What is Severe ME? MECFS Basics

What is ME?

Myalgic Encephalomyelitis (ME) is defined by the International Consensus Criteria as

"An acquired neurological disease with complex global dysfunctions."

In which

"Pathological dysregulation of the nervous, immune, and endocrine systems, with impaired cellular energy transport and ion channel deficiencies are prominent features."

Although there are no tests to diagnose ME physical abnormalities include but are not limited to

-Blood micro clots

-Abnormal perfusion scans

-Abnormal MRI

-Immune dysfunction

-Dysautonomic dysfunction

-Neurological dysfunction

-Viral reactivation

And much more.

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Symptoms of Myalgic Encephalomyelitis include

-Post Exertional Malaise**

-Muscle Weakness / Paralysis

-Muscle Spasm

-Tremor

-Stoke like symptoms

-Seizures

-Myalgia*

-Cognitive Dysfunction*

-Sleep Disturbance*

-Fatigue**

-Dysautonomia and Orthostatic Intolerance*

-Cardiac Dysfunction

-Gastrointestinal Disturbance*

-Neuralgia*

-Sensitivity to Light, Sound, Motion and Touch*

-Visual disturbance

-Multiple Chemical Sensitivity

-Medication Sensitivity

-Increased Urination Frequency

-Sudden Mood Swings

-Headache / Migraine*

-Low-Grade Fever

-Sore Throat

-Frequent Infections*

-Inability to Chew or Swallow

**Mandatory

*Diagnostic

It is usual for pwME to have between 50 and 100 separate symptoms. This can be overwhelming to communicate.

Additionally, the comorbidities of fibromyalgia, EDS, POTS, MCAS, mitochondrial disease, and reactionary depression are common.

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What does "severe" mean?

As the previous list demonstrates, all ME is a severe illness. One of the diagnostic criteria for ME is having a 50% of greater reduction in activity which is extremely significant. However:

Severe ME is defined by the 25% ME Group, the leading patient advocacy group for severe ME patients as patients who are:

Bedbound and/or virtually or completely housebound.

This is roughly 25% of the ME patient population.

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Quality of life

Doctors have compared the quality of life of severe ME patients to chemotherapy patients and AIDS patients in the final weeks of life. Here are some of the primary factors decreasing quality of life in severe ME:

-Severe and poorly managed pain

-Severe light and noise sensitivity

-Temporary or permanent stretches of paralysis

-Reliance on others for financial support

-Reliance on caregivers for

-food

-water

-bathing

-toileting

-Reliant on wheelchairs or bedbound

-Extremely low tolerance for mental and physical exertion and stimuli

-Inability to access medical care due to severe mobility and sensory issues

Some patients may also be dependent on IV hydration and nutrition, and severe malnourishment can be a life-threatening complication.

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Range of severity

While severe ME is a single label applied to the bottom 25% of pwME this is highly inadequate to capture the vast range of severities within this group. Scales such as the Hummingbird 3 Part Scale better capture this nuance, as does the @m.e_and_more Unofficial Severity Scale.

Here are just a few things some people with severe ME can do and other cannot.

-Sit up in a wheelchair

-Move a manual wheelchair

-Stand

-Walk a short distance

-Watch TV

-Play video games

-Hold a conversation

-Communicate via text message

-Move their limbs

-Turn on a light

-Open a window

-Listen to music

-Meditate

-Take a seated shower

-Take a bath

-Take a bedbath (with or without pain)

-Eat solid food

-Drink liquids

-Rollover

-Be touched

-Have a friend over

-Heat something up in the microwave

-Order takeout and get it from the door

-Be transported by car

-Smell flowers

-Take pain killers (medication sensitivity)

As you can see, within being severe there is a massive range of ability.

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Abuse and Neglect

Severe ME patients experience abuse neglect in a number of ways including:

Inability to access medical care:

Patients may be unable to access doctors and treatments they need because the treatment centers are not adapted to their mobility and sensory needs.*

Inappropriate psychiatric treatment:

Patients may be inappropriately hospitalized for "depression" due to their inability to care for themselves. Forced treatment like Graded Excercise, inappropriate or lack of food and hydration, and ignoring of sensory needs leads to severe suffering, abuse and even death.

Domestic abuse:

Because patients are fully dependent on others and unable to care for themselves they are extremely vulnerable to domestic abuse. This can range from physical violence and verbal abuse to neglect by parents or partners who believe they need to "push" the patient to get over a "mental block" by not helping them.

Medical Gaslighting:

Patients are often dismissed as hypochondriacs. This can lead to both mental distress and PTSD as well as neglecting basic medical treatments like pain relief as treatment of comorbid conditions.

*see next slide for appropriate accommodations for pwME

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Accommodating a severe patient

If you are a caretaker, hospital worker, or anyone else dealing with a severe patient here are some important adaptations you will need to prepare to avoid permanently worsening the patients' condition:

Sensory accommodations:

-Provide the patient with a dark quiet room to rest in.

-Work with the patient to ensure they have access to headphones or earplugs and a sleep mask during periods of unavoidable light or noise

-Move and touch the patient as little as possible

Energy accommodations:

-Whenever possible talk to the caregiver of the person with ME to get basic information. Avoid making patients repeat information.

-Hold telehealth or virtual consultations whenever possible

-Ensure prescriptions can be delivered

-When possible use treatments that can be given at home. Consider prescribing a home nursing service if necessary.

For severe patients:

The NICE 2021 guidelines contain a section on hospital accommodations for severe patients.

The 25% ME group on Facebook has a thorough hospital guide.

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Permanent decline

Severe patients are much more likely to belong to the 15% of patients with a declining trajectory. In addition, regardless of overall trajectory, great care must be taken with severe patients to avoid permanently worsening their condition.

Post-exertional malaise is the defining symptom of ME. In severe patients, PEM can be triggered simply by a loud noise or sitting up too long. It is incredibly important to listen to the patient especially if they say they need to rest. Every person's triggers for PEM are slightly different and patients get small signs that they are overexerting that are important to listen to.

For example, a patient may notice

-Flushing or chills

-Dizziness

-Headache

-Increased confusion

-Increased pain

-Tremors

-Muscle spasm

Or many other invisible signs that they are overexerting and need to stop.

Other patients may wear a heart rate monitor that will beep when they are overexerting. It is important that people around the patient respect this alarm.

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Summary

Severe ME patients are some of the sickest people on the planet with a quality of life comparable to chemotherapy patients and AIDS patients weeks before death.

Severe ME is a large spectrum of function levels and no two severe patients are the same.

Severe ME requires careful accommodation to avoid causing a permanent decline in health.

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What is severe ME, much needed medical basics on Myalgic Encephalomyelitis aka MECFS.

I hope this post can help provide a concise guide on some of the struggles, abuse and suffering faced by housebound and bedbound patients with severe ME. 

Severe ME is extremely poorly understood. It is a disease within a disease. Not only do severe patients suffer from misunderstanding around post-Exterional Malaise or PEM the defining symptom of ME/CFS but we also suffer with severe sensory sensitivity and chronic pain as well as dysautonomia and neurological disease. 

This post only hits the tip of the iceberg that is the suffering involved in severe ME. Some resources for severe patients and raising awareness besides here @m.e_and_more include 

Severe specific:

-Hummingbird Foundation 

-Stonebird 

-Whitney Dafoe's blog @whitneydafoe 

-The 25% ME Group

General MECFS with Severe Focused Resources:

-The Open Medicine Foundation @openmedf

-ME Action @meactnet 

-The ME Association @meassociation 

-How To Get On (especially for SSDI and financial guidance)

Please go to www.meandmore.net/resources 

for a more exhaustive list of sources including Instagram accounts, charities, Facebook groups and blogs. 

Please feel free to download, print, repost, share and use this resource in any way that helps you or other severe patients!