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

ID: 
93
Personal Details
First Name: 
Emanuela
Last Name: 
Bryant
Specific Questions
1a. How well does the report present the difficulties faced by ME/CFS patients in receiving clinical care?: 
Very Poorly
Comments: 
PSYCHOLOGICAL vs BIOMEDICAL MODEL OF ME/CFS: The report does not clearly state that ME/CFS is a biomedical illness, despite the clear evidence that it is. The report does not mention that the psychological model of ME/CFS, which has been dominant for decades, has been discredited, nor that it excludes biological processes (there are no biomedical treatments under this model. They are purely behavioural). This model is directly responsible for the stigma which patients experience. STIGMA: People living with ME/CFS experience considerable stigma. Despite the evidence confirming that this is a biological illness (including the Institute of Medicine’s 2015 report having reviewed 9,000 studies), many doctors aren’t aware of this biomedical research and still see it as a psychological condition. Doctors tell patients that they can be cured with exercise, and then blame the patients themselves when they don’t recover. The report downplays this stigma, and the role the psychological paradigm has played in the stigma patients experience. ACCESS TO MEDICAL CARE: There are very few doctors and specialists who understand ME/CFS enough to be able to provide adequate care to this patient population. Half of all doctors don’t believe that ME/CFS exists at all, how can they provide good care? Many patients report feeling disrespected or disbelieved. The report downplays this. The report also downplays how difficult it is for people with ME/CFS who are housebound or bedbound to access medical care. Not many doctors do home visits, and even fewer of those know anything about ME/CFS.
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?: 
Very Poorly
Comments: 
DIAGNOSING ME/CFS: Patients can wait a long time to get a diagnosis of ME/CFS. The report implies that this is because it is difficult to diagnose, though this isn’t true. A doctor with training and understanding of the condition can use existing diagnostic criteria and tests to make a diagnosis. MEDICAL EDUCATION: One of the biggest issues is that doctors don’t know enough (or anything) about the condition. We need better medical education, from undergraduate through to ongoing professional development. Medical education must include the biomedical evidence, and adopt a biomedical framework, to stop the harm being done to patients over decades from the psychological paradigm. CLINICAL GUIDELINES: The 2002 Australian guidelines must be replaced. They are perpetuating an outdated understanding of the illness as being psychological, and they recommend GET/CBT, which many patients have found harmful. We need new guidelines, based on biomedical evidence. Because of this, it is also inappropriate for NHMRC to include the 2002 guidelines on its list of resources. They should be removed. The patient community strongly objected to the 2002 guidelines, during their development, when they were published and since then, but was ignored. The new guidelines must not repeat this mistake. New guidelines must be developed in collaboration with patients.
2a. The research and clinical guidance recommendations accurately address the specific needs of the ME/CFS community.: 
Strongly Disagree
Comments: How could the recommendations be improved?: 
GRADED EXERCISE THERAPY (GET): This is probably the number one concern for patients. So many patients have been made worse by doing graded exercise therapy and yet it is not only still recommended, but patients are not told of the risks associated with it. Very few doctors are aware of the risks, so they are unable to inform their patients. This means it is impossible for these patients to give informed consent to undergo this treatment. The report must include a warning that graded exercise therapy (GET) may make them worse. It’s not enough to say that GET is inappropriate for those who are severely unwell. Many who have mild cases have been made severe by doing GET. And if GET was treating the underlying condition, as it supposedly does, why would it not be appropriate for those who are severely unwell? The GET section in the report hasn’t included the criticism of the Cochrane review, nor has it included criticism of the flaws in GET from biomedical researchers. It also hasn’t included any of the biomedical research which supports patients who say they have been harmed by GET. This section of the report is biased. This isn’t just about “Community Concerns”. Many researchers and clinicians who recognise ME/CFS as a biomedical condition have equally expressed concerns. IMPACTS OF ME/CFS: Many people with ME/CFS are severely disabled, unable to leave their homes or beds. These people are so severely unwell that it takes so little to make them worse. Many are unable to tolerate visitors from friends or family members, or only occasionally. Some are unable to talk or feed themselves. The report glosses over this.
2b. The research and clinical guidance recommendations provide an accurate representation of the current gaps in research.: 
Strongly Disagree
Comments: How could the recommendations be improved?: 
CANADIAN CONSENSUS CRITERIA: Recommending diagnostic criteria (Canadian Consensus Criteria) is important, so that future funding is on ME/CFS (ie: people who experience post-exertional malaise), rather than fatigue. Research progress has been hampered by conflating ME/CFS with fatiguing illnesses. There are many different causes of fatigue. ME/CFS is not merely at the severe end of a spectrum of fatigue. This confusion has made it difficult to understand the pathophysiology of ME/CFS. We need research cohorts to be specific to ME/CFS, especially when funding has been allocated to ME/CFS. CONSUMER ENGAGEMENT: Nothing about us, without us. Patients have a wealth of knowledge and should be included in all decision making steps. However, consumer engagement should accommodate the illness (eg: the process of providing feedback on this report hasn’t accommodated the needs of people with ME/CFS). RESEARCH FUNDING: The report acknowledges that more funding is needed. This needs to be focussed on biomedical research, as psychosocial research has received the bulk of funding to date, and this has hampered progress in understanding the condition. OBJECTIVE MEASURES: A major criticism of GET/CBT trials for ME/CFS (though this is not limited to these) is that they are unblinded trials that use subjective outcome measures. This makes these trials highly subject to bias. This approach is no longer acceptable for drug trials, and it should not be acceptable for ME/CFS trials. We need higher standards in clinical trials, to be able to objectively measure the effectiveness of treatments. HEALTH SERVICES RESEARCH: Many carers look after adult living with the illness, not just children or adolescents. The impact of caring on the carers and family relationships should be examined.
2c. The research recommendations inform the CEO of the most effective and strategic research options currently available.: 
Strongly Disagree
Comments: How could the recommendations be improved?: 
NHMRC GRANTS: The report says that there is a low success rate for NHMRC grants. ME/CFS research is at a disadvantage because there are no biomarkers, and because of decades of underfunding which has hampered progress. But biomarkers won’t be found without an increase in funding, but the field isn’t competitive with grants without biomarkers. How does NHMRC propose to help ME/CFS beat this vicious cycle and win grants? BIOBANK: Researchers are already able to access samples from patients. ME/CFS lack funding for research. This is the primary need. A biobank should not be funded instead of research. It should only be funded in addition to research funding. Any biobank must be specific to ME/CFS, rather than fatigue. If a biobank was funded, it should focus on samples which aren’t easily accessed (eg: brain tissue) rather than body fluids like blood. DIVERSITY: Research should include patients from diverse racial and cultural backgrounds.

Page reviewed: 23 September, 2019