday 22 June 2019
1:30pm
Speaker: Occupational Therapist [to be confirmed]
Topic: [to be confirmed]
Venue: Sophia House, 225 Cross Road, Cumberland Park

Saturday 7 September 2019
Annual General Meeting
1:30pm
Speaker: [to be confirmed]
Topic: [to be confirmed]
Venue: Sophia House, 225 Cross Road, Cumberland Park

Saturday 23 November 2019
1:30pm
Speaker: Mike Musker from SAHMRI
Topic: [to be confirmed]
Venue: Sophia House, 225 Cross Road, Cumberland Park
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/CFS Primer for Clinical Practioners - 2014 Edition

PDF

ME/CFS Guidelines for GPs
(SA Department of Health)

PDF

ME/CFS Guidelines for psychiatrists

PDF

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

  Note: See here for an overview on the Canadian Consensus Criteria for Fibromyalgia (PDF, 1.70 MB)
 
Australian ME/CFS Societies
AUSTRALIA
ME/CFS Australia Ltd.
Web: mecfs.org.au
Email: mecfsaustralia@gmail.com
AUSTRALIAN CAPITAL TERRITORY
ACT ME/CFS Society, Inc
Address: 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 & FM Association NSW
Web: www.mecfsnsw.org
Facebook: ME/CFS & FM NSW Support Group
Facebook: Chronic Fatigue Syndrome NSW
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
PO Box 322,
Modbury North,
South Australia 5092
Support line: 1300 128 339
Web: www.sacfs.asn.au
Email: sacfs@sacfs.asn.au
VIC/TAS/NT
Emerge Australia
Web: emerge.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

 

These People Face Excruciating Pain Daily, But Medicinal Cannabis Makes Life Bearable

Australian news

Tuesday 12 February 2019

 

From Australia's ABC News:

 

Christian Read
PHOTO: Christian said repeated high doses of painkillers
made his body feel like a "haunted house".
(ABC News: Mary Lloyd)
 

These people face excruciating pain daily, but medicinal cannabis makes life bearable

By national medical reporter Sophie Scott and the Specialist Reporting Team's Mary Lloyd
19 February 2019
© 2019 ABC.

Christian Read has taken everything from period pain pills to heavy opioid-based medication to manage the severe pain he suffers from multiple sclerosis (MS).

...

After years of unrelenting pain, Mr Read approached a local GP about possible treatment with medicinal cannabis and was offered a low dose.

He said "within a week" he realised it was making a difference.

"It's been remarkable how quickly it transformed my day-to-day living," Mr Read said.

For patients like Mr Read, accessing alternatives such as medicinal cannabis had been difficult until the Federal Government relaxed restrictions in March 2018.

New data obtained by the ABC revealed just how popular the controversial treatment had become, with more than 3,100 medicinal cannabis scripts approved by the Therapeutic Goods Administration (TGA) from March to January 2019.

 

Full article…

 
 
 

Metabolomics Study Suggests Chronic Fatigue Syndrome May Be Oxidative Stress/Low Oxygen Disease

International news

Tuesday 19 February 2019

 

From Health Rising:

 

Metabolism
Metabolomics has become a hot research topic in ME/CFS.
 

Metabolomics Study Suggests Chronic Fatigue Syndrome May Be Oxidative Stress/Low Oxygen Disease

"Disturbances in circulation and provision of oxygen to tissues could underlie many symptoms of ME/CFS." – The authors

By Cort Johnson
February 8, 2019
© 2019 ABC.

Metabolomics has quickly become one of the hottest research trends in chronic fatigue syndrome (ME/CFS). The metabolomic work in ME/CFS started with the Australians, picked up speed when Ron Davis and Bob Naviaux took it up, and is now being done all over the place. Hanson, Unutmaz and Lipkin make up the short list of new researchers involved.

With Ian Likpin and the Simmaron Research Foundation producing the first metabolomics study of cerebral spinal fluid (CSF), we should soon learn if the metabolomics profiles found thus far – which Hanson’s study reported have demonstrated an unusual consistency in ME/CFS – extend to the CSF and therefore the brain as well.

The Study

Prospective Biomarkers from Plasma Metabolomics of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Implicate Redox Imbalance in Disease Symptomatology. Arnaud Germain, David Ruppert, Susan M. Levine and Maureen R. Hanson. Metabolites 2018, 8(4), 90; https://doi.org/10.3390/metabo8040090

This study, partially funded by the Solve ME/CFS Initiative (SMCI), demonstrated how hot a topic metabolomics has become. The SMCI did a clever thing when, seeing that ME/CFS samples from prior NIH awards to Dr. Hanson were available, paid Metabolon to analyze them for her.

This study was, with its 832 metabolites surveyed, easily the deepest single look into the metabolomics of ME/CFS ever. Metabolon, the company doing the analysis, broke down the metabolites found into eight super pathways and 83 (!) sub pathways, making its analysis a very fine-tuned one.

No magic bullet was found – no single metabolite is yet able to explain ME/CFS – but the study did point an arrow in a promising direction.

 

Full article…

 
 
 

Study: Impact Of Fatigue In CFS – Call For Research Participants

Australian news

Tuesday 12 February 2019

 

From the University of Tasmania (via email):

 

University of Tasmania
 

Impact of Fatigue in CFS

Call for Research Participants
Aged between 18 and 65 years

We are looking for volunteers with Chronic Fatigue Syndrome (CFS) or healthy individuals without CFS to take part in a study inevstigating fatigue and its impact on everyday functioning.

As a participant, you will be asked to complete an online survey, which will ask you questions about your CFS, your experience with CFS and your everyday functioning. The questionnaire should take between 40 and 70 minutes to complete.

Participation in this study is entirely voluntary.

To volunteer or for further information please click on the link or use your QR scanner to complete the following screening questionnaire:

www.surveymonkey/r/F523WCY

Impact of Fatigue in CFS - Study

Contact: Ms Kate Donnelly (kated@utas.edu.au)
OR Dr Cynthia Honan (cynthia.honana@utas.edu.au)
College of Health & Medicine, University of Tasmania

This study has been approved by the Tasmanian Health and Medical Human Research Ethics Committee.

 

PDF Download flyer (PDF, 174 KB)

 
 
 

Survey: What Should Be Considered In The Design Of A Clinic To Treat Complex Health Conditions?

South Australian news

Tuesday 12 February 2019

 

Please read the letter below from Cathie Powell at Bridges & Pathways and consider completing the online survey. It only takes about 10 minutes and can really help highlight the need for a round the clock, all in one clinic for all those with chronic complex health conditions.

 

Bridges & Pathways
 

What should be considered in the design of a clinic to treat complex health conditions?

By Cathie Powell
Copyright © 2018 Bridges & Pathways.

We have an urgent request for you to respond to this State Health Survey about ‘the need for a one-stop clinic for people with chronic and complex conditions in South Australia’.

This is a unique opportunity for you to have your say on matters that are important to you about the services you require to manage your chronic condition/s.

While this is not the proposed ME/CFS clinic, it would be complementary and your responses will let the State Health Department know what all South Australians with complex chronic conditions need to manage their health.

We are aware that many of you have difficulty completing online surveys due to the severity of your illness, and that you may also require assistance from family members and / or carers to compile the information. With this in mind we are showing the questions below in printed form, so you have time to think about them before you go online to complete the survey.

As you reply, it is important to remember this is a State Clinic. The aim is to address Service gaps and reduce waiting lists that cause unnecessary stress, disability and the need to go to hospital emergency departments.

Some examples for us might be the lack of:
• GPs and GP clinics that provide continuing and appropriate care with both during the day and after hours access.
• Care Managers, Practice Nurses to coordinate the range of services you need.
• Affordable physiotherapy, exercise physiology, dieticians, occupational therapy, psychologists.
• Holistic providers (many of you have advised us, you use these as part of your care)
• Community education programs, Information, phone and other on-line support from peer groups.

For those of you who are house bound and or live in rural areas,
• The need for 24/7 phone support
Telehealth GP appointments both with the doctor and your Case Manager
• Problems you have with physical access, ambulance, wheel chair, lifters for examination tables.
• Multiple Chemical Sensitivity issues

Any other issues related to the cost of your care e.g.
• The cost of medications
• Cost of tests to guide treatments and help with assessments.
• Services to meet Centrelink and National Disability requirements.

When you open the survey online, you will find the following explanation and 6 questions. As this is an opportunity to have your say, we suggest you to think about the questions before you answer. Thank you!

What should be considered in the design of a clinic to treat complex health conditions? Patients who have chronic and complex health conditions often utilise significant health services, not always at their convenience, through hospitals and emergency departments when access to their GP / other services, cannot be gained. SA Health wants to hear from consumers about what they would like to be considered in the design of a One-Stop Clinic for consumers with chronic and complex conditions.

Questions
1. What professions / healthcare workers would you like to see working there (eg: doctors, nurses,
physiotherapist, dietician etc)? (be as specific as you can)
2. What services would you use (eg: physio, wellness and prevention health education, nursing, etc)? (be as specific as you can)
3. What currently makes accessing health services difficult?
4. What would make you go to a ‘one stop clinic’ rather than present to an Emergency Department?
5. What would stop you from going to a ‘one-stop clinic’?
6. Any other comments or suggestions?

Below is the link to the on-line survey about the design of a clinic to treat complex health conditions on behalf of the SA State Health Department. We urgently request you complete it.

https://www.surveymonkey.com/r/CFF2SGZ

Thank you in advance. If you need help please ask your carers to assist you.

Regards Cathie and the SA ME/CFS Fibromyalgia Collaboration Clinic team.
South Australian ME/CFS/FMS Clinical & Research Collaboration
c/- Bridges & Pathways Institute Inc
Office: 08 82704316 or Mobile: 0447 133 682 or AH: 08 8358 6086
Email: bpprojects02@gmail.com

 
 
 

NHMRC ME/CFS Advisory Committee Report To The CEO – Making Submissions

South Australian news

Monday 18 February 2019

 

From the ME/CFS Australia (SA) Inc committee:

 

Questionnaire
 

Daunted by the process for responding to the NHMRC Draft Report?

ME/CFS SA has pulled together some information to assist with your submission process, including what you might say and how to submit.

 

Read more…

 
 
 

Fibromyalgia Research – Healthy Volunteers Wanted

South Australian news

Monday 18 February 2019

 

From Bridges and Pathways:

 

Adelaide University
 
 
Robinson Research Institute

 

Fibromyalgia Research Healthy Volunteers Wanted

Women, who are healthy, but who exercise vigorously at most once per week or not at all, aged 18 to 65 and on no regular medication, wanted as volunteers for innovative Adelaide research investigating MRI markers of brain inflammation in fibromyalgia syndrome. Must not be biologically related to any one with fibromyalgia or chronic fatigue syndrome.

For more information see Participant Information Sheet and for a summary of previous research see the link.

For further information about the fibromyalgia syndrome, please see also the following link.

 

Full article…

 
 
 

Participants Needed For Online Survey

South Australian news

Monday 18 February 2019

 

From The CONVERSATIONS Project (via email):

 

The Conversations Project
 

Consumer Expectations & Experiences of the Health Care System – An International Study

The CONVERSATIONS Project
Originally published January 30, 2017

Do you want your voice to be heard?

Participants are needed for an online survey (about 20 mins). Researchers from University of SA and Flinders University are looking to understand consumer health care needs.

Your support in this study will help us to understand your health care needs, determine how responsive your health system is to your needs, and identify areas where health systems could improve to better serve these needs. In appreciation you will be invited to enter a draw to win one of 10 x AU$50 Visa Cards. You will also have the opportunity to receive a copy of the findings.

The survey can be found at https://www.surveymonkey.com/r/CONVERSATIONS-2016.

For more information go to www.conversations-project.info.

#MECFS #MECFSResearch

 
 
 

ME/CFS Australia (SA) Inc Co-Signs International Open Letter

South Australian news

Monday 18 February 2019

 

ME/CFS Australia (SA) Inc
 

ME/CFS Australia (SA) has signed an open letter to the journal Psychological Medicine asking for the 2013 PACE paper to be retracted.

By Deborah Marlin, Committee Member
Originally published on 30 March 2017

No doubt you will remember the PACE trial, a research study conducted in the UK looking at the effectiveness of GET (graded exercise therapy) and CBT (cognitive behaviour therapy) in the treatment of ME/CFS.

In 2013 the research team published a paper in the journal Psychological Medicine, in which they stated that each of these treatments led to recovery in 22% of patients, compared with only 7% in a comparison group. The two treatments, they concluded, offered patients “the best chance of recovery.”

There has been much criticism of the research methods used in this study from other researchers and from the ME/CFS community. ME/CFS Australia (SA), also, has serious concerns about methodological design flaws in the PACE trial.

 

Read more…

 
 
 

NHMRC ME/CFS Advisory Committee Report To The CEO – Making Submissions

South Australian news

Sunday 17 February 2019

 

From the ME/CFS Australia (SA) Inc committee:

 

Questionnaire
 

Daunted by the process for responding to the NHMRC Draft Report?

ME/CFS SA has pulled together some information to assist with your submission process, including what you might say and how to submit.

 

Read more…

 
 
 

The Deadly Hurt Of Loneliness – It Kills

International news

Sunday 17 February 2019

 

From White House Chronicle:

 

Lonesome pine in Britain
 

The Deadly Hurt of Loneliness — It Kills

By Llewellyn King
For InsideSources
February 12, 2019
Copyright © 2019 · White House Chronicle.

For some Valentine’s Day is a day not of love but of profound, despairing loneliness. The candies, cards and flowers from kind people can sometimes serve to open a void of despair, a black hole of unhappiness for them. They are people made lonely through disease. Some lonely for life.

And loneliness kills. That is the brutal bottom line on several recent studies. One by insurance giant Cigna found widespread loneliness, with nearly half of Americans reporting they feel alone, isolated or left out at least some of the time. Releasing the study, Dr. Douglas Nemecek, the company’s chief medical officer for behavioral health, said, “Loneliness has the same impact on mortality as smoking 15 cigarettes a day, making it even more dangerous than obesity.”

I’m fortunate that I’ve seldom been lonely, and never for long. But I’m privy to some of the worst loneliness on the planet. I write and broadcast about those who suffer from Mylagic Encephalomyelitis (ME), also called Chronic Fatigue Syndrome. It is a disease of the immune system, possibly related to Lyme Disease and Fibromyalgia.

Their disease produces loneliness that those who aren’t lonely can only look upon aghast. We can talk about ME, investigate it, try to understand it. But we can never fully understand its limitless duration.

 

Full article…

 
 
 

Silicone Breast Implants Tied To Fibromyalgia, But More Evidence Needed, Study Says

International news

Sunday 17 February 2019

 

From Fibromyalgia News Today:

 

Silicone breast implants
 

Silicone Breast Implants Tied to Fibromyalgia, But More Evidence Needed, Study Says

By Alejandra Viviescas, PhD
February 13, 2019
Copyright © 2013-2019. All rights reserved.

Fibromyalgia and chronic fatigue syndrome (CFS) are more common in people with silicone breast implants than in those with systemic sclerosis (SSc) and no implants, according to a study.

This suggests that silicone may trigger immune responses that increase the risk of developing either of the conditions. However, researchers noted, more studies are needed to fully interpret this relationship.

The study, “Silicone breast implants and depression, fibromyalgia and chronic fatigue syndrome in a rheumatology clinic population,” was published in Clinical Rheumatology.

It was thought that breast implants did not trigger any immune response because a sturdy membrane separates the silicone from the adjacent tissue.

In recent years, however, some local immune responses were observed around breast implants and a relationship between silicone breast implants and autoimmune syndrome induced by adjuvants (ASIA) — a recently discovered condition in which exposure to a trigger leads to autoimmune responses — was suggested.

 

Full article…

 
 
 

Petition: Fix The Issues With Accessing The Disability Support Pension

Australian news

Sunday 17 February 2019

 

From Jake Bailey on Change.org:

 

Centrelink is broken
 

Fix the issues with accessing the Disability Support Pension

Jake Bailey started this petition to Minister for Veterans' Affairs Hon. Dan Tehan MP and 3 others
1 March 2018

The current process for people suffering from chronic illness and disability to access social services is flawed in Australia. With waiting times exceeding 9 months for people to be assessed for the Disability Support Pension (DSP) it is forcing those living with a disability in some cases to live a lifestyle that puts them below the poverty line and is causing immense emotional hardship.

 

Full article…

 
 
 

NHMRC ME/CFS Advisory Committee Report To The CEO – Making Submissions

South Australian news

Saturday 16 February 2019

 

From the ME/CFS Australia (SA) Inc committee:

 

Questionnaire
 

Daunted by the process for responding to the NHMRC Draft Report?

ME/CFS SA has pulled together some information to assist with your submission process, including what you might say and how to submit.

 

Read more…

 
 
 

Indian American Teen Vidhima Shetty Publishes Book On Chronic Fatigue Syndrome

International news

Saturday 16 February 2019

 

From US news outlet IndiaWest:

 

Vidhima Shetty
Indian American teen Vidhima Shetty, of San Ramon, Calif.,
with her recently published book, "An Adolescent's Guide
to ME/CFS," that sheds light on chronic fatigue syndrome.
(Photo provided)
 

San Ramon Indian American Teen Vidhima Shetty Publishes Book on Chronic Fatigue Syndrome

India-West Staff Reporter
February 15, 2019
© Copyright 2019 India West, 933 MacArthur Blvd San Leandro, CA

An Indian American high school girl from San Ramon, Calif., has published a book discussing chronic fatigue syndrome.

The book, "An Adolescent's Guide to ME/CFS," written by 17-year-old Vidhima Shetty, attempts to shed light on a little-known disease that affects over 24 million people around the world.

Shetty's book provides a clear and concise overview of a disease with no cure, pinpointed cause, or FDA-approved treatment, and dives deep to reveal the struggle of patients that have to cope with one of the world’s biggest medical mysteries, according to the young author.

To help fund research in this field, Shetty is donating all proceeds from her book to the Open Medicine Foundation, which uses advanced scientific research to find a cure for this disease, a news release said.

“I wrote this book because I wanted to educate more people about this life-altering disease,” Shetty said in a statement. “I couldn’t imagine what ME/CFS patients, especially those who are my age, have to go through if they didn’t know much about the disease.”

 

Full article…

 
 
 

'I've Been Bedridden Since January 2018'

International news

Saturday 16 February 2019

 

From Times of Malta:

 

Shoulder
(Photo: Shutterstock)
 

'I've been bedridden since January 2018'

The chronic pain surrounded in stigma

Saturday, February 16, 2019
This article first appeared in Pink magazine
Copyright © 2019 timesofmalta.com.

Trying to be a good parent is a tough job, and to be a good parent with chronic pain is even tougher. Antoinette Sinnas is one mother living like this, and she knows the emotional side of it can cut even deeper wounds. Here, she opens up about losing your life, but still existing… From fibromyalgia and myalgic encephalomyelitis to spinal stenosis, this is what it means to suffer – and survive – such silent but excruciating conditions that are still surrounded in stigma.

I’m no stranger to chronic pain. What I suffer from is spinal stenosis, a condition that narrows the spinal canal, putting pressure on the spinal cord and nerves.

The left side of my body is most affected, and until my recent surgeries, I experienced excruciating pain that originated from my neck, shooting down to my foot. This used to be accompanied by numbness, tingling and a terrible burning sensation. Although my symptoms are gradually decreasing, my leg is perpetually weak, my knee buckles quite often and I feel like I was being skewered and grilled.

Year in, year out, full-blown flare-ups would put me totally out of action. This worsened each year and disrupted my family life, sleep patterns, emotions, stomach, menstrual cycle and made me lax as a wife and mother.

A copious amount of drugs and numerous conservative methods of pain relief couldn’t take it away. I was advised that the risk of surgery at my young age may do the trick, or I could end up in a wheelchair… or worse. The strong painkillers were eating into my body due to their harsh side effects. It was a catch-22; we didn’t know whether to wind the watch or bark at the moon.

Since January 2018, I have been more or less bedridden. Much as I try, the pain is hard to hide from my children. The guilt monster emerges from under the bed and plagues my feeling of being an incompetent mother. I am in no contest, aiming to be a super mum, but I find it heart-breaking that my young daughters are more attuned to my pain and always put my needs before theirs.

 

Full article…

 
 
 

Petition: Remove "Afflicted" Docuseries From Netflix Now

International news

Saturday 16 February 2019

 

From ME Action:

 

Stop #Afflicted!
 

To: Netflix Executives: Ted Sarandos, Lisa Nishimura, Brandon Riegg, and Vernā Myers

Remove "Afflicted" Docuseries from Netflix Now

Campaign created by Benjamin HsuBorger

PETITION NOTE: On September 18th, a group of concerned writers, activists, artists, filmmakers, physicians, and scientists came together to write an open letter to Netflix to request that Afflicted be immediately removed from the service. Sign this petition to endorse the letter. All signatures will be sent to Netflix. Please note that the below is an excerpt. You are encouraged to read the full text of the letter at: https://medium.com/@afflicted/open-letter-to-netflix-regarding-the-afflicted-docuseries-d2b5263c9eb6

----------

We request that “Afflicted” docuseries be immediately removed from the service. We further request that a formal apology be released that includes a statement of Netflix’s future plans for the programming of documentaries, television, comedy specials, and feature films about disability and projects that include talent, key crew, and/or consultants with disabilities.

We express our profound disappointment with the recently released Netflix docuseries “Afflicted.” We are deeply concerned about its unethical treatment of its subjects and its many factual errors and omissions. Its inclusion on your platform—which reaches three hundred million viewers worldwide—will reinforce barriers to appropriate medical care or disability benefits, dampen the support of vital research, and add to the stigma and social isolation of an already profoundly marginalized group of people.

 

Full petition…

 
 
 

NHMRC ME/CFS Advisory Committee Report To The CEO – Making Submissions

South Australian news

Friday 15 February 2019

 

From the ME/CFS Australia (SA) Inc committee:

 

Questionnaire
 

Daunted by the process for responding to the NHMRC Draft Report?

ME/CFS SA has pulled together some information to assist with your submission process, including what you might say and how to submit.

 

Read more…

 
 
 

'I Can't Go Anywhere': Chemical Sensitivities Complicate Canadian Woman's Search For Housing

International news

Friday 15 February 2019

 

From Canadian newspaper the Alliston Herald (via Simcoe.com):

 

Marla Flear
Alliston resident Marla Flear lives between her apartment
and minivan due to a rare condition called Multiple
Chemical Sensitivity (MCS). She has tried many things
to make her apartment more livable, like using fans to
ventilate fresh air into her living room. But she can
only spend about two hours in the building before
her symptoms become unbearable.
(Photo: Brad Pritchard/Metroland)
 

‘I can’t go anywhere’: Chemical sensitivities complicate Alliston woman's search for housing

Marla Flear living between apartment and van to manage symptoms

By Brad Pritchard
Alliston Herald
15 February 2019
© 2019 Simcoe.com.

There have been many nights when Marla Flear has been forced to flee her apartment and sleep in her van, even when it’s -30 C outside.

The 63-year-old Alliston resident doesn't have much choice in the matter. Either she toughs it out in her vehicle, or she gets severely ill and makes another trip to the emergency room.

For the past 25 years she has lived with multiple chemical sensitivity (MCS), a condition that affects about three per cent of Canadians or about one million people across the country.

Things like air fresheners, laundry soap, perfumes/colognes and essential oils make her extremely sick, causing her to vomit, have breathing problems and shake.

While she got the apartment at an affordable housing building in August, she couldn't move in right away due to the odours from the new floor and fresh paint.

While those scents have gotten somewhat better, she’s never been able to stay inside the apartment for more than three hours at a time due to other odours in the building, like air fresheners used by other tenants.

Flear runs fans constantly to circulate fresh air into her unit, and she also uses expensive air filters, but they have limited effect.

 

Full article…

 
 
 

ME/CFS: How Could The Illness Develop?

International news

Friday 15 February 2019

 

From the medical journal Metabolic Brain Disease:

 

Stethoscope puzzle
 

Myalgic encephalomyelitis or chronic fatigue syndrome: how could the illness develop?

By Gerwyn Morris, Michael Maes, Michael Berk, Basant K. Puri
First Online: 13 February 2019
© 2018 Springer Nature Switzerland AG. Part of Springer Nature.

Abstract

A model of the development and progression of chronic fatigue syndrome (myalgic encephalomyelitis), the aetiology of which is currently unknown, is put forward, starting with a consideration of the post-infection role of damage-associated molecular patterns and the development of chronic inflammatory, oxidative and nitrosative stress in genetically predisposed individuals.

The consequences are detailed, including the role of increased intestinal permeability and the translocation of commensal antigens into the circulation, and the development of dysautonomia, neuroinflammation, and neurocognitive and neuroimaging abnormalities.

Increasing levels of such stress and the switch to immune and metabolic downregulation are detailed next in relation to the advent of hypernitrosylation, impaired mitochondrial performance, immune suppression, cellular hibernation, endotoxin tolerance and sirtuin 1 activation.

The role of chronic stress and the development of endotoxin tolerance via indoleamine 2,3-dioxygenase upregulation and the characteristics of neutrophils, monocytes, macrophages and T cells, including regulatory T cells, in endotoxin tolerance are detailed next.

Finally, it is shown how the immune and metabolic abnormalities of chronic fatigue syndrome can be explained by endotoxin tolerance, thus completing the model.

Keywords

Chronic fatigue syndrome
Myalgic encephalomyelitis
Endotoxin tolerance
Inflammation
Mitochondria
Oxidative and nitrosative stress

 

Full article…

 
 
 

Chronic Illness Manifesto Survey

International news

Friday 15 February 2019

 

From the UK's Chronic Illness Inclusion Project:

 

Chronic Illness Inclusion Project
 

Chronic Illness manifesto survey

About this survey

This is our first major survey capturing the experiences and views of people living with chronic illness. This is an opportunity to stand up (or lie down) and be counted and have your voice heard. Your responses will inform our chronic illness manifesto for change.

This survey is open to anyone with a long-term health condition or impairment that restricts their day to day life.

The survey takes about 20 minutes to complete. You can complete it in stages, coming back to where you left off. Please take breaks when you need to. We appreciate the effort surveys like this can take, and your answers are incredibly valuable. The more responses we get, the stronger our case for change.

The Chronic Illness Inclusion Project is a research project led by people with chronic illness and supported by the Centre for Welfare Reform. It is part of the DRILL programme of disability research and is funded by Big Lottery Fund. Find out more about DRILL here.

 

Begin the survey here…

 
 
 

NHMRC ME/CFS Advisory Committee Report To The CEO – Making Submissions

South Australian news

Thursday 14 February 2019

 

From the ME/CFS Australia (SA) Inc committee:

 

Questionnaire
 

Daunted by the process for responding to the NHMRC Draft Report?

ME/CFS SA has pulled together some information to assist with your submission process, including what you might say and how to submit.

 

Read more…

 
 
 

Fibromyalgia: Many May Receive Wrong Diagnosis

International news

Thursday 14 February 2019

 

From Medical News Today:

 

Doctor and patient
A new study indicates that there may be many
incorrect and missed diagnoses of fibromyalgia.
 

Fibromyalgia: Many may receive wrong diagnosis

By Maria Cohut
Wednesday 6 February 2019
Fact checked by Isabel Godfrey
Healthline Media UK Ltd, Brighton, UK. © 2004-2019 All rights reserved.

Fibromyalgia is a chronic condition that affects millions of people in the United States. However, the authors of a new study now warn that a significant number of people who have received a diagnosis may not, in reality, have this condition.

People with fibromyalgia experience pain all over the body, as well as fatigue, headaches, and increased sensitivity to painful stimuli.

Other symptoms may include depression and anxiety, poor sleep, and problems with memory or thinking.

According to the Centers for Disease Control and Prevention (CDC), fibromyalgia affects approximately 4 million adults in the U.S., which equates to about 2 percent of the adult population.

To diagnose this condition, a physician is likely to ask about a person's medical history. They may also perform a physical exam and request X-rays and blood tests.

Although fibromyalgia is prevalent, new research has found that doctors have misdiagnosed many people as having this condition. Dr. Frederick Wolfe from the National Data Bank for Rheumatic Diseases in Wichita, KS, led the study.

The findings, which appeared today in the journal Arthritis Care & Research, indicate that using textbook criteria to diagnose someone can lead to a different prognosis than using a clinician's in-person assessment.

 

Full article…

 
 
 

NHMRC ME/CFS Advisory Committee Report To The CEO – Making Submissions

South Australian news

Wednesday 13 February 2019

 

From the ME/CFS Australia (SA) Inc committee:

 

Questionnaire
 

Daunted by the process for responding to the NHMRC Draft Report?

ME/CFS SA has pulled together some information to assist with your submission process, including what you might say and how to submit.

 

Read more…

 
 
 

Lyme Disease Can Be Diagnosed By 'Bull's Eye' Rash Alone

International news

Wednesday 13 February 2019

 

From BBC Health:

 

Bull's eye rash
The rash is raised around the edges.
(Photo: CDC)
 

Lyme disease can be diagnosed by 'bull's eye' rash alone

12 February 2019
Copyright © 2019 BBC.

Lyme disease can be diagnosed by the rash alone, new advice for the NHS says.

People with the "bull's eye" circular rash do not need a blood test and should be treated immediately to avoid complications, the National Institute for Health and Care Excellence says.

Waiting for lab results is unnecessary and can cause delays in patients being prescribed the antibiotics they need.

Lyme disease is spread by tick bites and can be debilitating.

A blood tests can check for it but may not give a positive result until eight weeks after the patient is bitten.

 

Full article…

 
 
 

The Invisible Burden Of Chronic Fatigue In The Community: A Narrative Review

International news

Wednesday 13 February 2019

 

From Current Rheumatology Reports:

 

Books
 

The Invisible Burden of Chronic Fatigue in the Community: a Narrative Review

By Scott J. Fatt, Erin Cvejic, Andrew R. Lloyd, Ute Vollmer-Conna, Jessica Elise Beilharz
Chronic Pain (R Staud, Section Editor)
Curr Rheumatol Rep (2019) 21: 5. https://doi.org/10.1007/s11926-019-0804-2
First Online: 11 February 2019
© Springer Science+Business Media, LLC, part of Springer Nature 2019.

Abstract

Purpose of Review

Unexplained fatigue is commonly reported in the general population, with varying severity. Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) sits at the extreme of the fatigue continuum, yet more individuals experience unexplained prolonged fatigue (1–6-month duration) or chronic fatigue (> 6 months) that, although debilitating, does not fulfil ME/CFS criteria. This review examines the empirical literature comparing symptoms for those with prolonged fatigue, chronic fatigue and ME/CFS.

Recent Findings

Substantial overlap of self-reported psychological, physical and functional impairments exists between chronic fatigue and ME/CFS. The conversion rate from prolonged or chronic fatigue to ME/CFS is not understood. Current research has failed to uncover factors accounting for differences in fatigue trajectories, nor incorporate comprehensive, longitudinal assessments extending beyond self-reported symptoms.

Summary

Distinguishing factors between prolonged fatigue, chronic fatigue and ME/CFS remain poorly understood, highlighting a need for longitudinal studies integrating biopsychosocial approaches to inform early management and targeted rehabilitation strategies.

Keywords

Myalgic encephalomyelitis,
Chronic fatigue syndrome,
Fatigue,
Autonomic Function

 

Full article…

 
 
 

South Australian Fibromyalgia Research – Healthy Volunteers Wanted

South Australian news

Wednesday 13 February 2019

 

From Bridges & Pathways:

 

MRI scan
 

Fibromyalgia Research Healthy Volunteers Wanted

By Cathie Powell
Copyright © 2018 Bridges & Pathways.

Women, who are healthy, but who exercise vigorously at most once per week or not at all, aged 18 to 65 and on no regular medication, wanted as volunteers for innovative Adelaide research investigating MRI markers of brain inflammation in fibromyalgia syndrome. Must not be biologically related to any one with fibromyalgia or chronic fatigue syndrome.

For more information see Participant Information Sheet and for a summary of previous research see the link.

 

Full article…

 
 
 

Society Constitution

South Australian news

Wednesday 13 February 2019

 

ME/CFS Society (SA) IncThe society's constitution has been updated:

 

PDF

ME/CFS Australia (SA) Inc Constitution (PDF, 283KB)

 
 
 

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