ME: ‘I spend 20 hours a day lying down. I have four upright hours in the day’
Sufferers of myalgic encephalomyelitis, or ME, have long felt disregarded by some medical professionals who believed their pain and exhaustion to be a psychological disorder. More recently, patient activism, combined with new data on the underlying biology of the illness, has resulted in changes in treatment guidelines and a renewed focus on ME as a biologically grounded post-viral disease.
There is no official record of how many people in Ireland suffer from ME, but international prevalence rates suggest it affects between 10,000 and 19,000 people here. Most get the condition in the wake of an infection. The severity of the symptoms vary. Some people’s illness remits and relapses while others are continuously bedbound and racked with pain. There is, as yet, no cure and no reliable treatments. And there are very few doctors who specialise in the illness in this country.
Patients themselves have never been in doubt about the biological nature of the disease.
Moira Dillon from ME Advocates Ireland thinks that even the term “chronic fatigue syndrome” does sufferers a disservice. “ME is a multi-symptom system disease,” she says. “It’s primarily neurological. Symptoms may be cardiovascular, immunological, endocrinological, respiratory, hormonal, gastrointestinal.”
One of the main reasons they drew this conclusion was because most of the patients affected were women, nurses working in the hospital, who fell ill simultaneously
She thinks that newspapers often feature people with a milder form of the disease and that this leads to a misunderstanding of how serious it can be. “Those with very severe ME lie motionless, are tube fed, suffer multiple level pain, suffer periodic paralysis, blood pressure and heart issues, muscle weakness, numbness, cognitive dysfunction, visual difficulties, muscle spasms, multiple sensitivities, gut issues, sleep issues. They have head shakes and limb shakes and very disturbed sleep ... The common cardinal characteristic is post exertional malaise.”
Many believe that progress in treating the disease has been hindered by an inaccurate belief that it’s a psychological disorder. Brian Hughes, professor of psychology in NUIG, explains how this happened: “The term [ME] was first popularised after an outbreak in the Royal Free Hospital of London in the 1950s when many people became ill. The doctors at the time concluded that there was some neurological basis to this illness and it was probably [caused by] some kind of viral infection ... 15 years later, two psychiatrists published an article in the British Medical Journal that declared the outbreak to have been mass hysteria. [They] never interviewed any patients.
“One of the main reasons they drew this conclusion was because most of the patients affected were women, nurses working in the hospital, who fell ill simultaneously. And largely from this 1970s misogyny this entered the medical folklore. It’s a case study in how historically an illness has been psychologised when it’s actually physical. The treatments being offered as a result of that thinking, have fallen short.”
In the absence of HSE guidelines on ME, Irish medical professionals take their cue from the UK’s NICE (National Institute for Clinical Excellence) guidelines. Until 2021, those guidelines recommended graded exercise therapy. This involves people being given programmes of increasing physical activity.
It’s now considered by many to be harmful for people with ME, whereas energy management, working within a patient’s reduced energy levels, is seen as preferable. The older guidelines were partly based on the now controversial PACE study on CBT and graded exercise therapy for ME, undertaken in the noughties by psychiatrists and psychologists with UK government funding. In recent years, researchers and patient advocates have reanalysed these findings.
People complain desperately of what they call ‘brain fog’, where they have cognitive issues
Tom Kindlon, an advocate and researcher with the Irish ME CFS Association, has written about this. “With the PACE study they started changing [criteria] when they didn’t get the results they wanted. We reanalysed [the data] and found that there was no increased level of recovery from the treatments. And it also showed no improvement in terms of improving work capacity.”
The consequences were huge, says Kindlon. “Fifty per cent or more people report being made worse by graded exercise ... Patients weren’t being listened to. It was also thought that there was no need to study the pathophysiology, or the aetiology of the condition, because [ME] was treatable with these non-pharmacological approaches. There’s been very litte biologic research funded in the UK. Things are gradually improving now. There have been more papers on long Covid than in the whole history of MECFS.”
Long Covid has been a “game-changer”, says Hughes. “It has debilitated so many frontline healthcare workers, people who know a lot about medicine and how diseases work. They have lingering symptoms that are so similar to ME it has led some people to conclude that it actually is ME. And these doctors are not fooled by traditional medical folklore that psychotherapy will do the trick. [Covid] has bizarrely clarified to the world that ME is not in the head, that there’s a viral pathological basis for it.”
Biological markers for ME have also been discovered. Prof Douglas Kell, a biochemist working in Liverpool University and Prof Resia Pretorius at University Stellenbosch have found, after an earlier study on Long Covid, a markedly increased incidence of microclots in people with ME. “Ten times more in MECFS people than in the healthy controls,” says Kell.
Dr William Weir, an infectious diseases expert who advised on the new NICE guidelines on ME, explains a “probable pathological model”. It typically starts with some form of infection, he says. Some people “in addition to responding immunologically to the bug that has infected them, they also sadly produce antibodies against their own tissues. They attach [to large blood vessels] and attract an inflammatory response, which means that they get cloaked in a small amount of blood clots, and they break off. That’s how those blood clots are formed.
“Those microscopic blood clots obstruct the circulation in the capillaries ... The flow of oxygen in the red cells to muscles, in particular, is reduced, which considerably impairs that person’s energy output. The same principle applies in the brain ... People complain desperately of what they call ‘brain fog’, where they have cognitive issues ... It also explains why they have autonomic problems [with] their blood pressure, body temperature, heart rate, bowel motility and things like this.”
Some long Covid and ME patients have travelled to clinics in Europe to get apheresis treatments, where the patient’s blood is filtered to remove these clots. Weir believes this can help some patients, though he doesn’t believe it can be a permanent cure. Kell would also like to see trials into anticoagulation treatments for ME and Long Covid patients. Others aren’t as confident that abnormal clotting explain the symptoms in ME or Long Covid.
Some Long Covid and ME patients have travelled to clinics in Europe to get “apheresis” treatments, where the patient’s blood is filtered to remove these clots. Weir believes this can help some patients, though he doesn’t believe it can be a permanent cure. Kell would also like to see trials into anticoagulation treatments for ME and Long Covid patients. Others aren’t as confident that abnormal clotting explain the symptoms in ME or Long Covid.
Dr James O’Donnell, director of vascular biology at the RCSI, was involved with the Irish Covid-19 Vasculopathy Study. He and his colleagues discovered “sustained clotting activation” in 25 per cent of convalescent patients, but, he says, “It remains unclear whether this ongoing clotting activation that we and others are seeing plays any direct role in the symptoms associated with Long Covid syndrome”.
He notes that anticoagulation drugs can be dangerous for patients. “Consequently, before blood thinning treatments are introduced for patients with Long Covid, we need to be sure that we are not doing more harm than good.”
Patient advocates such as Moira Dillon and Tom Kindlon think much more research is needed into ME specifically and they worry about vulnerable people spending money on expensive treatments that are unproven.
Although the underlying mechanism of ME is still poorly understood, the idea that it is a serious physical disorder is no long controversial. In Ireland, the HSE is in the process of developing their first ever clinical guidelines on the disease. HSE national clinical adviser Dr Ciara Martin chairs a multidisciplinary group of clinicians and patient representatives devising these guidelines and she hopes to see it integrated into the training of medical professionals in time. It’s too early to get much detail on this but it will do one key thing, she says. “It will establish ME as a biological illness. That has always been the concern of people with ME, that old fashioned stigma that it was a psychological one.”
Tom Kindlon from the Irish MECFS Association, first became sick with ME after getting an infection in 1989 as a teenager. “I had muscle and joint pains of various sorts. Then in college after one of the exams I got very ill and I had to take a year off. I was trying to ... exercise myself better. That’s the sort of advice that I had. I struggled on with lots of sore throats and swollen glands. Then I started developing bowel symptoms.”
When did he discover it was ME? “I managed to get an appointment with a consultant in the Blackrock clinic, Dr Austin Darragh, a well-known doctor on the Gay Byrne Show. He said I was a classic case of post viral syndrome or chronic fatigue syndrome or ME. I was very severe. I was 22. I was bed bound. They had to wash me in the bed and bring food to the bed. For the first years walking a few steps to the bathroom I would break out in a sweat.
“Initially, I had very little concentration. I’d been a bright guy. I studied at Trinity College and had points to study medicine and all I could really cope with were comics — Beano and Dandy — I’d read for five or 10 minutes and then rest for 50. Even a short five or 10-minute conversation would wipe me out. With different approaches and with energy management, I improved a bit. My cognitive ability improved but my physical stamina was still very severely affected.”
What’s his life like now?
“I need a wheelchair if I have to go any distance. I still have to spend a lot of the day lying down ... I get headaches ... I have better control of my life but I still live with my parents. I’m 50. I’ve had no relationships. I was too ill to have anything like that. No jobs. It’s really had a huge effect on my life.”
For a long time, he says, there was a stigma around the illness and he knows people who’ve been disbelieved by doctors and family members. “Marriages break up. People struggle to get disability payments. I had a doctor who said when I’d been ill for 15 years, “Are you still sick?”
Alan is very, very sick. He can barely talk. He is at a stage where he can say a couple of words maybe a couple of times a week if it’s a good week
Rosanna cares for her husband Alan who has very severe ME. She is 56 and Alan is 67. They met late in life. Rosanna is Swedish, but she has some County Down in her accent. When they met, Alan had a demanding job, “but he was also high achiever in terms of sports, particularly golf and running, and would probably have pushed on, managing it and not accepting being tired.”
In retrospect, she thinks he’d been ill for some time. “He used to spend all of Sunday afternoons reading the papers, which I thought was extremely civilised, but I think in hindsight that was him ‘pacing’. To this day I find painkillers everywhere, in his golf bag, in his office drawers, in his pockets, in his carry-on bags, everywhere. That’s not normal. In 2010, he started going to the doctors for investigation and it went downhill so that by mid-2012, he was completely bedridden. That makes it just over ten years in bed.”
When I ask how “worn out” he is, she corrects me.
“He’s not worn out. Alan is very, very sick. He can barely talk. He is at a stage where he can say a couple of words maybe a couple of times a week if it’s a good week. He can eat mashed or blended food. The key for him is that it’s fast because he can only sit propped up with pillows in bed for so many minutes. He is still able to walk, supervised, to the en suite to go to the bathroom. On a good day he can have a quick shower. He cannot wash his hair. He can hardly tolerate someone being in the room. We’re lucky he can tolerate soft light. He’s completely unable to tolerate any sound.”
How does that affect life for her? “We’re lucky that I could afford to stop working [she was a vet] and we’re lucky we have an integrated garage which is also a makeshift gym where I can work out at five o’clock in the morning. That’s a reasonably safe time. It’s also my kitchen where I blend his food because he can’t tolerate the sound of the blender. I’m constantly walking around on my tiptoes. You let go of a cupboard door and it bangs and has the potential to cause him to crash and the fear that it may cause further decline ... When he’s crashing, he has tremors which are really scary. That was one of the things at the start where we went to get him checked out but each trip to the A&E made it worse. We have to be our own doctors.”
She feels like they’ve been “gaslit” by many of the doctors they’ve encountered. “I’ve had doctors saying to me, ‘Well, if Alan doesn’t want to help himself, I cannot help him.’ I’ve also had the doctor come out and say, ‘The fact that he thinks he can walk to the en suite but not in the rest of the house means it’s clearly in his mind.’ What he didn’t understand was that Alan was preserving energy for the bare essentials.”
One doctor treated him with the now controversial graded exercise regime, where the patient is encouraged to push themselves physically. “He was to read the headlines and to do that for five minutes. And then we forced him to do it for 10 minutes the next week. He could maybe at that stage also walk around the block and then two weeks later he would try to walk a block, and a little bit further.’”
She believes this caused his condition to deteriorate. “He now needs constant care ... I do everything for Alan ... He can’t read. He can’t watch to television. He can’t listen to music. Most of my day is spent checking on him without disturbing him ... I can look at Alan and point at the window and I’m asking if it should be closed or left open ... We have developed that skill to communicate without words ... We are very fortunate because we are extremely close and I’m very grateful we have each other and are deeply in love.”
A few days later Rosanna asks to talk to me again because she doesn’t think she quite conveyed how terrible the disease is. “I’ve heard people use phrases like ‘buried alive’ or ‘living death’. It’s a pain and a suffering like we’ve never experienced ... I would pride myself on having perseverance, but I have nothing on these people. They are superheroes, to live day-in-day-out like that ... Try something: take 20 minutes, lay flat on your back in the bed. Stare up at the ceiling. Don’t move. Don’t fall asleep ... I can’t do it ... You ask what they are going to do if they get well and it’s simple things ... Alan would like to sit by the window and look outside and have chats with me. He wants to listen to music. He used to love his music now he can’t tolerate music. These are the small things they want.”
Una Hearne first experienced ME/CFS in her teens. She speaks eloquently about her situation but from time to time apologises for a lack of coherence that I don’t notice. “One of the symptoms is cognitive dysfunction,” she says. “I had glandular fever ... at age 16 and never really recovered from that properly. In my 20s, I was not able to work. I was basically on the dole ... I recovered to about 50 per cent energy and so I worked for my 30s and 40s. I relapsed at the end of 2015 and had to give up work ... The cardinal symptom is abnormal energy levels.
“They call it fatigue, but actually that’s the wrong word for it. It’s like if you have a battery and it won’t recharge fully. I estimate I have 10 to 15 per cent of normal energy now. [I] get exhausted very quickly and it takes me a lot longer to recover ... My symptoms will get worse the more exhausted I am. Pain, orthostatic intolerance, flu like symptoms, sleep disruption and more.”
What was her experience of the medical profession like? “In the 1980s nobody really believed ME/CFS was a real, physical illness. It was kind of like, ‘Oh, you’re hysterical dear.’ I knew what ME/CFS was because a friend of mine had got an article about the ‘Yuppie Flu’ and said, ‘This sounds like you.’ [But] my doctor said, ‘Una that’s all nonsense. It’s psychological.’ I learned to hide it. When I was working full time, I was sleeping most of the time outside work.”
Why does she think she relapsed? “I was working as a life coach and trainer and I absolutely loved my work. The problem is, if you overdo things with ME/CFS, you crash, and I had been pushing through exhaustion for years ... That’s a disaster with ME/CFS. My body just gave up at the end of 2015. The first thing I noticed was problems with my eyes. I went and had them checked out. They were perfect. And the doctor said, ‘It’s probably neurological.’ I knew what that meant.”
She thinks that in a society obsessed with productivity, the idea of someone needing rest and recuperation is viewed as morally suspect. She’s in an ME/CFS writers group called Pillow Writer “because we all attend online meetings from bed or sofa. We talk all the time about having to suddenly reorganise your worldview. You’ve got to find another way to be in the world.”
What is her life like at the moment?
“I spend 20 hours a day lying down. I have four upright hours in the day. That includes sitting. So everything has to happen in those four hours. The cognitive dysfunction, the longer I’m upright, the worst that gets. Pain will set in and get worse. Most of my energy would go on just feeding myself, keeping myself and the house clean, the daily basics of living.
“I end up with about six to eight hours per week which I call disposable time, like disposable income. All work, all socialising, all hobbies, happens in those six to eight hours. It’s very, very limited in one way but on the other hand, you learn what’s really important and to put your energy into what is really of value to you.”
Energy is like money you have to spend it very very carefully and be firm setting boundaries even if people don't understand because if you go over drawn everything crashes with dire consequences you cant control.
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