Saturday 7 May 2022

Diagnosis of Myalgic Encephalomyelitis (ME) Part 2 - Supporting a Diagnosis

“Doctors, please learn how to correctly diagnose ME”

Supporting a Diagnosis in ME in the doctors surgery

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.

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

Scientists have not yet found biological abnormalities in ME that are specific enough to be used as a single diagnostic test, even though abnormalities in the brain and the immune system show very clearly that Myalgic Encephalomyelitis is a serious, systemic illness. (see ICC 2011) There is also the issue of accommodating various subgroups in the global ME community. ME is diagnosed by excluding other illnesses that share many of the same symptoms. The earlier ME is diagnosed, the sooner symptom management and support can begin.

Diagnosis of Myalgic Encephalomyelitis (ME) - a clinical diagnosis based on characteristic symptoms and clinical features

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.

Pain

Persistent pain

Chronic nerve pain

Crushing pain

Global wide-spread pain

Muscle pain

Joint pain

Jolts of pain

Increased sensitivity to pain

Painful feet

Glandular pain

Sore throat (recurrent)

Hoarseness

Swollen glands

TMJ

Trigeminal neuralgia

Occipital neuralgia

Chest pain

Back pain

Twitching muscles or cramps

Abdominal pain (stomach or bowel problems)

Costochondritis (inflamed chest wall)

Skin crawling sensations

Burning itching

Stabbing pain

Aching

Skin pain

Eye pain, back of eyes pain

Vein inflammation pain

Severe menstrual pain

Swelling

Inflammation

Cramps

Migraine

Generalised head pain

Neck pain

Cognitive dysfunction:

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

General forgetfulness

Loss of speech

Slowed Speech

Slurring

Forgetting names

Not recognising faces

Word loss

Inability to understand

Inability to identify left from right

Switching letters round in words

Difficulty retaining information

Mental Confusion

Difficulty concentrating

Unable to hold two-way conversation

Disorientation

Not fully conscious

Inability to read (without a learning issue present)

Inability to write (without a learning issue present)

Problems with thinking

Cognitive overload

Reduced attention span

Word-finding difficulties

Inability to or organise thoughts and/or speech

Cardiac issues:

Palpitations

Cardiomyopathy

Bradycardia

Tachycardia

Orthostatic intolerance

POTS

Insufficient increase in blood pressure on exertion

Reduced blood flow

Arterial elasticity dysfunction

Reduced heart rate variability during sleep suggests a pervasive state of nocturnal sympathetic hyper-vigilance and may contribute to poor sleep quality

Vascular abnormalities suggest there is insufficient circulating blood volume in the brain when in an upright position, and blood may pool in the extremities.

Respiratory issues

Respiratory depression

Air hunger

Chest pain

Laboured breathing

Breathing difficulty

Pins and needles

Oxygen depletion

Shortness of breath

Multiple sensitivities (intolerance to light/sound/smell/movement/touch/food/materials/other)

Hyperacusis (noise sensitivity)

Photophobia (light sensitivity)

Hypersensitivity to smells

Hyperesthesia (touch sensitivity)

Motion sensitivity

Chemical sensitivity

Drug sensitivity

Food sensitivity

Alcohol sensitivity/intolerance

Materials sensitivity/intolerance

Vibration intolerance

Visual disturbances

Staring

Inability to focus

Impaired depth perception

Poor spatial recognition

Fuzzy/ blurred vision

Double letter vision

Tunnel vision

Eye pain

Dry eyes (do not hold tear film)

Itching eyes

Burning eyes

Flashing eyes (open or shut)

Seeing pinpoints of light in the dark

Paralysis

Total paralysis

Partial paralysis

Channelopathy

Elevated oxidative stress markers, increases with exertion

Gastrointestinal Issues

Loss of appetite

Indigestion

Excessive wind/bloating

Stomach Cramps

Alternating diarrhoea and constipation

Incontinence

Nausea

Vomiting

Food Allergies (multiple)

Gastric issues

Swallowing difficulties

Choking

Acid reflux

IBS

Gut and bowel issues

Food sensitivity

Malabsorption issues

Weight loss

Hypoglycaemia

(some of the above symptoms may lead to life threatening malnutrition in severe ME cases)

Genitourinary issues

Urinary urgency

Urinary frequency

Excessive urination at night

Dental issues

Mercury intolerance (silver fillings)

Temperature control problems/ dysregulation & Loss of thermostatic stability

Sweating profusely

Feeling feverish

Feeling extreme cold, cold extremities

Abnormal body temperature

Temperature fluctuations

Heat intolerance

Cold Intolerance

Poor Circulation

Sleep difficulties

Hypersomnia

Lucid dreaming

Insomnia

Sleep disruption - frequent awakening

Unrefreshing sleep

Sleep apnea

Nightmares

Inability to stay awake

Difficulty getting to sleep

Waking for long periods

Restless sleep

Sleep reversal (e.g. sleeping from 4am till noon)

Flu-like symptoms

Sore throat

Tender Lymph nodes

Susceptible to infection

Susceptible to repeated infections

Slow recovery

More symptoms/features as reported by patients

Tingling

Peripheral neuropathy

Tremor

Muscle spasms (shaking) including in the throat)

Twitching

Violent, uncontrollable ‘tics’ in limbs

Restless legs

Muscle wasting

Lack of strength

Heavy limbs

Muscle weakness

Hyperacusis (sensitivity to noise sometimes alternating with deafness or normal hearing)

Tinnitus (constant sound in the ears)

Feeling of toxicity

Loss of sensation

Numbness or tingling in the extremeties

Pins & needles

Loss of proprioception

Sinus problems

Extreme excess mucous

Severe anxiety

Hypnogogic jerks

Hypoglycaemia leading to fainting attacks

Dizziness

Vertigo

Black outs

Light-headedness

Low and/or high blood pressure

Dysautonomia

Dystonia

Loss of equilibrium

Loss of balance

Inability to stand

Inability to walk

Inability to sit

Poor/loss of co-ordination

Clumsiness

Raynaud’s phenomenon (poor circulation in fingers and toes)

B12 deficiency is common

Vitamin D deficiency is common

Endocrine dysfunction

Seizures

Unconsciousness

Inability to hold things

Inability to lift things

Sensory overload

Severe sensory issues

Loss of touch

Loss of taste

No energy

No strength

Lack of stamina

Disabling fatigue* (see more re fatigue below)

Emotional lability

Compromised immune system

Severe thirst

Dehydration

Excessive saliva

Mouth sores

Kidney infections

Crippling Exhaustion

Chronic infections

Slow recovery from colds/flu

Cysts

Skin rashes

Fevers

Loose joints

Easily dislocated joints

Hair loss

Weight loss

Weight gain

Dehydration

Compromised immune system

Fainting

Discomfort all over

Feeling generally unwell (malaise)

Feeling generally exhausted, exhaustion reached more rapidly

The list of symptoms above includes symptoms from a combination of patient feedback to us and symptoms as per a study by Greg Crowhurst and Linda Crowhurst.

Comments

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.

Questionnaires

Questionnaires which may support you in a consultation with doctors are the De Paul Symptom, Severity and PEM questionnaires. They are useful for remembering your set of individual symptoms. See links to those and more below.

Symptom Questionnaire (DePaul Symptom Questionnaire DSQ-2)

The DePaul Symptom Questionnaire (DSQ-2) is a self-report assessment created by Leonard Jason at DePaul University, US. With 54 questions in total, the DSQ-2 Symptom Questionnaire assesses key symptoms of ME such as the post-exertional response in ME, 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 it is useful to print out to complete and shown to your GP/Consultant/other. It is also useful for tracking symptoms.

As much as anything the questionnaire can support you to educate your GP about ME.

This is the link to the DSQ-2 symptom questionnaire.

PEM Questionnaire (De Paul 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 in ME, an essential criterion for an ME diagnosis. See more on PENE further on.

By answering the questions in the DPEMQ questionnaire, you get an idea of how ‘activity’, i.e., 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 can be delayed 24 hours to 48 hours after activity.

The questionnaire includes key indicators that show within answering a set of questions that your illness sounds like ME.

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

Paediatric Questionnaires

The DSQ-PED questionnaires from De Paul consists of a parent form and a child form. Parents can fill in a symptom questionnaire to evidence the child's symptoms and severities to present to the child’s doctors. From a completed questionnaire medics will receive data about the child with ME from the child and the parent to obtain a thorough understanding of the child's ME. Children under the age of 12, or those with reading or comprehension difficulties, complete this questionnaire with the assistance of a parent or guardian.

These forms are based on research by De Paul University.

DSQ-Ped Parent Form here

DSQ-Ped Child Form here

How the person with Severe/Very Severe ME Feels (as well as the above)

• Totally dependent

• Extreme discomfort

• Trapped inside a numb, empty shell of a body

• No Possible movement

• Paralysis - total/partial

• Absolute pain

• Profoundly hypersensitive even to fabrics, e.g., clothes and bed linen

• Multiple Sensitivities

• Helpless

• Blank mind

• Look asleep but totally aware and conscious

• Everything is out of reach

• Completely unable to communicate

What the person with Severe ME might say

• I shake

• I cannot sit up/stand/move or walk

• I am dizzy

• I struggle to breath

• Eating is difficult, so I am tube fed

• I cannot comprehend information

• Light hurts me and noise damages me

• Smells set me back and I can feel so unwell just from someone’s perfume

• I have zero energy to function

• I live in a fog of inability.

- 'How the person with Severe/Very Severe ME Feels' & 'What the person with Severe ME says' by Greg Crowhurst

Comments

The daily reality of people with Severe ME is much worse than not having the 'basic energy' to engage in daily tasks, while that of people with Very Severe/Profound ME is so horrendous, there just are no words to describe how awful it is - pain, paralysis, cognitive issues, terrible hypersensitivities, profound system dysfunction.

ME can be unpredictable. Symptom fluctuation is a common characteristic, symptoms may come and go, or there may be changes in how bad they are over time.

‘The danger is that the long list of symptoms above can still, unintentionally, underplay their severity and seriousness, the totally disabling nature and the individual intensity of each one, which together add up to a physical nightmare of indescribable proportion for a person with ME.’

- Greg Crowhurst -

What your GP (doctor) could ask you in your first or follow-up consultation where ME is suspected

A doctor needs to ask about the symptoms 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.

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?

At 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.

Important Notes

Early Diagnosis is essential

The aim should be to provide patients with an early and accurate diagnosis. Making an early and accurate diagnosis of ME will allow patients to receive appropriate treatments in a timely fashion, which may lessen the severity and impact.

Early diagnosis will enable a comprehensive plan of management to be agreed between the patient and doctor. This should cover symptom management and symptom relief.

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.

Did you know

. . . . that the 6-month waiting period before diagnosis is not required as per the ICC 2011.

‘No other disease criteria require that diagnoses be withheld until after the patient has suffered with the affliction for 6 months. Notwithstanding periods of clinical investigation will vary and may be prolonged, diagnosis should be made when the clinician is satisfied that the patient has ME rather than having the diagnosis restricted by a specified time factor. Early diagnoses may elicit new insights into the early stages of pathogenesis; prompt treatment may lessen the severity and impact.’

~ from the International Consensus Criteria (ICC)

About Myalgic Encephalomyelitis (ME)