- I was diagnosed with Chronic Fatigue Syndrome in 2015 after months of struggling both mentally and physically to do simple tasks.
- CFS, or ME (myalgic encephalomyelitis) is thought to affect up to 30 million people worldwide. There is no proven cause or diagnostic test, and chances of recovery are almost none.
- Some people I spoke to who suffer from ME have to use wheelchairs to travel short distances, or have spent years in hospital. Others can’t get through a day without lying down to rest.
- The illness derails careers and changes the course of your life, yet many doctors still think it’s in the mind, suggesting therapy, antidepressants, and exercise as treatment.
- According to the CDC, most medical schools in the US do not have ME/CFS as part of their physician training, which leads to the illness often being misunderstood.
- ME consultant Dr. Paul Worthley told me: “What we don’t understand, we put down to [being] psychological. It’s the default in medicine.”
- *Names have been changed upon request.
- Visit Insider’s homepage for more stories.
After months of struggling both mentally and physically to do simple tasks, dealing with constant, extreme exhaustion that wouldn’t go away no matter how much I slept, in 2015, a doctor told me I had Chronic Fatigue Syndrome (CFS).
Having never heard of it, my response was sceptical, and somewhat annoyed – similar to when you’re told “it’s only a virus” after having a miserable cold for weeks on end.
It felt like a cop-out. But when she told me that there was a chance it would never go away, and the only way to help it was to “avoid exerting too much energy,” I decided to do my research.
Since then, I’ve learned many things about CFS, including what it is and, just as importantly, what it isn’t.
I’ve also come to realise that, despite having phases where I suffer, I’m one of the lucky ones.
ME affects millions – but there’s no diagnostic test
Officially called myalgic encephalomyelitis (ME), the condition – described as a “a disabling and complex illness” by the CDC – involves extreme levels of fatigue, which last a long period of time, disrupting your daily life. Rest does not help alleviate the symptoms. It is thought to affect at least 17 million people worldwide – with some estimates going up to 30 million – and four times as many women as men. According to the NHS, it tends to develop between your mid-20s and mid-40s.
Despite the fact its existence is still little-known, it turns out the condition has been around since the 20th century. An outbreak hit the Royal Free Hospital in London in the 1950s, followed by Lake Tahoe, Nevada in the 1980s where the epidemic was nicknamed “Raggedy Ann.” After that, cases started to crop up all over the world.
In 2015, a report by the American Institute of Medicine defined ME as “an acquired, chronic multi-systemic disease biological in nature.” It added that the symptoms included “immune, neurological and cognitive impairment.”
While there is no proven cause (and no official diagnostic test), it appears that most cases seem to be triggered by viral infections like glandular fever.
My CFS was triggered by a miserable bout of the Mumps (yes, people still get them, and at an alarmingly rapid rate). Once the virus was gone, I was left feeling completely wiped for weeks, to the point where even walking up the stairs to my apartment made me need to lie down. It also came along with headaches and a foggy feeling in my brain which made it hard to concentrate.
‘I had to accept I had a problem when I woke up one morning and couldn’t get out of bed’
While similar cases are certainly common, the many people I have spoken to who live with CFS contracted it in different ways.
34-year-old Sophie Crowley from Hertfordshire, UK said she believes her ME was triggered by a bad chest infection just over a year ago.
“My daughter at the time had only just started nursery, and she got every virus there is,” Crowley, who now runs the blog “Mummying and M.E.,” told me. “I reckon she probably passed it on to me.”
After suffering through back-to-back chest infections which she “basically never recovered” from, and finding that she “could not cope with walking,” she was diagnosed in April 2019.
Clare Josa, 46, believes her CFS was brought on by “having four fillings replaced in four weeks while living in a student flat with no central heating.”
“I was at university when I got ME,” the author of “Ditching Imposter Syndrome” said. “I had to accept I had a problem when I woke up one morning and couldn’t get out of bed, despite having an exam.”
“At the time, my doctor told me I should go ‘have a nice little nervous breakdown’ and then I would be ‘fine,'” she told me. “She assumed it was burnout with depression.”
That was 20 years ago, and Josa is still living with the illness.
22-year-old Holly Clark* was the youngest person I spoke to who had been diagnosed – and she said she has suffered with it since she was nine.
“When I was seven I had meningitis and was in intensive care for a week,” she said. “I seemed to have made a good recovery.” However, she said the function level of her kidneys started decreasing, and it became apparent she had chronic kidney disease – which is when her ME symptoms kicked in.
“I was nine, and I’d be too exhausted to go to school,” she said. “I got referred to a paediatrician, who took one look at me and said, ‘I think you probably have ME.'” The doctor told Clark she should be better within six months.
By the time she hit high school, she was too ill to even attend.
28-year-old Jessica Taylor from Kent told me she had a similar experience after she first became ill with a flu-like virus 14 years ago.
“Everyone in my class got it, but I just didn’t fully recover for it,” the author of “A Girl Behind Dark Glasses” said. “I kept trying to push through it then crashing. Within six months I was unable to go to school – I’d just turned 15.”
After having glandular fever, she was diagnosed with ME and told it would go away, as it was just post-viral fatigue. But, yet again, it didn’t.
“The doctor’s surgery is literally 10 seconds down the road and I couldn’t get there, I had to use a wheelchair,” she said.
Her illness worsened to the point where she spent four years in hospital – from the age of 15 to three months before her 20th birthday.
“At first I couldn’t speak, couldn’t move, couldn’t eat. I was fed through tubes,” she said. “It pretty much looked like I was in a coma.”
Being ‘tired’ is just one small part of suffering from CFS
When I was diagnosed, staying in bed seemed like the best (or sometimes only) option, yet sleeping didn’t make me feel better.
This is common with people who suffer from CFS – most find that rest doesn’t help, no matter how tired you feel.
That’s because being tired is only a small part of it.
Michelle Burgess, 51 from Whitstable, was working in finance in the city and leading “a full-on London life” when she was diagnosed in 2013.
“I was working for an executive in Barclay’s head office in a very senior role. I was forgetting things like his mobile number and putting things in the diary in the wrong place – I never made mistakes in my job. I was starting to get scared I was getting early-onset dementia.”
She’d have a headache that lasted the whole day, then straight after work would crawl into bed.
Burgess initially took a six-week sabbatical, but “basically felt crap the whole time.”
“The first six months I took off, I couldn’t walk up the stairs – my husband set up a bed for me downstairs. I never slept more than two hours a night.”
In June, she saw a doctor who happened to have had ME herself, and she immediately signed her off work.
Crowley, who was previously a teacher but had to give up her job because of her illness, uses a wheelchair to travel more than 20 meters, because that’s the farthest distance she can cope with when it comes to walking.
When she first started seeing her GP with her chest infections, she said: “The pain in the muscles all over was excruciating, I would do a tiny bit of activity then be totally broken – my body would shut down.”
Now, her young daughter is in full-time childcare, because she said she “can’t get through a full day without rest – lying down, in silence.”
“I walk a little but and am just beside myself with exhaustion,” she said. “Like I’ve written on my blog, it’s the feeling of having the flu, running a marathon every day, and being hungover, all at once.
“I can’t continue my hobbies because I can’t manage them, I just don’t have the energy. The payback from them is too great.”
While I’ve had phases where I’ve felt completely fine, my symptoms come back in bursts. I still have days where simply getting out of bed is a challenge, or when my brain is so foggy it’s hard to concentrate. This is the best way to describe what I experience – brain fog that sometimes simply won’t lift.
“When you have a broken leg, you might not be able to walk, but you can watch TV, keep yourself occupied with Netflix,” Taylor said. “If you have ME, you can’t do that. I don’t have the energy to watch something, because that’s too much stimulation. Every angle of life is affected by it, and I don’t think people understand that.”
Burgess added: “I can manage about two hours out of the house socialising – but with the getting ready, getting to the place, then the noise and concentrating, and people talking, then getting home, I’m completely shattered the next day.”
It can derail your entire career and future plans
As a Master’s student at the time of my diagnosis, I faced a challenging few months trying to stay on top of coursework. Luckily, good relationships with my professors, hard work, and the timing of the illness – it hit me right as coursework was finishing – saw me through, but not everyone is as lucky.
A former Oxford University student wrote in the Guardian in 2016 about how she got ME during the final year of her degree following a bout of glandular fever, but had requests for extensions on her coursework denied.
Many others have faced similar problems. According to a 2016 BBC article, one in 100 children also miss at least one day of class a week because of CFS.
This becomes a bit more complicated for working adults.
“Working for a bank they had a good long-term sickness plan, then I was basically retired from the bank after I’d used up my time with them,” Burgess said.
Six years later, she said she couldn’t go back to her job because of the unpredictability of how she’ll feel day-to-day.
“I know that I couldn’t go back and do a role like I did in the city. So much is expected of you,” she said.
Josa, who said she initially “physically couldn’t get out of bed” and was experiencing “horrific migraines and extreme exhaustion,” now manages to work by running her own business, so she can work and rest when she has to.
“I’d been working for 12 years when I realised I was fed up giving my energy to someone else,” she said. “[With ME] you have a certain amount of energy to spend, and when it’s gone it’s gone. Running my own business, which I’ve done for 15 years now, means I can actually plan how I spend my energy, and when.”
In the first full-time reporting role I took on after being diagnosed with ME, I found it difficult to explain to a manager that some days I was too exhausted to come into work, but the likelihood was I wouldn’t feel better after some rest.
Now, I’m lucky that I have more good days than bad – but there are still some mornings where I simply have to stay at home.
The worst part is the likelihood that it may never go away
A 2011 study published in medical journal The Lancet, based on a PACE trial, had originally suggested that the illness could be made better with exercise and psychological therapy, but an analysis of the data years later showed that as long as you’re already getting standard medical care, the chances of being helped by treatment are 10% at best. The chances of recovery are almost none.
A re-analysis of the 2011 study published on March 22, 2018 suggested that there are no longer-term benefits of exercise or therapy at all.
Writing in the journal BMC Psychology at the time, lead author Dr. Carolyn Wilshire, from the University of Wellington in New Zealand, said: “Until there is positive evidence to suggest otherwise, the conclusion we must draw is that PACE’s treatment effects are not sustained over the long term, not even on self-report measures.
“CBT and GET have no long-term benefits at all. Patients do just as well with good basic medical care.”
Earlier this year, however, the authors of the original study responded by saying “neither the criticisms nor the reanalysis offer any convincing reason to change the conclusions of the PACE trial.”
Many health professionals dismiss the disease as ‘all in the mind’
Over the years of seeing countless doctors, most have suggested my illness is psychological. More than once, and with different practitioners, I’ve been told that the illness was likely all in my mind.
During a particularly difficult couple of weeks last year, a doctor asked: “Have you considered seeing a therapist?”
My experience is shockingly common.
According to The Guardian, a survey in the UK carried out by the ME Association in 2016 found that 46% of patients thought that the care provided by their GP for CFS was “poor” or “dreadful.” Some 18% had no contact with their GP at all as they found they made their illness worse by not taking them seriously.
Burgess said one specialist told her she should take antidepressants, while another “actually made me cry because he was so forceful in his questioning of me, almost like he didn’t believe me.”
Josa told me that over the past two decades, she hasn’t met a mainstream doctor who has been able to help her – or who has really listened.
“The most they will do is check your iron levels, or if you’re really lucky, they will check your thyroid,” she said. “I still have friends being offered antidepressants.”
“My family and I go non-mainstream for our healthcare as a result,” she said, adding that she has also studied to become a meditation and yoga teacher, since she finds her biggest trigger is stress.
However, exercise can be complicated when you have ME.
“You have a little bit of energy, you do some exercise, then you spend three days in bed,” she said.
Within the first few years after my diagnosis, working out, which I loved to do, often made it worse, rather than better, as most doctors suggested, and eating only provided me with fleeting bursts of caloric energy.
Luckily, by giving myself the time I needed and trying not to push myself too hard, I started to feel better with time, staying home or cancelling plans when I didn’t feel up to it.
Eventually, I hardly struggled with the fatigue and started exercising regularly again – I had close to a year with no symptoms at all, and felt better and became fitter than I ever had been. I even managed to train for and complete a half-marathon.
‘I had no empathy that she was probably doing as much as she possibly could’
Dr Nina Muirhead, an NHS dermatologist and surgeon, became ill with ME herself in September 2016 after a bout of glandular fever.
She told Insider that while she initially had to use days off and evenings to cope with admin as she was struggling to concentrate at work, she saw 13 different doctors before she was diagnosed.
“I started changing where I would park so I’d be as close as possible to things, changing what I was wearing so it would be easier to get on and off,” she said.
Her illness came along with headaches, nausea, and vomiting, before she was ultimately signed off work for 15 months – six of which were spent completely bed-bound.
“I was unable to read or watch TV,” she said. “I was severely unwell. I couldn’t live in the same house as my children for four or five months.”
She started to get better little by little, using a wheelchair at times and easing her way back into work. Now, she works three half days a week, and rests in between.
While she has since dedicated time to researching the illness, she admitted that in 2012, she saw a patient with ME for a rash before knowing anything about what it really was.
“I asked ‘are you getting some exercise?’ and they said, ‘occasionally,'” she said. “I said, ‘you should do more of that.’ I had no empathy that she was probably doing as much as she possibly could and that occasional swim was as much as she could manage. I came out of that thinking I was a really nice doctor.”
She went on to deal with plenty of dismissive doctors throughout her own illness, with one telling her she needed a social life, while another said “it’s not a disease, it’s for attention.”
“I was told to do an extra 250 steps a week earlier this year,” she said. “There’s this real entrenched ignorance that if you do more, you’ll be able to do more.”
She added: “If you turn to that person who you think will help you and they turn around and say ‘if you ignored your symptoms you’d be better, it’s actually really harmful.”
Dr Paul Worthley, who now works as a consultant with the ME Trust following a career spanning general practice, pediatrics, and palliative care, explained that people with ME aren’t lacking motivation, so you can “easily tell the difference from depression.”
Muirhead added that while every patient gets some different symptoms, the core things are the same.
“It’s a person who has a normal life, normal ideas and expectations about their life, and within a few weeks or months can’t do anything like they normally can,” she said. “They’re still the same person, they’re not suddenly depressed. Nobody has ever come out of the illness and said it was because they were depressed or that they kind of made it up.
“The symptoms always precede any sort of psychological breakdown – it’s never the breakdown happens, and then people get symptoms.”
Doctors are ‘stuck between a rock and a hard place’
Crowley said she finds her symptoms are taken seriously, but she thinks the medical profession are “stuck between a rock and a hard place.”
“I think they want to be able to help … but there isn’t anything they can do, because there’s not the research going into it. It’s the blind leading the blind, really.”
She added: “There are still some doctors who don’t believe it exists – there isn’t a blood test, there’s no specifics, and the medical profession struggle with that. The doctor who diagnosed me said it’s purely based on the patient’s symptoms – you have to believe the patient.”
Worthley said that not having a diagnostic test certainly doesn’t help.
“I look back at the days before MS was diagnosed and we had tests, and it was thought to be a hysterical condition,” he said. “It’s hard to believe that now.
“What we don’t understand, we put down to [being] psychological,” he said. “It’s the default in medicine.”
The problem appears to lie beyond the doctors, though.
According to the CDC, most medical schools in the US do not have ME/CFS as part of their physician training, which leads to the illness often being misunderstood.
Muirhead went so far as to say she believes the medical profession have been “brainwashed.”
“That’s quite a strong thing for me to say, but I’m a doctor and I didn’t get taught about this illness and had a very good medical training,” she said.
She added that Oxford University refused to share what it is currently teaching on the topic.
Meanwhile, when talking to me, she read out a section of a training course “for continued professional development for GPs” that states that “behavioural therapy is an ‘effective treatment’ for those with ME.”
“Any GP reading this will think if they have counseling, they will get better,” she said. “Then when doctors aren’t taking their patients seriously in any way shape or form, it’s kind of not their fault.”
Worthley said in order for ME to be properly taught to medical professionals, it needs to be recognised and acknowledged, and needs to have its own department.
“There isn’t an ME specialism, you cannot become an ME specialist,” he said. “It’s awfully hard to know how to manage and get doctors on board.”
Trials and research are ongoing – but it’s understanding that patients need
The National Institute of Health in the US launched plans to research people with CFS in 2015, with director Francis Collins stating: “Of the many mysterious human illnesses that science has yet to unravel, ME/CFS has proven to be one of the most challenging.
“I am hopeful that renewed research focus will lead us toward identifying the cause of this perplexing and debilitating disease so that new prevention and treatment strategies can be developed.”
In 2017, the NIH then more than doubled its spending on the research to around $US15 million, allocating funds for four ME/CFS research hubs in the US that would receive a total of $US36 million over the next five years.
Meanwhile, in the UK, in 2016 the NHS announced plans to trial a therapy to treat two-thirds of the children who suffer from CFS. By using online behavioural therapy sessions on 734 children, the trial – which is still ongoing – aims to adjust children’s sleeping habits and activity levels to try and adapt the way they live and alleviate the symptoms.
However, for me, being pushed to do more exercise, sleep more, or try therapy certainly wasn’t the answer, something that Worthley understands through his experience with patients.
“It’s about building up a physiological understanding – the basics of getting a good night’s sleep, managing the day, and pacing activity so you’re not trying to push through, but working within your limits,” Worthley said. “Meditation and things like that can help … and proper rest periods.”
Taylor, who is now married and has even had a baby, is now one of Worthley’s patients.
“He’s the only doctor who has completely taken me seriously,” she said. “He just reaffirmed my faith in doctors.”
‘It helps to not feel so isolated’
For a lot of people with ME, figuring out how to self-manage is just as effective as any medical help.
As Clark said: “There hasn’t really been a core support system for medical professionals from my perspective … [it’s been about] working out what I can and can’t do.”
While in hospital, Taylor taught herself to speak again by coding a sentence a day in a diary. “I wouldn’t be able to say full words, but I could say the beginnings of a word,” she said.
While she experienced “sensory overload” when she finally left the hospital and was “reintegrated into the community,” her improvement happened over time due to what she calls “a mixture of nutrition and physiotherapy.”
“It took nine years to be able to stand up for the first time, then it started improving from there really,” she said.
For both Crowley and Burgess, who also runs an online store, blogging has been a way to share the things that help her in her day-to-day life.
“It gets a bit lonely,” Crowley said. “But the chronic illness community is huge, and everyone’s on social media because people are in exactly the same position – they’re at home, they can’t work, they’re prisoners to their symptoms really.
“It helps to not feel so isolated.”
Clark agreed that having support is crucial.
“I’m surrounded by people who are really supportive,” she said. “It is possible to live a normal life, and being surrounded by good people is what makes the difference I think.”
Burgess and her husband got two dogs “to keep me going when I was stuck at home all on my own,” she said. “It gave me a reason to get out of bed.”
Josa, meanwhile, said she has learned to “treat energy like platinum diamonds.”
“Constantly choose not to spend it in places that drain your batteries,” she said.
‘When our patients don’t get better, what do we do?’
Burgess has had to come to terms with the fact she still wakes up each day not knowing how she’s going to feel.
“I could wake feeling fine and an hour later feel rotten. It’s frustrating,” she said. “I get fed up, although I do know I am lucky that my symptoms are not as severe as they were, and as some people’s are.
“In my own little bubble I think I’m doing quite well, but I’m not really leading a normal life. Whatever normal is, I don’t really know.”
Worthley stressed that it’s important for both patients and doctors to realise they will always be misunderstood by some, so “not to waste your energy on trying to educate everyone.”
“Some people will never, ever understand it, while other people intuitively just get it from the word go – it’s about cultivating those friendships from people who understand,” he said.
He added that it’s easy to “feel totally helpless as a doctor” seeing the same patient with the same symptoms over a number of years.
“We’re so geared up to treating people who get better – when our patients don’t get better, what do we do?” he said.
“Some people do respond in terms of being able to get better little bit by little bit, others are stuck in a terrible, terrible place,” he said. “It’s awfully hard as a doctor – you feel totally deskilled and out of your depth and have nothing to offer.
“But the fact you’re still talking with them can mean a huge amount instead of feeling totally abandoned. I just have to stick with that.”
This is an updated version of an earlier Business Insider story.
*Name has been changed upon request.
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