Name a remedy, and chances are that Elizabeth Allen has tried it: acupuncture, antibiotics, antivirals, Chinese herbs, cognitive behavioural therapy and at least two dozen more. She hates dabbling in so many treatments, but does so because she longs for the healthy days of her past. The 34-year-old lawyer was a competitive swimmer at an Ivy-league university when she first fell ill with chronic fatigue syndrome, 14 years ago. Her meticulous records demonstrate that this elusive malady is much worse than ordinary exhaustion. “Last year, I went to 117 doctor appointments and I paid $18,000 in out-of-pocket expenses,” she says.

Dumbfounded that physicians knew so little about chronic fatigue syndrome — also known as myalgic encephalomyelitis or ME/CFS — Allen resolved several years ago to take part in any study that would have her. In 2017, she got her chance: she entered a study assessing how women with ME/CFS respond to synthetic hormones.

After decades of pleading, people with the condition have finally caught the attention of mainstream science — and dozens of exploratory studies are now under way. Scientists entering the field are using the powerful tools of modern molecular biology to search for any genes, proteins, cells and possible infectious agents involved. They hope the work will yield a laboratory test to diagnose ME/CFS — which might have several different causes and manifestations — and they want to identify molecular pathways to target with drugs.

The US National Institutes of Health (NIH) in Bethesda, Maryland, bolstered the field last year by more than doubling spending for research into the condition, from around US$6 million in 2016 to $15 million in 2017. Included in that amount are funds for four ME/CFS research hubs in the United States that will between them receive $36 million over the next five years.

The stakes are high because the field’s scientific reputation has been marred by controversial research. A 2009 report1 that a retrovirus called XMRV could underlie the disease was greeted with fanfare only to be retracted two years later. And in 2011 and 2013, a British team reported that exercise and cognitive behavioural therapy relieved the symptoms of ME/CFS for many people in a large clinical study called the PACE trial2,3. US and UK health authorities had made recommendations based on the findings, but, starting around 2015, scientists and patient advocates began publicly criticizing the trial for what they saw as flaws in its design. The organizers of the trial deny that there were serious problems with it, but health officials in both countries have nevertheless been revising their guidelines.

Patients, meanwhile, are adrift in a vacuum of knowledge about the condition, says Jose Montoya, an infectious-disease specialist at Stanford Medical School in California and one of Allen’s physicians. “ME/CFS has suffered from scientists applying the usual approaches,” he says. He hopes that sophisticated analyses of genomics, proteomics, metabolomics and more will help to change that. “It wasn’t until the microscope became available that an Italian microbiologist could link cholera to the bacteria that caused it,” he says. “In the same sense, we have not had the equivalent to the microscope until now.”

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Having recently endured more than a month of post-concussion fatigue, I can’t imagine how people with so-called chronic fatigue syndrome navigate through life with disabling fatigue that seemingly knows no end. Especially those who are erroneously told things like “It’s all in your head,” “Maybe you should see a psychiatrist,” or “You’d have a lot more energy if only you’d get more exercise.”

After years of treating the syndrome as a psychological disorder, leading health organisations now recognise that it is a serious, long-term illness possibly caused by a disruption in how the immune system responds to infection or stress. It shares many characteristics with autoimmune diseases like rheumatoid arthritis but without apparent signs of tissue damage.

Accordingly, doctors now typically refer to it as myalgic encephalomyelitis, meaning brain and spinal cord inflammation with muscle pain, and in scientific papers it is often written as ME/CFS. At the same time, a major shift is underway as far as how the medical profession is being advised to approach treatment.

The long-standing advice to “exercise your way out of it” is now recognised as not only ineffective but counterproductive. It usually only makes matters worse, as even the mildest activity, like brushing your teeth, can lead to a debilitating fatigue, the core symptom of the disease. Both the Centres for Disease Control and Prevention in the United States and the National Institute for Health and Care Excellence in the UK are formulating revised guidelines for managing an ailment characterised by six or more months – and sometimes years – of incapacitating fatigue, joint pain and cognitive problems.

This new thinking is long overdue. It is understandably difficult for doctors to appreciate that a disorder lacking obvious physical abnormalities could have a physical basis, especially when patients debilitated by a chronic disease that no one understands are likely to be depressed and anxious.

For patients struggling to get recognition that they are suffering from a serious physiological illness with real symptoms, the goal remains to have doctors take the problem seriously and prescribe an evidence-based approach to treatment that offers hope for relief.

Medical practitioners who remain disease deniers may think differently after learning about factors that can precede an attack of ME/CFS and the abnormalities now known to often accompany it. For example, one person in 10 who meets the diagnostic criteria for this syndrome reports that it followed an infection with Epstein-Barr virus, Ross River virus or Coxiella burnetii, a bacterium that causes Q fever.

The syndrome is also often accompanied by immune system disruptions, including chronically high levels of cytokines that change how the body responds to stress; poor function of natural killer cells that diminish the ability to fight infections, and abnormal activity of T-cells needed for an appropriate response to infection.

The core symptoms of the syndrome make it clear that this is not a matter of malingering. No one with an appreciation for life would pretend to be so debilitated. As the CDC put it, “People with ME/CFS have fatigue that is very different from just being tired. The fatigue of ME/CFS can be severe; is not a result of unusually difficult activity; is not relieved by sleep or rest, (and) was not a problem before becoming ill.”

Furthermore, the agency explains, symptoms of the syndrome typically get worse “after physical or mental activity that would not have caused a problem before” the illness developed. Following even minimal exertion, patients tend to “crash” or “collapse” and may require days, weeks or longer to rebound. As mundane an activity as grocery shopping, attending a school event, preparing a meal or even taking a shower may force a retreat to bed.

Patients do not feel rested even after a good night’s sleep, and sleep is often abnormal – falling asleep or staying asleep may be difficult. Brain function is often described as “foggy,” causing problems with memory, quick thinking and attention to detail. Some patients feel lightheaded, dizzy, weak or faint when they sit or stand.

Muscle and joint pain unrelated to an injury is a common accompaniment, as well as headaches that are new or worse than before. Some people also have tender lymph nodes in the neck or armpits, a frequent sore throat, chills and night sweats, allergic sensitivities or digestive problems.

Estimates of the number of people in the United States afflicted with the syndrome range from less than 1 million to 2.5 million. The range of estimates is wide because of varying definitions of the disease and, as the Institute of Medicine (now the National Academy of Medicine) stated in a 2015 report, the condition has not been diagnosed in 90 per cent of those affected by ME/CFS.

To arrive at an accurate diagnosis, the doctor should review the patient’s personal and family medical history, conduct a thorough physical and mental status exam, and order blood, urine or other tests. Patients should be asked about how they functioned before and after they became ill and what now makes them feel worse or better.

Correctly diagnosing ME/CFS, hard enough in adults, is even more of a challenge in children and adolescents, whose problems both within and outside of school can be misattributed to a neurological, learning or psychosocial disorder or simply laziness.

Youngsters may also get the syndrome and require a team approach with flexible educational resources and demands suited to each child’s ability to meet them.

There is currently no known cure for ME/CFS and patients should be wary of any therapy that claims otherwise. When embarking on treatment, the CDC recommends first tackling the symptom or symptoms that are causing the most problems. If it is disrupted sleep, for example, start by setting a regular bedtime routine, going to bed and waking at the same time each day, limiting naps to 30 minutes a day and removing all distractions, including television, computers, phones and electronics, from the bedroom.

If muscle or joint pain is especially debilitating, consult a pain specialist if over-the-counter remedies are not sufficiently helpful. Those with memory or concentration difficulties might benefit from drugs used to treat attention deficit hyperactivity disorder, as well as relying on organisers and calendars to keep track of important matters.

To minimise fatigue, find easier ways to perform essential chores, like sitting while preparing food or showering and breaking up tasks into small increments. Whenever possible, shop online and order groceries and have them delivered. To reduce the risk of a crash, avoid trying to do too much when you feel better.

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A significant factor of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is something called “post-exertional malaise,” or PEM. It sounds like how a healthy person might feel after a short jog on a warm day, but I think it should be called something more dramatic, like “THE AFTERSHOCK,” and always written in capitals in medical notes. It’s the varying degrees of massive exhaustion, and for me, joint and muscle pain which occurs after activity.

Each day involves multiple choices as to how you use your limited levels of energy. Often it may be that you have a small amount of energy, so you use that up and go beyond what you can really manage, like entering an unarranged overdraft. You can go into it, but you will pay big time. Sometimes the PEM hits quickly and can be a result of the completion of a relatively small task, such as carrying a large object to the bin. On another occasion, it may be a matter of going out to the pub and the PEM crash happens the next day.

PEM is like a mysterious ticking time bomb. Sometimes the crash doesn’t happen for a few days, and you’re lulled into a false sense of security where you think that perhaps you’re on an upwards trajectory. You push yourself further and harder, bigger tasks and longer activities, and then it comes like a tsunami. On these occasions the crash is all-encompassing, and for me, causes my limbs to feel like they’re crumpling. I have a greater sensitivity to light and sound. This sensitivity is already an everyday thing, but when THE AFTERSHOCK comes, the sound of cutlery being placed on a table feels like the knives and forks are actually clanging inside my brain to a very high pitch. I’m still learning how to prevent myself from pushing beyond my limits, but this careful balance seems like an impossible objective. It’s like you need to be a mystic, or as wise as Splinter from teenage mutant hero turtles.

On Saturday I went to Wetherspoons for breakfast with four friends. I upped my game and did the conversation, I survived the noisiness. I enjoyed myself. We talked about normal bloke things, like Brexit and house prices. I might have looked OK, but I felt like I was blagging it to my body, “Let’s just get through the next half an hour, don’t let me down. Keep being normal, and brain, don’t replace an intended word with something stupid.”

People with chronic illness often talk about having a certain amount of spoons to use during the day, and you choose how you use those spoons. I used all my spoons and still came home and did some tidying up. I knew I shouldn’t have tidied, but when you have energy, you start to use it like a drug.

On Sunday I crashed. My time bomb went off around 24 hours after I got back from the pub. I wilted like a plant in the heat, spending most of the afternoon in bed. You always know THE AFTERSHOCK will come, it’s just a matter of time, and severity. Over the past couple of days since my fated pub visit and tidying mission, I made a list of the things that choosing to push beyond the limits, and the resulting PEM is like:

1. A bet you take, already knowing 100 percent you’ll lose.

2. A fire you start, knowing there’s no way to put it out yourself.

3. A lemon you buy, knowing the wheels will definitely come off.

4. A panto horse where you’re always the behind.

5. A flight you choose to board, despite being informed that there’s only one engine operational and even that’s a bit iffy, but a risk you’re willing to take.

6. A kebab from the place you were previously food poisoned.

7. A meet and greet you pay for, knowing your idol will swear at you and stamp on your foot.

8. A loan you take, understanding the toll it’ll take.

9. A job you accept, knowing that you’ll have to pay to work.

10. The party you revel in, knowing your hangover will last for weeks rather than a day.

11. Jumping down a well, when you know you might be stuck there for days.

12. The match you go to, knowing your team will be thrashed, every time. It’s a mug’s game.

13. The seeds you sow, knowing there’ll only be weeds.

14. The door you open, knowing the slasher is waiting. Pandora’s box, too enticing to resist.

15. The email attachment you click upon, knowing a virus is hiding.

16. The daydream at the bus stop, knowing the driver won’t wait.

17. Drinking all the water on a sweltering day, knowing the river is 20 miles away and you have to walk.

18. Standing by a deep puddle in the rain knowing a boy racer is burning up the road.

19. Driving into the safari park with the windows down and the sunroof open.

20. Knowing you’ve accidentally set your alarm for 4 a.m. but not bothering to reset it.

I exert and I wait for the monster to take me.

Time to break. Time to fall.

Is it, was it, worth it? You’d need an accurate definition of worth to decide.

In reality, only time will tell.

20 Things ME/CFS Post-Exertional Malaise Feels Like

Daniel Moore

Contributor FROM FRONT ROW FOUNDATION

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