9. People disabled with ME/CFS have access to all the services, assistance and rights already available to meet the needs of disabled citizens in Canada.

 Answer: False

Canadian ME/CFS patients face many roadblocks in the quest for needed assistance of all kinds.

The diagnosis of ME/CFS is based on clinical criteria and critically depends on exclusion of other physical diseases, or psychiatric illness. In Canada, the testing recommended on page 19 of the Canadian Consensus Guideline Overviews is rarely carried out or completely known by physicians. The typical ME/CFS diagnostic period of 5 years disadvantages those patients applying for medical or disability leave, since deadlines for supplying documentation of illness can rarely be met by patients awaiting ME/CFS diagnosis. The patient is obliged to pay for laboratory or other ME/CFS specific tests offered only in other countries, with no guarantee that once the results are available, these (Health Canada-recommended) tests will be acknowledged or understood by the insurance company or other recipients.

The various definitions of disability remain open to diverse interpretations, and this, plus the lack of adherence to a gold standard leaves the patient floundering to prove permanent disability—or to prove illness at all.

Lack of implementation of the Health Canada-recommended baseline diagnostic standard (The Canadian Consensus Guidelines for the Diagnosis and Treatment of ME/CFS ) has allowed insurance companies and government disability bodies to ignore findings, rendering the process of proving illness next to impossible. The situation is such that in many cases, no evidence which could be presented by any doctor or lab has been accepted. This equates to a categorical dismissal of ME/CFS as a disabling illness. The financial, person and social spin-offs of this situation are ubiquitous and easy to imagine.

To complicate matters, ME/CFS patients are in the most severe stages by the time they reach out for help and in many cases, filling out a form, making a phone call, or attending an appointment is very difficult or impossible.

Then there is the innate extra expense of being a ME/CFS patient. Private Canadian ME/CFS clinics typically extra-bill for services because the provinces do not cover most ME/CFS-specific tests or procedures/methods, and there is no government body which periodically reassesses this. The result is a default situation of private health care for ME/CFS, with little mainstream care available. This limits access for the many with ME/CFS who have been unjustly denied disability benefits, have lost all former resources and income, and now live below the poverty line on a fixed income.

Added to this is the scarcity of ME/CFS doctors on top of the current shortages of doctors nation-wide (Alberta for instance is short about 1000 family doctors for any condition, according to a 2007 estimate.) Canadian ME/CFS doctors have waiting lists as long as three years, and many are no longer taking new patients. Diagnosis of ME/CFS remains inefficient and diagnostic times average 5 years. Patients should be aware that a Health Canada recommended (Rnase-L) blood test is available through Redlabs USA. In many cases it provides a quick clear diagnosis of ME/CFS. Patients should urge their provincial health authorities to provide access to and coverage for this test.

Few ME/CFS patients are healthy enough to travel to other countries to try the protocols used there. However, our universal health care offers them no ME/CFS-specific options, despite availability at least on a clinical trial basis elsewhere. Provincial governments do not yet fund federally-recommended ME/CFS blood tests, nor are there any government departments or watchdog ethics organizations monitoring and implementing updates to current default protocols of omission.

There exist only a handful of ME/CFS clinics across Canada. The result: half a dozen overloaded extra-billing clinics for 340,000 patients, many of whom are bed ridden or housebound and unable to travel.

When these medical and health care basics are not working, the government, justice system and society at large do not receive the input required to include the needs of ME/CFS patients in existing social, justice or educational programs, provide services, monitor and update policies to include ME/CFS needs, launch inquiries, or change situations which are not working.

Lack of access to medical and health care for ME/CFS patients is an in-depth, multi-faceted issue which already required immediate federal and provincial government attention 20 years ago. By now, it is a well-silenced and global crisis of exclusion, of unprecedented magnitude for any illness in the developed world.

This situation is not unique to Canada. “In the USA, more than 80% of CFS/ME patients have not found a provider expert enough to make a diagnosis, let alone treat their illness. It is a gaping hole in our health care system, and is true across the globe. Our patients are falling into this chasm. The lack of providers with any training in this field guarantees that this will remain the single biggest issue facing our patients. As investigators, it deprives us of our subject population and skews the population we do study to those patients that can overcome the barriers of our health care systems to seek expert care. All in all, this is simply unacceptable.” —Introductory letter on http://www.iacfsme.org/ by Nancy Klimas, M.D. President, International Association for CFS/ME (IACFS/ME) 2008.

Hope

There have been recent improvements to aspects of the ME/CFS disability status in Canada, such as the addition of criteria to the Disability Tax Credit application which acknowledge disabilities related to severe ME/CFS. However, much remains to be done to ensure access to ME/CFS healthcare and to disability, human and civil rights at the national standard.