|Image behind our script by Jennifer Walker, Texas - her art is a medium through which she can convey what it's like to physically & emotionally cope with chronic pain|
There are several levels of severity in ME, ranging from mild to profound ME and which include mild, moderate, severe, very severe and profound ME. Within each range of severity are other levels which means that within the mild range of ME there may be significant impact on an individual’s health. Severe to very severe ME sufferers are profoundly affected. They can be completely immobile, lying still in darkened rooms, requiring help with their basic needs.
People with ME can experience debilitating pain, inability to be active, lack of energy (ME is an inability to properly generate energy which prevents sufferers from being active mentally or physically), cognitive difficulties, multiple sensitivities, a range of other symptoms associated with post-exertional neuroimmune exhaustion (PENE) - the body and brain’s inability to recover after using even small amounts of energy, and marked fluctuation of symptom severity from day to day or hour to hour.
The physical symptoms of ME can be as disabling as multiple sclerosis, systemic lupus, rheumatoid arthritis, congestive heart failure and other chronic conditions. Research shows that people with ME score lower overall on health-related quality of life tests than most other chronic conditions.
Very few people make good progress or recover, manycan remain ill for a number of years and may not get better. Feedback shows that those who experience recovery and remission may relapse so it may always be necessary to manage the illness to avoid relapse. Feedback shows us that people who experience remission don’t go back to complete full health the way they felt before they became ill, but they do recover sufficiently to lead a fairly fulfilling life.
A few important points about ME before we look at the symptoms in ME.
- Myalgic Encephalomyelitis (ME) is a severely debilitating disease affecting millions of people around the world. Prevalence: 0.4 – 1%. ME affects an estimated 10,000 -19,000* people in Ireland; 250,000 people in the UK.
- ME is a physical illness that is defined by the World Health Organisation (G93.3) as neurological. (The HRB's NASS use the WHO code G93.3)
- There is no formal collation of numbers diagnosed with ME so we don't have official figures.
- Despite the high numbers suffering from ME in Ireland there are no HSE ME Clinical Guidelines which means that healthcare for those with ME can be non existant or inappropriate.
- A lack of understanding and awareness about ME means patients can experience disbelief, discrimination, and gaslighting from friends and family, and from health and community services.
- There is much discussion about the underlying cause of ME, about treatments and what does/doesn’t work. There is currently no single diagnostic tool nor drug treatment directed specifically at ME, treatment of some of a person's individual symptoms is usually how ME is managed as well as pacing and resting. Because of the complexity of ME, its fluctuating nature and the wide range of symptoms, different things work for different people. For those with severe ME complete rest and stillness is necessary, pacing is not a management option and currently available treatments of little benefit. Multiple sensitivities in severe ME may cause harm and it may not be always possible to prevent certain sensitivities causing harm.
- Prognosis: Currently there is no known cure. Early intervention and appropriate treatment strategies may lessen severity of symptoms. Restoration to full pre-morbid health and function is rare. Prognosis for an individual cannot be predicted with certainty. Paediatric: Children can be very severely afflicted. Children with less severe symptoms are more likely to go into remission than adults.
Symptoms in Myalgic Encephalomyelitis (ME)
Research shows, due to the severity of symptoms, 75% of people with ME are unable to work and 25-29% are unable to leave their home or bedroom due to profound symptoms. ME is more debilitating than many chronic illnesses including multiple sclerosis, chronic renal failure, lung cancer, stroke, and type 2 diabetes.
Symptoms can fluctuate and vary in severity. Individual symptoms vary widely in severity and people may have some symptoms more severely than others. ME can be unpredictable - symptoms may come and go - some symptoms may disappear and new symptoms may come along, or there may be changes in how they improve or how bad they are over time.
A person's experience with ME and symptoms associated with ME can vary enormously. Not everyone will experience the same symptoms so it's important not to compare yourself or someone who has ME to another person who has ME.
Not everyone will experience the same symptoms so it's important not to compare yourself or someone who has ME to another person who has ME.
Symptom management should not be delayed until a diagnosis is established. Management should be tailored to the specific symptoms the person has and be aimed at minimising the impact of daily life and activities on symptoms and exertional response, i.e., PENE.
NB: The presence or absence of ‘fatigue’ is largely irrelevant in determining an ME diagnosis.
List of Potential Symptoms/Features in ME
Here is a list of potential symptoms that can occur with ME, including symptoms as described by those who responded to a question posed by ME advocate/carer/writer Greg Crowhurst and his wife Linda when they looked for more information and recognition of the true symptoms of ME and people’s actual experience of the illness.
Post-Exertional Neuro Immune Exhaustion (PENE), the cardinal feature of ME as per the International Consensus Criteria (ICC). PENE is sometimes referred to as ‘payback’ / ‘crash’ / ‘relapse’/’PEM’
Lack of energy most of the time which feels different from ordinary fatigue. Ability to make energy at cell level is lost.
Chronic nerve pain
Global wide-spread pain
Jolts of pain
Increased sensitivity to pain
Sore throat (recurrent)
Twitching muscles or cramps
Abdominal pain (stomach or bowel problems)
Costochondritis (inflamed chest wall)
Skin crawling sensations
Eye pain, back of eyes pain
Vein inflammation pain
Severe menstrual pain
Generalised head pain
Problems concentrating, e.g. an inability to follow conversation
Lack of ability to process information
Loss of ability to plan
Loss of ability to think
Loss of memory
Poor short term memory
Loss of speech
Not recognising faces
Inability to understand
Inability to identify left from right
Switching letters round in words
Difficulty retaining information
Unable to hold two-way conversation
Not fully conscious
Inability to read (without a learning issue present)
Inability to write (without a learning issue present)
Problems with thinking
Reduced attention span
Inability to or organise thoughts and/or speech
Insufficient increase in blood pressure on exertion
Reduced blood flow
Pins and needles
Shortness of breath
Multiple sensitivities: (intolerant to light/sound/smell/movement/touch/food/materials/other)
Hyperacusis (noise sensitivity)
Photophobia (light sensitivity)
Hypersensitivity to smells
Hyperesthesia (touch sensitivity)
Inability to focus
Impaired depth perception
Poor spatial recognition
Fuzzy/ blurred vision
Double letter vision
Dry eyes (do not hold tear film)
Flashing eyes (open or shut)
Seeing pinpoints of light in the dark
Elevated oxidative stress markers, ncreased with exertion
Loss of appetite
Alternating diarrhoea and constipation
Food Allergies (multiple)
Gut and bowel issues
(some of the above symptoms may lead to life threatening malnutrition in severe ME cases)
Excessive urination at night
Mercury intolerance (silver fillings)
Temperature control problems/ dysregulation & Loss of thermostatic stability:
Feeling extreme cold, cold extremities
Abnormal body temperature
Sleep disruption - frequent awakening
Inability to stay awake
Difficulty getting to sleep
Waking for long periods
Sleep reversal (e.g. sleeping from 4am till noon)
Tender Lymph nodes
Susceptible to infection
Susceptible to repeated infections
Muscle spasms (shaking) including in the throat)
Violent, uncontrollable ‘tics’ in limbs
Lack of strength
Hyperacusis (sensitivity to noise sometimes alternating with deafness or normal hearing)
Tinnitus (constant sound in the ears)
Feeling of toxicity
Loss of sensation
Paraesthesiae: numbness or tingling in the extremeties
Pins & needles
Loss of proprioception
Extreme excess mucous
Hypoglycaemia leading to fainting attacks
Low and/or high blood pressure
Loss of equilibrium
Loss of balance
Inability to stand
Inability to walk
Inability to sit
Poor/loss of co-ordination
Raynaud’s phenomenon (poor circulation in fingers and toes)
B12 deficiency is common
Vitamin D deficiency is common
Inability to hold things
Inability to lift things
Severe sensory issues
Loss of touch
Loss of taste
Lack of stamina
Disabling fatigue* (see more re fatigue below)
Compromised immune system
Slow recovery from colds/flu
Easily dislocated joints
Compromised immune system
Discomfort all over
Feeling generally unwell (malaise)
Feeling generally exhausted, exhaustion reached more rapidly
Within each symptom there may be a wide spectrum of severity, from mild to moderate to severe to very severe and profound. There may be marked fluctuation of symptom severity from day to day or hour to hour.
You or a person with ME may only experience some of the symptoms listed above, and not all at the same time. Everyone with ME has a different range of symptoms and severities.
We are not medics but our advice is to always get new or worsening symptoms checked by your doctor so that they can assess whether the symptoms are part of your ME or are caused by something different.
As before, treat individual symptoms as far as possible, looking at the worst symptoms first (eg. pain, sleep issues, restless legs orthostatic intolerance, irritable bowel syndrome, migraine, headaches, etc).
Because of the complexity of ME - its fluctuating nature and the broad range of symptoms, different management strategies work for different people. Not all prescription drugs/over the counter medicines/supplements work in the same way for everyone so it may be a case of trial and error getting the drug/medicine/supplement and dosage right for an individual. Some people may be intolerant to drugs/medicines/supplements and may have to look into alternative therapies.
For the millions of patients suffering from the intense symptoms of ME additional research is needed to understand the disease process, identify biomarkers for diagnostic criteria and determine appropriate treatment for care.
How the person with Severe/Very Severe/Profound ME Feels (as well as suffering from the above debilitating symptoms/features): -
• Totally dependent
• Extreme discomfort
• Trapped inside a numb, empty shell of a body
• No possible movement
• Total paralysis
• Absolute pain
• Profoundly hypersensitive even to fabrics, e.g. clothes and bed linen
• Blank mind
• Look asleep but totally aware and conscious
• Everything is out of reach
• Completely unable to communicate
• Cannot sit up/stand/move or walk
• Extremely dizzy
• Struggles to breath
• Eating is difficult so tube fed
• Cannot comprehend information
• Light hurts and noise damages
• Smells set the person back and they can feel so unwell just from someone’s perfume
• Zero energy to function
• Lives in a fog of inability.
* The Problem with ‘Fatigue’
People in the ME community have different severities of ME- Mild, Moderate, Severe, Very Severe, Profound. Within each symptom suffered there is a fluctuating range of severity where symptoms can be either mild, or moderate or severe, or very severe or profound. No matter what the degree of severity people with ME do not describe themselves as being fatigued and they do not relate to ‘fatigue’ as their primary symptom. The presence or absence of ‘fatigue’ is largely irrelevant in determining an ME diagnosis.
There is a concern that the real symptoms of ME (mild to profound) are being covered up under the term fatigue, or ignored.
According to the International Consensus Criteria (ICC) 2011:
"Using ‘fatigue’ as a name of a disease gives it exclusive emphasis and has been the most confusing and misused criterion. No other fatiguing disease has ‘chronic fatigue’ attached to its name – e.g., cancer/chronic fatigue, multiple sclerosis/chronic fatigue – except ME. Fatigue in other conditions is usually proportional to effort or duration with a quick recovery and will recur to the same extent with the same effort or duration that same or next day."
A doctor needs to ask about the symptoms suffered by the person with ME to learn how often they occur, how bad they are, and how long they have lasted. It is also important for doctors to talk with patients about how the symptoms affect their lives.
As well as a symptom checklist, a thorough clinical evaluation involving history taking, physical examination and investigations should be carried out to exclude other medical conditions that can cause ME-like symptoms.
Doctors need to ask questions such as: -
- What are you able to do now?
- How does it compare to what you were able to do before?
- How long have you felt this way?
- Can you remember when your symptoms began? Was it a sudden/gradual onset?
- What makes you feel worse? What helps you feel better?
- What happens when you try to do activities that are now difficult for you?
- What symptoms keep you from doing what you want to do?
- What symptoms keep you from doing what you need to do, e.g., your job?
- International Consensus Primer (ICP):
The ICC and ICP encompass symptoms that capture the unique characteristics of ME. Tthe ICP is an effective tool to help medical practitioners diagnose and manage ME. It also offers thorough screening guidance to help identify other treatable conditions. Operational notes following criterial categories clarify how symptoms may be expressed and interpreted. Grouping symptoms by regions of pathogenesis provides focus.
For Diagnosis see the 2012 page 7, 8 (ICP),
For Clinical Assessment and Diagnostic Worksheet see ICP pages 10-12
For Personalised Management and Treatment see ICP pages 13 - 18
- Symptom and Severity Questionnaires
The De Paul Symptom & Severity, and PEM Questionnaires are useful tools to use alongside the International Consensus Primer (ICP) to evidence and track your symptoms and symptom severities, and to show your doctors or anyone who you feel should see your symptom profiles. These tools can be printed, then completed and handed to the doctor at an appointment, or emailed, you could ask that they are kept in your medical file.
See links to those questionnaires below.
De Paul Symptom and Severity Questionnaire: DSQ-2
De Paul Post Exertional Questionnaire (short form): DSQ-PEM
De Paul Post Exertional Questionnaire (long form): DPEMQ
Symptoms may progress more slowly in children than in teenagers or adults. In addition to post exertional 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.
- International Consensus Primer:
Prompt treatment can lessen the impact of ME in some cases. Monitor the child’s health on an ongoing basis. Management is similar to adults. Great caution is required in prescribing any medications - use low dosage. Involvement of family members is essential. They monitor the child’s health and are the primary care givers.
For management and treatment see the International Consensus Primer 2012 (ICP) page 9
For paediatric personalized treatment see page 19.
- Paediatric Questionnaires:
The De Paul Symptom & Severity Paediatric Questionnaires are useful tools to use alongside the International Consensus Primer (ICP) to evidence and track your child's symptoms and symptom severities, and to show doctors or anyone who you feel should see your child's symptom profiles. These tools can be printed, then completed and handed to the doctor at an appointment, or emailed, you could ask that they are kept in your child's medical file.
DePaul Symptom Questionnaire – Pediatric Screening Questionnaire (DSQ-PSQ):
DSQ-Ped Parent Form
DSQ-Ped Child Form
‘Each child (all young people) will have his/her own unique combination of the ME criteria 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. More than one member of a family may have ME or other neurological diseases.’
The long symptom list further above and the How the Person with Severe ME May Feel' list is based on feedback put together by Greg Crowhurst following a study on symptoms in severe ME. (additional sypmtoms have been added from our own feedback and elsewhere, e.g. the ICC).
Thanks to Greg and his wife Linda for their valuable insight to severe ME and the horrendous features associated with severe ME.
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