UK Woman With Fibromyalgia 'Unable To Leave House' After Hot Tub Theft |
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International news
Wednesday 15 August 2018
From UK newspaper the St Helens Star:
The hot tub was taken from Kate's back garden.
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Woman with fibromyalgia 'unable to leave house' after hot tub theft
A 24-YEAR-OLD woman with fibromyalgia says she is "unable to leave the house" after thieves stole a hot tub used to ease her pain.
By Kelsey Maxwell
10th August 2018
©Copyright 2001-2018.
Kate Wellens from Grange Park was diagnosed with the condition aged 17, which causes pain all over the body as well as increased sensitivity, fatigue and muscle stiffness.
After saving for several months, Kate finally bought a hot tub for her home meaning she could relax her muscles and not have to attend expensive hydrotherapy.
However, less than six weeks after buying the tub, she was "devastated" to find thieves made off with it in the middle of the night on Sunday, August 5.
She is hoping the thieves, who she believes must know the area well, will return the tub once they know that it "is a medical treatment not a luxury."
Kate said: "I use the hot tub daily to help with my fibromyalgia pain as this is the only way I can function."
Full article… |
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South Australian Fibromyalgia Research – Healthy Volunteers Wanted |
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South Australian news
Wednesday 15 August 2018
From Bridges & Pathways:
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…
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Society Constitution |
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South Australian news
Wednesday 15 August 2018
 The society's constitution has been updated:
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New US Laws Turn Pain Patients Toward More Lethal Substitutes |
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International news
Tuesday 14 August 2018
From US newspaper Independent Tribune:
New laws to fight addiction are having unintended
consequences, forcing chronic pain patients
to
more deadly options.
(From Carolina Journal News Service)
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New laws turn pain patients toward more lethal substitutes
By Julie Havlak/Carolina Journal News Service
August 13, 2018
Independenttribune.com, Concord, NC ©2018 BH Media Group, Inc.
RALEIGH — For Cathy, opioids are part of the blend of medications that keep her functioning. After she caught polio as a baby — just three years before the vaccine was invented — she suffered from fibromyalgia, she developed arthritis as a teenager, and her nerves started to die as a 40-year-old.
“I am a chronic pain patient, I have been on pain pills for 30 years. It has allowed me to raise a child, be a good wife, and to retire gracefully with money of my own,” said Cathy, who didn’t want her last name used. “Without them, I would be a ward of the state. … I have never, never upped my dosage or abused the drug.”
A growing number of chronic pain patients say they are caught in the crosshairs of the war on drugs, where legislators’ good intentions to limit overprescribing have made the lives of actual chronic pain patients hellish.
“It’s insane,” Cathy said. “We are an infinitely easy target in the war on drugs.”
Chronic pain patients are the anomalies in a system designed to target a nationwide epidemic. North Carolina exempted chronic pain patients from its chokehold on opioid prescriptions, but with legal crackdowns and controversy over using opioids to treat long-term chronic pain, more doctors are reluctant to prescribe them.
Full article… |
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Lack Of Funding Forces UK Charity To Cut Services For Young People With Debilitating Disease |
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International news
Tuesday 14 August 2018
From UK newspaper the Newcastle Chronicle:
Laura Northmore, 19 from Gateshead who suffers with ME.
(Image: Newcastle Chronicle)
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Lack of funding forces charity to cut services for young people with debilitating disease
ME North East says it has been unable to find the cash needed to help youngsters who have the disease, also known as chronic fatigue syndrome
By Sonia Sharma
12 August 2018
© 2018 Trinity Mirror North East
A charity has been forced to cut its services for hundreds of young people - many of whom are housebound.
ME North East says it has been unable to find the cash it needs and is desperately seeking new funding so it can continue to offer support to help youngsters stay in education, fight isolation and manage their condition.
ME (Myalgic Encephalomyelitis), also known as chronic fatigue syndrome, is a debilitating disease which can leave sufferers unable to perform simple tasks or even communicate with their loved ones. There is no known cure.
The charity supports people with the condition as well as their families, covering a vast stretch from the Scottish Borders to North Yorkshire and Cumbria.
Among those who received support was Laura Northmore, 19, of Bensham, Gateshead, who has had ME since she was 11 years old.
Full article… |
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Lady Gaga Talks Battling Fibromyalgia During A Star Is Born |
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International news
Tuesday 14 August 2018
From Entertainment Weekly:
Lady Gaga talks battling fibromyalgia during A Star Is Born
By Tim Stack
August 11, 2018
© 2018 Meredith Corporation. All Rights Reserved.
Lady Gaga is nothing if not a fighter.
The pop star documented her painful, difficult struggles with chronic pain and fibromyalgia in her Netflix documentary Gaga: Five Foot Two. The film showed Gaga dealing with extreme, almost-paralyzing pain. The singer has since posted on social media about the condition.
EW asked Gaga if it affected her while shooting her leading role opposite Bradley Cooper in A Star Is Born.
Says the singer/actress, “It was up and down, but you know what? I have an incredible director and friend and lead actor, and I had him by my side the whole time and we did it.”
A Star Is Born hits theaters on Oct. 5.
Full article… |
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Fibromyalgia Research – Healthy Volunteers Wanted |
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South Australian news
Monday 13 August 2018
From Bridges and Pathways:
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… |
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Participants Needed For Online Survey |
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South Australian news
Monday 13 August 2018
From The CONVERSATIONS Project (via email):
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 |
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ME/CFS Australia (SA) Inc Co-Signs International Open Letter |
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South Australian news
Monday 13 August 2018
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… |
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Petition: Fix The Issues With Accessing The Disability Support Pension |
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Australian news
Sunday 12 August 2018
From Jake Bailey on Change.org:
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… |
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Petition: Stop The Closure Of Welfare Rights Centre SA |
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South Australian news
Sunday 12 August 2018
From Change.org:
STOP THE CLOSURE OF WELFARE RIGHTS CENTRE SA
By Stephany Del Canto
1 June 2017
© 2017, Change.org, Inc.
Certified B Corporation
AWARD WINNING SPECIALIST WELFARE RIGHTS CENTRE SA FACING CLOSURE
Welfare Rights Centre SA is a community legal centre which specialises in social security law. The Centre has 30 years of experience and expertise in social security law and Centrelink administration. We provide free legal advice and representation to clients facing Centrelink problems. Our clients are the most vulnerable in our community; including terminally ill clients, systematically abused and significantly mentally ill clients attempting to obtain the Disability Support Payment, young people escaping horrifically violent homes to obtain a payment to afford food and people leaving domestic violence relationships to get payments to start a new life.
...
In the 2015-2016 financial year, we provided legal advice to well over 2,000 clients facing Centrelink issues and saw over 500 clients through the Housing Legal Clinic.
Late on Friday afternoon, 26 May, we received the surprising and shocking news that the Welfare Rights Centre SA was unsuccessful in retaining their funding beyond the 30 June 2017.
This level of expertise does not exist anywhere else in South Australia. All this experience will be lost if the closure goes ahead. The inability to get timely access to secure income support is often at the root of other legal needs, including housing, credit and debt and family violence. We have assisted domestic violence victims, vulnerable minors, people with significant disabilities and those facing homelessness.
Full article… |
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Entertainment Book |
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South Australian news
Saturday 11 August 2018
Dear Friends,
Not sure what you can do to support your ME/CFS community?
Buying an Entertainment Book for yourself or as a gift for others is one way of supporting your Society.
Even if you are unable to dine out, you can save money at selected supermarkets and other retailers. The two for one vouchers come in handy with visitors and children, when using entertainment venues or activity centres.
Let family and friends know they can purchase their new Entertainment Books from us. Not just books covering South Australia; books are available for other states in Australia.
Where to buy:
- At our next Seminar
- Online at https://www.entertainmentbook.com.au/orderbooks/167c042
- For hard copy books (as opposed to digital copies), pay a bit extra for delivery or collect from Parkside – Ph: 1300 128 339 – or email pdelfante@sacfs.asn.au to make arrangements.
"The Entertainment Book is great value for such a low price. There are a lot of savings I get back instantly. It more than outweighs the original price. There is something for everyone, casual, fine dining, adventure and family...." - Susan L
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Society AGM |
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South Australian news
Saturday 11 August 2018
Please join us today, Saturday, 11 August, for our Annual General Meeting.
Details:
Annual General Meeting
Saturday 11 August 2018
1:30 pm
Location: South Australian Council of Social Service (SACOSS) building, 47 King William Rd, Unley. [See below]
Speaker: Dr Mona Kaur. Dr Kaur works as a GP with Dr Roger Spizzo at the Centre For Health & Wellbeing in Norwood with a special interest in gut health. Dr Kaur is a Telehealth GP with GP2U.
Topic: Gut Health & ME/CFS.
New (Temporary) Venue For The AGM
The AGM will be held at the South Australian Council of Social Service (SACOSS) building, 47 King William Rd, Unley.
We are having this seminar at SACOSS due to the usual venue Sophia being re-carpeted in early July.
Reminders
Many people with ME/CFS are extremely chemically sensitive, so we ask attendees to refrain from wearing aftershaves, perfumes etc, and please refrain from smoking at our meetings. We will make every effort to clear the venue of fragrances and chemicals. There have been MCS issues there in the past and we have been in contact with Sofia's management to find ways to minimise or remove any potential issues for future meetings. We will continue to make every effort we can to minimise these problems at our meetings.
Please note that this program is subject to change.
Details of all seminars for 2018…
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It Seems Impossible That People Don't Believe Having ME Is A Serious Illness |
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International news
Saturday 11 August 2018
From the UK edition of the Huffington Post:
Skye Wheeler
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It Seems Impossible That People Don't Believe Having ME Is A Serious Illness
I’m just a person with a body that won’t function
By Skye Wheeler, M.E. sufferer
August 8, 2018
© 2018 Oath Inc. All rights reserved.
Myalgic Encephalomyelitis, chronic fatigue syndrome, CFS/ME. These are just a few terms to describe one of the most destructive illnesses known to man. Manifesting as unrelenting fatigue and profound pain, ME/CFS is destroying the lives of 250,000 people in the UK. One in four are so severely affected that they are rendered house-bound or bed-bound with some even reliant on tube feeding. Sufferers are often confined to their beds, unable to walk and need help even to shower.
ME is a long-term illness with a wide range of symptoms. The most common symptom is extreme tiredness. But this definition doesn’t even touch the surface. My life has been ripped to pieces and then burnt down into nothing. My life was planned out. My life had so much potential but now as I write this, I haven’t moved for hours, I am in extreme pain all over my body, I lay in the dark because of light sensitivity and wait for someone to return home to take me to the toilet. My bed is my world. My bed is my support. It has seen me through endless days of torturous pain, fatigue and inner turmoil.
“But isn’t everyone tired?” This fatigue is like no other. There is nothing I would give more than to transfer my symptoms to another person for just an hour. The fatigue we feel is like a thousand bricks being tied to your body. You can’t muster up the energy to put one foot in front of the other. You can’t get dressed without a blackness descending over your eyes. You can’t carry a conversation let alone even speak. The only thing you can do is lie and exist.
Painful muscles, nerves, joints and bones. “Oh but everyone gets a bit stiff and achy”. We experience searing pain that feels like a hot knife being cut through your skin, a sledge hammer crashing down on your legs, smashing all bones to pieces. And guess what the best part is... it never goes away. Every second, minutes and days. I take over 25 different medicines a day. It’s funny because it’s almost become so normal to me now, wharfing down more than a handful of tablets. When I actually stop and realise what I’m doing it seems insane, at the age of 20, to have the body of a 90-year-old. How have I got to this point?!
Full article… |
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Society AGM Reminder |
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South Australian news
Friday 10 August 2018
Please join us this Saturday, 11 August, for our Annual General Meeting.
Details:
Annual General Meeting
Saturday 11 August 2018
1:30 pm
Location: South Australian Council of Social Service (SACOSS) building, 47 King William Rd, Unley. [See below]
Speaker: Dr Mona Kaur. Dr Kaur works as a GP with Dr Roger Spizzo at the Centre For Health & Wellbeing in Norwood with a special interest in gut health. Dr Kaur is a Telehealth GP with GP2U.
Topic: Gut Health & ME/CFS.
New (Temporary) Venue For The AGM
The AGM will be held at the South Australian Council of Social Service (SACOSS) building, 47 King William Rd, Unley.
We are having this seminar at SACOSS due to the usual venue Sophia being re-carpeted in early July.
Reminders
Many people with ME/CFS are extremely chemically sensitive, so we ask attendees to refrain from wearing aftershaves, perfumes etc, and please refrain from smoking at our meetings. We will make every effort to clear the venue of fragrances and chemicals. There have been MCS issues there in the past and we have been in contact with Sofia's management to find ways to minimise or remove any potential issues for future meetings. We will continue to make every effort we can to minimise these problems at our meetings.
Please note that this program is subject to change.
Details of all seminars for 2018…
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Millions Suffer From An Invisible Disease: My ME/CFS Story |
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International news
Friday 10 August 2018
From CNN:
Ryan Prior visited 16 doctors with various
specialties to identify his illness.
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Millions suffer from an invisible disease: My ME/CFS story
By Ryan Prior, CNN
August 8, 2018
© 2018 Cable News Network. Turner Broadcasting System, Inc. All Rights Reserved.
Editor's Note: Ryan Prior is a cross-platform associate producer at CNN. He has suffered from chronic fatigue syndrome for 11 years. The views expressed in this article are solely his.
Atlanta (CNN) – Every morning, I shave, brush my teeth, and swallow a dozen pills. I look in the mirror and thank God I can even walk out the door. Since 2007, I've lived with an incurable disease known as chronic fatigue syndrome. Internationally, doctors call it myalgic encephalomyelitis, or ME/CFS. The tongue-twister means "painful inflammation of the brain and nervous system."
The grassroots ME Action Network recognizes August 8 as "Severe ME Awareness Day." You may be surprised how many people in your life are, like me, struggling in silence with an invisible burden. The Centers for Disease Control and Prevention estimates up to 2.5 million Americans are suffering from ME/CFS, with many cases undiagnosed.
I'm even more grateful for the life I have, knowing how this disease could have taken me down a darker road. So today, I lend my voice to those who suffer from one of the most debilitating diseases many people have never heard of.
Full article… |
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Lifting The Fog On Fibromyalgia |
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International news
Friday 10 August 2018
From New Zealand's Stuff:
Lifting the fog on fibromyalgia
By Carly Gooch
August 9, 2018
© 2018 Stuff Limited
Every morning before Ben Harris throws the bed covers off his aching body, his angels and demons go into battle.
"Just give up."
"I'm not giving up."
The angel always wins.
Harris's fibromyalgia gives him no reprieve from pain, whether it's a two or a 10 on the pain scale.
But he pushes through it with his "sheer pigheadedness".
"I can either be exhausted and in pain laying in bed or I can live my life. So I'll live my life."
Harris knew there was something wrong when his legs started to ache from standing or walking. Then, excruciating pain in his knees forced him to a doctor.
He said his specialist said there was "good news and bad news".
"The good news is we know what's wrong. Bad news is there's nothing we can do about it."
There's no known cure for fibromyalgia and no foolproof medication.
Full article… |
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Society AGM Reminder |
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South Australian news
Thursday 9 August 2018
Please join us this Saturday, 11 August, for our Annual General Meeting.
Details:
Annual General Meeting
Saturday 11 August 2018
1:30 pm
Location: South Australian Council of Social Service (SACOSS) building, 47 King William Rd, Unley. [See below]
Speaker: Dr Mona Kaur. Dr Kaur works as a GP with Dr Roger Spizzo at the Centre For Health & Wellbeing in Norwood with a special interest in gut health. Dr Kaur is a Telehealth GP with GP2U.
Topic: Gut Health & ME/CFS.
New (Temporary) Venue For The AGM
The AGM will be held at the South Australian Council of Social Service (SACOSS) building, 47 King William Rd, Unley.
We are having this seminar at SACOSS due to the usual venue Sophia being re-carpeted in early July.
Reminders
Many people with ME/CFS are extremely chemically sensitive, so we ask attendees to refrain from wearing aftershaves, perfumes etc, and please refrain from smoking at our meetings. We will make every effort to clear the venue of fragrances and chemicals. There have been MCS issues there in the past and we have been in contact with Sofia's management to find ways to minimise or remove any potential issues for future meetings. We will continue to make every effort we can to minimise these problems at our meetings.
Please note that this program is subject to change.
Details of all seminars for 2018…
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New Hope For Sufferers Of ME |
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International news
Thursday 9 August 2018
From UK newspaper The Northern Echo:
BATTLE: Actor Michael Crawford, pictured at the
Apollo Theatre in London in March 2016, has
spoken
publicly about his battle with ME.
(Picture: MATT CROSSICK/PA)
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New hope for sufferers of ME
By Zak Uddin
7th August 2018
© Copyright 2001-2018
RECENTLY a 21-year-old woman became only the second person in the UK to have a diagnosis of ME recorded as the cause of death. Family describe Merryn Crofts from Rochdale, who died in May 2017, as a “live wire” until she contracted the illness at 15, going from a bubbly young girl to a wheelchair in six months, and confined to her home within a year.
...
Researchers in America have identified that people with ME may not metabolise nutrients as effectively as those without ME, and this may be a cause of or contribute to their symptoms.
A recently developed blood test was shown to be 84 per cent accurate when 50 patients with ME were compared with control individuals without the disease.
Many people report a degree of relief once they have a diagnosis, as it allows them to better understand their symptoms.
Full article… |
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More In The News… |
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