A Dummies’ Guide to ME/CFS: Part II, Prognosis, Severity & Scales

Content warning: abuse

Each week, I am publishing a part in a series about ME/CFS. This is Part II, in which I discuss how ME/CFS can affect patient’s lives, and discuss in detail the experiences of severely affected patients. You can find links to the other posts in the series at the bottom of this post.

Last week, I introduced you to the horrifying and complex disease that is ME/CFS. Today I’d like to walk you through how this disease can affect patient’s lives, with some first hand experiences from severely affected sufferers, myself included. This meant delving back into traumatic experiences that still affect me every day. However, I am always grateful when other sufferers share their stories, so it is my turn to do the same.

Prognosis, severity and scales

How ME/CFS patients are affected by their illness can vary wildly, according to age and severity. It is estimated that 25% of sufferers are severely affected, meaning bed-, wheelchair- or house-bound. I am one of this lucky, elite club.

A scene from the IT Crowd at the exclusive 8+ Club.
Not to be confused with the 8+ Club.

Those severely affected face unique challenges in accessing adequate healthcare. More than half are unable to attend their GP surgery, yet only a small handful of patients ever get a GP home visit. One third waited longer than 18 months for formal diagnosis, and many feel suicidal because of their illness. Chances of recovery are especially poor for severely affected patients.

Others are well enough to work part-time, study, or live independently, though their activity must be strictly managed to prevent relapse. Most studies indicate that ME/CFS causes a substantial reduction in the number of hours able to be worked. Those who can work are lucky indeed: somewhere between 75-85% of those affected can no longer work.

A meme: Spiderman sits at a desk. Caption reads: In three hours, I'll have five hours left.
How am I supposed to relate to hilarious Spiderman at work memes when I haven’t worked for 6 years?

It can be difficult to define the severity of an illness through personal experience alone, so Charles Shepherd published this ME/CFS disability scale, which is now commonly used by patients and medical professionals. FWIW, I hover around 70-100%.

ME/CFS Disability Scale (from Living with M.E.)

0%

Fit and well for at least the past three months. No symptoms at rest or following activity. Capable of full-time employment.

10%

Generally well. No symptoms at rest. Occasional mild symptoms may follow activity. Capable of most forms of full-time employment.

20%

Occasional mild symptoms at rest. More noticeable symptoms following activity. Some restriction of capabilities which require physical exertion. Able to work full-time but difficulty with work that requires physical exertion.

30%

Mild symptoms at rest. limited ability to carry out some tasks which require physical exertion. May be able to work full-time.

40%

Mild or moderate symptoms at rest. Variable ability to carry out tasks associated with normal daily living. Unable to work part-time in a job involving frequent physical exertion. May be able to work part-time in other types of employment.

50%

Mild to moderate symptoms at rest. Moderate to more severe exacerbation of symptoms following physical and/or mental exertion. Unable to carry out any strenuous physical tasks. Able to perform light duties or desk work for several hours a day, provided adequate rest periods are provided.

60%

Moderate symptoms at rest. Moderate to severe symptoms following any form of physical or mental exertion. Unable to carry out any strenuous duties. Able to carry out light duties/ desk work for one to three hours per day, provided adequate rest periods are available. Generally not confined to the house.

70%

Moderate to severe symptoms at rest. Severe symptoms follow any physical or mental activity. Able to perform desk work or light duties for one or two hours during the day. Often confined to the house and may require wheelchair assistance at times.

80%

Moderate to severe symptoms at rest. May only be able to carry out a very minimal range of physical activities relating to personal care (e.g. washing, bathing). Frequently unable to leave the house and may be confined to wheelchair or bed for much of the day. Unable to concentrate for more than short periods of time.

90%

Severe symptoms at rest. Bedridden and housebound for much of the time. Experiences considerable difficulties with many aspects of personal care. Marked problems with mental functioning (e.g. memory, concentration). Requires a great deal of practical support.

100%

Severe symptoms on a continual basis. Bedridden and incapable of living independently. Requires a great deal of practical social support.

As you can see, ME/CFS has a significant impact on the patient’s life – certainly more than is commonly represented in the media. Various quality of life assessments have indicated that ME/CFS patients “enjoy” a worse quality of life than those with conditions such as kidney failure, heart disease, or MS. Only those suffering from terminal cancer or stroke had a worse quality of life.

A teal wheelchair.
On the upside, I get a sweet pair of wheels. But between you and me, I’d rather have complete bodily function.

Dr. Nancy G. Klimas, who serves on the board of directors for the International Association for Chronic Fatigue Syndrome and is director of research for clinical AIDS/H.I.V. research at the Miami Veterans Affairs Medical Center, stated:

“I hope you are not saying that C.F.S. patients are not as ill as H.I.V. patients. My H.I.V. patients for the most part are hale and hearty thanks to three decades of intense and excellent research and billions of dollars invested. Many of my C.F.S. patients, on the other hand, are terribly ill and unable to work or participate in the care of their families.

I split my clinical time between the two illnesses, and I can tell you if I had to choose between the two illnesses I would rather have H.I.V.”

What about recovery? There are several factors which can predispose a patient towards a good recovery, such as paediatric onset, early diagnosis, a clear pattern of health improvement, and a short course of illness (ie, the longer you have had it, the less likely you are to recover). If you have severe and unremitting symptoms lasting more than four years, delayed diagnosis and poor initial management by health care professionals, you are not likely to recover. In other words, I’m fucked.

A scene from Black Books. Bernard Black is on the phone. Caption reads: I'm very well, th.....Actually, no. I'm dead.
Basically.

Severely affected patients

The prognosis is not good for many ME/CFS patients. While others manage partial or full recovery, others seem trapped in a half-life, unable to leave their beds for years or decades, wasting away to nothing. Some are unable to move, eat, speak, or tolerate light, sound and movement. I was one of those patients, and have written about my experiences being bedbound and abused in hospital.

Ingrid Bergman in Gaslight (1944)
Ingrid Bergman in Gaslight (1944). Do read my post about being in hospital; it’s a heartwarming tale of abuse and being locked up in a mental hospital without a mental illness.

Others have shared their experiences: Laura Hillenbrand, author of Seabiscuit and Unbroken, wrote of her struggle with severe ME/CFS in her New York Times article, A Sudden Illness. She speaks of cognitive dysfunction:

“Sometimes I’d look at words or pictures but see only meaningless shapes. I’d stare at clocks and not understand what the positions of the hands meant. Words from different parts of a page appeared to be grouped together in bizarre sentences: ‘Endangered Condors Charged in Shotgun Killing.’ In conversation, I’d think of one word but say something completely unrelated: ‘hotel’ became ‘plankton’; ‘cup’ came out ‘elastic.’ I couldn’t hang on to a thought long enough to carry it through a sentence. When I tried to cross the street, the motion of the cars became so disorienting that I couldn’t move. I was at a sensory distance from the world, as if I were wrapped in clear plastic.”

A scene from The Simpsons: a visualisation of what is in Homer's head. A band of animals plays in black and white.
Trying to think with severe ME.

Other severely affected sufferers, such as Hannah of Super Pooped, have a strict routine of extremely light activity (such as eating breakfast) followed by several hours’ bedrest to recover. Naomi Whittingham, who has suffered from the disease for 25 years, spent this quarter of a century in mostly housebound, bedbound isolation. At 37, she remains in a wheelchair, being cared for by her elderly mother.

“Recently someone asked me what I would do if I were well for a day. The possibilities for that one, cherished day not confined to bed or a wheelchair are too numerous to comprehend. Getting out of bed unaided, stepping out into the garden, making a cup of tea, styling my hair, shopping, going to the sea for the first time in years: basic, spontaneous activities which most people take for granted.”

A woman sits in a wheelchair. Another leans on the back of the chair and smiles.
Naomi Whittington and her mother who acts as her carer.

Other patients find themselves targeted by authorities who should be offering help. Liisa Lugus, a bedbound patient in Toronto, had been agitating for a specialist ME/CFS unit, only to be visited and harassed by police officers who were more concerned with her political agitation than her extreme debilitation.

A photo of a young woman, Karina Hansen.
Karina Hansen.

The abuse and suppression of those with severe ME/CFS is a horrific recurring theme. Karina Hansen, a severely ill Danish patient, was forcibly removed from her home by 5 policemen, 2 doctors, a locksmith and 2 social workers, and taken to a mental hospital. Karina called for help, but the police blocked her mother from aiding her. Her parents were forbidden from visiting her. She has been incarcerated by the Danish government for three years, with little contact with her family allowed. The last time her father visited her, she was in a wheelchair, unable to speak. She did not recognise him.

Her parents have fought her case in court all this time; each ruling being in favour of the state’s actions. A former chief of police, who was involved in her forcible removal from her home, remains her state-appointed guardian. She is completely physically and mentally incapacitated; worse than when she was “admitted.” Writing this brings me to tears, as it so closely mirrors what happened to me when admitted to hospital. [UPDATE 27/10/16On 17/10/16, Karina Hansen was returned to her home on a trial basis, after she was well enough to sign a statement saying she wished to be released. Read more here.]

A comic: first panel features a man lying on his side. Reads: Lie down. Next panel he has rolled over, caption reads: try not to cry. Final panel is a close up of his teary face, reads: cry a lot.

You may have read of Whitney Dafoe – a prominent, severe ME/CFS sufferer. After an active life as an award-winning photographer, who had helped build a nunnery in India, ridden a motorcycle in the Himalayas and worked on Barack Obama’s 2008 presidential campaign, Whitney was struck down with ME/CFS and was quickly made bedbound, being cared for by his parents. His father, a biomedical researcher, was infuriated by a series of doctors who insisted his paralysed son was merely depressed. He is now spearheading research and fundraising into the illness.

A young man approaches a deer.
A young Whitney Dafoe. I can’t bear to share an image of how he looks now, as it is so similar to my experience.

Whitney is imprisoned in his bed, unable to tolerate visitors. He is fed by a J-tube that leads directly to his small intestine. He cannot stand to see logos or words imprinted on clothing, as his brain cannot process that minute amount of information.

“He doesn’t eat. An IV line delivers nutrients and liquids and medicines to keep him alive. He doesn’t speak. He’s unable to write. Any motion exhausts him. Eye contact hurts him. He can’t bear to be touched.

Last December, in desperation, he used Scrabble tiles to communicate, laboriously lining them up to spell out: CANT TAKE CARE OF MYSELF; DONT KNOW WHAT TO DO. At the end of the month, emaciated due to his inability to digest food, he selected five final tiles and spelled out: D, Y, I, N, G. Then he rang a bell for his father.”

Source

Without the J-tube, Whitney may well have died. Tragically, this illness does have a death toll. The Alison Hunter Memorial Foundation was founded in honour of Alison, who tragically passed at the age of 19 from complications of this illness. She had spent much of her short life being belittled by doctors. Sophia Mirza was another young victim. After making some progress towards recovery, Sophia was taken by policemen to a mental hospital without just cause, an experience from which she never recovered. She was the first documented victim of ME/CFS in the UK, haging died from acute renal failure as a result of the disease. I, too, would have died of starvation had I not been fed through a nasal gastric feeding tube.

A young woman sits in a field and holds a flower.
Sohpia Mirza (Wilson), a life cut tragically short.

It seems every month there are more victims in the online ME/CFS community, but it breaks my heart to share them with you. Just know next time someone tries to crack a joke about being “chronically fatigued”, that this disease can kill.

“Fatigue is what we experience, but it is what a match is to an atomic bomb.” – Laura Hillenbrand  

This segment may shock many of you, as the stories of severely affected patients often go untold in the media. I consider the neglect and abuse of severely affected patients a great tragedy, and am desperate for attitudes to change with increased awareness of our plight. Next time, I’ll discuss what limited options for treatment of ME/CFS are available.

A meme: Spiderman lies on a railroad track. Caption reads: draw me like one of your French girls.
Sorry for the sads. Here’s a Spidey meme to break the tension.

Thanks for reading my Dummies’ Guide to ME/CFS! You can find the other posts here:

Part I, Intro

Part II, Prognosis, Severity and Scales

Part III, “Treatment”

Part IV, Prejudice & What’s in a Name

Part V, Research & Conclusion

Author: Siobhan S

20 something, living in country Australia. Spoonie profile: ME/CFS, dysautonomia, anxiety. All about sewing, knitting and food. Unapologetic feminist and disability advocate.

8 thoughts on “A Dummies’ Guide to ME/CFS: Part II, Prognosis, Severity & Scales”

  1. You are amazing Siobhan. It’s pretty amazing what you are doing and the attitude you take when you are struggling and suffering with, what sounds like, an horrific illness. There is nothing I can say here apart from to reiterate my maximum respect for you.

    Liked by 1 person

  2. Interesting reading this, its like going back in time and being reminded of a world I was in for so many years but now one I am almost trying to get away from and forget, to the detriment of my memory and perception of the illness maybe. A real reality check being reminded of what it was like and what it is still like for so many, the devastation of being removed from the basic processes of living and next to no physical capacity to perform basic tasks.

    Great articles, I know what it must take to actually put it all down and put it together. I am physically so much improved but actually sitting down and constructing an article would be a lot of work.

    Take care.

    Like

  3. You know, I thought I knew enough about ME/CFS, having read about Laura Hillenbrand before, but… holy shit. Karina Hansen’s story is absolutely terrifying and outrageous. Your own story of mistreatment in hospital is heartbreaking. I cannot believe that happened to you! I knew that ME/CFS was widely misunderstood, but I did not realize just how easily (and commonly, apparently) that could lead to abuse by the medical community. I hope you’ve got a good support system now.

    Anyway, I came here for the sewing articles, but I’m learning a lot more more from you. Thank you for writing these posts. They’re both powerful and informative.

    (Btw there are a couple of broken links in there – the hyperlinks for “bedbound” and “abused” don’t go anywhere)

    Like

    1. It’s shocking, isn’t it? Reminds me of an era when mentally ill patients were locked away in asylums so the public didn’t have to have contact with them. I’m glad you’re learning from these posts – that was my intention 🙂

      Thanks for the heads-up about the links! Should be all fixed now.

      Like

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