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Communicating with your Doctor
( updated 17 May 2022)

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The following are materials to help you communicate with your doctor, helping him/her understand the reality of myalgic encephalomyelitis.

Information provided at this site is not intended to diagnose or treat any illness and is not to be considered as medical advice.

ME INTERNATIONAL CONSENSUS CRITERIA ME-ICC


ICC Webform

​The Swiss Society for ME & CFS offers a web form to fill out the International Consensus Criteria.  This questionnaire enables you to determine whether the diagnosis of ME (Myalgic Encephalomyelitis) according to the International Consensus Criteria (ICC) may be applicable to you.  Upon completion of the form there will be a printout you can give to your doctor.
English       German       French
  

ICC Questionnaire

MEadvocacyOrg's ICC questionnaire (downloadable pdfs) - This is a questionnaire you can print out to complete and then take to your doctor.  NOTE: If you have post-exertional neuroimmune exhaustion but do not fulfill all the requirements to fit the ICC, you may have atypical ME.  Atypical ME is treated the same as ME.
English      Spanish      Dutch 

ICC Symptom Checklist

ME International’s Symptom Checklist - Fill out this two page form to help your doctor see at a glance your cluster of symptoms.

HELPING YOUR DOCTOR UNDERSTAND ME

ME International’s Dr. Handout - A blog regarding our (printable) two page info sheet which introduces doctors to the value of the International Consensus Primer.
English      Spanish      Dutch   

ME IC Primer - This primer can be printed out and handed to your doctor.  It includes understanding the causes for ME symptoms and how to diagnose ME including testing on page 11.  It also has management/treatment guidance starting on page 13.  Links to the ME IC Primer in multiple languages can be found HERE.
This Limitation of Consent to Treatment Template (05 April 2022) from Valerie Eliot Smith (U.K.) offers an example of how to communicate concerns about being forced into treatment by medical professional who are not familiar with ME.

HELPING YOUR DENTIST UNDERSTAND ME

Evan Spivack, DDS, a professor and leader of the Special Care Treatment Center at the Rutgers School of Dental Medicine, authored the 2020 report Dental Care of the Homebound Patient with ME/CFS (pdf).  A highlighted version is provided HERE.  "Overall, care for the homebound and bedbound population with ME/CFS issues has been under-addressed in the literature to date and there has been little consideration of the oral health needs of this population. Evaluation, diagnosis and treatment of dental concerns may be hindered by many of the diverse symptoms of ME/CFS. The present paper utilizes the International Consensus Criteria (ICC) in discussing treatment considerations for the most severely affected patients with ME/CFS, both in oral evaluation and active care. While no specific dental pathology is linked to ME/CFS, proper care for the patient so affected must take into account the disorder’s symptoms and severity."  Original source HERE.
It may be beneficial to provide this report to your dentist prior to your next treatment ~MEI.

INFO SPECIFIC TO YOU

en EspaƱol
The following have fill-in sheets that can aid your doctor to understand how ME has affected you.

MEI's USING A PULSE OXIMETER     [
en Español] 
This sheet explains the importance of tracking heart rate and oxygen levels. A chart for tracking info can be found on page 4.


North Carolina/Ohio ME & FM Support Group's CARDIOLOGIST HANDOUT
This sheet has specific information regarding cardiac issues seen in ME.  A chart for tracking info can be found on pages 3 and 4.

SPECIALISTS YOUR DOCTOR MIGHT UTILIZE

A list of ME specialists can be found in the list of those who helped write the ME IC Primer.  See inside of front and back cover.

Dysautonomia specialists - See info at Dysautonomia International

OTHER INFO FOR YOUR DOCTOR

MEI's INFO SHEETS WEBPAGE
Includes the following:
    Basics for treating ME    
    Info Sheet for treating patients with ME  
    Avoiding an ME crash  
    Handout for Cardiologists  
    Handout for Neurologists (specific info about ME)  
    ME Immunology info sheet  

    LDN Use in ME  
   [en Español] 
    Coping with Symptoms While Waiting for a Cure  
    Conditions to rule out  
    Emergency room info sheet  


BOOKS 
Textbook by Dr. Byron Hyde (focus on enterovirus) - Understanding ME
Missed Diagnosis by Dr. Byron Hyde 
Severe ME - Info & books at Stonebird


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​The information provided at this site is not intended to diagnose or treat any illness and is not to be considered as medical advice.
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  • Home
    • Current Newsletter
    • Members in the News
    • Archived Newsletters
    • Advocacy
    • Board of Directors >
      • Annual Report 2021
      • Annual Report 2020
  • Criteria
    • Understanding Criteria
    • Severe ME
    • FAQs about ME
    • The History of ME
  • Medical/Research
    • Primer/Info Sheets
    • Patient Resources >
      • Communicate w/Doctor
      • ER Info for pwME
      • Assistance
      • Do I Have ME?
      • Pain
      • PENE
      • Sleep Problems
      • Disability
      • Coping with Symptoms while waiting for a Cure
      • Medical Specialties
    • Exercise Dangers
    • Published ME-ICC Studies >
      • Published ME-CCC Studies
    • Possible Biomarkers
    • Videos / Music
  • Orgs
    • Crisis Information
    • International ME-ICC Orgs
    • Australian ME-ICC Orgs
    • Canadian ME-ICC Orgs
    • E.U. ME-ICC Orgs
    • German ME-ICC Orgs
    • Irish ME-ICC Orgs
    • Japanese ME-ICC Orgs
    • New Zealand ME-ICC Orgs
    • Norwegian ME-ICC Orgs
    • Portuguese ME-ICC Orgs
    • South African ME-ICC Orgs
    • Spanish ME-ICC Orgs
    • Swiss ME-ICC Orgs
    • UK ME-ICC Orgs
    • US ME-ICC Orgs
  • Connect
    • Membership Application
    • FB Groups
    • Committees
    • Contact
  • Blog List
    • Outside Blogs on ME
  • Donate
    • Pulse Oximeter Fundraiser