An estimated 250,000 people in the UK suffer from Myalgic Encephalomyelitis (M.E.), with roughly a quarter of these patients house- or bed-bound. But research into the condition is significantly underfunded as less than 1% of all active grants given by UK mainstream funding agencies are supplied to M.E./CFS (Chronic Fatigue Syndrome) research. Eleanor O’Donnell speaks to two local women M.E. sufferers about their difficulties obtaining diagnoses, treatment, advice and sympathy.
Before she was diagnosed with M.E., Emma Roe had consultations with five medical practitioners, three of whom refused to recognise that there was anything medically wrong with her.
Emma had to cancel our interview three times due to M.E.-related fatigue before I was able to visit her in the comfort of her room, on her bed. When I arrived, she was overly apologetic about the missed meetings and said she was pushing herself to complete the interview, despite her inability to leave the house.
Aside from the constant frustration of having to explain her condition to people, Emma spoke about the anxiety that she has to live with every day alongside her symptoms.
‘Everything I do there’s something at the back of my head thinking, “You may pay for this later” and it’s affected my confidence, particularly at work, because my memory isn’t so good. I get brain fog so I struggle to retain and take on lots of information in one go.
‘If it’s really bad I’ll get pain like headaches I can’t get rid of, breathlessness, aches, and an inability to withstand any standing or speaking. You’re lying in bed but you’re literally out of breath like you’ve just run a marathon.’
Does she get scared? ‘No. I was scared before someone even suggested to me I might have M.E. There have been times when I didn’t know what was wrong with me and I’d think, I’m just going to have to kill myself.
‘I used to just completely panic. I used to think, I can’t carry on working – how am I going to have a career? I can’t work, I can’t have relationships, I can’t do any of that stuff if this is what’s going to happen to me. There will be a point where there’s nothing.’
Emma says she doesn’t always get taken seriously. ‘My family and close friends are wonderful. Historically work’s been difficult and people you know less well will make insensitive remarks and silly assumptions.
‘I got told by a locum there was nothing wrong with me and I just needed to lose weight, I got told by a GP I needed better breakfasts and then I just got told repeatedly by every other matron or GP I saw that I was mad. I’m just mad, I’m just highly anxious.’
Emma found doctors’ inability to disentangle her mental health from her physical condition particularly frustrating. ‘The GP said to me, “You have M.E. and anxiety and depression” and I was like, “That’s not relevant, I have M.E.” But he wouldn’t seperate them. Nobody was ever comfortable to just tell me that because being mad had to be part of it.’
Emma was comparatively lucky, though. In a society where there is a serious lack of information about M.E. and a large gap in research into recognising and diagnosing the condition, Emma was diagnosed within a month. ‘If you have a GP who doesn’t believe in it, you’re fucked,’ she says bluntly.
Emma’s specialist offered her no treatment. Instead she was put on ‘a twelve week group programme called “Activity Management” that teaches you about how recovery in M.E. should work.’
‘It made me look at my life completely differently. Not everything has to be done perfectly – it’s really okay if that job’s half done or if that job waits, it’s really okay to cancel on that friend.
‘The most valuable thing I got from it was using mindfulness and relaxation. If I get a nice slot of mindfulness at work before I start to feel tired, I can generally avoid it [feeling tired].’
And how has it affected her relationships? ‘It’s made my relationships better. I feel less angry about things, I’m far more philosophical about things because I understand what it’s like to struggle. It makes me a better partner, a better friend, a better sister.’
Emma isn’t optimistic about a cure being discovered. ‘You see little bits of evidence that it’s being looked at and considered a bit more so I feel hopeful about it but I don’t know if they’ll ever find a cure. It would be nice if they could find a medical treatment for it.’
But she is positive about her own future. ‘I would like to be able to run again and I’d like to be able to not worry about my career but other than that I don’t worry about getting better. It is what it is. I think you’d go mad if you thought too much about life without M.E.’
I also spoke to Claire Hawk, who has had her life dictated by chronic fatigue for six years and is finally on the brink of receiving a formal diagnosis – even though GPs have told her she is likely to have had M.E. for years.
Like Emma, Claire finds it frustrating to suffer with an invisible illness that no one understands. ‘I find myself explaining my condition a lot, which is exhausting, repetitive and scary – it makes me vulnerable to disbelief.’
‘As my condition has got worse, the symptoms have become more obvious, which has helped my loved ones understand better. Recently I started using a walking stick to help with my balance when I’m outside, I feel like it gives me “permission” to walk slowly as it’s a visible badge of disability.
‘Managing my energy levels is a constant struggle, trading off what I want to do with what I need to do, if I want to avoid repercussions. The reality is I often do too much one day and do nothing the next. This isn’t ideal but I get very bored – I’m an achievement-oriented person.’
Other symptoms include brain fog, muscle and joint pain, cold and flu symptoms, trouble regulating body temperature, dizziness, palpitations after standing for ten minutes, sleep disturbance, sensitivity to light and noise, muscle twitching, and poor coordination and clumsiness. ‘All I could do to get clean for a while was to lie in the bath, I couldn’t raise my arms to wash my hair, my husband had to help me get out.’
For much of the six years that she has been suffering, Claire and her doctors have put her fatigue down as a symptom of major depression, but when that depression lifted and the fatigue worsened, Claire knew that there was something else wrong – no one has been prepared to listen, though.
‘I went to the doctor about my chronic fatigue in the summer of 2015, and was advised to exercise. The doctor said, “Enter yourself for a 5K! You could surprise yourself!” I did not enter myself for a 5K.
‘One doctor said, “I don’t think you’d get a diagnosis from anyone in this practice, they don’t think it exists” and another said, “Yes, you probably do have M.E./CFS but there’s no treatment apart from CBT and you’ve done that.”
‘In September 2016, I joined the after-school staff circuit session. I did one session and it took me over two weeks to recover from the effects of it – I knew this wasn’t normal.
‘In the summer of 2017 I saw the GP again because my life was shrinking to working three days a week and recovering for the remaining four. At this point she did agree that I could be referred to specialist services but I was about to move house so she said my next doctor should do it.
‘Fortunately my new GP is excellent and takes me seriously. He called me to say he would refer me directly to the specialist chronic fatigue service. It has a six month waiting list, so I hope to be seen by a specialist sometime in May/June.’
How much has it affected her life? ‘It has ended my teaching career. I resigned my second-in-department responsibility and went down to three days a week. Ultimately even this became too much. I’ve left teaching and will never return to it, despite the fact I loved it and was good at it.
‘Instead I have taken a part-time job working for the council doing admin for school admissions, and I’m not even sure if I’ll be able to do this.
‘I socialise very little and it’s very rare that I do anything in the evening. I can’t go to gigs or festivals any more which is a big loss – I love live music. My social circle is very small, but is high quality! Lots of people I thought were friends dropped me when I didn’t get better.’
To say that life with this illness is hard would be understating the situation but Claire’s outlook on life is inspiring. ‘I work hard to accept my illness and limitations, and to let go of the anger and frustration for the life that I could have had.
‘I use a lot of small life-hacks to help and I am keeping a diary to track my symptoms and activity levels to try and find a sustainable level of activity that doesn’t exacerbate things.’
Claire is hopeful for the future, within her own life and in the world of medicine in regards to diagnosing and treating M.E. She is grateful to have a new job that understands her condition, a GP who takes her seriously, a husband who helps enormously, friends who are sympathetic, and family who are finally coming to terms with the severity of her situation. Even though she has had to come to terms with the choice of having children being taken away from her, she says that she enjoys being an auntie.
How does she feel about her future? ‘I’m just focused on now, really, thinking too far ahead is scary.’
For more information M.E. visit the ME Association website, and make sure to read Portsmouth campaigner Sally Callow’s week long series on life with M.E. and her campaign to raise awareness of the condition, ME Foggy Dog.