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Consultation on draft report to the NHMRC CEO for ‘Myalgic Encephalomyelitis / Chronic Fatigue Syndrome’ submission

ID: 
87
Personal Details
First Name: 
Jacqueline
Last Name: 
Wilson
Specific Questions
1a. How well does the report present the difficulties faced by ME/CFS patients in receiving clinical care?: 
Poorly
Comments: 
Australia needs to develop new clinical guidelines for ME(CFS) that include recent biomedical research. The 2002 guidelines misguide doctors, clinicians, social services, insurance assessors, who probably know little, if anything, about ME(CFS) or current biological research, so ONLY have the medical guidelines to go by. They include GET/CBT now known to cause harm to ME(CFS) patients, so are utterly unacceptable. Exercise is contraindicated for those with ME(CFS). It’s not like other 'fatiguing conditions'. Its hallmark is exercise intolerance. Post exertional malaise, an exacerbation of all symptoms after even minor exertion, may leave patients having to take to their beds for days, weeks or months. ME(CFS) does not have its own medical specialty, so it is difficult finding a doctor competent to even try and help, or write medical reports. Patients need specialists trained to understand ME(CFS). Doctors need education, & updates on research findings. The report fails to show the difficulty of life with ME(CFS). Accessing NDIS & DSP is a nightmare. The stigma of disbelief or ignorance of ME(CFS) by health professionals, the public, friends, family add to the burden. This is not reflected in the report. Most people, including health professionals, view ME(CFS) as a psychological illness. The focus of research & research funding has supported this view thus far. The psychosocial model of the illness has been entirely discredited by biomedical research, yet the report fails to clearly indicate this. Access to medical care is abysmal for ME(CFS) patients. The report does not cover this aspect. It fails to show obstacles faced by patients in accessing medical care, especially when housebound or bedbound. Many are too ill to travel, yet most doctors won’t do home visits. There’s no Medicare rebate for Teleservices. The lack of care for very ill & disabled patients desperately needs to be addressed.
1b. How well does the report present the challenges facing clinicians in providing care, when there is lack of clarity on diagnostic and management tools, and minimal professional education about the condition?: 
Poorly
Comments: 
The report fails to recognise that if correct criteria is used, then diagnosis is straightforward for a trained clinician to diagnose patients using recognised diagnostic criteria (ICC), clinical presentation & some objective measures (eg: 2 day CPET). Most doctors don’t know much about ME(CFS), or understand how to help patients. Outdated Fukuda & Oxford Criteria should be scrapped. They’re too broad, & will more than likely include other 'fatiguing' conditions. The International Consensus Criteria was written by experts in the field of ME(CFS) including researchers, so this criteria is obviously better than the other 2 mentioned. The Canadian Consensus Criteria would be the 2nd choice. It’s vital Australia provides ME(CFS) education for all medical students, doctors, health professionals, clinicians, & those affiliated with social services, NDIS & DSP. Too little is known about ME(CFS) by them, who don’t see how disabling & life-changing it is, & how much loss patients go through when struck down by it. Its impact on the patient's life is huge. It has a ripple effect on family, friends, work colleagues (if they’re lucky enough to still be able to work). GET has harmed, & caused serious deterioration to far too many. In laymens’ terms, the ‘energy system is broken’ in patients. This is not adequately reflected in the report. Doctors & health professionals need to stop treating ME(CFS) as a psychosomatic illness. Education is imperative, BUT it must be up-to-date & based on latest biological research, not UK PACE Trial-type psychosocial ideology which puts the blame on the patient for being ill & recommends GET, which is harmful - this has been debunked, & is even being taught as how NOT to do a research trial in the USA. Biological evidence shows many anomalies in ME(CFS) patients that prove it’s biological not psychological.
2a. The research and clinical guidance recommendations accurately address the specific needs of the ME/CFS community.: 
Disagree
Comments: How could the recommendations be improved?: 
Report fails to show how disabling & severe ME(CFS) is. ‘Mild’ cases have 50% reduction in functioning. ‘Very severe’ cases are totally bedbound, need 24 hour care, may need tube feeding. It doesn’t show how little can trigger exacerbation - increase in all symptoms that can last for days, weeks, months or years. It uses old data that overestimates rates of recovery. It doesn’t recognise that FEW people recover (5%); most do not. Some improve, but many more do not. Many deteriorate. This is not acknowledged. The burden of disease needs updating & is not reflected in the report. Many doctors don't believe in the disease ME(CFS)! How can they provide even the most basic care if that’s their viewpoint? Education of medical professionals & others that deal with patients is VITAL - using CURRENT biological research as a basis, NOT outdated guidelines or ideologies that recommend exercise or GET, which HARMS patients. Education must dispel the myth that ME(CFS) is psychological & can be cured with exercise &/or CBT. Saying GET is controversial is inaccurate as it implies that this is merely a difference of opinion. There’s STRONG EVIDENCE (from patient reports & physiological research) showing an abnormal response to exercise in people with ME(CFS). The report doesn’t mention this research or the high level of reports of harm. Few doctors are aware of potential for harm from GET, so can’t inform patients of the risk. The evidence supporting GET is crumbling. The UK PACE Trial is discredited. Cochrane exercise review is the subject of a complaint, & being investigated (the review may be withdrawn). Why is section on GET under “Community Concerns”? This implies it’s a concern for patients only, when concern is shared by biomedical researchers & clinicians, & these concerns are supported by biomedical research.
2b. The research and clinical guidance recommendations provide an accurate representation of the current gaps in research.: 
Disagree
Comments: How could the recommendations be improved?: 
ME: recognised by the World Health Organisation as a neurological disease since 1969. CFS: a demeaning name coined in 1980s - resulted in confusion between ME & CFS, minimised & trivialised a very serious disease. ME: relatively easy to diagnose if using ICC (or CCC) as a tool, + certain tests (eg: 2 day CPET). GET must be scrapped due to so many reports of harm/deterioration by patients/clinicians. If it was a drug, it would’ve been banned long ago! Funding for biological research in Australia is abysmal & MUST be HUGELY increased by $millions. Compared to MS, with lesser number of patients (estimated 25,607 - June 2018), ME is neglected, with patient estimates up to 240,000 (that figure hasn't changed for years). Worldwide there are approximately 17-20 million ME(CFS) patients compared to MS with 2.5million (Nov 2018). Should be no disparity in research funding, when ME(CFS) is as, if not more, disabling than MS & the burden of disease is much larger. Quality of life for ME(CFS) patients is very poor. Been compared by researchers as worse than MS, & being as disabling as congestive heart failure, end stage AIDS, end stage cancer, etc. Such a crippling disease should not have been neglected, lacked funding, or lacked medical education, for SO LONG. Recommendations of GET must not be allowed to continue, when reports of harm are so many by patients & clinicians. Medical students should be taught biological nature of ME(CFS), as evidenced by research. Inadequate & potentially harmful 2002 medical guidelines must be changed, after so many years of reported harm from them. Doctors & health professionals must be kept up to date with current biological research. Emphasis must be that ME(CFS) is NOT a psychosocial or psychological disease, but a serious, disabling, biological disease.
2c. The research recommendations inform the CEO of the most effective and strategic research options currently available.: 
Disagree
Comments: How could the recommendations be improved?: 
Increase grant competitiveness. Pool of funds specifically for ME(CFS). Include in Australian Institute of Health & Welfare's Burden of Disease & Injury States. REGISTER of ME(CFS) PATIENTS mandatory for doctors & health professionals to report to, so numbers are known. Include patients in research, development of medical guidelines. Same criteria for research & diagnosis. MUST include Post Exertional Exacerbation of symptoms - the hallmark of ME(CFS). ICC or CCC recommended. Sharing of knowledge & data in research. Aim to encourage researchers to enter field of ME(CFS). Burden of disease data outdated. Name CFS is demeaning, trivialising & creates stigma around this disabling disease. ME(CFS) not just a 'fatiguing' condition. It’s SO much more; it seriously affects & impairs many bodily systems. Totally derails patients’ lives, wrecks relationships, ruins careers, & entails many losses on all fronts. Severely ill patients currently left to rot; doctors given up on them as don’t know how to help - UNACCEPTABLE! Parents, partners, carers coping as best they can with little or no help - UNACCEPTABLE! Medical specialty needs to be made for ME/CFS with trained clinicians. Knowledge of current research, tests available imperative. Specialty medical units to care for patients, including severely affected, vital Australia wide. Skype services should be available by specialists so home, bedbound, or remote, patients can access medical care, & not be left to flounder alone, as happens now. $millions should be allocated to ME(CFS) biological funding. Biomarker needed for diagnostic purposes to be found, plus treatments, & hopefully, a cure. SO: FUNDING NEEDED! GET should be scrapped for ME(CFS) patients as causes harm & deterioration. Cause has not yet been found, BUT that does not mean it’s psychological. It means science has not yet caught up. NO MORE funding for psychosocial, psychological or ‘fatigue’ research – ONLY biological research.

Page reviewed: 23 September, 2019