re: Patients First: integrating MECFS and related orphaned illnesses into healthcare in Alberta

[Linda J. MacDonald]

Dear AMA

 

Thank you for the opportunity to give support to AMA initiatives and to present information of concern.

 

Please see the document AMA letter- July 24 final – LJM attached.

 

The other documents are explained and introduced therein.

 

The topic is the need to use the goals of Alberta Medical Association’s Vision: Patients First to address the unmet needs of the orphaned illnesses Myalgic encephalomyelitis/Chronic fatigue syndrome (ME/CFS), fibromyalgia (FMS), multiple chemical sensitivites (MCS) and chronic Lyme disease. Without the attention to these, over 30,000 Albertan patients will continue to receive next to no care and no systemic support for their longstanding, disabling neuro-immune conditions.

 

I look forward to a reply and am happy to supply additional information or discussion/contacts

 

Best regards,

 

Linda J. MacDonald

BSc Physical Therapy, BA linguistics

 

• cofounder of Canadians for Universal Healthcare and Research for ME in 2012 (an information sharing and networking initiative)

 

·        science advisor for the Environmental Health Association of Alberta 2009- ongoing

 

• founder and participant in an Albertan ME/CFS remote-social-support-circle for bedridden and housebound patients, 2005 – ongoing

 

• Past Assistant Science Director and Alberta Government Relations Manager for the National ME FM Action Network (all volunteer Canadian patient group) from 2005 to 2009

 

• severely ill ME/CFS patient for over 20 years