Thursday, April 4, 2013

HAWMC Day 4 – Sharing M.E. Resources

Getting the right information if you have or thing you have ME is crucial. 
Here is a non exhaustive list of ressources that I consider reliable and of value for new patients and for health care professionals. 

1- Find out about how ME is diagnosed and managed:

a) Myalgic Encephalomyelitis Adult and pediatric International Consensus Primer for Medical Practitioners (2012)

b) IACFSME Primer for physicians ME/CFS Primer for Clinical Practitioners (2012)
Who are the physician experts around the world (no particular order) 

a) Dr Dan Peterson, Incline Village, Nevada

b) Dr Nancy Klimas (Miami, Fl)

c) Dr Andreas Kogelnik (Mountain View, Ca)

d) Dr Jose Montoya (Palo Alto, Ca)

e) Dr Derek Enlander (New York, NY)

f) Dr Charles Lapp (Charlotte, NC)

g) Dr Kenny DeMeirleir (Belgium)
De Tyraslaan 1
1120 Neder-Over-Heembeek

h) Dr John Chia (Los Angeles)

i) Dr Lucinda Bateman (Salt Lake City, Utah) 
3- Important scientific papers as it relates to ME (in no particular order)

a) ME and Lyme disease are distinct from one another:  Distinct cerebrospinal fluid proteomes differentiate post-treatment lyme disease from chronic fatigue syndrome.

b) Chemotherapy drug Rituximab makes 67% of a small cohort better: Benefit from B-Lymphocyte Depletion Using the Anti-CD20 Antibody Rituximab in Chronic Fatigue Syndrome. A Double-Blind and Placebo-Controlled Study

c) Plasmacytoid Dendritic Cells in the Duodenum of Individuals Diagnosed with Myalgic Encephalomyelitis Are Uniquely Immunoreactive to Antibodies
to Human Endogenous Retroviral Proteins

d) Immunological abnormalities as potential biomarkers in Chronic Fatigue Syndrome/Myalgic Encephalomyelitis 

e) A Formal Analysis of Cytokine Networks in Chronic Fatigue Syndrome 

f)  Impaired cardiac function in chronic fatigue syndrome measured using magnetic resonance cardiac tagging

g) Abnormalities in pH handling by peripheral muscle and potential regulation by the autonomic nervous system in chronic fatigue syndrome. 

h) Gene expression alterations at baseline and following moderate exercise in patients with Chronic Fatigue Syndrome and Fibromyalgia Syndrome

i) Mitochondrial dysfunction and the pathophysiology of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

j) Myalgic encephalomyelitis: International Consensus Criteria

4- Online Communities (a mention is not a recommendation)

a) Phoenix Rising Forums:

b) ME/CFS forums

c) People with ME Forum:

d) Pro-Health Boards
5- Government content I support 

6- If you have money growing in trees.... Here are the places you can leave it:

a) Open Medicine Institute

b) Simmaron Research

c) Invest in ME (UK) 

d) Whittemore-Peterson Institute

e) ME and You: Crowdfunding clinical research on CFS/ME – engaging both sides of the Atlantic! 

f) Alison Hunter Memorial Foundation (Australia) 

7- National ME organizations:

a) National ME/FM Action Network (Canada)

b) CFIDS Association of America

c) ME Association

d) ME/CFS Australia

e) Invest in ME (UK)

1 comment:

  1. Excellent idea Kati. TOo tired to get details, but I'd add the Canadian Consensus Criteria to the list of imprtant docts, Dr John Chia and Lucinda Bateman to the Dr list, Invest in ME in the UK for a national group, and Dan Mercoli's group for online communties CFS Knowledge.