We all owe a huge thank you to Colleen for the amount of work put into this list. Started May 2014 and updated as needed.
Resources - Info for Doctors, Family, and Friends
By Colleen Steckel on Tuesday, May 27, 2014 at 12:37pm
QUESTIONNAIRE to help see if you fit the International Consensus Criteria for ME
FUNCTION SCALE - http://www.hfme.org/themeabilityscale.htm
EDUCATIONAL LINKS FOR DOCTORS AND CARERS:
SADLY it looks like the treatment center has taken down their information after Lerner's death. If anyone finds these videos elsewhere, please let me know. :( Write-up on Lerner's protocol: http://cfstreatment.blogspot.com/2015/04/dr-martin-lerners-treatment-protocol.html?showComment=1440416613798
DESCRIPTION OF MYALGIC ENCEPHALOMYELITIS FROM SOMEONE WITH SEVERE M.E.
EXCELLENT CHARTS WITH LINKS TO SCIENTIFIC STUDIES ON M.E./CFS
EASY TO READ BROCHURES, FACT SHEETS and links to Videos:
GOOD FORM FOR FILLING OUT BEFORE GOING TO ANY DOCTOR:
INFORMATION ABOUT EXERCISE INTOLERANCE FROM EXPERT DOCTORS & RESEARCH
Mark VanNess EXCELLENT videos explaining metabolic, cardiovascular, and pulmonary system impairment. (These are long but WELL WORTH the time.)
Short explanation of the Workwell 2 day CPET test
Note: She gives a website address, but I understand she is now at the Workwell Foundation (http://www.workwellfoundation.org/)
Video by Dr. Bell at Open Medicine Foundation: The audio on here is pretty bad but at about 30 minutes is some good information about blood volume, Vo2 Max, and oxygen.
RESOURCES FOR VARIOUS SPECIALISTS
Because many of us also suffer from POTS a cardiologist familiar with POTS might be a better choice.
IMMUNOLOGIST INFO: (From IDF - Immune Deficiency Foundation)
ANESTHESIOLOGIST/GP BEFORE SURGERY INFO
I have read this through and it is an excellent article to help psychiatrists understand the physical nature of this illness and help guide them toward helpful care and DOES NOT promote the idea this is a psychiatric disease. http://sacfs.asn.au/download/guidelines_psychiatrists.pdf
GOOD ARTICLES FOR SHARING WITH FAMILY AND FRIENDS
Unfortunately some symptoms are caused by medication. This is an excellent resource listing a lot of commonly used medications. I think all doctors should provide an informed consent form when prescribing a medication.
PROGNOSIS by Dr. Bell
Organizations I have confidence hold good material:
Understanding the name change from Myalgic Encephalomyelitis to Chronic Fatigue Syndrome and why it should go back to M.E. and CFS should be dropped.
STAGES OF ILLNESS AND HEART FUNCTION
A LOT OF LINKS AND EXCELLENT INFORMATION TO UNDERSTAND THE ILLNESS IN ONE PLACE
STUDIES ON MEDICAL ABNORMALITIES IN ME
POTS and Dysautonomia
These are often symptoms of M.E.
Helpful guide for those caring for someone with SEVERE M.E.
Document referencing data useful for children taken from parents by children's services
LDN - LOW DOSE NALTREXONE:
This has a lot of useful information about using LDN: https://sites.google.com/site/sideeffectsanddosingofldn/
Historical resource for researchers, advocates, patients
IN DEPTH DOCUMENT about M.E.:
Thirty Years of Disdain - How HHS Buried M.E. -
by Mary Dimmock and Matthew Lazell-Fairman (May 2015) -
I suggest going to the summary on page 138.
Clinical and Scientific Basis of ME (1992)