Mailing address:
PO Box 322,
Modbury,
South Australia 5092
Phone:
1300 128 339
Office Hours:
Monday - Friday,
10am - 4pm
(phone)
ME/CFS South Australia 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 South Australia 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
ME/CFS South Australia Inc wishes to thank Eco Pest Control for its support of the Society.
Society Seminars for 2019
Saturday 23 March 2019 1:30pm Speaker: Mark Van Ness (via YouTube) Topic: Pacing Venue: SACOSS, 47 King William Rd, Unley
Saturday 22 June 2019
1:30pm Speaker: Occupational Therapist Andrea Parker Topic: From Clinician to Client: An Occupational Therapist's Journey With ME/CFS 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 (SA Health & Medical Research Institute) Topic: [to be confirmed] Venue: Sophia House, 225 Cross Road, Cumberland Park
Our small MDP team started this project more than a few years ago to increase funding and visibility as well as to advocate for more support for desperately needed excellent quality research into ME/CFS. The MDP team and our collective community raised money directly by crowdfunding to help the Columbia University CII world class research team with their projects into this disease and help raise more awareness of the desperate need for funding. These projects are going strong and we’re looking forward to the possible breakthroughs in ME/CFS diagnosis and treatment that can come from them.
It is a certainty that the MDP initiative and the global community driven efforts in support of it has been crucial to the CII’s success in forming the Center for Solutions for ME/CFS. The funds and visible support accumulated helped to springboard their work and provided more of a foundation to their research - so that they were ultimately able to be competitive and successful in obtaining federal funding.
Thanks to the National Institutes of Health funding that the CII has now received, they were able to finally launch their ambitious Center for Solutions for ME/CFS and will be able to sink their teeth into more work. Our community succeeded! Now it’s time for our MDP team of patient volunteers to pass the metaphorical torch over to CII.
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.
After a successful 2017 Working Group meeting at Stanford involving dozens of top researchers, Ron Davis turned to Lucinda Bateman, and said: now you have to do the same thing with doctors.
She did. With Mary Dimmock’s help, Dr. Bateman produced the first ever ME/CFS Clinicians’ Coalition in 2018 and they are about to do it again – and what better place to do it than at the Bateman Horne Center (BHC) – the doctor and patient education center for ME/CFS.
The BHC likes to talk about filling the “landscape of unmet needs in ME/CFS” – a Grand Canyon-sized hole which involves doctor education. The CDC has estimated that up to 85% of people with chronic fatigue syndrome (ME/CFS) remain undiagnosed. That’s a lot of sick people going to doctor’s offices, getting bad advice and getting worse.
It’s also a huge untapped population of people who could contribute to ME/CFS in myriad ways. When I think of them, I think of Mary Dimmock. A former pharmaceutical executive with a son with a severe case of ME/CFS, she’s authored a book on ME/CFS, co-authored a paper on the disease burden in ME/CFS, and has been a driving force in many ME/CFS initiatives over the past five years – including the Clinicians’ Coalition.
I think of Linda Tanenbaum. Linda had zero experience running a research foundation but she had a daughter with ME/CFS and a burning commitment to help out. Just three years later, her foundation – the Open Medicine Foundation – is helping to fund millions of dollars of ME/CFS research a year.
When I think of the many undiagnosed people out there, I think of the Mary Dimmocks and Linda Tanenbaums out there – the many talented people who could and would put their skills to work if only they had the opportunity. I think of the Maureen Hansons and the Paul Gyres – researchers with family members with ME/CFS – who are now participating in our work.
The first step in their path to making a difference in ME/CFS took place in a doctor’s office and a diagnosis of ME/CFS.
The media has upped the ante on a vicious and abusive war on chronically ill people. Doctors involved in the controversial PACE trial have lashed out, claiming they can’t continue their work because of ‘abuse’ and ‘trolling’ from online activists. Yet, PACE findings left thousands of people in the UK who live with Myalgic encephalomyelitis, commonly referred to as ME, without access to effective treatment. What the establishment media failed to report, is that the findings of the PACE trial are flawed, at best.
“Damaging and ineffective”
On March 13, Reutersreported that Professor Michael Sharpe – one of the PACE researchers – claimed he was the victim of “toxic” online abuse. It also reported that other medical professionals, including Professor Simon Wessely, and Per Fink, could no longer continue their work or research into ME. The report claimed they’d been “hounded by complaints and protests from CFS [chronic fatigue syndrome]/ME activists”.
Both the Times and the Mail picked up on Sharpe’s accusations. On 18 March, Sharpe continued to make similar allegations on BBC Radio 4‘s Today show. And by March 19, Dr Mark Porter again reiterated these claims in the Times.
A lot of things have been written recently about patients living with Myalgic Encephalomyelitis (M.E.), often erroneously known as Chronic Fatigue Syndrome. Last week, Reuters published a long-form piece focused on psychiatrists working in the field, who claimed online activists were silencing their work.
Reuters quotes Professor Michael Sharpe, one of the authors of the controversial PACE trial, which was this year debated in Parliament, and is responsible for the current NICE guidelines that recommend Cognitive Behavioural Therapy (CBT) and Graded Exercise Therapy (GET) to patients.
“It’s just too toxic [a field],” he says, and Reuters adds their own context to the conversation, writing: ‘For many scientists, [this is] a new normal: From climate change to vaccines, activism and science are fighting it out online.’
As an M.E. patient and campaigner, the only things I felt reading those words were sadness and frustration. In my former life, before sickness struck, I trained and worked as a journalist, and the lack of research involved in framing severely ill patients as anti-science makes my heart ache; both for my former profession, and for the millions of patients given no right of reply.
The U.S. Food and Drug Administration today posted a warning letter to Nutra Pharma Corp. for illegally marketing unapproved products labeled as homeopathic with claims about their ability to treat addiction and chronic pain, including pain associated with cancer, diabetes, shingles, fibromyalgia and other serious conditions.
“One of our most important obligations is to protect consumers from those who would prey on them with bogus claims and fraudulent products. We’ve dedicated new resources to our enforcement work and I consider these activities the cornerstone of our consumer protection mission and one of our most significant institutional obligations. We’re especially focused on those who would exploit Americans harmed by the opioid crisis with the false promise of products that can treat pain or addiction, but that offer no such benefit,” said FDA Commissioner Scott Gottlieb, M.D. “Today, we posted a warning letter to a company preying on patients who may be seeking alternative treatments for chronic pain, cancers, arthritis and autoimmune and neurological disorders. Health fraud scams like these are inexcusable. These patients deserve proven treatments not false promises that can deter them from seeking otherwise effective care, and that can also contain ingredients or contaminations that can threaten their health. We have great concern for the millions of Americans who live with chronic pain or cancer, and for whom traditional treatment options have been exhausted, as well as those battling opioid addiction. They deserve new advances in care that can address pain without the risk of addiction, not the deception of bogus products that offer no proven benefit. We’ll continue our efforts to protect consumers from such false claims, while also working to advance the development of new treatment options, including non-addictive products for pain management and innovative products for the treatment of opioid use disorder.”
The FDA issued a warning letter to Nutra Pharma for their products: “Nyloxin Oral Spray,” “Nyloxin Topical Gel,” “Nyloxin Topical Roll-On,” “Nyloxin Topical Roll-On ES,” “Nyloxin Professional Size Pump Topical Gel” and “Regular Strength Sample Pack.” These products also may confuse consumers because its name is similar to FDA-approved drugs.
Examples of claims made include:
“Nyloxin . . . treats conditions that cause chronic pain.”
“[C]obra venom saw its primary use in the treatment of cancer and arthritis. Reportedly the venom was used to treat liver cancer, lung cancer, esophageal cancer, skin cancer, and leukemia.”
“Today, cobra venom is being studied for treating various forms of pain, cancers, autoimmune and neurological disorders.”
“Researchers in China are examining the possibility that cobra venom can be used to treat drug addiction.”
“Treatment of the Cobrotoxin in 90 cases with heroin dependence.”
Health fraud scams like these can pose serious health risks. These products have not been demonstrated to be safe or effective and may keep some patients from seeking appropriate, FDA-approved therapies. Selling these unapproved products with claims that they can treat chronic pain is a violation of the Federal Food, Drug, and Cosmetic Act.
In addition to supporting the development of alternatives to opioid analgesics for chronic pain, reducing the number of Americans who are addicted to opioids and cutting the rate of new addiction is one of the Administration’s highest priorities. This work includes promoting more widespread innovation and access to medication-assisted treatment (MAT) for the more than 2 million of Americans with an opioid use disorder (OUD). The FDA is taking steps to make safe and effective MAT available to those who suffer from OUD and to reduce the stigma that is sometimes associated with use of these therapies. Using products with unsubstantiated claims may prevent those addicted to opioids from seeking approved treatments that have been demonstrated to be safe and effective, delay their path to recovery and put them at greater risk of death. In fact, patients receiving FDA-approved medication-assisted treatment cut their risk of death from all causes in half, according to the Substance Abuse and Mental Health Services Administration.
The FDA has requested responses from Nutra Pharma within 15 working days. The warning letter also states that failure to correct violations may result in legal action without further notice, including, without limitation, seizure and injunction.
In December 2017 the FDA proposed a risk-based enforcement approach that prioritizes enforcement and regulatory actions involving drug products labeled as homeopathic that have the greatest potential to cause risk to patients. Given the concerns about the proliferation of potentially ineffective and harmful products labeled as homeopathic, the FDA previously stated it would consider taking additional enforcement and/or regulatory actions, consistent with its current compliance policies, in the interest of protecting the public. Homeopathic products have not been approved by the FDA for any use and may not meet modern standards for safety, effectiveness and quality.
Health care professionals and consumers are encouraged to report any adverse events related to these products to the FDA’s MedWatch Adverse Event Reporting program. To file a report, use the MedWatch Online Voluntary Reporting Form. The completed form can be submitted online or via fax to 800-FDA-0178.
The FDA, an agency within the U.S. Department of Health and Human Services, protects the public health by assuring the safety, effectiveness, and security of human and veterinary drugs, vaccines and other biological products for human use, and medical devices. The agency also is responsible for the safety and security of our nation’s food supply, cosmetics, dietary supplements, products that give off electronic radiation, and for regulating tobacco products.
Patients with chronic fatigue syndrome (CFS) and fibromyalgia (FM) often have sleep-related problems.
In this chapter, we will review studies on sleep in CFS and FM patients in order to better understand their sleep problems, effects of treatment of their sleep problems, and differences between these two conditions.
Polysomnographic studies have shown sleep problems in CFS and FM, that is, increased Stage 1 sleep, reduced slow-wave sleep, more arousals, prolonged sleep onset, reduced sleep efficiency, and microarousals or subcortical arousals during sleep, while dynamic aspects of sleep show different patterns between CFS and FM patients.
Studies on pharmacological and nonpharmacological interventions such as antidepressants, graded exercise, and cognitive behavior therapy have been shown to produce improvements in sleep problems.
However, limited research has been conducted on the effects of nonpharmacological interventions on sleep problems in patients with CFS or FM for revealing the optimal strategy for exercise therapy and cognitive behavior therapy in patients with CFS and/or FM.
There are no known objective biomarkers to assist with the diagnosis of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). A small number of studies have shown that ME/CFS patients exhibit an earlier onset of ventilatory threshold (VT) on the second of two cardiopulmonary exercise tests (CPET) performed on consecutive days. However, cut-off values which could be used to differentiate between ME/CFS patients have not been established.
Methods
16 ME/CFS patients and 10 healthy controls underwent CPET on a cycle-ergometer on 2-consecutive days. Heart rate (HR), ventilation, ratings of perceived exertion (RPE) and work rate (WR) were assessed on both days.
Results
WR at VT decreased from day 1 to day 2 and by a greater magnitude in ME/CFS patients (p < 0.01 group × time interaction). No interaction effects were found for any other parameters. ROC curve analysis of the percentage change in WR at VT revealed decreases of − 6.3% to − 9.8% provided optimal sensitivity and specificity respectively for distinguishing between patients with ME/CFS and controls.
Conclusion
The decrease in WR at VT of 6.3–9.8% on the 2nd day of consecutive-day CPET may represent an objective biomarker that can be used to assist with the diagnosis of ME/CFS.
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.
New research finds an accurate way of diagnosing fibromyalgia and differentiating it from other related conditions. Using blood samples and innovative techniques, scientists have detected a "molecular fingerprint" that is unique to the condition.
Chronic pain throughout the body is the main characteristic of fibromyalgia. However, many people with the condition often experience a wider range of symptoms, which often have similarities to other conditions.
The fact that the signs and symptoms of fibromyalgia coincide with those of other disorders makes it challenging for doctors to diagnose, and often people living with fibromyalgia "are still sometimes made to feel like it's all in their head."
But, new research may have found a way to rectify this. Scientists have managed to detect fibromyalgia in blood samples and differentiate it from other similar conditions.
Kevin Hackshaw, a professor in the College of Medicine at the Ohio State University in Columbus and a rheumatologist at the university's Wexner Medical Center, led the new research.
Prof. Hackshaw and his colleagues published their study in the Journal of Biological Chemistry.
I was in my early 20s when I first began experiencing symptoms of what was eventually diagnosed as lupus. Because my most pronounced symptom, especially at first, was extreme exhaustion, I speculated I might have chronic fatigue syndrome (also known as myalgic encephalomyelitis). When I mentioned this to my doctors, I was swiftly dismissed. They had a laundry list of reasons I wasn’t suffering from a real physical illness: I was a young, stressed-out perfectionist working long hours at a competitive corporate job in New York City. I had been diagnosed with anxiety disorder and PTSD in my teens and continued to cope with both illnesses.
Putting these things together, doctors told me, it was no wonder I was so tired. I was wearing myself out by worrying and working hard, and it was as simple as that. For five years, my symptoms gradually worsened, and I was finally diagnosed with lupus by an autoimmune specialist — but my doctors believe I may have a dual diagnosis of either chronic fatigue syndrome or fibromyalgia. (There is no definitive test for either of the two latter illnesses.) Many people are shocked to learn that I waited five years to get a diagnosis and begin treatment, but my story isn’t uncommon. On average, it takes 4.6 years to be diagnosed an autoimmune illness like lupus. And although the CDC estimates that anywhere between 836,000 and 2.5 million Americans have chronic fatigue syndrome, the organization believes the majority have not been diagnosed at all.
Jess Cording: What inspired you to start Good Zing?
Serena Oppenheim: The “lightbulb” moment came from a conversation I had one day with my sisters, my mother and some of her friends. They were discussing the best home remedies on how to deal with everything from sunburn to hangovers, to diaper rash to headaches. I thought there must be a platform with information on all these everyday issues, but when I did my research I realized there wasn’t.
I then reflected on my own healthcare journey, dealing with mental and physical health issues like anxiety to my experience beating chronic fatigue syndrome and living with fibromyalgia. I come at health from the patient standpoint—I know what it’s like to be in pain or exhausted, to feel alone, scared, confused and conflicted by the huge amount of information out there. I wanted to build a social impact platform that could make a real difference to people’s lives.
An Instagram community of women documenting their struggles with chronic pain is flourishing - Selma Blair, Lena Dunham and Kirsty Young are amongst the women speaking up.
When Amelia Butlin started @cantgoout_imsick – an Instagram account detailing the suffering and strength of chronically ill individuals – she did not expect Lena Dunham to take note. So, when the Girls creator re-grammed one of her illustrations last week (a painting of Lena, which praised her openness around her health troubles), Amelia was in total shock.
‘Wow, this made me cry,’ Lena wrote, before urging her three million followers to subscribe to Amelia’s account. Lena, like Amelia, 25, suffers from fibromyalgia – a largely misunderstood long-term condition that causes pain all over the body, extreme fatigue, headaches and problems with mental processing. known as ‘fibro fog’. The post also detailed how Lena suffers from chronic pain as a result of endometriosis, where tissue similar to the lining of the womb starts to grow in places such as the ovaries and fallopian tubes (last year, Lena underwent a hysterectomy in an attempt to relieve her pain).
Endometriosis affects one in 10 women, yet it can take years for sufferers to get an official diagnosis, with many claiming that doctors fail to take them seriously. Indeed, Endometriosis Awareness Month, which started last week, aims to educate and therefore decrease the average diagnosis time – currently seven and a half years.
Awareness of such chronic conditions is increasing due to high-profile individuals discussing their pain. Last year, Kirsty Young’s fibromyalgia forced her to stop presenting Desert Island Discs, while in a 2017 documentary, Lady Gaga opened up about living with the debilitating condition, which has forced her to cancel tour dates. And last month, Selma Blair revealed that doctors failed to recognise her multiple sclerosis, as they believed motherhood was the cause of her extreme ‘fatigue’.
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:
Survey: What Should Be Considered In The Design Of A Clinic To Treat Complex Health Conditions?
South Australian news
Tuesday 19 March 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.
What should be considered in the design of a clinic to treat complex health conditions?
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.
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
UK Couple Continue To Raise Funds For A Health Centre In Flintshire
A HUSBAND and wife team are continuing their journey to help people suffering from chronic pain.
David Williams, of Connah's Quay, has been raising funds with the hopes of opening a health centre in Flintshire after his wife, Jackie, was diagnosed with fibromyalgia.
Fibromyalgia is a lifelong, incurable condition that causes constant pain throughout the body.
They have organised another Rock Off Fibro, which is in its third year, and is encouraging people to attend and raise more funds for the cause.
Mr Williams said: "We really need everyone's support to help make this event a great night.
"Please come and give these fantastic bands the backing they deserve and help us raise awareness for those suffering from Fibromyalgia, PTSD, and depression."
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.
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.
ME/CFS South Australia Inc Co-Signs International Open Letter
South Australian news
Monday 18 March 2019
ME/CFS South Australia Inc 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 South Australia Inc, also, has serious concerns about methodological design flaws in the PACE trial.
We can feel tired for a number of reasons: an underlying illness, a mental health issue, or a new baby in the house. But fatigue is more than just tiredness.
Chronic fatigue syndrome (CFS) or myalgic encephalomyelitis (ME) commonly affects the nervous, gut, cardiac, endocrine and immune systems, causing a range of symptoms including aches and pains, chronic tiredness, concentration difficulties, mood instability, headaches and a susceptibility to infection.
Someone doesn’t have to be experiencing CFS/ME to feel the pain of fatigue. Sleep and respiratory physician Dr Linda Schachter said people who are chronically sleep-deprived can have similar symptoms.
“The symptoms for CFS/ME are quite similar to obstructive sleep apnoea – so we often check to see if we can treat for a sleep problem, even if it is only mild as it may be contributing to the patient’s symptoms,” Dr Schachter said.
“When treating a patient for CFS/ME, a good sleep specialist will always ask about sleep. We do know that people who have CFS/ME have poor sleep quality. When we treat the sleep problems of people with CFS/ME it doesn’t necessarily fix their fatigue, but it often helps."
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a debilitating disorder characterized by prolonged periods of fatigue, chronic pain, depression, and a complex constellation of other symptoms.
Currently, ME/CFS has no known cause, nor are the mechanisms of illness well understood.
Therefore, with few exceptions, attempts to treat ME/CFS have been directed mainly toward symptom management.
These treatments include antivirals, pain relievers, antidepressants, and oncologic agents as well as other single-intervention treatments. Results of these trials have been largely inconclusive and, in some cases, contradictory.
Contributing factors include a lack of well-designed and -executed studies and the highly heterogeneous nature of ME/CFS, which has made a single etiology difficult to define.
Because the majority of single-intervention treatments have shown little efficacy, it may instead be beneficial to explore broader-acting combination therapies in which a more focused precision-medicine approach is supported by a systems-level analysis of endocrine and immune co-regulation.
Keywords
ME/CFS; clinical trials; immune therapy; illness heterogeneity; precision medicine
Does medical marijuana deliver on its pain-relieving promises?
Every day, Samantha is in pain. Her elbows and knees feel inflamed. Her ankle aches. She gets cramps in her abdomen. Her lower back hurts. She suffers from fibromyalgia, gastritis, gastroesophageal reflux disease (GERD) and irritable bowel syndrome.
To feel better, Samantha uses medical cannabis — also called medical marijuana — which she buys at a dispensary near her home in Joliet. “My quality of life is not 100 percent, but the cannabis at least helps to dull the pain,” says Samantha, who requested that her last name not be used because cannabis is illegal on a federal level. “It doesn’t really get rid of the pain. It kind of helps you forget about the pain.”
Samantha, 27, got her medical cannabis card for having severe fibromyalgia, which is listed as one of 40 debilitating conditions in the Compassionate Use of Medical Cannabis Pilot Program Act, which went into effect in Illinois in 2015.
Access to marijuana is expanding. Now medical cannabis is available for pain, for those who qualify. In August 2018, it was approved in the state as a replacement for prescription opioid painkillers for patients 21 and older. And Governor J.B. Pritzker is expected to legalize recreational marijuana during his term.
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.
Most information about fibromyalgia available on the internet is incomplete and may be difficult to understand for laypersons, especially as it relates to symptoms, causes, associated conditions, and treatments, a research study reveals.
Websites developed by non-profit organizations are the ones that provide the most complete information, researchers found.
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
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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.
