@M.E_and_more's Unofficial Severity Scale
The Scale.
Stage 1 (Green)
1.) Chronically ill workers
2.) Living in the gap
Stage 2 (Yellow)
3.) Fulltime chronic illness
4.) Mostly housebound
Stage 3 (Orange)
5.) Mostly bedbound
6.) Bedbound
Stage 4 (Red Orange)
7.) Bedbound Suffering
8.) Hospital Level Care
Stage 5 (Red)
9.) Near Death Experience
10.) Dead
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About Stages
The stages terminology is chosen as I believe all ME is a severe illness and the term "mild ME" is misleading. It also emphasizes that improper management can lead to the progress of this disease. Stages 1 and 2 accounts for the majority (75%) of patients. Stages 3 and 4 accounts for people with severe ME or the sickest 25%. Stage 5 is not present in cancer scales but represents death and near-death experiences reminding us that ME kills. Patients may change stages as ME fluctuates and may find it useful to refer both to the stage they are permanently in and temporarily in.
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Stage 1 & 2 (75%)
Stage 1 - Sometimes called "mild" on other scales this stage encompasses people who can still work in some capacity but their whole lives are still severely affected. The gap refers to the neglected gap many safety nets have between people who can work full-time and people who qualify for benefits.
Stage 2 - Aka "moderate" and "moderate-severe" this group includes people whose full-time job is health management but still have some room for social events and hobbies.
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Stages 3-5 (25%)
Stage 3 - Aka "severe" this group consists of people who are no longer independent and fully housebound.
Stage 4 - Aka "very severe" these patients are some of the sickest on the planet suffering more than chemotherapy and late-stage AIDs patients.
Stage 5 - This stage consists of patients killed or nearly killed by ME and is a reminder that "extremely severe" ME can be deadly.
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1.) Chronically Ill Workers
These are people who go through tremendous pain and suffering daily in order to appear "normal." They have a job and attend some social events but at a great cost to their pain and fatigue. They are constantly monitoring symptoms and require rest days to avoid medical emergencies.
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2.) Living in The Gap
These are people who don't qualify for benefits and may work part-time but have had their lives drastically restructured by illness. They may have minimal social life or hobbies and work from home or part-time. They may have serious medical emergencies on the regular and spend a lot of time on medical admin. They may use mobility aids when going out. Our society is really bad at helping these people.
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3.) Full-time Chronic Illness
These are people who can do things recreationally (attend weddings, occasional dinner, movie, etc) but can not hold a job or support themselves financially. Their full-time job is self-care and medical admin. On benefits or supported by family. Many ambulatory wheelchair users.
4.) Mostly Housebound
Full-time chronic but cannot go out to do things recreationally. Leaves the house rarely but can go out very occasionally for something like a wedding or birthday. May spend a lot of time in bed. Often uses a wheelchair.
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5.) Mostly Bedbound
Full-time chronic illness and spends all day in bed aside from toileting and bathing or medical appointments. May have extreme difficulty leaving the house and thus struggle to access medical services.
6.) Bedbound
Full-time chronic illness, uses bedpans and has difficulty accessing medical services. Bathing is extremely limited and/or bedbaths. Activities in bed may be limited but can still use a phone or do light crafts.
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7.) Bedbound Suffering
Like above but with severe chronic pain, migraines, light/noise sensitivity, etc. Many people may come in and out of this category.
8.) Hospital-Level Care
Bedbound and requiring constant IVs, tube feeding, or medical intervention to stay alive. This obviously applies to people in hospital, but can also apply to people receiving large amounts of home healthcare and going in and out of the hospital.
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9.) Near Death Experience
Barely holding onto life. Frequent near-death experiences and emergencies like starvation, sepsis and stroke. Generally only applies for a few weeks but in extremely severe ME can last for years.
10.) Death
Understanding the effect of death on loves ones even when the patient was severely ill helps us remember the value of life, even in severe suffering.
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I don't like a lot of MECFS severity scales... so I made my own. Now presenting @M.E_and_more's Unofficial Severity Scale!
This is in no way an official scale and I am not a doctor. But it addresses a number of problems with traditional ME scales and I feel is much better for both people with so-called "mild" ME and severe ME.
Problem 1: No MyalgicEncephalomyelitis is "mild"
This is why I have changed the terminology to Stages of ME. This also emphasizes that if this disease is not properly managed it will progress and you will become more severe.
Problem 2: Severe ME is a huge range of functional states
You will notice a full half of the scale is dedicated to states that would all be normally lumped under "severe" and even in more detailed scales still all lumped under "bedbound". I believe this leads many doctors to not take the progression of severe patients seriously. After all "they're already at the bottom of the scale". Which leads to...
Problem 3: No acknowledgment that ME can be fatal
This scale clearly indicates with stage 5 that ME can be fatal. While deaths from ME are rare, acknowledgment of these deaths is crucial. Many of these deaths only occur because doctors don't believe in ME patients dying. You will note that cancer only has stages 0 - 4.* That is because everyone knows cancer can be deadly, you don't need to say it out loud, in ME we do.
This scale also has the benefit of using both stages which are larger more permanent identifiers as well as numbers that can be used to describe how bad a crash is. The two ratings work together to allow people to be in-between stages. For example, I would be stage 3 level 6. But I crash into level 7 and have good days where I might be level 5. People at stages 1 and 2 may have even larger ranges of levels.
So go ahead and test it out, where would you be? What could be improved? What would you like to see added or changed?
*Note that stage 0 isn't on this chart but would be something like "Burnt out or has a virus but has not yet developed PEM, some low risk of developing MECFS" comparable to how stage 0 cancer is when abnormal cells are present.
