What it’s like to be me, living with ME/CFS

If you’re interested in what it’s like to live with CFS/ME then this might be a useful read. Fair warning though, it is Loooong. This is part of the appeal submission when my Disability Benefit (SLP) application was declined. The full appeal document was over 10,000 words long. I’ve edited it, added bits that I feel needed more explanation, and cut a lot of sensitive and personal content that I don’t think needs sharing…now it’s under 7,500 words! 

I am happy to say that my appeal was successful.

I have been researching and planning for a potential blog post for some time, but actually  putting it all together took me almost the full 3 months allowed for an appeal. If it hadn’t been for my experience in academia I don’t think I would have managed it.

I’d like to write more regularly on the topic, but for reasons that will become clear, that may not be especially feasible for a while.

What is CFS – why it can prevent full-time work

Myalgic Encephalomyelitis (it’s a long name…break it down: My El-jick en Seffa low Maya Light iss), also known as “Chronic Fatigue Syndrome,” or “ME/CFS,” or the a horrible proposed label, “systemic exertion intolerance disease,” is a complex chronic illness with no known cause, no clear pathology (meaning they don’t know exactly what is happening inside the body to cause the symptoms), and no treatment. It can take years to be diagnosed, and can be extremely disabling.

Symptoms include:

PEM: One of the distinguishing symptoms of ME/CFS is referred to as “post-exertional malaise” (PEM). It is a delayed reaction (of up to 2 or 3 day) to triggers and exertion that can make management of symptoms extremely difficult as the timing and degree of the symptoms is mostly unpredictable.

Sleep is usually not very restful or restorative

PEM means that I may start out feeling pretty good on Monday because I spent the weekend resting, but by Tuesday afternoon or Wednesday, I am struggling to get through the day. This makes my health and level of functionality extremely unpredictable and variable from day to day. If I push myself to get through necessary activities one day, I will suffer a “crash”/”flare” (I tend to use the terms interchangeably) of an indeterminate length, usually starting at some point in the following 24-48 hours.

In addition to mental or physical activity, other triggers I have identified for “crashes” include infections, travelling, food poisoning, intense emotion (both positive and negative emotion), getting too cold, and adrenaline rushes. Even something as minor as a letting my blood sugar drop too far or too long, having a blood test, or coming in contact with someone who is sick can sometimes cause a crash of days, or even weeks, in length.

NON-RESTORING SLEEP: This includes a variety of sleep problems. Even after a full night of sleep, I usually do not feel rested. I often have problems falling asleep or staying asleep and take more time to transition from sleeping to awake activity (sleep inertia – which also affects falling asleep). Being too tired to fall asleep is a common problem too. There are nights when I am too tired to stay awake but overcoming the inertia of wakefulness requires more energy than I can muster, so I lie awake, or semi-awake for hours. Sleeping too deeply to be restorative or not deeply enough to be effective are also a problem for me. Sleep hygiene and other sleep management techniques do not tend to work for me anymore and can even make the problem worse.

Being woken from sleep is another problem. If I rouse only a little, I can usually get back to sleep, but if I have to overcome the inertia at all, e.g. to talk on the phone or answer the door, I may not be able to get back to sleep again, even if I’ve only had an hour or 2. This is especially awkward with fully reversed sleep cycles as people tend to telephone during the day rather than at 2am.

This can also include a daytime sleepiness akin to the effect of a ‘drowsy type’ antihistamine.

DEBILITATING FATIGUE THAT IS CONSTANT OR RECURRING: This is not a ‘tired because you’ve had a long day’ or ‘I didn’t get enough sleep’ kind of fatigue. It’s fatigue like you have the flu or like you are on chemotherapy. If can force me back to bed (or the couch) within an hour of getting up, or prevent me from getting up at all.

MUSCLE WEAKNESS: For me, ME/CFS is like trying to run or punch in a dream – there’s no energy or power in the movement no matter how much I put in. Some days I struggle to feed myself because my arms are too weak to lift a fork or my hands are too weak to grip a cup.

TROUBLE WITH COGNITIVE ABILITIES: This could include the inability to think quickly, remember things, focusing, processing new information, and what is generally described as “brain fog.” It also includes the inability to do math or difficulty multitasking. Forgetting words or getting them mixed up/choosing the wrong word is a pretty regular symptom. I also include emotion dysregulation under this heading.

I’m still a pretty cute toddler, at 41.

This one feels like losing 50 or more IQ points. On an especially bad day, it’s like being 4 years old again but still being expected to function like an adult – everything is so confusing and it’s difficult to cope. This one is especially problematic for anything involving language or problem solving and when performing activities requiring a lot of concentration, such as driving. The combination of cognitive problems has resulted in my sitting on the floor of a department store crying because the shoes I had on were too uncomfortable and I just couldn’t work out how to solve that problem and couldn’t articulate it to my family (my sister worked out what was wrong and took me to get some cheap jandals– as simple as that).

My word recall can be slow or faulty, and it is common for me to pick an entirely inappropriate word that simply has a sound in common, or to not be able to recall the word I want at all (e.g. Chicken/kitten sound similar so are interchangeable, as are puppy and kitten because they both describe small domestic animals, sometime puppy/kitten may also refer to a 4 legged animal of any size. Example of word loss from an actual conversation last Xmas … Me: I need to go to the …um…the place…the um…the letter shop. I have to send the thing. Husband: Post office? Me: Yes. That’s it.)

Sometimes this can extend to mild dyslexia and the inability to understand the meaning of words in written or spoken form unless I speak it aloud myself. I have a number of other transient language and sound-based cognitive symptoms, such as tone deafness and inability to recognise names or learn new words.

ORTHOSTATIC INTOLERANCE: Worsening of symptoms while standing or sitting upright. I often get lightheaded, dizzy, weak, or faint while standing or sitting up. Sometimes this can cause vision changes, such as blurring or seeing spots.

Orthostatic intolerance is not the same as a momentary ‘head rush’ from standing up, it is a problem that persists for as long as I sit or stand and often gets worse over a short period of sitting or standing. The low blood pressure that comes with this means that standing for long periods can even cause an adrenaline surge, which aggravates other symptoms. I notice that sitting or standing still for even 10 minutes can cause this. Walking seems to be less of an issue (although it brings its own problems) as the limb movement will increase my blood pressure enough to slow down the effect of this.

NUMEROUS OTHER SYMPTOMS: I also experience many other symptoms, including muscle pain, sore throats, swollen lymph nodes, sound and light sensitivity, cold sensitivity, headaches, nausea, trouble regulating my body temperature, and vertigo. In all, about 60 different symptoms can occur with the disease and at different times I experience most.

On a daily basis, regardless of activity levels I will experience at least the following symptoms:

  • Fatigue/low energy levels
  • Headaches
  • Muscle, joint, and other tissue pain, especially in legs and feet, and back.
  • Dizziness
  • ‘Brain fog’
  • Problems with language and word finding (using a similar sounding but incorrect word or forgetting the word entirely)
  • Trouble concentrating and multitasking
  • Memory problems. I sometimes forget what I’m doing while in the act of doing it.
  • Nausea and digestive problems
  • Insomnia/excess sleep/sleep reversal/sleep inertia
  • Muscle weakness
  • Depression and/or anxiety
  • Chemical and food sensitivities
  • Excessive daytime sleepiness
  • Exercise intolerance
  • Orthostatic intolerance

Additional symptoms I commonly experience on the day of or days following over exertion:

Sometimes I’m forced to stay in bed
  • Sudden and intense bouts of sleepiness (struggling to stay awake even while standing or walking)
  • Tinnitus
  • Fever
  • Trouble with thermoregulation
  • Facial numbness and palsy
  • temporary blindness
  • Irritability
  • Shaking
  • Sore throat, ear ache, and other flu-like symptoms
  • Sound and light sensitivity
  • Tender lymph nodes
  • Irregular heart beat
  • Loss of appetite
  • Light headedness with a disconnected ‘un-reality’ feeling
  • Chills
  • Tone deafness
  • Inability to recognise sounds and replicate unfamiliar sounds, especially new names
  • Exacerbation of other existing symptoms

I have other symptoms, but these are the ones that bother me the most and make it difficult to function.

While I am usually capable of my own self-care, if I overexert myself too much or for too long, I do become so severely impaired that I struggle to take care of my daily needs, such as changing clothes and preparing a meal, and sometimes I can be completely bed-bound and too weak to feed myself.

What is it like for me, (dis)functionally, to live with CFS.

I have read many descriptions and metaphors (you may have read about spoons or marbles) but I find that none aptly describe what it’s like for me, living with ME/CFS.

To me, having CFS is a lot like living on the benefit (aka welfare) as my energy levels and the effects of exceeding them are very much like living on a tight budget.

Visa and Mastercard don’t lend energy to people with bad energy credit ratings. 
Photo by Pixabay on Pexels.com

When I was healthy, I had more than enough ‘money’ and could store some away for emergencies. If I needed to spend more than I had saved I could pull out the ‘visa’ for the excess, then pay it all off over the next couple of paydays. Now, I have not quite enough energy to live on, let alone keep up that lifestyle, so I cut back on my outgoings (I stop exercising, I use the lift, I park closer, I don’t do that thing etc). I may be able to cope with the basics but it makes me vulnerable to any small change in circumstances.

For example, I have to visit the doctor, or attend a meeting at Work and Income NZ, or a friend comes to town and wants to catch up for coffee, or I receive emotionally significant news. Those activities weren’t within my energy budget, but I want/need to do or otherwise can avoid or defer them … so I pull out the energy credit card and pay for it that way. There only limited ‘energy loans’ available for someone on a limited energy income, so I have to go to an energy finance company (the energy equivalent of GE Money) or a dodgy payday loan shop.

Somedays I can push myself to do more, if I really want to (like to meet favourite celebs), but the cost is high.

When it comes to paying back that debt, the interest is high. Even if I’m able to rearrange things so I have some spare energy to pay it back with, maybe I stay in bed for 2 days, or put off doing the washing, the interest payments mean that what I pay back is far more than what I borrowed. If it had been in the usual budget, a coffee with a friend may be about as much energy as hanging a load of washing and bringing it back in, but on the Energy Credit Card, it can be more like running a marathon, or climbing a mountain. The more you borrow, the harder it is and the longer it takes to pay it back, and the higher the repayments, and if you default, they send ‘heavies’ to cause you pain.

Energy drinks and similar products are especially high interest and require almost immediate repayment. These are available as a worst-case scenario, last resort band-aid for times when the need for an unusually high energy output cannot be avoided or otherwise managed but are not a solution for more than a day or 2 and can only be used very rarely. They always come with a major crash with a significant intensification of symptoms.

The hardest thing to deal with is finding that the ‘energy bank’ has taken random fees or you dropped $20 of energy somewhere, so even though you woke up feeling like you had enough to pay the bills today, you’re actually quite short.

It’s a pretty good metaphor, I think.

As yet, there are no treatments that will increase my incoming energy, or reduce the interest rates on those loans, or the effects of defaulting. Unfortunately, working in even a part-time job may have the same effect as leasing a racehorse from the mob and then using it for cat food.


I still look reasonably healthy. I am a little overweight at 75kg, but I am still quite fit and strong, on a good day.

When I’m well rested and ‘well’ I can still squat 60kg a few times before I’m reminded that movement is for other people. I think my 1 rep max for squats is about my own weight, and not much lower for deadlifts. When I’m feeling good I can run at 10km/hr for a minute or more before my heart rate gets too high, and I can do 20 minutes of that in 60/120 HIIT intervals. I haven’t had a good day like that in over a year. On a bad day I struggle to lift 200g with both hands, and I can’t walk to bathroom on my own.

I am fortunate in that I don’t tend to lose much muscle condition through inactivity, so my muscles retain the potential strength and efficiency even when my mitochondria aren’t fuelling them. This may be why I am able to still function at the level I do. The problem is not my fitness levels.

“In either case, in order for me to do those few hours of house work, I have to be prepared for it to use up my whole week. The only difference is the amount of discomfort I will experience.”

Some days I can stand for 12 hours, talking and laughing, being sociable and doing basic maths in my head. Sometimes I can get out in the garden and mow the lawn, weed the flower beds, trim hedges, dig a vege plot. Some days I might feel energetic and enthusiastic and wash 5 loads of washing, hang them out, bring them in, and do the garden and lawn in between …

but if I do …

If I do manage to do those things without any immediate effects, I know that in a day or 2 I will be bedridden. I may be bedridden for up to a week for each day of high activity. I may have a fever and a sore throat, or I may be weak and dizzy, or a may be vomiting with a headache, or a may ache from head to toe, or I might be able to feel every blood vessel in my body as it bends and stretches with every heartbeat, I may go into a coma like sleep for 48 hours, or I may just cry for 3 days straight.

Sometimes I’ll think I got away with it, then I try to go to sleep and I find that regardless of how tired I am, I’m not going to get any real sleep for the next couple of days…here, have a 20 minute nap now wake up tired and groggy and not be able to sleep again for 18 hours, now sleep for 2 hours but never get past alpha waves.

I may get to experience all of these things at once; I won’t know until I get there.

Maybe I decide to pace myself and spread my activity over a week (although it would have to be all I was doing that week). Maybe I’ll do a load of washing every day and weed 1 square meter of the garden on Saturday and Sunday, and my husband can mow the lawns. Now I might get a headache, and some pain on the day but limit the delayed effects.

In either case, in order for me to do those few hours of house work, I have to be prepared for it to use up my whole week. The only difference is the amount of discomfort I will experience.

Roswell Grey demonstrating how to avoid over stimulation.

Loud noises, bright lights, strong smells all count as physical work, and any emotion is stress, even the good ones. A close friend gets engaged or loses a baby… same effect on my body either way – I will physically hurt because of the brain activity that emotions produce/require.

Something as ‘low energy’ as reading or having a conversation online can be as exhausting to me as physical activity, and anything requiring real concentration (including reading for comprehension, or writing something like this) is extremely draining. As a former member of the ‘knowledge industry’ this essentially removes or severely limits my main employment options. Reading academic papers may as well be a high impact sport for me.

My whole system is weakened. I went out for dinner with my in-laws recently. My mother in law ordered a plate of mussels, and we all tried a bite. That night I was in excruciating pain with cramps wracking my entire torso. My husband called his parents the next day and asked them if they’d been ill. We had all suffered some effects from the contaminated shellfish, but I had suffered the most. I had eaten 1 mussel and it took over a week for my system to recover. My mother-in-law ate the whole plateful and had a mildly upset stomach and was so tired she went to bed early. The effort of my recovery compromised my immune system and I got a cold, which took longer than normal to pass. Recovering from the cold left me vulnerable to the stomach bug that my flatmate’s 3-year-old was sick with, and on it goes. Not only am I a canary in the shellfish contamination mine, but it took over 6 weeks to recover from something that should completely pass within 24 hours.

There are some major research projects happening at Stanford and Harvard Universities’ collaborative research centres that may yield results soon (researchers in the field are optimistic and excited about a few recent discoveries), but even if they are able to identify the cause and/or mechanisms or the illness, and develop a treatment that is safe and effective, it is unlikely that it will be available to the public for a few years yet. I live in hope that they will find a solution soon, but I am not going to hold my breath while I wait.

My history with ME/CFS

I have always been an overachieving, active person, always on the go and juggling multiple projects, until I couldn’t be. I still struggle with stopping when I should and will frequently push myself much harder than is advisable.

One Sunday in 2005 I woke up feeling fine, but by lunchtime I had to go home from work with flu-like symptoms and have been sick ever since.

One Sunday, back in 2005, I got up to go to work in a microbiology lab in Auckland. Nothing was out of the ordinary. Around morning tea time, I noticed that I had started getting a bit grumpy and snapping at people and my throat was getting sore. By lunchtime that day I was so ill I had to go home to bed. The sore throat had developed into a full-blown fever, aches, chills, and nausea. Having had influenza before, I assumed I had caught it again. I got home around midday or 1pm, went to bed and slept. I woke up when my alarm went off the next day, but I was still sick, so I called and let work know I wasn’t going to be in, then went back to sleep. I woke up again around lunch time and tried to walk to the bathroom. Walking the short distance across my small flat to the bathroom required a rest on the couch, and another rest on the bathroom floor before I could get to the toilet. I was nauseous, weak, dizzy, and feverish. Returning to bed took about 5 minutes as I had to stop to rest every few steps. I remained this sick for about a week. I returned to work, but my weakness and nausea was so bad I spent most of my day running for the nearest sink. My employer was very understanding, and we came to an arrangement of light duties and reduced hours while I recovered.

I consulted a doctor when I was still sick 2 weeks later. Any exertion caused me to get shakey, dizzy, and feverish, overheating or feeling freezing regardless of the actual temperature. She tested me for anything and everything she could think of, and the tests reported that I was a textbook specimen of a 28-year-old woman in the peak of health. We ran the test again, and again. Nothing gave any clues as to why I was still so sick. Eventually I had been ill for long enough that I could formally receive the diagnosis of CFS/ME.

My colleagues and manager were supportive. A few of my teammates would help me carry my tubes and plates (too heavy), and the control tubes because I couldn’t carry positive controls safely (too shakey) – the time I tried I got salmonella on my coat and caused a false positive in a sample. Within about 3 months my symptoms had reduced enough for me to return to a limited version of full duties (I could stand at the bench, but if a chair was available, I used that. I couldn’t do any of the jobs that required a lot of lifting), and I was given as many of the non-physical quality assurance jobs as possible. I still had all my symptoms, and I would still feel sick and feverish, and I would shake like I was shivering from the cold, but I could do a little more before they became unbearable.

Over the next year my symptoms eased a little more, but I was never fully recovered. I had a heart rate monitor that I had bought because I wanted to improve my fitness. I strapped the band around my ribs one evening and proceeded to cook dinner. I stood at the stove, gently stirring the veges in my wok. The monitor’s watch started beeping at me to slow down because my heart rate was getting dangerously high. Another time I tried to go on a bike ride with my partner. We got about 50 metres down the street before I had to stop so I could dry retch into the gutter. I was too weak to wheel my bike home myself and I slept for the rest of the day.

At least I have good company when I’m Bedridden

I got used to managing my limits. I stopped walking or cycling, or taking the stairs, I slept constantly. I did lots of little things to ease the symptoms but managing the cost-benefit balance could be difficult. I received a weekly full-body massage, which helped a little. I would go out once a week to sing in a local pub’s jam session, but I couldn’t manage any further social interaction or leave the house much beyond work and that. I became depressed and lonely, so in 2007 I moved back to Christchurch where I had more social and physical support available.

I returned to study at UC and started teaching ESOL in the evenings. Non-physical work meant that my symptoms almost disappeared. I believed I was in a remission. I even started lifting weights and going to group fitness classes at the gym again in 2008. It was amazing to feel ‘normal’ for a while. I started getting weird cluster migraines that were painless, but made my face go numb, and affected my ability to understand spoken and written language, and I was becoming an emotional wreck. I soldiered on, fighting through it because hey, I’d been through worse and recovered, right? I got my BA and BA Hons (first class) and then launched into an MA. The familiar fatigue symptoms came back in about 2009/2010, coupled with a bout of depression. I stepped back a bit, changed my study to part time, stopped teaching in favour of note-taking in lectures for the disability service and addressed the depression. My symptoms eased again, and I finished my thesis and started looking for work.

It wasn’t until about 2016 that I realised the connection between my activity and the new symptoms I had been experiencing because they weren’t the symptoms that I had previously become used to. When I was initially diagnosed, I wasn’t given any information about what to expect or how to manage my symptoms, so I didn’t know about the delayed aspect of Post Exertional Malaise and I didn’t know about the less common symptoms of CFS, like the facial numbness and the language problems.

Finished my thesis…like a freakin’ Superhero.

I finished the thesis in May 2012 and started working part time in the office of the College of Arts at UC. In September I took on full time work and more responsibilities. By November I noticed my muscles were showing those tell-tale signs of CFS again. I dropped the physical activity back down again, as much as I loved it, reduced my commitments outside of work and tried to manage my way back into remission. It didn’t work.

By May 2013 I was almost as sick as I had been in my initial acute stage in 2005. I could walk down the hall, but I couldn’t use the stairs. I could use my mind but only if I did not use my body. I saw my doctor (I had re-enrolled at the University’s health centre, who had been my doctors before I moved to Auckland) and spoke to her about the return of my CFS. She suggested antidepressants, which I turned down (because they had not helped me in the past and I was too ill already to risk side effects. I was also unconvinced that they would be helpful as the literature on CFS did not support them as a treatment), so we tried vitamin D3. It helped a little, allowing me to now carry a laptop when walking across campus and occasionally use stairs. As helpful as this was, I still noticed that any physical activity would impact my mental capacity and my ability to manage my emotions. I carried on at this level, with little to no physical activity, in preference for maintaining as much of my mental and emotional capacity as possible.

In January 2015 I was made redundant. I did some short-term project work for the University, but these did not last. I went on the Job Seekers allowance in mid 2015. My brain function was starting to fail as my fatigue got worse again. I could no longer use campus health, so I had to find a new doctor.

In November 2015 I was offered a full-time role through a temping agency. It was a temp role that the acting manager hoped to have made permanent when her proposed new structure had been tested and accepted. I worked in this role from November 2015 until April 2016, when the new manager advised that he was not keeping that staffing structure.

In retrospect, this was probably for the best, as working full-time had been very bad for my health. Within a month of starting work I had started having problems sleeping, my migraines were returning, I had terrible brain fog, and I was getting recurring earaches and sore throats. I was struggling to climb the one flight of stairs to my desk each day, sometimes choosing to eat lunch at my desk (instead of the staffroom downstairs) in order to avoid having to do it twice.

20181009_230252
I’M NOT TIRED!

Emotionally, I was an over tired toddler, and I couldn’t cope with even the smallest of challenges: the supermarket not having my preferred variety of bread could have me in tears. The work itself was not difficult (in fact, even with brain fog, I could do my week’s 40 hours of work in under 20 hours if I worked to my fullest capacity, but I was a temp, I had to be there all day anyway, and I was paid by the hour, so I took it easy) but between the brain fog and the emotional fragility, I frequently found myself in tears because I couldn’t remember how to do the a step, I had forgotten where I was up to in a simple process, or I couldn’t understand what the words on the screen meant. I still did not recognise the relationship between the effort of working and the delayed effect it was having on my CFS.

After that assignment ended, I went back on Job Seekers Benefit. My case manager advised that I needed to get a medical certificate if I wanted to ensure that I wasn’t expected to take physical work. I saw my new doctor and and asked for a certificate saying I could work full-time in a sedentary role. She recommended reconsidering whether full-time work was a good idea but gave me the certificate because I was insistent that I could still do it.

Throughout 2016 and 2017 I researched CFS and what is currently understood about the illness and its management. I identified some new triggers I hadn’t recognised before (getting cold is a big one for me, while being too warm can sometimes help slow the drain) and learned about symptoms I had previously mis-attributed to other causes. I learnt about PEM and the effects of different supplements and exercise approaches. I tried HITT and some carefully managed weight training for a while and I was making fitness gains and even lost 8 kg, but eventually even that became too much.

At some point in mid 2017 I discovered that my medical records from 2005-2007 had been as they were not transferred when I changed doctors, and White Cross had disposed of their copies as I had not been back in 10 years. My doctor at campus health had also never properly recorded my symptoms or mentioned my previous diagnosis of ME/CFS despite my ‘text book’ symptoms (I told her I had been diagnosed with CFS and that it had returned after a remission… she recorded that I was “feeling tired”). This sent me into quite a tailspin as my diagnosis was almost 12 years old but was now unrecorded. My current doctor has recorded the CFS diagnosis and reruns blood work regularly to monitor anything that could make it worse. I am fortunate that 2 out of 3 doctors I have seen regularly about my symptoms have taken my illness seriously.  This is not a common experience as many doctors still refuse to acknowledge that it is a physiological illness and not a form of hypochondria.

ME/CFS did have the unexpected side effect of growing wings

I got married in February 2018, and about a month later I had my worst crash yet. It put me back down to the level I had been at in that first week in 2005. I stayed in my bedroom/bathroom for a week. When I was well enough to move beyond there, I couldn’t walk to the kitchen in one go, having to sit down at least twice between the bed and the fridge. A fork with food on it was sometimes too heavy for me to lift, but I wasn’t hungry anyway. I had to drink through a straw because lifting a cup was too much effort. My new husband suddenly became my full-time carer. I cried every day over putting him through that. I realised that my doctor had been right about my unrealistic expectations and why I could not work full-time. I saw her as soon as I was able and got a new ‘capacity for work certificate’ for WINZ. My case manager’s reaction was “oh, you finally figured it out! I’ve been watching your condition deteriorate, and I wondered how long it would take you to see it too.” She was quite right. I have always been a full volume kind of person so accepting that I can no longer turn it up to 11 is difficult for me, and fighting it was doing me more harm than good.

As I take her advice and observe my body’s responses to activity, and learn more about how CFS functions on a biochemical/cellular, systemic, and personal level, I realise that the remissions I thought I had experienced were more the effect of my reduction in activity than an improvement in my condition, and that if I track the relationship between my activity levels and functionality/disability levels, if anything, I have been on a slow but steady decline since 2006.

What does the research say about the prognosis for those diagnosed with CFS

While there have been numerous follow-up studies investigating the recovery rates in adults with CFS within the first 5 years of diagnosis, only a handful of longitudinal studies (6+ years). The adult patient follow-up studies all have similar findings – approximately 5% recovery rates are found across all studies, but all occur within the first 5 year of diagnosis, and the longer the illness duration, the less likely the patient will experience any further improvements and the more likely they will instead show a deterioration in symptoms (Mette Marie Andersen, 2007) (Stoothoff, 2017) (Cairns, 2005) (Brown, 2012).

“…most perceived remissions are not in fact improvements but either a lowering of health expectations or a coming to terms with and management (or denial) of the illness.”

However, Studies that include other analyses, such as the DePaul Symptom Questionnaire, find that those with MS/CFS are more likely to over-estimate their recovery and functionality than to underestimate it. One 25 year study (Brown, 2012) on the long term outcomes and prognosis of adolescents and young adults diagnosed with ME/CFS found that the self-reported recovery rate was inaccurate, and misrepresents the real outcome of the illness. When former CFS patients were asked to report on their long-term outcomes and then assessed using objective measure of their impairment, even those who considered themselves recovered showed significant impairment when compared to healthy controls, and there was very little difference between those who considered themselves recovered (‘remit’ group) and those who considered themselves still ill (‘persist’ group). This indicates that most perceived remissions are not in fact improvements but either a lowering of health expectations or a coming to terms with and management (or denial) of the illness.

“Across all outcomes, other than the Mental Health subscale of the SF-36, the persist group demonstrated more impairment than the control group. This finding highlights the sweeping debilitating nature of CFS across a number of domains such as physical and emotional difficulties, specific symptoms, pain, and sleep quality. Moreover, it appears that individuals who maintain a diagnosis of CFS for more than two decades continue to report a high level of disability, as participants in this study scored at least one standard deviation below general population means across all SF-36 subscales except for Mental Health.

Premorbidity: Me before the ME

Perhaps the most important findings in this study pertain to the remit group, which accounted for 80% of the 25 CFS participants. Given the duration of the follow-up, it would be expected that the remit group would demonstrate comparable functioning to a group of healthy individuals. Yet, this group had significantly more impairment than controls on 21 of the 23 outcomes evaluated. Thus, while people who no longer meet full criteria for CFS would be considered recovered by some standards, these individuals likely do not attain their premorbid level of functioning.

Another important finding with regard to the remit group is that on 17 of the 23 outcomes tested, their scores were not significantly different from those of the persist group, suggesting that the remit group maintained a similarly high level of disability. Directionally, the persist group did evidence poorer functioning than the remit group. Nevertheless, it would be expected that the patterns of differential impairment for the persist and remit groups would be more similar to those of the persist and control groups.” (Brown, 2012, p. 1031. Emphasis mine)

Another rather older (2005) aggregating literature review looking at the prognoses for patients with CF (that is, someone suffering from Chronic fatigue but not exhibiting a complete range of symptom required for a diagnosis of ME/CFS – these patients could be suffering from idiopathic chronic fatigue or post viral fatigue) and CFS. This study found that even accounting for the increased recovery rates of those with CF and those who initially became ill in a CF outbreak, such as the one in Tapanui, over those with ME/CFS, less than 1/3 of those with either of these diagnoses were able to return to employment.

“Unfortunately for me, this means that as I was not one of the lucky 5% to recover within 2 years, and have not recovered by now, it is extremely unlikely that I ever will. It also suggests that I may have even more disability to come if I do not slow my rate of degeneration.”

“Full recovery from CF/CFS is rare, although less so in chronic fatigue that does not meet full CFS operational criteria. The natural course appears to be different for CF/ CFS occurring in outbreaks or epidemics and two of three studies concerned with such cases showed that the prognosis is much better with many patients achieving full recovery… However, the natural history of CF/CFS is still of concern: many patients reported either residual symptoms or disability at follow-up and a progression or worsening of symptoms was seen in some. It undoubtedly led to functional impairment and work disability in a considerable number of patients and the prognosis in terms of return to work is poor and occurred in less than a third of patients when it was reported. (Cairns, 2005, p. 30. Emphasis mine)

Most recent research into the longer term (>2 years) recovery and improvement rates of patients with ME/CFS report either static levels of disability or a reduction in work capacity resulting from an increase in functional impairment over time.

Unfortunately for me, this means that as I was not one of the lucky 5% to recover within 2 years, and have not recovered by now, it is extremely unlikely that I ever will. It also suggests that I may have even more disability to come if I do not slow my rate of degeneration.[1]

Yeah, everything looks positive from here

Comparison to other recognised fatiguing disabilities and diseases

ME/CFS is significantly more impairing than and causes more functional impairment than MS, acute myocardial infarction, or congestive heart failure, but lacks recognition as such because it is rarely directly responsible for a patient’s death. Using the DePaul Symptom Questionnaire (DSQ) and Medical Outcomes Short Forms Health Survey (SF-36) to assess symptom severity and functional capacity Komaroff’s (1996) study found that ME/CFS patients were significantly worse off on all the SF-36 subscales than people with MS, heart attack, congestive heart failure, diabetes mellitus and hypertension. Leonard Jason’s study (2017) used the same scale and found that people with ME/CFS were not just more functionally limited than MS patients but were significantly more limited.

Functionally, the ME/CFS group was significantly more impaired than the MS patients. This wasn’t a case of subtle statistical differences. Except for on the emotional and mental functional scales – which were similar – the ME/CFS group scored far lower (lower is worse; higher is better in the SF-36) than the MS group. Despite their significantly decreased functioning in all areas, the ME/CFS patients had similar “role emotional” and “role mental” scores as the MS patients.

The MS group reported twice the level of physical functioning (54 for MS, 26 for ME/CFS), scored ten times better on role physical (20.6, 2.6), were in considerably less pain (56.5, 36.0), had poor, but still greatly increased, vitality compared to the ME/CFS patients (26.3, 10.1), and were considerably less held back socially by their illness than the ME/CFS patients (54.0, 19.8). The symptom assessments bore out the harsher world chronic fatigue syndrome (ME/CFS) patients face. Of the 54 symptoms assessed, 38 were significantly worse in the ME/CFS patients. (None were significantly worse for the MS patients.) The MS patients did experience significant post-exertional malaise but not to the extent that ME/CFS did, who generally reported about 50% higher scores.

As bad as MS is, ME/CFS is more likely to knock one out of the work force, produce disability, and leave one bedridden; i.e. from hour to hour and day to day, ME/CFS is a tougher disease to have.

The good news is, it doesn’t kill you. The bad news is, it doesn’t kill you.

Closing remarks

Roswell ‘working’ from the bed. I should never have told him about YouTube.

I don’t want my ME/CFS to keep getting worse. I love working, and I have always defined myself by the jobs I have done. Being unable to work is extremely hard on me, but I am having to recognise that this illness will never go away and pushing back against it will only ever make it worse. Because of the severe limitations on my ability to move and think, and the unpredictable nature of my illness and daily functionality, if I do go back to work (ever? in the foreseeable future? I don’t know. I hate to think I will never be able to work in ‘open employment’ again), it would need to be very limited part-time hours, and under very specific conditions (such as the ability to work from my bed, at home), with a lot of flexibility in how, when and where I worked. Nothing else would fit around the restrictions of the illness.

I am struggling to accept this change in lifestyle, and have been fighting it for over a decade, to my own detriment. It is not easy for me to write this, as it is forcing me to face the realities of having a chronic illness that I would prefer to continue ignoring and denying. No one would be happier than me if I suddenly got better and I could return to full-time work, as there are so many things I want to be doing that don’t involve listening to audio books and staring at my bedroom ceiling for hours each day, but it is becoming increasingly clear that I should never have returned to full-time work after my initial illness in 2005, nor when the muscular symptoms returned in 2012, and absolutely not in November 2015.

At the moment, I am uncertain if I could manage as much as 5 hours/week on a regular basis, as my health is so variable and unpredictable. This has been the case for at least 2 years already. During my good/’remission’ years, I was probably managing about 15-25 hours with only a few neurological symptoms (migraines, blindness, numb face, language difficulties), but I’m not entirely sure of that either, as my illness was never really controlled. It pains me more than you can know to write this, but without a major breakthrough in the medical treatments for ME/CFS, I now have significantly less than 5% chance of recovery.

Works Cited

  • Brown, M. M. (2012). Understanding long-term outcomes of chronic fatigue syndrome. Journal of clinical psychology, 68(9),, 1028-35.
  • Cairns, R. &. (2005). A systematic review describing the prognosis of Chronic Fatigue Syndrome. Occupational Medicine 55, 20-31.
  • Jason LA, O. D. (2017). Differentiating Multiple Sclerosis from Myalgic Encephalomyelitis and Chronic Fatigue Syndrome. Insights in Biomedicine 2:2, 11-16.
  • Komaroff AL, F. L. (1996). An examination of the working case definition of chronic fatigue syndrome. Am J Med., Jan 100(1): 56-64.
  • Mette Marie Andersen, H. P. (2007). Nine-Year Follow-Up of Danish Chronic Fatigue Syndrome (CFS) Patients. Journal of Chronic Fatigue Syndrome, 14:2, , 7-23, DOI: 10.1300/J092v14n02_02.
  • Stoothoff, J. G. (2017). Subtyping Patients with Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS) By Course of Illness. Journal of biosensors, biomarkers and diagnostics, 2(1), , 10.15226.

[1] I write this as much as a reminder to myself as for the purpose of the appeal: I need to listen to medical advice and to my body and stop pushing myself further than I should or I will only make things worse.

2 thoughts on “What it’s like to be me, living with ME/CFS

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