Hannah Latham looks at ME and meets sufferers living in the West Country as they search for a meaningful diagnosis and a path to recovery…
There is an illness that is five times more prevalent than HIV, the severest symptoms of which have been likened to full blown AIDS. Many people, including some medical professionals, believe it doesn’t exist outside of the mind. When I was a teenager I had a friend who suffered from it and I just thought it was a clever way to miss his least favourite lessons at school. It is Myalgic Encephalomyelitis or ME, and the lack of knowledge and prejudice that remains around this debilitating illness is shocking. I was appalled at my own ignorance when I heard these stories.
Diane* lives in Bristol with her husband and three children. Her eldest, Rosie, who is 30, suffers from severe ME. After she caught a virus at the age of 12 Rosie suddenly became more and more ill. “She couldn’t breathe properly because the movement of her ribs was excruciating. She couldn’t stand light, couldn’t talk, couldn’t bear to be touched and was in terrible pain, ” says Diane. Rosie’s grandmother had suffered from ME for years and Diane noticed a similarity in the severity of the symptoms. After not making much headway with their GP because the mainstream medical belief is that there is no definitive test for ME, Diane and her husband took Rosie to an NHS specialist in The Pennines. “The doctor did blood tests and a thorough neurological examination. The tests came back positive for enterovirus.” This family of extremely aggressive microscopic viruses lives in the stomach and is known to cause polio, heart disease, diabetes, meningitis and more (there are 26 diseases and syndromes on the list). Some ME experts in the UK believe that enterovirus can cause ME, although this view is not generally accepted across the NHS. Rosie’s specialist diagnosed her with ME and thyroid disease,” says Diane. That was 17 years ago. Rosie was too ill to go to school again and is still bed-bound for much of the day.
It’s not uncommon for people to have trouble getting a diagnosis. Adrian Bonds who is 48 and also in Bristol, suffers from exhaustion and extreme pain all over his body (except for the top of this head and his genitals). He was diagnosed with post viral fatigue syndrome in 1995 when he was living in Hong Kong. When he returned to the UK he continued to feel unwell. It took three years of seeing GPs and specialists in this country before he was given a diagnosis of Chronic Fatigue Syndrome (CFS). “Whenever I brought up post viral fatigue syndrome I got no answer or they just shrugged their shoulders,” he recalls.
Compounding the problem for many people in need of a diagnosis, is the confusion over what is defined as Chronic Fatigue Syndrome and what is defined as ME. Although the NHS website lumps the two conditions together, (and labels it ME/CFS) many medical professionals and researchers believe that this combined terminology is wrongly putting two unrelated conditions under the same umbrella.
Dr John H Greensmith, a research psychologist and ME sufferer, wrote to us at The Spark last year. He says: “ME is not fatigue as we normally understand it. It does not come on, as tiredness does, after physical or mental exertion, and it does not dissipate after any amount of sleep. ME sufferers have a range of symptoms which ‘fatigue’ alone does not cover. ME sufferers do not have Chronic Fatigue. People with illnesses, in which Chronic Fatigue may be a consequential symptom – and from which they may recover in time – do not have ME. It is not the same disease and should not be treated as such.”
Another problem for ME sufferers is the persistent belief in some medical circles that ME is a psychological disease. This might explain why the NHS website describes ‘ME/CFS’ (as it terms it) as a physical illness but recommends cognitive behavioural therapy (CBT) and graded exercise therapy (GET) as treatments. These treatments are more appropriate for illnesses such as depression. Adrian and Rosie both found that GET made them worse. “My GP told me to exercise and I haven’t been able to work since,” says Adrian. Diane also told me that Rosie felt debilitated after trying GET, and could do far less than before.
A common theme amongst the stories of the ME sufferers I spoke with was that they had all, at some point, been given a diagnosis of depression by their GP. None of them felt that they had ever been clinically depressed and were merely frustrated and upset by the lack of understanding of their situation.
Jane Hart* is 41 and lives in Bristol. After becoming ill she was unable to work or leave the house without someone to help her. “I didn’t really have a life for about 10 months. It was almost as though I had flu but I had real shakes and nervousness, my heart going quickly, rashes, weak wobbly legs, weak stiff arms, veins standing out. My head would be spacey and whizzing at times.” After a few months and various diagnoses, her GP decided she had CFS. For many people it’s a relief to get some answers, but for Jane it wasn’t. “You’ve got this strange illness that people can suffer from for years. No-one knows how long it will go on for, how you get better or even if you can get better. That can be really damaging,” she says.
Jane ignored advice from an occupational therapist based around exercise and went on her own journey to find a solution. “I was doing a lot of reading and soul searching, looking on the Internet, trying different things,” she says. She believes that Lightning therapy was among the treatments that worked for her. Lightning therapy was developed from the theory that ME sufferers experience excessively high levels of adrenalin in their bodies. The premise is that if you have ME, your body is operating in a constant state of “flight or flight”. This theory is controversial within the ME community, as it has never been medically proven. I spoke to many people who had either tried Lightning therapy or knew someone who had. The results were extremely mixed, with some people relapsing severely after using it. If you are thinking of trying this treatment, the prevailing consensus is to do some thorough research first.
Jane was able to use her illness to reflect on her own needs and life direction. “I thought a lot about myself as a person and what my anxieties, tendencies were, if you like, before I got ill,” she says. “No matter what way people do that I think that’s it’s a really valuable thing: to understand yourself. Another important thing is to find out the things you really want to do and think about them, dream about them, meditate on them with the trust that it will happen.” She is now on an art course she’s been meaning to do for 20 years and she loves her job.
I came across stories of recovery. One was Kitty Smart, who was 24 when she became ill. It took her a year to deteriorate and then she became bed-ridden for four years. “My energy was so low I really couldn’t open my eyes and sound was too much for me,” she explains. “I was absolutely chucked out of life, taken away and put in a different world where I couldn’t really understand things anymore.”
For the first year Kitty tried whatever she could find – mainstream or alternative – that promised a cure. “You’re prey to anything that might help you and that in itself is exhausting: trying to get yourself better, trying to find something that helps,” she explains. She realised that this was not working and that she had to give in and just rest. “It was just like ‘this is where I am and this is where I’ve got to be’ and that was the most helpful thing I learnt during this time.” She saw a crystal healer every week for four years which gave her something to look forward to. Kitty explains: “My healer realised it wasn’t my physical energy she could do anything about but she just helped me to be in that state. It was very much about surrender.”
After four years something started to shift in her body. “Suddenly energy was just going through me,” she says. Despite the fact that she was immobile in bed, she was burning up so much energy that her mum had to bring her bowls of pasta and potatoes. She then had the urge to get active again.
“When I was ill, if I did anything active, I would feel extra awful for weeks. Suddenly it was the opposite. I had to keep on doing things to build up my muscles again. That was actually very scary.”
Now 34, living in Frome and leading an active life again, Kitty learned a lot about herself during her years of illness. She says she had visions and experiences outside of her physical body while she was in bed for those years. “It was the most fertile time of my life of learning,” she says. “I knew that was where I was meant to be: working on myself. What was going on in my body was a reflection of what was going on in the earth.”
A big part of Kitty’s journey back to a healthy life was letting go of her expectations that came out of her spiritual experience. “I thought I was going to become a shaman and it turned out that wasn’t appropriate for me. The journey back was really tough. It was about becoming really normal, practical and grounded. I’ve closed down that shamanic stuff. It was appropriate at the time but I don’t think I’ll ever work in that way again. It always stays with me though.”
Kitty now works part-time, lives with her husband and is expecting their first child. There’s no way of knowing what triggered her recovery but she found a way to be at peace with the experience and to value it.
“In a sense I’ll always have to look after my energy. I couldn’t work full-time. That just seems sensible. When I look at other people I think everyone could look after themselves a bit more.”
There are many, many people out there with an ME diagnosis who have not found any treatment that works for them. It seems that the support ME sufferers get is not adequate in the majority of cases. Charities and other groups are pushing for the government to recognise that the medical picture is not clear and to put more funding into biomedical research. If the government would put resources into exploring all this research there would be a much better understanding of why some people respond to CBT and GET or things like the Lightning Process and why others don’t. If we could study people who recover, and if more was known about their journey, then more people would be able to join them.
*Some names have been changed to protect privacy.
• Loss of memory and concentration, balance, coordination and fine motor skills and difficulty with thinking and absorbing information.
• Abnormalities of sleep rhythm, temperature control, digestion, blood pressure and circulation, heart rate and response to stress.
• Sensitivities to light, sound, touch, some foods, medications and chemicals such as perfumes, etc.
• Pain of many kinds in muscles, head, chest, joints, stomach, etc.
• Exhaustion and exacerbation of symptoms after exercise, which may not manifest fully for up to 72 hours.
• Write down your symptoms as clearly and often as you can.
• Find a GP who is sympathetic or has some experience of ME.
• Push for tests to make an accurate diagnosis and to exclude other illnesses.
• Ask for support and understanding from friends and family.
• Find others in your situation: see the support networks listed below.
• Arm yourself with as much information as you can before you follow any advice given to you by your GP or try any alternative treatments.
• Lost Voices from a Hidden Illness, £8 Inc p&p, (A book of stories and images from severe ME sufferers, their carers and researchers, including information about current understandings of ME).
• Recovery from CFS – 50 Personal Stories, edited by Alexandra Barton, www.cfsrecoverystories.com 0117 924 1610
• Hope and Help for Your Nerves, Dr Claire Weeks, Dutton/Signet. Available from amazon.co.uk Although she says the language is outdated, Jane Hart found books by Dr Claire Weeks really helped her understand what was going on in her body.
Action for ME, www.afme.org.uk 0117 9279551
Invest in ME, www.investinme.org 02380 251719
ME Association www.meassociation.org.uk 0870 444 1836
ME Research UK www.meresearch.org.uk 01738 451234
The Young ME Sufferers Trust, www.tymestrust.org 0845 003 9002
Adrian Bonds finds this really useful. Pacing is remaining active without over exerting yourself and stopping before you do too much. This means listening to the signals your body gives and differentiating between pleasant tiredness and tiredness due to over exertion. The idea is that you make your limited energy go further.
You can download a booklet from Action for ME at www.afme.org.uk/booklets.asp
The Stoneage Diet. Johanna Teeson, 31, was diagnosed with post viral fatigue by a GP five years ago after catching glandular fever that kept recurring. She’s sensitive to various foods, electrical magnetic fields and formaldahyde amongst other things. The Stoneage Diet was developed by a GP in Wales who specialises in treating fatigue. It’s based around cutting out wheat, dairy and processed foods, eating carbohydrates later in the day, as they cause tiredness, and avoiding chemicals and anything that causes fermentation. www.drmyhill.co.uk/article.cfm?id=412
Louise Chalice, 0117 902 1829, firstname.lastname@example.org
Theta DNA healing
Amy Marner was diagnosed with coeliac disease and autoimmune hepatitis, then CFS/severe ME in 2006 by a specialist NHS consultant. Her symptoms were: sensitivity to light and sound, profound exhaustion and flu-like symptoms after pushing herself too hard (included walking down the stairs too quickly). She was ill for three years and fluctuated between being bed-bound and being able to leave the house for a couple of hours, eventually ending up in a wheelchair. She used Reiki, reflexology and homeopathy, which all helped, but found that Theta DNA was the most successful treatment in her road to recovery. Theta DNA healing is a form of meditation and healing that accesses the theta brainwave state. Amy is now 36, based in Clevedon and is a Theta DNA healing practitioner.
Amy Warner, www.amytheta.co.uk 01275 879154
Tracy Holloway, www.thetadnahealing.co.uk 01291 680 061
Other ME sufferers have found yoga, meditation, reiki, reflexology, Alexander Technique, acupuncture and reflexology have helped them to manage their symptoms.
Write to your local MP urging for more biomedical research into ME.
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