Working with your Doctor

Building a trusting relationship with your doctor is an important part of any illness management plan. This is especially the case when you have a complex and long-term illness like Myalgic Encephalomyelitis /Chronic Fatigue Syndrome and may also have other comorbidities.

ME/CFS can be a challenging illness for doctors. They may not have received any training in ME/CFS, nor be aware of the current clinical guidance. Also, ME/CFS can present differently in each person and there are limited treatments available. This situation can lead to frustration for both the doctor and the patient.

An informed GP with a good understanding of your situation, may be able to refer you to other health services and can provide medical evidence for a range of financial supports from Work and Income and information for employers.

We have put together some tips that may help you to partner with your doctor, to share the lived experience, and to ensure that the doctor is aware of current and emerging evidence-informed practice.

Open our 'Working with your Doctor' handout

The Healthify website also has advice for making the most of health care provider visits in New Zealand

www.healthify.nz/hauora-wellbeing/h/healthcare-provider-visits.

Clinical Advice for GPs about ME/CFS

'HealthPathways' is an online system from Health NZ that GPs log into to view best-practice clinical advice for assessing and managing a wide range of health conditions and concerns.

Ask your health professionals if they have read the ME/CFS topic on HealthPathways recently, as it includes current best-practice clinical advice, based on the IOM 2015 diagnostic criteria and management guidelines from NICE, CDC, Mayo Clinic and ME/CFS expert clinicians.

The shorter, public version of the advice can be viewed at www.info.health.nz/health-topics/conditions-treatments/brain-and-nerves/chronic-fatigue-syndrome.

To encourage your health team to check it out, we have prepared a letter about the ME/CFS HealthPathway. Print this out, or send them the link, or email our office if you would like a copy of the letter posted out to you to take to your next GP appointment.

Your doctor may also be interested to view the excellent 96 page 'Clinical Care Guide: Managing ME/CFS, Long COVID, & IACCs' from Bateman Horne Centre, USA, who are leading international ME/CFS clinicians. Also see our links for health providers.

Forms to help you plan for an appointment

A planning sheet allows you to write down what you want to share and how you want to say it, and also, to take notes about what is said in the appointment.

We suggest using one of the following templates (these are not ME/CFS specific) to get your thoughts and priorities organised before your appointment:

The single page Preparing Information for your Doctor Appointment template from Emerge Australia, a ME/CFS charity. This form provides space for you to write your goals and questions for this appointment, some notes about follow-up from your previous appointment, and more.
The Appointment Day template set (7 editable pdf templates) is a non-ME/CFS specific set of single-page forms available for free from BeforeMyVisit.com, an AI health platform based in Ireland. Take a look and see if you would find any of these useful. They also have an AI tool that you might want to try out.

The Health Quality & Safety Commission, NZ, also has a two-page Plan for your next Health Care Visit sheet which is available in different formats and languages.

Forms for making your illness more visible

There are a variety of forms and tools available to make the symptoms and impact of living with chronic illness more visible to your health team. Think about what you want to share… Is it your reduced capacity to do things, or what your symptoms are, or both?

FUNCAP

The Functional Capacity Questionnaire was developed for people who experience post-exertional malaise. It comes in two question lengths (55 and 27) to document your functional capacity, support needs, and loss of independence for a range of activities... personal hygiene and basic functions, walking and moving around, being upright, activities in the home, communication, activities outside your home, reactions to light and sound, and concentration.

There is an online version of FUNCAP55 which generates a pdf of your results. For iPhone users, there is a FUNCAP27 app. For others, print the FUNCAP27 pdf and calculate your own results.

A research article was published in 2024 to document why and how the questionnaire was developed.

Long COVID

For people with Long COVID, the two-page Post COVID Symptom Map, developed by Physiotherapy New Zealand for Ministry of Health, highlights symptom severity and functional disability.

Bateman Horne Centre Forms

The single-page editable Good Day Bad Day Questionnaire from Bateman Horne Centre has ten questions for you to answer to highlight your range of function on baseline/good days and PEM/crashed/bad days and your hours of upright activity (HUA).

BHC also has a Health Assessment worksheet to note symptom scores, hours of upright activity, pain areas and appointment priorities.

Both forms have been developed for ME/CFS and related chronic illness.

Emerge Australia Forms

The single-page Symptom Severity and Severity Hierarchy Profile from Emerge Australia allows you to identify your symptoms, their severity and your priority in having them addressed.

They also have a Sleep and Pain Profile form. Both forms have been developed for ME/CFS and related chronic illness.

Basic ME/CFS Diary

Our Activity and Symptom Diary allows you to monitor and log your activity, biometrics, and symptoms over 7 days. This may help you and your health team to identify what triggers post-exertional malaise for you and what your activity baseline and pacing needs are.

Generic Symptom Severity Scale Form

The two-page editable Symptom Severity Scale from Care Patron is not ME/CFS specific. It includes space to rate and describe your symptoms and their impact.

Finding a new GP

There are services around the region that can assist you with finding a local General Practitioner and other services. Ask them to recommend a GP who is taking new patients and supports and understands your health conditions:

Tautoko Hauora in Canterbury
Awawhenua Whanau Services in South Canterbury.
West Coast Health for the West Coast.

The national www.healthpoint.co.nz website also has a search function to find local and online services.

Pegasus Health in Canterbury also provides useful advice about finding Your Best Care | Choose your best health care option.

It can be useful talking to other people living with the same health conditions about the health professionals that they have found helpful.

My Health Passport

My Health Passport is a booklet where you can write down information about how you want people to communicate with you and support you when you receive a health or disability service, including when you visit a medical centre or the hospital.

It is not a tool to help doctors diagnose or monitor patients, nor a substitute for a patient’s medical records. But it can be a useful way to get key information across, especially at a time when you may not be cognitively present to communicate well.

We have some A5 hard copies which we can provide to members. Please email us to post out to you, or you can pick up at a group meeting. Alternatively, you can download from the Health and Disability Commissioner website. They even have editable pdf versions, which you could edit and then print, or keep on your phone.