Communicating with Your Doctor

Image of a masked white-hared male Doctor with an electronic tablet, talking to a masked male Patient.

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

MEadvocacy.org’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.  (B&W printable version.)

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). 

“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

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

MEI’s USING A PULSE OXIMETER (pdf)    [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 (pdf)
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

 

US ICD Code Letter to Doctors – 1 October 2022
This letter explains the change in the U.S. diagnosis code (ICD) for ME and CFS with the addition of ME/CFS.  We recommend you take this to your doctor to make sure your records are kept up to date.

BOOKS 

Textbook by Dr. Byron Hyde (focus on enterovirus) – Understanding Myalgic Encephalomyelitis

Missed Diagnoses by Dr. Byron Hyde 

Severe ME – Info & books at Stonebird