Resources & Info for Dr's
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:
Excellent summary of ME as per Dr. Ramsay (1955 outbreak)- includes TESTS to diagnose ME: https://docs.google.com/document/d/1kKrECuv4fy4T9CbLS7FD4S9xw4rpisFHre9YR25uO3M/mobilebasic#heading=h.dp2zvnpo8one
PRIMER: M.E. International Consensus (ICC) Primer for Medical Practitioners (2012) http://www.investinme.org/Documents/Guidelines/Myalgic%20Encephalomyelitis%20International%20Consensus%20Primer%20-2012-11-26.pdf
Excellent list to help doctors diagnose ME: (While called CFS here, they are referring to what #MEICC describes.) http://www.cfstreatmentguide.com/blog/the-diagnosis-of-chronic-fatigue-syndrome-an-assertive-approach
2011 Journal of Internal Medicine describing ICC http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2011.02428.x/epdf
2017 Primer for adolescents: http://journal.frontiersin.org/article/10.3389/fped.2017.00121/full#h7
PRIMER: Canadian Consensus Case Definition and Guideline. (2005) http://www.name-us.org/DefintionsPages/DefinitionsArticles/ConsensusDocument%20Overview.pdf?hc_location=ufi
PRIMER FOR PHYSICIANS: Brief version https://www.guideline.gov/summaries/summary/38316
EMERGENCY SHEET: This is good to print out and have available for surgeries and emergencies http://www.njcfsa.org/wp-content/uploads/2010/08/Anesthesialetter8-06Cheney2page.pdf
CARING FOR SEVERE GUIDE SHEET http://www.25megroup.org/Campaignging/Severe%20ME%20Day/2015/Home%20Care%20Briefing%20Aug%202015.pdf
HOW TO TREAT PATIENTS VIDEO (2011 Nancy Klimas) https://www.youtube.com/watch?v=UMimz3iDk0s
HOW TO TREAT PATIENTS VIDEO (Dr. Teitelbaum) https://www.youtube.com/watch?v=KuIRDzUDO3o
HOW TO TREAT PATIENTS VIDEO (Dr. Lerner - deceased) http://www.treatmentcenterforcfs.com/video/2011-prt1.htmlhttp://www.treatmentcenterforcfs.com/video/2011-prt2.html
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
Good Page with lots of resources. Created by Jodi Bassett who died from M.E. but her website is still accessible here: http://www.hfme.org/metheshockingdisease.htm
IN DEPTH EXPLANATION FROM MASSACHUSETTS CFIDS ME/FM ASSOCIATIONMitochondrial Dysfunction, Post-Exertional Malaise https://www.masscfids.org/resource-library/13-basic-information/302-mitochondrial-dysfunction-post-exertional-malaise-and-cfsme#6
DESCRIPTION OF MYALGIC ENCEPHALOMYELITIS FROM SOMEONE WITH SEVERE M.E.
EXCELLENT CHARTS WITH LINKS TO SCIENTIFIC STUDIES ON M.E./CFS https://drive.google.com/file/d/0B_Dn3IXWlI9fTGdpSjkzcmtWRUU/view
EASY TO READ BROCHURES, FACT SHEETS and links to Videos:
VIDEO about ME's Broken Energy Production: 4:40 min video - https://www.youtube.com/watch?v=FxPpxI5mL3g&feature=share
IiME Brochure: http://www.investinme.org/matchsticks.htm
Understanding the Immune System (explains terms like IgG, T cells, B cells, lymphocytes, etc.) http://primaryimmune.org/wp-content/uploads/2013/06/Chapter-1-The-Immune-System-and-Primary-Immunodeficiency-Diseases.pdf
GOOD FORM FOR FILLING OUT BEFORE GOING TO ANY DOCTOR:
INFORMATION ABOUT EXERCISE INTOLERANCE FROM EXPERT DOCTORS & RESEARCH
Dangerous exercise. The detrimental effects of exertion and orthostatic stress in Myalgic Encephalomyelitis and chronic fatigue syndrome by Frank Twisk: https://oatext.com/pdf/PMRR-2-134.pdf
Stacy Stevens 2015 talk with tips to help prevent crashes: https://www.youtube.com/watch?v=XFz4CK0Js1M
http://one1cent7.wix.com/from-me-back-to-me#!cpet-testing/c1e6t
What is PEM: https://healthunlocked.com/ramsaysdisease/posts/131728315/post-exertional-malaise
Deviant Cellular and Physiological Responses to Exercise in Myalgic Encephalomyelitis and Chronic Fatigue Syndrome http://www.jacobspublishers.com/images/Physiology/J_J_Physiology_1_2_007.pdf
Neural consequences of post-exertion malaise in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome http://www.sciencedirect.com/science/article/pii/S088915911730051X
Mark VanNess EXCELLENT videos explaining metabolic, cardiovascular, and pulmonary system impairment. (These are long but WELL WORTH the time.)
https://www.youtube.com/watch?v=7BceGgEdMpA
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. http://www.openmedicinefoundation.org/2016/03/22/dr-david-bell-joins-omf-scientific-advisory-board/
RESOURCES FOR VARIOUS SPECIALISTS NEUROLOGISTS INFO:
Brain Inflammation Study: http://www.ncbi.nlm.nih.gov/pubmed/24665088
White Matter Involvement in CFS: http://onlinelibrary.wiley.com/doi/10.1002/nbm.3261/pdf
Information about White Matter Hyperintensities: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4599520/
Video on brain abnormalities seen with a QEEG https://www.youtube.com/watch?v=msfPDBP6HOc
Visual Midline Shift Syndrome (brain caused visual problems) https://padulainstitute.com/education/articles/post-trauma-vision-syndrome/
Progressive brain changes inpatients with CFS - (White Matter Deficits)
Neural consequences of post-exertion malaise in Myalgic Encephalomyelitis/CFS http://www.sciencedirect.com/science/article/pii/S088915911730051X
Neuroinflammation in the Brain of Patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
Right Arcuate Fasciculus Abnormality in CFS
CARDIOLOGISTS INFO:
Because many of us also suffer from POTS a cardiologist familiar with POTS might be a better choice.
Circulatory Impairment in ME: http://www.meadvocacy.org/circulatory_impairment#addreaction
Page 83 of the IOM report explains the importance of a 2 day CPET - http://www.iom.edu/Reports/2015/ME-CFS.aspx (The IOM is merely a report that uses other sources, but many cardiologists will listen to the IOM when they won't listen to other sources. I normally prefer to use original sources.)
Page 6 of M.E. International Consensus Primer: http://sacfs.asn.au/download/me_international_consensus_primer_for_medical_practitioners.pdf
Circulating Blood Volume in CFS: http://www.ncf-net.org/library/Bell-StreetenJCFS1998.htm
Understanding Orthostatic Intolerance, POTS, and Orthostatic Hypotension: http://emedicine.medscape.com/article/902155-overview
Inotropic Function of the Heart in Patients with CFS and Treatment Methods http://aaemconference.com/speakers/monro.php
Dr. Lerner -Prevalence of Abnormal Cardiac Wall Motion in theCardiomyopathy Associated with Incomplete Multiplicationof Epstein-Barr Virus and/or Cytomegalovirusin Patients with CFS http://iv.iiarjournals.org/content/18/4/417.long
Chronic Heart Failure at younger age in ME patients. http://www.ncbi.nlm.nih.gov/m/pubmed/20010505/
Disorders in IO/NS pathways may explain cardiovascular disorders http://www.ncbi.nlm.nih.gov/pubmed/20038921
HEART RATE abnormalities: http://www.ncbi.nlm.nih.gov/pubmed/26374335
Elevated brain natriuretic peptide levelsin chronic fatigue syndrome associatewith cardiac dysfunction: a casecontrol study http://openheart.bmj.com/content/openhrt/4/2/e000697.full.pdf
IMMUNOLOGIST INFO: (From IDF - Immune Deficiency Foundation)
Good description about the Th1 and Th2 abnormalities. (Looking for more info easier to share with doctor but at least this should help be ready to see an immunologist.) http://livewithcfs.blogspot.com/2012/01/immune-system-abnormalities-in-mecfs.html
DENTIST INFO
HANDOUT FOR DENTISTS: https://www.dropbox.com/personal?preview=Change+for+Me+dental+care-1+(4).pdf# Another link to this document: https://lookaside.fbsbx.com/file/Change%20for%20Me%20dental%20care-1%20%286%29.pdf?token=AWxmqog1JZZ5rz1EENXEuRj5qkmVTnkGB2Et03qeDlVmQ53BT2FOmQ27XuB0ZRc09fBfUAF6L1OPClhD_WvIx7bhl4_HU2Tx-sv59NvPNZKp6mLVvfTph7zSHMsKRymWtaZc942hZjwcvREL2o0D_9_deVxUCmFrYHnPJx_Bvtx1kQ
Impact of Rantes from Jawbone on CFS: https://www.ncbi.nlm.nih.gov/pubmed/28685531
ANESTHESIOLOGIST/GP BEFORE SURGERY INFO
OPTOMETRISTS INFO
Visual Midline Shift Syndrome: https://padulainstitute.com/education/articles/post-trauma-vision-syndrome/
PSYCHIATRIST 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
Guide for family and friends on how to treat someone with Chronic Illness. http://itoldyouiwassick.info/2015/07/13/how-to-treat-a-person-with-chronic-illness/
Nature article March 2017: http://www.nature.com/news/biological-underpinnings-of-chronic-fatigue-syndrome-begin-to-emerge-1.21721
This link is a one stop for a number of articles in mainstream media: http://paradigmchange.me/mecfs-media/
Books (I have these and feel they do a pretty good job of describing the experience of having M.E./CFS)
"Can I Tell You About ME/Chronic Fatigue Syndrome?" http://www.amazon.com/Tell-about-Chronic-Fatigue-Syndrome/dp/1849054525
2015 article: Primer on CFS (Could lead some who don't want to listen that treatment of food and supplements is "cure" but the links at the bottom of the article are excellent) http://www.greenmedinfo.com/blog/primer-chronic-fatigue-syndrome
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.
http://www.dhs.wisconsin.gov/forms1/F2/MedBrandName.htm PROGNOSIS by Dr. Bell http://www.openmedicinefoundation.org/2016/08/01/prognosis-of-mecfs/
Organizations I have confidence hold good material:
http://www.investinme.org/ write to info@investinme.org
http://www.anzmes.org.nz/what-is-me/library/ (Access to the full information costs $40 - I have seen some of what comes out of this organization and have been impressed.)
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.
http://paradigmchange.me/wp/mecfs/
STAGES OF ILLNESS AND HEART FUNCTION
A LOT OF LINKS AND EXCELLENT INFORMATION TO UNDERSTAND THE ILLNESS IN ONE PLACE
http://voicesfromtheshadowsfilm.co.uk/me-cfs-and-research/
STUDIES ON MEDICAL ABNORMALITIES IN ME
http://paradigmchange.me/wp-content/uploads/2014/12/M.E.-and-Medical-Abnormalities-Plain.pdf
POTS and Dysautonomia
These are often symptoms of M.E.
CARERS:
Helpful guide for those caring for someone with SEVERE M.E.
CHILDREN:
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)