A new kind of patient advocacy - Femade's Patient Advisory Board

Femade was developed out of a dream; it was based on the notion that a person - a patient - should be able to obtain treatment of any kind that might reduce pain and increase quality of life, be it from the modern medical system or through practiced alternative medicines. Founder Anusha Gandhi has been able to turn this dream into a company. While the concept is to grow our services and expand this company into a Nation-Wide epicentre for pain management, the focus will always be on the patient. 

“In order to keep our feet on the ground we needed to have a base of patients that would remind us of the purpose, and remind us that while it might be advantageous from a business perspective to go in a certain direction it may not always be in the patients’ best interest” says Gandhi. Gandhi decided to parallel her Advisory Board members with a Patient Advisory Board: a well-rounded group of chronic pain patients who share similar but unique experiences with a variety of illnesses associated with pain. 

In Early Spring, Femade will open its doors for patients to receive physical treatment. Meanwhile, the patient advisory board will work on several social support groups that will be the backbone to Femade’s mental health initiatives.  “We are honored to have such a strong group of individuals who will serve not only as the patient voice but will act as an extension of our social media presence to continue to educate Canadians on pain, pain management and the importance of leaning on social support.”

Our Patient Advisory Members will be posted on our website shortly, with full bios. Each advocate is channeling their own patient advocacy while working as a team to push Femade’s mission of a higher standard of care for those suffering with chronic pain. Please welcome our team members.

Canada has hope for Myalgic Encephalomyelitis (ME)

According to research, Myalgic Encephalomyelitis (ME) affects 30 million people worldwide - a staggering half a million people in Canada alone - from ages 4-70. Over the years the disease has thought to be brought on by a stressor such an infection, or an accident or psychologically tragic event. There may be genetic or hormonal components at play as well, which could be contributing to the high comorbidity rate of ME and Endometriosis. Similarly this may help explain the disproportionate amount (3:1) of women affected by this disease.

ME, like so many other invisible illnesses struggles to get the much deserved attention from the medical system, and research funding bodies. Early last week, a resounding hooray was heard amongst Canadians during the announcement that the Canadian Institutes for Health Research will be awarding $1.4M toward a research network focused on ME. This network will be led by Alain Moreau, a Quebec researcher who says “Researchers have recently found that myalgic encephalomyelitis is probably not a single disease. We would rather talk about a spectrum; Five subgroups of patients with different symptoms have been identified and the disease may have different causes or mechanisms.” The complexity of this disease is a challenging one for physicians, and seemingly a grossly generalized disease with dedicated researchers here in Canada (with international collaborations) aimed at distilling these subcategories. We have seen this story written in this disease’s history once before where chronic fatigue - a common but not defining symptom of ME - was confounding diagnosis, coining this disease as Chronic Fatigue Syndrome (CFS). Once removing fatigue from the diagnosis criteria, the International Consensus Criteria (ICC) put more emphasis on more defining characteristics with a set of symptoms to aid in diagnosis and to distinguish ME from other chronic disorders.

This $1.4M, five-year investment aims to improve the quality of life of people living with ME through:

• investigating the causes of ME, including possible links to viruses and genes;

• linking cohorts of patients and researchers in Canada and the US, enabling investigators to share research samples, clinical data, and analysis methods;

• supporting graduate students working on ME to build Canadian capacity to research this condition; and

• benefiting from the wisdom of people with ME who are active research partners.

If you, or someone you know has signs of Myalgic Encephalomyelitis, you can also check out a great resource here in Canada called MillionsMissingCanada - a local group advocating for ME research funding and access to treatment options.