Australia & NZ
Here is your opportunity to let the SA government know what issues people with ME/CFS,
their family, carers or health care providers have, in engaging with the health system.
Closing date for survey: 5pm Friday 3 April 2020.
NOTE: the other opportunities to be involved start 3rd March.
They want to hear about your stories and lived experience, both the positive and negative, to help improve our health and disability system.
Please share this widely.
This is a long post but at the bottom are some prompting questions they have prepared that you may want to consider before sharing your story. We have also included some suggested areas that you may want to cover.
There are five ways to provide feedback:
• Complete the online submission form
• Attend one of their events:
• Drop in sessions
• Listening sessions
• Follow up forum
• Email Health.HPCengagement@sa.gov.au
To access these options click on YourSAy link.
If you are not able to attend any sessions and would prefer to talk to them, they will organise a time for a telephone interview with you. Send them an email at Health.HPCengagement@sa.gov.au or call (08) 8226 3188 for more information.
Please note: Contributions will be treated in strict confidence. However, confidential submissions may still be subject to Freedom of Information laws.
Findings from this consultation, as well as proposed actions, will be reported to the Minister for Health and Wellbeing and published. A summary of the feedback received at each of the listening sessions and through the website will be available in late June 2020.
For more information see: Background section on YourSAy site.
Contact for general inquiries: email HealthHealthPerformanceCouncil@sa.gov.au or call (08) 8226 3188 during business hours (9am to 5pm, weekdays).
#LivedExperience #YourSAy #SouthAustralia #MECFS
What type of stories are they looking for?
Your experiences with the health system:
• What works well?
• What are the opportunities for improvement?
• What are health care professionals doing well and what lessons could they learn?
• What has been your experience using different types of health service – GPs, pharmacies, hospitals?
The health and disability systems:
• What are your experiences of continuity of care between health and disability services?
• Has this been affected by the introduction of the National Disability Insurance Scheme?
• What are the things that you, or people you know, would like to have access to?
Anything else?
"Don’t let us limit you – tell us anything you think we should know."
Here are some topics we might want them to know more about in relation to ME/CFS, in particular, how the symptoms of ME/CFS create challenges that are overlooked.
(Some of these are federal issues but it is important to let the state government know, so they can inform the federal agencies of the issues.)
Access to medical and other services
- inability to attend
- denial of services
- unable to afford care and/or required reports
- services and treatments not locally available
- lack of accommodations needed for my disability (e.g. POTS, MCS, noise)
- lack of knowledgeable health practitioners
Misdiagnosis leading to harm
- threat of removal of children on assumption that family are causing the disabling symptoms.
- unwarranted psychiatric diagnosis leading to incorrect management and treatment
Housing
- access to affordable housing
- access to safe accommodation
- inability to break the lease on housing that does not meet disability needs
Education:
- access to distance education
- accommodations for impairments
Reasonable Accommodations under the Disability Discrimination Act:
- not being recognised as having a disability
- experience of discrimination
- denial of human rights
Abuse:
- experience of dismissive, humiliating or derogatory behaviour
- physical or emotional violence
Reliance on family, friends and carers
- mistreatment due to misunderstanding of ME/CFS
- lack of independence for both person with the disability and their carers.
DSP and Newstart:
- access
- impact of poverty
- DSP requirement to undertake harmful treatments
NDIS:
- access
- developing plans
- managing services
Insurance:
- access to disability cover
Dr Zack Shan (who has been working with the NCNED group at Griffith University, and is now based at University of Sunshine Coast) has been awarded a $1.2m grant to undertake an ME/CFS neuroimaging project. This is an NHMRC grant (NHMRC is the equivalent of NIH here in Australia), and it’s the first time in more than 10 years that a biomedical ME/CFS project has been successful in NHMRC’s competitive grants project.
In total, there were 2651 applications for these grants and just 294 were funded (11%). (I’m not sure how that compares with NIH or MRC?)
PROJECT:
Title: “Multimodal MRI of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Understanding its Neuropathophysiology and Developing an Objective Neuromarker”
Grant: $1,269,545.70
Description: “This translational brain imaging study will investigate the underlying brain disease process of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and develop a multimodal imaging diagnostic marker for it. Understanding the brain disease process of ME/CFS will allow design of biologically based therapeutic interventions. A diagnostic marker for ME/CFS will alleviate the distressing diagnostic odyssey currently experienced by the patients and facilitate multicentre clinical trials.”
https://www.nhmrc.gov.au/.../data.../outcomes-funding-rounds
This grant is in addition to the health economics study and $3m Targeted Call for a Research which the government has also funded.
The Judith Jane Mason & Harold Stannet Williams Memorial Foundation (‘the Mason Foundation’)
is a charitable trust that supports medical and scientific research on
myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and Alzheimer’s disease.
The Mason Foundation was established as a result of a generous donation in 2003 from
Judith Jane Mason (nee Williams). She also made a number of top-up contributions during her lifetime.
The Foundation is named in honour of the benefactor and her father, Harold Stannett Williams,
who Ms Mason described as “a most intelligent, wonderful and charitable man”.
DISABILITY ROYAL COMMISSION IS HERE!!!
With the Disability Royal Commission now beginnings it’s hearings, it is time for people with ME/CFS to stand up and voice their experiences. The terms of reference allow the Commission to examine government, institutions and the community, and from the investigate the issues with a view to improving the situation
Some of the issues that you might wish to raise are abuse/discrimination/refusal of service/inappropriate service because of your ME/CFS by:
* medical institutions (eg doctors, hospitals, nursing staff, allied health, care facilities, service providers, etc);
* educational institutions (eg unis, schools, colleges, TAFE, etc);
* Commercial Institutions (eg the media, employers, banks, finance companies, private care facilities and providers, insurance companies, health insurance companies, taxi providers, etc);
* government institutions (eg Legal, Medical, NDIS, NDIA, providers, Centrelink, Housing, Medicare, Workers Compensation Insurers, MP’s, Ministers, NHMRC, research funders, Councils, Public Transport, Motor Registry, etc);
* Community (Religious organisation’s, Charitable organisation’s, incorporated associations, family, friends, strangers, etc).
As you already know - the stigma runs deep in this condition, so it’s essential to get that information and the degree to which it flows must come to the fore.
The complete terms of reference are here:
https://disability.royalcommission.gov.au/.../default.aspx
The Commission allows submissions to be made by way of a submission form and even by way of phone call.
https://disability.royalcommission.gov.au/.../default.aspx
There are also support services available that you can potentially access.
https://disability.royalcommission.gov.au/.../default.aspx
Targeted Call for Research into Myalgic Encephalomyelitis (ME)/Chronic Fatigue Syndrome (CFS) 2019 Grant Opportunity Guidelines
Applicants requiring further assistance should direct enquiries to their Administering Institution’s Research Administration Officer.Research Administration Officers can contact NHMRC’s Research Help Centre for further advice: Phone: 1800 500 983 (+61 2 6217 9451 for international callers) Email: help@nhmrc.gov.auNHMRC will not respond to any enquiries submitted after 13:00 AEDT on 22 January 2020.Note: NHMRC’s Research Help Centre aims to provide a reply to all requests for general assistance within two working days. This timeframe may be delayed during peak periods or for more detailed requests for assistance.
https://app.box.com/s/5gw044rhmkz5phb09nj4buwcmi9u0qus?fbclid=IwAR3HjwNxgRMMvtGS_fcuiNnmwKnqsWlaeH5xQ0UweMlfZ_ccMlZRvhk4R5M
Adequacy of Newstart and related payments and alternative mechanisms to determine the
level of income support payments in Australia
On 25 July 2019, the Senate referred an inquiry into the adequacy of Newstart and related payments and alternative mechanisms to determine the level of income support payments in Australia to the Senate Community Affairs References Committee for inquiry and report by 27 March 2020.
Geoffrey Peter Hallmann v National Mutual Life Association of Australasia [2019] NSWWCC 283
NSW Workers Compensation Commission acknowledges ME/CFS, in terms of impact upon heart, endocrine, and other major systems. Additionally the WCC agrees that various supplements, sleep apnoea treatment, gastrointestinal, pathology and SPECT investigation, IVF treatment, and weight loss treatment are reasonable and necessary.
WCC refuses to hear a number of procedural fairness and technical issues pertaining to insurer misconduct, conflict of interest and non compliance.
“2. Respondent to pay the applicant’s reasonably necessary medical and related treatment expenses pursuant to section 60(1) of the Workers Compensation Act 1987 (the 1987 Act) in respect of cardiac investigations and pathology tests as a result of injury ...
3. Respondent to pay the applicant’s reasonably necessary medical and related treatment expenses pursuant to section 60(1) and (5) of the 1987 Act in respect of proposed cardiac investigations, including consultations with the nominated treating doctor and cardiologist, as recommended by the nominated treating doctor and cardiologist as a result of injury...
5. Respondent to pay the applicant’s reasonably necessary medical and related treatment expenses pursuant to section 60(1) of the 1987 Act in respect of Invitro Fertilization treatment of the applicant and his partner, ... as a result of injury.
6. Respondent to pay the applicant’s reasonably necessary medical and related treatment expenses pursuant to section 60 (1) and (5) of the 1987 Act in respect of proposed Invitro Fertilization treatment of the applicant and his partner, ... as a result of injury.
9. Respondent to pay the applicant’s medical and related expenses in the amount of $511 pursuant to section 60(1) of the 1987 Act in respect of vitamin supplements as a result of injury.
10. Respondent to pay the applicant’s reasonably necessary medical and related treatment expenses as a result of injury pursuant to section 60(1) and (5) of the 1987 Act in respect of future vitamin supplement programme recommended by the nominated treating doctor.
11. Respondent to pay the applicant’s reasonably necessary medical and related treatment expenses as a result of injury pursuant to section 60(1) of the 1987 Act in the amount of $1,719.83 in respect of weight loss and diet programme recommended by the nominated treating doctor.
12. Respondent to pay the applicant’s reasonably necessary medical and related treatment expenses as a result of injury pursuant to section 60(1) of the 1987 Act in the amount of $6,974.75 in respect of sleep apnoea and sleep dysfunction recommended by the nominated treating doctor.
13. Respondent to pay the applicant’s reasonably necessary medical and related treatment expenses as a result of injury pursuant to section 60(1) of the 1987 Act in the amount of $1,998.44, including any additional cost for sunglasses, in respect of behavioural optometrist services provided to the applicant....
19. Respondent to pay the applicant’s reasonably necessary medical and related treatment expenses as a result of injury pursuant to section 60(1) of the 1987 Act in respect of SPECT scans performed in 2012 and 2013...
24. Respondent to pay the applicant’s reasonably necessary medical and related treatment expenses as a result of injury pursuant to section 60(1) of the 1987 Act in respect of gastroenterological investigations.
25. Respondent to pay the applicant’s reasonably necessary medical and related treatment expenses as a result of injury pursuant to section 60(1) of the 1987 Act in respect of blood tests performed during the period 12 April to June 2014 recommended by the nominated treating doctor.”
https://www.wcc.nsw.gov.au/.../3657-14-Hallmann-COD-SOR...
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Myalgic Encephalomyelitis / Chronic Fatigue Syndrome Advisory Committee 55 pages
https://www.nhmrc.gov.au/about-us/publications/mecfs-advisory-committee-report-nhmrc-chief-executive-officer?fbclid=IwAR2C5n4llQVGPYP4hI1saBb-0QKaNDXpOYnHEwqxLe2J2D2WxFBRMwOJyT0#block-views-block-file-attachments-content-block-1
Epidemiological characteristics of chronic fatigue syndrome/myalgic encephalomyelitis in Australian patients
A total of 535 patients diagnosed with CFS/ME by a primary care physician were identified. The mean age of all patients was 46.4 years (standard deviation 12.0); the majority were female (78.61%), Caucasian, and highly educated.
Of these, 30.28% met Fukuda criteria.
A further 31.96% met both Fukuda criteria and International Consensus Criteria.
There were 14.58% reporting chronic fatigue but did not meet criteria for CFS/ME and 23.18% were considered noncases due to exclusionary conditions.
Within those meeting CFS/ME criteria, the most common events prior to illness included cold or flu, gastrointestinal illness, and periods of undue stress.
Of the 60 symptoms surveyed, fatigue, cognitive, and short-term memory symptoms, headaches, muscle and joint pain, unrefreshed sleep, sensory disturbances, muscle weakness, and intolerance to extremes of temperature were the most commonly occurring symptoms (reported by more than two-thirds of patients). Significant differences in symptom occurrence between Fukuda- and International Consensus Criteria-defined cases were also identified.
https://www.dovepress.com/epidemiological-characteristics-of-chronic-fatigue-nbspsyndromemyalgic-peer-reviewed-fulltext-article-CLEP?fbclid=IwAR2vh-VPmd7QHKwXtWU58HH3Xgcx9AWhg6y1v72Osvo6kxUJ8o8zpTA0x0Y
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$3 million research funding for Chronic Fatigue Syndrome
Studies leading to a better understanding of the 240,000 Australians suffering from chronic fatigue syndrome will now be of greater focus, thanks to a $3 million investment from the Australian Government. Please bear in mind that Australia uses the CCC 2003. Page last updated: 27 March 2019
PDF printable version of $3 million research funding for Chronic Fatigue Syndrome - PDF 119 KB
Myalgic Encephalomyelitis / Chronic Fatigue Syndrome Advisory Committee Report to the NHMRC Chief Executive Officer
The only Australian prevalence estimate for ME/CFS is almost three decades old. This indicated that ME/CFS was estimated to affect 0.2-1% (48,000 - 240 000 people) of the Australian population, 1,2 which is consistent with current international estimates. 3Australian research has made significant contributions to the field. However, the lack of significant public sector research funding over the last decade or more has triggered patients with ME/CFS and advocacy groups to call for greater awareness and recognition of the condition, an increase in research funding and a review of current Australian clinical recommendations. Similar initiatives have been established in the USA, Canada, and the UK.
Hummingbirds Foundation submission hfme
HFME’s principal concern is those patients who the term ‘Myalgic Encephalomyelitis’ was originally coined to describe -those with the enteroviral-initiated disease which was formerly known as “missed polio”. This specific disease has been principally studied by Drs John Richardson, Byron Hyde, Melvin Ramsay and Elizabeth Dowsett. It was given a neurological classification in the WHO’s ICD in 1969 on the basis of the illness’s extensive documentation in both its outbreak and sporadic manifestations which showed it to have multi-system involvement and always to present with CNS damage.
https://liberationislife.files.wordpress.com/2019/02/hummingbirds-foundation-submission-hfme.pdf
Australia’s National Health and Medical Research Council (NHMRC) answered questions from Greens, Centre Alliance and Labor senators at Senate Estimates budget hearings. Senator Griff asked if they would add experts in biomedical research to the ME and CFS advisory committee. Senator Steele-John asked if it would be concerning if a member of the panel thought that ME or CFS patients could be cured by aqua aerobics. Senator Watt asked if the NHMRC will specify criteria or guidelines to be used in the studies it funds.
https://meaustralia.net/2018/06/15/australias-medical-research-council-questioned-on-me-and-cfs-committee/?fbclid=IwAR0eBQRmGZKowieSXPYJg7a5SRi7x1Yfq68-8BQvEaEdH0zsgh4mg8FFdAE
Consultation on the Myalgic encephalomyelitis and Chronic fatigue syndrome Advisory Committee
Report to the NHMRC Chief Executive Officer
Closes on Monday, 18 February 2019, 11:59pm (AEDT)
The National Health and Medical Research Council (NHMRC) Myalgic encephalomyelitis and Chronic fatigue syndrome (ME/CFS) Advisory Committee (the Committee) is releasing the draft ME/CFS Advisory Committee Report to the NHMRC Chief Executive Officer (the draft Report) for public consultation. The Committee invites the Australian community to provide comments on its draft Report (Attachment A) before finalising and providing it to NHMRC’s CEO. The Committee’s report to the CEO will help to inform decisions about what NHMRC can do given its dual role in supporting health and medical research and developing evidence based health advice for the Australian community.
The effects of myalgic encephalomyelitis, or ME for short, are devastating enough to leave 25 per cent of sufferers housebound or bedbound and an estimated 75 per cent unable to work. But, there are no government programs supporting ME awareness in Australia, there are no approved pharmaceutical treatments and, sadly, there is no cure. It's time to take this seriously and increase funding and research for this disease for the hundreds of thousands here and the missing millions around the world.
https://www.facebook.com/alex.young.98434/posts/1832043346843308?hc_location=ufi
Australia
The "My Health Record Program" must be made OPT-IN before the 15th of October (2018)
and it's many flaws fully and satisfactorily addressed in Legislation.
We deserve to make an informed choice about whether the
limited benefits justify the substantial risks to our sensitive information.
https://www.facebook.com/HummingbirdsFoundationforME/posts/2228918397124436?hc_location=ufi
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Myalgic Encephalomyelitis (ME), commonly referred to as Chronic fatigue syndrome (CFS) is a complex and highly debilitating condition characterised by profound fatigue following exertion (that is not relieved by sleep or rest), unrefreshing sleep and cognitive impairment. Secondary symptoms may also include gastrointestinal disorders, muscle and joint pain and immune impairments. Post exertional malaise (PEM) is suggested as a cardinal feature of ME/CFS. 1,2
The aetiology of ME/CFS has not been found although many hypotheses exist.3 Diagnosis is also a challenge in the absence of a diagnostic test and lack of a universally accepted case definition among researchers and clinicians.4 Diagnosis currently relies on elimination of other similar disease patterns and self-reported symptom based criteria given by patients. Symptoms are often varied between patients and these diverse experiences make ME/CFS diagnosis and treatment challenging. 5)NHMRC has established an ME/CFS Advisory Committee (the Committee) under section 39 of the National Health and Medical Research Council Act 1992. The Committee will consider and advise the NHMRC Chief Executive Officer on current needs for research on ME/CFS and clinical guidance on its diagnosis and treatment.
Terms of Reference
The Committee will advise the Chief Executive Officer of NHMRC on:
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the status of national and international research into ME/CFS
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gaps in research on ME/CFS. This will include but not be limited to research on the immunology, psychology, microbiology and virology of the conditions, as well as any health services research
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the status of clinical guidance on ME/CFS available to doctors and health professionals
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requirements and opportunities for improved clinical guidance
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any other issue on ME/CFS that the NHMRC Chief Executive Officer may request.
Membership
The Committee includes a range of expertise, including physicians, researchers and consumer representatives.
https://www.nhmrc.gov.au/health-topics/myalgic-encephalomyelitis-and-chronic-fatigue-syndrome
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You and ME: An Update on Myalgic Encephalomyelitis for Psychologists
Rose Silvester is a consultant clinical psychologist based in Wellington, New Zealand, currently working at the Regional Personality Disorder Service at Capital & Coast District Health Board (CCDHB). In the context of her son’s illness she has immersed herself in the literature available on ME/CFS and models of care for chronic illness. She is engaged with the global ME/CFS community of researchers, clinicians and advocates and has initiated a national carers support network
as well as a local carers support group.
https://www.facebook.com/NZcare4ME/
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Just Invisible” Medical Access Issues For Homebound/Bedridden Persons
If you are homebound/bedridden and you live in the community, then the healthcare system treats you as if you do not exist. People who are homebound and/or bedridden have extensive and systemic problems with accessing the medical healthcare system, including access to GPs, medical professionals, hospital systems and allied health. If you don't turn up you are assumed not to need or want the service. This is not like access to public transport, where we have excellent anti-discrimination laws but the government keeps awarding exceptions the rules. This is not like access to websites, where there are excellent guidelines about how to be accessible but people just don't follow them. his problem is that the entire medical system has been designed and based around physical attendance, and that it treats non-attendance almost exclusively as a problem of patient noncompliance. There are a few small tweaks to make exceptions for people in rural and remote areas, and some even smaller tweaks for people who live in aged care, but in the main if you are homebound or bedridden and you live in the community, then the healthcare system treats you as if you do not exist and should not exist.
http://notdoneliving.net/justinvisible/
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Otago Daily Times, New Zealand May 26 2018
Thousands of New Zealanders cannot work or live normal lives because of a disease difficult to diagnose and nearly impossible to treat. University of Otago professor of biochemistry Warren Tate explains to business editor Dene Mackenzie how he continues to search for a better future for sufferers of chronic fatigue syndrome.
https://www.odt.co.nz/business/set-quest-treat-me
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New Zealand You Tube
A really excellent description of how ME patients are treated by the medical profession, with reference to the PACE Study.https://www.youtube.com/watch?v=7NKsbjU89Zk&feature=share
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Australia - Banking, Superannuation and Financial Services Industry Royal Commission GET YOUR SUBMISSIONS IN ASAP!!!
Why?
Let’s highlight ME/CFS and CFS claim denials - and maybe get some compensation.
What questions do you get asked on the banking and finance royal commission submission?
Not many. See the photos and the link below. This is a very simple questionnaire.
What services relate to ME/CFS?
Could be banking. Could be super. Could be TPD or income protection. Could be general insurance.
What do I tell them is the culture?
Tell them it’s one of not paying ME/CFS claims and finding reasons to deny the benefits of insurance policies when claims for ME/CFS are made.
What do I do when I get a copy to my email?
Send it onto mecfslegal@yahoo.com.au and it will be collated into a single submission (no names - just types of claims and problems - confidentiality is assured).
Why do this?
(A) it may result in compensation down the track (Turnbull has mooted it)
(B) we highlight that the insurance industry has a definite attitude to ME/CFS and CFS claims!!!!!
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Public consultation now open on the ‘Consumer involvement’ module for ‘Guidelines for Guidelines’
WEDNESDAY 9 MAY 2018
NHMRC is working with an expert advisory committee to develop a new resource for guideline developers that will update its existing suite of methodological advice.
The revised content will be published online as a series of modules collectively called ‘Guidelines for Guidelines’, and will provide practical advice for guideline developers wishing to meet the NHMRC Standards for Guidelines. They will cover a range of topics such as forming actionable recommendations, identifying and managing conflicts of interest and scoping complex guidelines for public health or environmental issues.
NHMRC seeks your feedback on the ‘Consumer involvement’ module. This module focuses on the scope and nature of consumer involvement, including levels of engagement, identifying and recruiting relevant consumers and supporting effective consumer involvement.
You are invited to make a submission through the online public consultation portal available athttp://consultations.nhmrc.gov.au. Consultation closes on Friday 15 June 2018 at 5:00pm AEST. To receive alerts about upcoming NHMRC public consultations, including future guidelines modules, please register your interest at the NHMRC Subscription Service.
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Just to hammer home the issue with respect to the stupidity of GET being applied to patients going for NDIS and DSP
“Given their findings of the disorder's underlying pathology, Marshall-Gradisnik says graded exercise therapy is 'contraindicated and potentially harmful' for patients with CFS-ME. 'The pathology we have identified in this illness specifically involves disruption to the physiological responses to adverse stimuli, including physical activity. It is negligent to subject patients wilfully to exercise and other stimuli when they are already in physiological compromise.'”
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May 2018
Griffith University researchers have received the largest funding ever awarded for Chronic Fatigue Syndrome research, which will allow the development of a first-of-its-kind diagnostic blood test to identify genetic markers for #CFS. This breakthrough test will help put an end to the myths around the chronic illness and is also one of the key items being discussed at today’s Gold Coast Health and Medical Research Conference.
https://www.facebook.com/griffithuniversity/videos/10154550816976005/?hc_location=ufi​
Centre for Neuroimmunology & Emeerging Diseases - NCED
http://ow.ly/u8u6306GVWPNational
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May 2018 ME Association
Ramsay Research Fund invests in new study with ME/CFS Biobank to examine dysfunctional immune system and energy metabolism
“This research will also involve collaboration with Dr Christopher Armstrong’s research team in Australia – who are looking at metabolic (chemical) changes in the blood that occur during energy production.
The main aim of the study is to increase our understanding of the role of T and B cells in M.E. and links with defective energy metabolism. However, it could also lead to the identification of a biomarker pattern for diagnosis or sub-grouping of people with M.E.”
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Via: Geoffrey Hallmann
If you have been ripped off by your bank or insurer due to your ME/CFS diagnosis, the time to act is NOW.
It may not impact your situation (it could) BUT it can help future victims !!!
Put your submission in now!! So that ME/CFS Legal Resources can do a top level submission - please forward a copy to mecfslegal@yahoo.com.au. Confidentiality is assured. Feel free to de-identify if you wish. With strength of numbers we can identify the key players and the excuses given. ME/CFS Legal will construct a submission and use strength of numbers to demonstrate a systemic problem across the banks and insurers. We know they don’t pay - let’s highlight the issue publicly in the biggest forum we will ever get.
https://financialservices.royalcommission.gov.au/Public-submissions/Pages/default.aspx
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Exploring pacing to increase physical activity: Is active video gaming a feasible and acceptable strategy for adults with Myalgic Encephalomyelitis and Chronic Fatigue Syndrome?
Scientific title
A pilot study exploring pacing to increase physical activity: Is active video gaming a feasible and acceptable strategy for adults with Myalgic Encephalomyelitis and Chronic Fatigue Syndrome?
https://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=370224&isReview=true
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5558045/
A misrepresented petition was making the rounds in early March 2018 that did not include the science regarding this study stating that there was no science. https://my.meaction.net/petitions/stop-dangerous-and-unscientific-xbox-study-in-south-australia
GAME has issued a correction.
Please do not base your decision on the misrepresented information in this petition. This study may help those with #MEICC as well as those with ME/CFS CCC2003.
The link to the formal study is posted above.
This is not sanctioned by MEAction and you can flag this petition if you do not agree with the way the study is being misrepresented by going to the petition page, Scroll down, click on 'Flag this petition' and it allows you to email MEAction about it.
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The following has not been mentioned in the petition.
Pacing has been added to the title - because pacing is being studied.
The study has never included PACE-style GET. The main researcher has stated emphatically that PACE protocols are risky even for healthy people, because they advise continuing activity regardless of symptoms.
This study is only accepting ICC or CCC diagnosed people. The study is only accepting people with mild to moderate ME/CFS as the program is not considered suitable for people with severe ME/CFS. This study is not accepting people who usually avoid television and other moving images for sensory reasons, as there is a chance of the person being allocated to X-box use. PEM will be measured in the lab before participation, so that each individual will have a personalised maximum safe heart rate. Each participant will be issued with a heart rate monitor and instructed in the use of HR for pacing and safety. Pacing is one arm of the study. There are almost no controlled studies of pacing as a management tool, even though patients report it as the top tool for managing the illness. Heart rate and activity meter data will be collected. Again, this is a rare research opportunity. Most of our HR data comes from lab studies. This study will collect HR data, all day and every day, as participants go about their lives. Additionally, for one week, this HR data will be able to be compared to the activity meter data - again, not in a lab but for the whole week, in the home. This is not a poorly thought out study.
Control group:
These people will have the HR monitors so we will learn about what is happening to people with ME/CFS from a HR perspective as they go about their lives. This is information we do not currently have.
Gaming group:
The researchers know there is a good chance the X-box arm of the study will show that it is not suitable for people with ME/CFS - which is useful information as it is a rehabilitation approach that has been studied with other patient groups, such as SLE (lupus), stroke, frail aged. If it doesn't suit ME/CFS, then we have evidence that it is not suitable.
Pacing group:
This study will be a first in terms of pacing, with pacing being taught to the participants and supported by training in using HR to stay within safe activity levels. We currently have no objective evidence of the value of pacing.
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