Friday, 6 May 2022

Diagnosis of Myalgic Encephalomyelitis (ME) Part 1 - Tools for Diagnosis

Diagnosis Part 1

Myalgic Encephalomyelitis (ME) is a distinct, recognisable disease entity that is not difficult to diagnose and can in fact be diagnosed relatively early in the course of the disease, providing that the doctor has some experience with ME. 
As with a wide variety of illnesses; lupus and multiple sclerosis (MS), for example, there is as yet no single test which can diagnose ME. 
Therefore, ME must instead be diagnosed by a combination of: taking a detailed medical history to rule out other possible causes of symptoms, noting the type and severity of symptoms and other characteristics of the illness, the type of onset of the symptoms, acute or sudden onset of symptoms is seen in ME though feedback tells us that others experience gradual onset. 

ME can be diagnosed within just a few consultations, if the doctor has some experience with ME.

The presence or absence of ‘fatigue’ is largely irrelevant in determining an ME diagnosis. 

An accurate diagnosis can be made by a doctor using diagnostic criteria specifically written for and about ME such as the International Consensus Primer (ICP) 2012.

ME isn’t difficult to diagnose, unfortunately we have a healthcare system in Ireland which doesn’t know much about ME so it can take a long time to get a diagnosis.

Getting an accurate ME diagnosis requires proper understanding of ME and is based on a detailed clinical history, physical examination, and some laboratory investigations

Of course the common story is that once a diagnosis happens there are no Irish guidelines/policies to management and treatment which means a GP/Consultant can give you a diagnosis but may not have the information to follow up and advise you re management and treatment. 
However, there is advice available re management and treatments, the best information comes from the expert patient community, and more formal information from the ICC and ICP as well as patient organisations and support groups.


Image by MEAI

Essential Steps & Resources for a Making a Diagnosis of ME


Questionnaires & Tools to Assess ME Symptoms & Severity

While symptoms vary from patient to patient there are a few resources available to aid a proper understanding and to confirm a diagnosis, documents that can be used to highlight individual symptoms and disability. There are many general self-report tools available online but we feel that the ones we suggest below are the best available. These include

·        the best international criteria documents currently available (ICC & ICP)

·        questionnaires based on research (DePaul University)

·        a Disability Scale (Bells)


International Criteria

For diagnosis and management use the International Consensus Criteria, ICC-ME 2011 & the International Consensus Primer, ICP-ME 2012, both specifically written about and for ME, designed to assess the unique combination of symptoms found in ME.
Links to those below: -


The ICC alone is not enough to confirm an ME diagnosis, the next step is to confirm the ME diagnosis. The International Consensus Primer guides doctors to diagnose, treat and rule out other diseases. It is a booklet prepared by ME experts to guide doctors in treating those who fit the ICC. The IC Primer is a physician guide that includes immune dysfunction, neurological issues, and cardiac abnormalities that are often overlooked in other information.



Symptom Questionnaire (DePaul Symptom Questionnaire DSQ)

The DePaul Symptom Questionnaire (DSQ) is a self-report assessment created by Leonard Jason at DePaul University, Chicago, Illinois, US. With 54 questions in total, the DSQ Symptom Questionnaire assesses key symptoms of ME such as post-exertional malaise, sleep, pain, neurological/cognitive impairments and autonomic, neuroendocrine and immune symptoms. At each item, participants have to rate the frequency and severity of the symptom on a scale from 0 to 4. You can put a score for how frequently you have each symptom and how severe it is. The questionnaire is based on research so useful to print out to complete and shown to your GP/Consultant/other.

As much as anything the questionnaire can teach your GP what ME is and you might realise things you think aren’t ME actually are!

This is the link to the DSQ2 symptom questionnaire.



PEM Questionnaire (De Paul DSQ PEM Questionnaire - DPEMQ)

Post Exertional Neuroimmune Exhaustion (PENE) is a key symptom of Myalgic Encephalomyelitis (ME). PENE is referred to as PEM by others. The PEM questionnaire by De Paul is a questionnaire on the post exertional response, i.e., PEM (PENE as per the ICC), an essential criterion for an ME diagnosis. See more on PENE (PEM) further on in this guide.
By answering the questions, you get an idea of how ‘activity’, anything you do physically, cognitively, emotionally, affects you and what your individual post exertional response is, i.e., what symptoms occur and increase. Every person with ME is different. The post exertional response for a lot of people might not occur straight away and tends to be delayed 24 hours or 48 hours after activity. The questionnaire includes key indicators that show within answering a set of questions that it sounds like ME.

This is the link to the De Paul Post Exertional Questionnaire.


Useful link to all DePaul questionnaires, adult & paediatric including questionnaires in different languages here


Bells Disability Scale
We tend to refer to the different severities of ME as Mild, Moderate, Severe, Very Severe, Profound - we refer to those as general categories which really have ranges within themselves ie Mild has its own range, as does Moderate and so on.
A good scale that could be used along with these categories to determine near exact range is the Bells Disability Scale for example, see below. Different people suffer in different ways but the scale gives an idea of the level of disability.


•           It can be used by both Patient and Doctor to monitor progress/relapses of ME over time. 


•           Tick which descriptor best describes you today.

Bells Disability Scale



100     No symptoms at rest; no symptoms with exercise; normal overall activity level; able to work fulltime without difficulty.       

90      No symptoms at rest; mild symptoms with activity; normal overall activity level; able to work full-time without difficulty.      

80      Mild symptoms at rest; symptoms worsened by exertion; minimal activity restriction noted for activities requiring exertion only; able to work full-time with difficulty in jobs requiring exertion.        

70      Mild symptoms at rest; some daily activity limitation clearly noted; overall functioning close to 90% of expected except for activities requiring exertion; able to work full-time with difficulty.       

60      Mild to moderate symptoms at rest; daily activity limitation clearly noted; overall functioning 70% - 90%; unable to work full-time in jobs requiring physical labour, but able to work full-time in light activities if hours flexible.              

50      Moderate symptoms at rest; moderate to severe symptoms with exercise or activity; overall activity level reduced to 70% of expected; unable to perform strenuous duties, but able to perform light duty or desk work 4-5 hours a day, but requires rest periods.      

40      Moderate symptoms at rest; moderate to severe symptoms with exercise or activity; overall level reduced to 50% - 70% of expected; not confined to house; unable to perform strenuous duties; able to perform light duty or desk work 3-4 hours a day but requires rest periods.              

30      Moderate to severe symptoms at rest; severe symptoms with any exercise; overall activity level reduced to 50% of expected; usually confined to house; unable to perform strenuous tasks; able to perform desk work 2-3 hours a day, but requires rest periods.     

20      Moderate to severe symptoms at rest; severe symptoms with any exercise; overall activity level reduced to 30% - 50% of expected; unable to leave house except rarely; confined to bed most of day; unable to concentrate for more than 1 hour a day.            

10      Severe symptoms at rest; bedridden the majority of the time; no travel outside of the house; marked cognitive symptoms preventing concentration.              

0        Severe symptoms on a continuous basis; bedridden constantly; unable to care for self           


Please see more about the Bells Disability Scale and the full Bells Disability scale here 


More Useful Tools for Diagnosis

Patient Doctor Check List Based on the ICC

Patient Doctor Check List Based on ME- International Consensus Criteria (ICC) from GAME - ICC, thanks to Wendy Boutillier here

Simple Tool 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

Conditions to Rule Out Information Sheet (by ME International US)

Part of the process of confirming an ME diagnosis is to rule out other diseases. Too often patients discover after getting an ME label that a treatable illness had been overlooked. ME International's Conditions to Rule Out handout has useful patient information regarding how to help diagnose ME.  

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 


Further Reading

  • Diagnosis of Myalgic Encephalomyelitis (ME) Part 2 here

  • Diagnosis of Myalgic Encephalomyelitis (ME) Part 3 here

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. 

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