Monday 8 May 2023

Communicating With Your Doctor - Helping Your Doctor to Understand Myalgic Encephalomyelitis


MYALGIC (muscle pain)
+ ENCEPHALO (relating to the brain)
+ MYEL (relating to the spinal cord)
+ ITIS (inflammation)


 (brain and spinal cord inflammation with muscle pain)

When faced with a life changing, devastating chronic multi-systemic illness patients often don’t know what to do. If you think you or someone you care for has ME, taking a few steps to prepare for your appointment(s) with a doctor or other healthcare provider can make all the difference in getting the proper medical evaluation, diagnosis, and treatment. 

You play an important role in helping healthcare providers understand your illness - your symptoms and how they affect your daily life.

What to do before Medical Appointments

  • Prepare a brief history that summarizes your experience with suspected ME. For example, write down: 

    • a list of your symptoms
    • a list of your worst/most disabling symptoms, prioritise
    • when your symptoms started 
    • what makes your symptoms worse
    • how the symptoms affect your ability to be active
    • how often symptoms occur
    • what happens after you have been active, i.e. the post exertion response (PENE)
    • how long after you are active do you start to suffer a post exertion response (PENE)
    • how long do you suffer from the post exertion response (PENE)
    • how does the post exertion response (PENE) & other symptoms prevent you from doing usual activities/work/socialising/getting out of bed/getting to the bathroom/preparing meals/washing yourself - this will depend on severity of illness

  • Describe examples of your worst days, outlining what is happening/how debilitating symptoms are.
  • Prioritise symptoms - select your most important issues/most challenging symptoms and write them down. Review how to present your symptoms factually, clearly, quickly. Sometimes symptoms are lost in a list that’s too long so prioritising is important. Bring your list to your appointment to go through your symptoms and issues. Most importantly, put your symptoms into context. Ask for help in dealing with your symptoms.
  • Write a list of medications and supplements you are taking. Bringing your lists with you will help keep track. 
  • Consider bringing a family member or friend with you for support. This person can also help you take notes and remember what happened at the visit with your doctor or other healthcare provider. The provider you see could be a doctor, nurse, nurse practitioner, or other type of healthcare professional. 

It may take more than one visit to your doctor to:

 - evaluate your individual set of symptoms and post exertion response, i.e. PENE
 - determine an accurate diagnosis
 - organise a plan of management to suit your individual needs

Materials to help you communicate with your doctor and other healthcare practitioners helping them to understand the reality of Myalgic Encephalomyelitis (ME)

For Attending the appointment
    • Creating an ME Accessible Healthcare Setting -  Information Sheet for Doctors and other Healthcare Staff by ME Advocates Ireland (MEAI)

For Aiding a Diagnosis
    • How ME is Diagnosed, from the International Consensus Criteria (ICC)
    • International Consensus Primer (ICP)
    • Early Diagnosis
    • Information about PENE, the cardinal feature of ME
    • De Paul Symptom & Severity, and PEM Questionnaires
    • Bells Disability Scale
    • Simple alternative questionnaire to determine if the patient meets the ICC Criteria 

For Managing & Treating 
    • International Consensus Primer  
    • Information about Managing Myalgic Encephalomyelitis (ME) compiled by ME Advocates Ireland (MEAI)
    • Questionnaires for Continual Assessment and Tracking Symptoms, Severities & Impact - De Paul Questionnaires and Bells Disability Scale
    • Films about ME 
    • Patient Documents such as Personal Care Plan and Needs Statement by ME Advocates Ireland (MEAI)
    • Notes on Testing compiled by ME Advocates Ireland (MEAI)
    • More useful Tools

 Creating an ME Accessible Healthcare Setting - Information Sheet for Doctors and other Healthcare Staff by ME Advocates Ireland (MEAI)

People with Myalgic Encephalomyelitis (ME) have a limited amount of energy and suffer from a post exertional response, i.e., PENE. Helping them conserve their energy and providing an ME- friendly environment will reduce the impact of attending essential medical appointments. See MEAI Information Sheet with tips for the healthcare provider to aid a person with ME attend their medical appointment/hospital. 

How ME is Diagnosed, from the International Consensus Criteria (ICC)

Myalgic Encephalomyelitis is an acquired neurological disease with multi-system dysfunctions. Pathological dysregulation of the nervous, immune and endocrine systems, with impaired cellular energy metabolism and ion transport are prominent features.
Although signs and symptoms are dynamically interactive and causally connected, the criteria are grouped by regions of pathophysiology to provide general focus.

How is ME Diagnosed
The symptoms of ME are numerous and can include but are not limited to the following:
A patient will meet the criteria for postexertional neuroimmune exhaustion (A), at least one symptom from three neurological impairment categories (B), at least one symptom from three immune/gastro-intestinal/genitourinary impairment categories (C), and at least one symptom from energy metabolism/transport impairments (D).
A. Postexertional neuroimmune exhaustion (PENE pen’-e): Compulsory
 This cardinal feature is a pathological inability to produce sufficient energy on demand with prominent symptoms primarily in the neuroimmune regions.

Characteristics are as follows:
1. Marked, rapid physical and/or cognitive fatigability in response to exertion, which may be minimal such as activities of daily living or simple mental tasks, can be debilitating and cause a relapse.
2. Postexertional symptom exacerbation:e.g.acute flu-like symptoms, pain and worsening of other symptoms.
3. Postexertional exhaustion may occur immediately after activity or be delayed by hours or days.
4. Recovery period is prolonged, usually taking 24h or longer. A relapse can last days, weeks or longer.
5. Low threshold of physical and mental fatigability (lack of stamina) results in a substantial reduction in pre-illness activity level.

B. Neurological impairments
At least one symptom from three of the following four symptom categories
1. Neurocognitive impairments
  a. Difficulty processing information: slowed thought, impaired concentration e.g. confusion, disorientation, cognitive overload, difficulty with making decisionsslowed speech, acquired or exertional dyslexia
  b. Short-term memory loss:e.gdifficulty remembering what one wanted to say, what one was saying, retrieving words, recalling informationpoor working memory
2. Pain
  a. Headaches:e.g. chronic, generalized headaches often involve aching of the eyes, behind the eyes or back of the head that may be associated with cervical muscle tension; migraine; tension headaches
  b. Significant pain can be experienced in muscles, muscle-tendon junctions, joints, abdomen or chest. It is noninflammatory in nature and often migrates. e.g. generalized hyperalgesiawidespread pain (may meet fibromyalgia criteria), myofascial or radiating pain
3. Sleep disturbance
  a. Disturbed sleep patterns:e.g. insomnia, prolonged sleep including naps, sleeping most of the day and being awake most of the night, frequent awakenings, awaking much earlier than before illness onset, vivid dreams/nightmares
  b. Unrefreshed sleep:e.g. awaken feeling exhausted regardless of duration of sleep, day-time sleepiness
4. Neurosensory, perceptual and motor disturbances
   a. Neurosensory and perceptual:e.ginability to focus vision, sensitivity to light, noise, vibration, odour, taste and touch; impaired depth perception
   b. Motor:e.g. muscle weakness, twitching, poor coordination, feeling unsteady on feet, ataxia

C. Immune, gastro-intestinal and genitourinary Impairments
At least one symptom from three of the following five symptom categories
1. Flu-like symptoms may be recurrent or chronic and typically activate or worsen with exertion.e.g. sore throat, sinusitis, cervical and/or axillary lymph nodes may enlarge or be tender on palpitation
2. Susceptibility to viral infections with prolonged recovery periods
3. Gastro-intestinal tract:e.g. nausea, abdominal pain, bloating, irritable bowel syndrome
4. Genitourinary: e.g. urinary urgency or frequency, nocturia
5. Sensitivities to food, medications, odours or chemicals

D. Energy production/transportation impairments: At least one symptom
1. Cardiovascular:e.g. inability to tolerate an upright position - orthostatic intolerance, neurally mediated hypotension, postural orthostatic tachycardia syndromepalpitations with or without cardiac arrhythmias, light-headedness/dizziness
2. Respiratory:e.g. air hunger, laboured breathing, fatigue of chest wall muscles
3. Loss of thermostatic stability:e.g. subnormal body temperature, marked diurnal fluctuations; sweating episodes, recurrent feelings of feverishness with or without low grade fever, cold extremities
4. Intolerance of extremes of temperature

Paediatric considerations
Symptoms may progress more slowly in children than in teenagers or adults. In addition to postexertional neuroimmune exhaustion, the most prominent symptoms tend to be neurological: headaches, cognitive impairments, and sleep disturbances.
1. Headaches: Severe or chronic headaches are often debilitating. Migraine may be accompanied by a rapid drop in temperature, shaking, vomiting, diarrhoea and severe weakness.
2. Neurocognitive impairments: Difficulty focusing eyes and reading are common. Children may become dyslexic, which may only be evident when fatigued. Slow processing of information makes it difficult to follow auditory instructions or take notes. All cognitive impairments worsen with physical or mental exertion. Young people will not be able to maintain a full school programme.
3. Pain may seem erratic and migrate quickly. Joint hypermobility is common.
Notes: Fluctuation and severity hierarchy of numerous prominent symptoms tend to vary more rapidly and dramatically than in adults.

Severe ME considerations
Severe ME, which includes those with severe, very severe and profound ME, sees patients suffering from a horrendous, disabling form of Myalgic Encephalomyelitis. These patients are isolated/confined to bed due to the severity of their symptoms and disabilities, and are often unable to leave their home even to seek medical care.]

Myalgic Encephalomyelitis:  International Consensus Criteria 2011

 - International Consensus Primer (ICP) 2012 

The International Consensus Primer (ICP) was written in 2012 to provide clinicians a one-stop, user-friendly reference for ME. It includes a concise summary of current pathophysiological findings upon which the International Consensus Criteria are based.  
A comprehensive clinical assessment and diagnostic worksheet enables clear and consistent diagnosis of adult and paediatric patients world-wide.  
The treatment and management guidelines offer a blueprint for a personalized, holistic approach to patient care, and include non-pharmaceutical and pharmaceutical suggestions. 
Patient self-help strategies provide recommendations for energy conservation, diet, and more.  
Educational considerations for children are also included. See the ICP here


Relevant ICP Content: 

Post-Exertional Neuroimmune Exhaustion (cardinal feature), Neurological Abnormalities,  Immune Impairments,  Energy Production and Ion Transport Impairments ...... pages 2-6

Clinical Assessment and Diagnosis 
Post-Exertional Neuroimmune Exhaustion (PENE pen׳-e) (compulsory), Neurological Impairments, Immune, Gastro-intestinal & Genitourinary Impairments, Energy Metabolism/Ion Transportation Impairments, Clinical & Physical assessments  .......pages 6-11

Lab Tests
Laboratory/Investigative Protocol: Diagnose by criteria. Confirm by laboratory and other investigations ......pages 11-12

Paediatric Considerations
Each child (all young people) will have his/her own unique combination of the ME criterial symptoms. The onset of ME in children often occurs around twelve years of age but it has been diagnosed in a child who was two years old ......pages 9 & 19


 - The Importance of Early Diagnosis 

Early Diagnosis is essential in ME which may lessen the severity and impact.
Early diagnosis should enable a comprehensive plan of management to be agreed between the patient and doctor which should cover symptom management and symptom relief, which may lessen the severity and impact.
NB: The 6-month waiting period before diagnosis is not required as per the ICC 2011.

 - PENE or Exertion Intolerance Response 

PENE is the compulsory and distinguishing feature of ME, referred to as Post Exertional Neuro-immune Exhaustion (PENE) by the International Consensus Criteria and Primer (also referred to as PEM by others which is less specific about what actually happens in ME as per the ICC)

Further distinguishing features of PENE include:
    • Immediate onset: symptom exacerbation may occur especially for people with Severe ME
    • Delayed onset: symptom exacerbation may occur 24 to 48 hours after exertion 
    • Variable and often prolonged period of recovery to baseline illness severity and symptoms. 
Patients may use language such as 'crash', 'setback', 'relapse', 'payback' to describe exertion intolerance, i.e., PENE. The DePaul PEM questionnaire may be helpful to establish if a patient is experiencing an exertion intolerance response, i.e., PENE. 

 - The DePaul Symptom & Severity, & PEM Questionnaires

Along with the Primer patients and doctors could use several questionnaires, which are based on research, to aid a diagnosis. These include the De Paul Symptom & Severity, PEM and Paedriatric questionnaires and the Bells Disability Scale. 
All questionnaires can also be used for management purposes following diagnosis to track impact of symptoms and severity, to identify new symptoms and keep a record.

  • Paediatric Questionnaires: 
Parent Form DSQ-Ped here
Child Form DSQ-Ped here


 - Bells Severity Scale

A good scale that could be used along with the categories Mild, Moderate, Severe, Very Severe, Profound, to determine near exact range, is the Bell's Disability Scale. Different people suffer in different ways but the scale gives an idea of the level of disability. It may be the case that it doesn't reflect your severity exactly but it is a useful tool for some patients to get across the extent of their ME severity to medics & others.  


 - Simple Alternative Questionnaire to determine if the Patient Meets the ICC Criteria

An online questionnaire was developed by Schweizerische Gesellschaft für ME, a patient association in Switzerland, to help determine whether the diagnosis of ME according to the International Consensus Criteria (ICC) is applicable to a patient. This tool could be used as an easier/shorter alternative to the De Paul symptom and severity questionnaires by the doctor as well as the patient: ICC Questionnaire

For Managing & Treating 

 - International Consensus Primer 
The pathophysiology of ME and laboratory findings must be reflected in all treatment/management programs. Adverse reaction to exertion accompanied by a prolonged recovery period must be respected and accommodated. 
All health-care personnel can become sufficiently knowledgeable to manage ME following diagnosis by adopting and using the Primer for Medical Practitioners ......see pages 13-19

 - Information about Managing Myalgic Encephalomyelitis (ME) 

Information compiled by ME Advocates Ireland (MEAI), which includes notes on Energy and Step by Step Symptom Management as well as notes on Early Diagnosis, Pacing (activity management) & Resting, Energy Envelope Technique, Medical Treatments, other treatments and management strategies e.g., managing sleep & diet; using a Heart Rate Monitor, and managing relapses and adrenaline surges in Myalgic Encephalomyelitis (ME).

As said previously early diagnosis is essential in ME which may lessen the severity and impact. Early diagnosis should enable a comprehensive plan of management to be agreed between the patient and doctor which should cover symptom management and symptom relief, which may lessen the severity and impact. 

Developing an agreed plan of appropriate management should prevent inappropriate or harmful approaches taking place - e.g. attempting to ‘work through illness’ - and should therefore reduce the risk of a more prolonged and severe illness occurring.

We briefly refer to two important management techniques here: - 


Energy management  
Energy management strategies of pacing and resting for those with mild, and moderate ME, and some people within the severe category, are crucial self-management strategies for ME as they minimise harm caused when patients undertake activity beyond their capacity and trigger a post-exertional response i.e., PENE, also referred to as PEM by others. 
The aim of pacing is to minimise or avoid triggering PENE, by keeping physical and cognitive activity within the available energy reserves, often referred to as the energy envelope.  

Step by Step Symptom Management 
ME patients typically present with a multitude of symptoms indicating a multi-system disorder. And individuals have different clusters of symptoms. This can be overwhelming for both the clinician and patient to work through. However, by taking a structured, step by step approach, health professionals can work with the patient to rank their symptoms and address them one at a time, starting with the most debilitating/disruptive. This can be done using the De Paul Symptom and Severity questionnaire or the doctor and patient can discuss the patients most debilitating and severe symptoms.
Although there are no universally approved treatments for the underlying cause of ME, medication may help alleviate some symptoms (e.g. pain, orthostatic intolerance, insomnia). 
ME patients are typically sensitive to pharmaceuticals, so it is advisable to start on low doses and titrate up slowly. 
More on the these important management strategies and others via links below: 


Managing and Treating Myalgic Encephalomyelitis

 - Questionnaires for Continual Assessment & Tracking Symptoms, Severities & Impact

Patients could use several questionnaires to track symptoms and severities following diagnosis and to identify any new symptoms. These completed questionnaires could be used for your personal records as well as at future appointments with your doctor or other healthcare staff. They are the same questionnaires suggested for diagnosis, i.e., the De Paul Symptom & Severity, PEM and Paedriatric questionnaires (parent and child) and the Bells Disability Scale. 

  • Paediatric Questionnaires: 
Parent Form DSQ-Ped here
Child Form DSQ-Ped here

  • Bells Disability & Severity Scale 

 - Educational Films

Films about various aspects of ME including Severe ME, from Dialogues for ME, by Natalie Bolton & Josh Biggs, produced with a Wellcome Public Engagement Fund Award which are useful to inform doctors or other healthcare stafff who are not knowledgeable about ME.
The films would be helpful for the patient who does not have the capacity to explain their illness to others because of the debilitating nature and severity of ME, and the need to stay within one's energy limits to avoid PENE.

  •  Activity and Energy Management - Pacing 

 - Patient Documents To Consider

Seldom do two ME patients present with the same set of symptoms and severities, a person with ME has a unique set of symptoms and fluctuating severities, as well as their own unique response to exertion, and response to medications, With that in mind it is important to know that each patient that a doctor or other healthcare staff sees will have their own individual needs.
Included below are two sample documents which may be completed by the patient to outline individual needs. They are carried by some patients who attend in a healthcare setting such as a hospital or in ED and include important in-patient information and discharge planning notes, i.e., Personal Care Plan and Needs Statement


Personal Care Plan
    • would outline the ME patient’s illness and needs
    • would outline the difficulties the patient has being in the unfamiliar environment of a hospital where there are many potential ‘harms’ to their health,
    • would warn medics of other difficulties that might come about,
    • would be an individual file on each patient put together by the patient and/or carer, together with information added from the patient’s primary carer and the specialist consultants the patient attends,
    • would include strict protocols to make arrival, admission, stay, and discharge, as well as medical assessments and procedures as easy as possible on the person with Severe ME,
    • would go some way to help prevent relapse, paralysis, and other horrific symptoms, 
    • would be different and personal to the individual patient's needs.


It is important to remember that the ME patient may carry their care plan file for any hospital admission including ED, or their plan may be in their medical file held by a doctor. 


Please see sample Personal Care Plan

Needs Statement 
Based on the HSE’s 'National Guidelines on Accessible Health & Social Care Services' (2014), the patient's 'Needs Statement' can be used during a hospital admission or other care setting, when the patient is faced with the problem of how to explain ME & their individual needs to healthcare staff. 
Please see sample My Needs Statement

 - More Notes on Testing compiled by ME Advocates Ireland (MEAI)

Further to the tests to be done, as suggested in the ICP, there is further information re testing in post by ME Advocates Ireland (MEAI) here 

  - More Useful Tools 
  • Useful Information Sheet
  • Consent To Treatment Statement & Form


Useful Information Sheet 


Consent to Treatment Documents

Consent to Treatment Statement
Drs Code of Ethics and the HSE’s National Healthcare Charter make clear informed consent is required before any treatment/medication can be given.
‘Why are you consenting to be seen by doctors who do not believe ME exists?
You could make a Limitation of Consent statement in writing, sign it, get the signature witnessed, dated, copy to GP and any clinic to which you are referred and always take on the day of an appointment/surgery/other as well.
Unless it is a doctor you know and trust who has satisfied you that he or she regards ME as a physical illness, you could start every consultation by asking them if they have read it, and agree, and that they confirm they will see you and treat you in accordance with it.
End of gaslighting, end of harmful practices.
The magic words are ‘I do not consent ‘ ie to being seen or treated by any doctor or health professional who does not regard ME (or my symptoms diagnosed on x date by doc y as ME) as a physical, neurological disease with physical origins.
I do not consent to being seen by …. who regards ME as psychosomatic, psychological, psychiatric, MUS, a somatisation disorder or FND or similar.’
If they do not comply they are working without your consent.
Complete the document to suit you, then sign, print name, date and ask someone to witness your signature by signing, printing their name and adding their address or job.
There are two further options, if you are concerned that at some point in the future if you become Very Severe a doctor may try to get you sectioned in a psychiatric ward.
In that case you might want your doctor to sign to say that he regards you as competent to make decisions about your medical care, and you can add that this is to remain in your notes to stand in future until or unless you revoke it in writing.
The name and address of a solicitor is useful in case of questions, but you could simply ask your solicitor to witness your signature.
Then copy document to surgery and clinics and keep one in your own file to take with you if you go into hospital.
The Consent to Treatment Statement may be adapted for personal use.


Consent to Treatment Statement Template here.

Consent to Treatment Form & Guidance
The article via link below by Valerie Eliot Smith provides a useful Consent Form template but it needs to be adapted for the HSE & Irish health services.
The HSE has a Consent Policy so the template Consent Form can be revised with reference to that policy.
The useful template is included below for you if you have an immediate need but it needs:
a) Irish own clinical guidance reflecting Irish health services and experiences
b) Irish Limitation of Consent forms which reference HSE, Children’s Hospital Ireland and other Voluntary Hospital Group consent policies.
It is a useful starter for you if you need protection urgently.
Limitation of Consent to Treatment Form template offers an example of how to communicate concerns about being forced into treatment by medics who are not familiar with ME.

Consultants and other Healthcare Practitioners

It may be necessary to use most of the above materials to help you communicate with specialists and/or other healthcare practitioners your doctor refers you to, to help them to understand the reality of Myalgic Encephalomyelitis (ME) and your individual healthcare needs.

ME Specialists in Ireland

There are two private consultants in Ireland with an interest in ME who treat people with the illness, one is Dublin based and the other is in Co Roscommon. The Roscommon specialist may see people in his catchment area via HSE. Please contact ME Advocates Ireland (MEAI) for further information at

Myalgic Encephalomyelitis (ME) is classified as a neurological illness since 1969 by the World Health Organisation (WHO) ICD G93.3

Myalgic Encephalomyelitis (ME) Classifications:

  • WHO Classification ICD 10 G93.3 classified as a Neurological disorder

  • WHO Classification ICD 11 8E49 classified as a Neurological disorder 

  • SNOMED Classification SCTID: 118940003 classified as a disorder of the nervous system 

  • NASS (HRB) G93.3

Information above was compiled by ME Advocates Ireland (MEAI) to aid patients to communicate with their doctor and other healthcare practitioners

Disclaimer: The information in this post is for general information purposes only. While we endeavour to keep the information up to date and correct, we make no representations or warranties of any kind, express or implied, about the completeness, accuracy, reliability, suitability or availability with respect to the post or the information, products, services, etc contained in the post for any purpose. Any reliance you place on such information is therefore strictly at your own risk.The suitability of any solution is totally dependent on the individual. It is strongly recommended to seek professional advice and assistance. 

No comments:

Post a Comment