Workshop:
What happens NOW when someone has ME/CFS?
1. There is a lack of sense of community belonging because:
- the public and institution are disbelieving;
- their health needs are unmet
- they have difficulty getting access to benefits (eg income support, medical benefits, accommodations, homecare)
- the suffer both physical and social isolation
2. ME/CFS is a stigmatised illness:
- Three forms of stigma
* Structural - being public and private institutions (eg government, health care, medical & academic) - this results in neglect, poor policies, widespread misinformation and unfavourable insurance policies)
* Public - being negative social norms, educators, medical providers, employers, media, legislation - this results in disbelief, mistreatment by medical practitioners, accommodations are lacking, and media reinforce stigma
* Self-Stigma - being a reaction to rejection, disbelief, nondisclosure of the disease due to fear of mistreatment - this results in isolation and barriers to treatment
3. Unmet Health Care Needs:
- Attitudes of medical providers are poor
- there is a shortage of accessible, knowledgeable medical providers
- there are problems with diagnosis/lack of diagnosis
- there is a lack of treatment and problems access treatments
- there are cost issues (in visiting offices, getting tests, obtaining treatments)
3A - Attitudes and beliefs of Medical Providers
The US National Academy of Medicine Report:
* the health care community generally still doubts the existence and seriousness of the condition
* the patients report hostility within health care provider attitudes
* the barriers to timely and appropriate diagnosis is one of attitude, more than knowledge.
3B - Diagnostic Issues
- there are misperceptions about the disease
- there is a non-specific criteria
* doesn't require the hallmark symptoms
* the key symptoms of the disease are not defined or understood
- There is an overlap with other conditions
* this contributes to misdiagnosis and inappropriate treatment
- there is an importance to differential diagnosis
3C - Inappropriate Treatment
- there is no treatment for the key symptoms
- the guidelines are inappropriate and can do harm
- there is a failure to recognise and treat subsequent disease that arise (eg cancer, cardiovascular, etc)
3 D - Cost/Payment for Services
In the US experience:
- Insurance coverage varies between companies and state
- Insurance doesn't reimburse longer visits
- There is limited or no cover for tests and treatments
