Harry Howard and John Siddle, for MailOnline, 28th February 2020.
EXCLUSIVE: Barely able to leave the house, told they are exaggerating and even that their ailment does not exist
- It's a controversial condition that has been swept under the carpet for decades
- But myalgic encephalomyelitis (ME) is physical – and is not made up by patients
- Millions of lives across the world are being ruined by the unrelenting condition
- Sufferers often left house-bound, confined to their beds and unable to move far
- MailOnline spoke to three sufferers who spoke about their daily struggle
It's a controversial condition which leaves sufferers house-bound, confined to their beds, reliant on feeding tubes and even needing help to get them in the shower.
But myalgic encephalomyelitis (ME) has been beset by controversy for decades amid claims it is merely psychological.
Instead, the truth is that the condition, also known as chronic fatigue syndrome, is physical – not just made up by patients.
An estimated 250,000 people in the UK and one million people in the US live with the condition.
It affects their lives so severely they often spend their days in darkened rooms, unable even to watch TV or listen to music.
But despite the increasing evidence about the reality of ME, which affects 17million people across the world, it remains incurable, and many still think that sufferers are just lazy.
For them, even touch is intolerable and many are tube-fed. Others struggle to keep in full time employment and suffer relentless relapses as they push themselves to keep up.
The condition also causes extreme exhaustion, pain and brain fog, with the cruel hallmark that symptoms are made worse through bare minimal exertion.
Even going for a shower, or going to the toilet, can strike down a sufferer for days or even weeks.
In the hope of ending ignorance surrounding the crippling ailment, MailOnline has heard from three women who have suffered from ME for decades.
Dr Charles Shepherd, medical adviser to the ME Association, said:
‘There are thousands of people in the UK with severe ME, which is a truly devastating disease.
‘The nature of the illness means they are hidden away behind closed curtains and desperate not to be forgotten about.
‘We urgently need more funding for research into treatments for ME so people like Nicola, Avani and Marie can have hope of reclaiming their lives.'
I feel like I'm missing out on doing things with my children, life feels hard, almost impossible on some days
Mother-of-two Nicola Magdalinis, 36, from St Albans, Hertfordshire, used to be a keen kickboxer who worked for a private art collector.
But since being diagnosed with ME in 2017 while she was pregnant with her second child Grace, two, Ms Magdalinis now only has enough energy to carry out a couple of basic tasks a day.
Ms Magdalinis first suffered symptoms of the condition after being struck down by meningitis when she was just 17. After her diagnosis, Ms Magdalinis's symptoms became severe and unmanageable.
She told MailOnline: ‘Life feels hard, almost impossible on some days.
‘I feel I'm missing out on doing things with my children and family and feel that they also miss out because there are activities and environments that I cannot tolerate.
‘I can't take a tablet or drink something that makes me feel better. Nothing anyone says helps and it is difficult for some people to understand
‘It's very claustrophobic and lonely. I feel trapped both within my body and in my own home.'
The long-suffering mother said there needed to be more research into the condition and said there was a general lack of understanding about it's effects and cause.
‘We need help and we need the research to happen,' she said.
‘The way I see it is that there is a lack of acknowledgement from those who really do not understand this condition, whether it be in parliament or the general public – this is not a psychological condition.
‘People tell me all the time that I “look fine” or that “it's mind over matter”.
‘We have to try and prove that we are suffering before we can get to the next level of care, whatever that might be.
‘Some people call it an invisible illness but I disagree – it's a lack of knowledge and acceptance that makes us feel invisible,' she added.
Ms Magdalinis said she initially put her symptoms down to anxiety and Post Traumatic Stress Disorder which she had suffered from since getting meningitis.
She saw her doctor after she had several ‘crashes' in a short space of time.
These episodes included fainting, shaking, numbness and not being able to walk, as well as ‘terrible' brain fog.
However, Ms Magdalinis said the medic she saw put her symptoms down to her being thin and having low blood pressure and it was only by seeing a different doctor that she got an answer.
She added: ‘I think I had another few appointments resulting in the same outcome until I met with a visiting doctor who asked me if I had ever been screened for ME.
‘She referred me to an endocrinologist who I saw within a few months and who diagnosed me immediately and on the first meeting after learning my history and symptoms.
‘I do feel like if I hadn’t have met with that visiting doctor, that I still would be none the wiser about my condition.'
ME forced me to abandon my dream of going to university and instead left me bedridden
Avani Gadhoke, 24, from Croydon, south London, was left with an uncertain future after being diagnosed with the condition aged just 16.
The diagnosis came in 2012, while Ms Gadhoke was studying for her GCSEs.
And the symptoms became so bad that she subsequently had to stop studying for her A-levels and give up any hope of employment.
Ms Gadhoke said: ‘ME has completely changed my life. I was on the path to getting my A-levels and going to university.
‘This illness forced me to abandon that and left me effectively bed ridden.
‘For the past eight years, my life has been excruciating pain, extreme fatigue and bed rest.
‘I've lost friendships and it's put a strain on my relationship with extended family. It's robbed me of what is supposed to be the most care-free time of my life.'
Ms Gadhoke said the disease has left her without a social life and ‘barely able to leave the house'. When she does, it's to go to an appointment related to the illness.
‘In the strongest terms, my life with ME is that I'm existing not living,' she said. Ms Gadhoke faced a battle with doctors and even family members in the lead up to her diagnosis.
She said: ‘At the beginning, doctors thought I had a chill and wasn't seriously unwell. They thought I was exaggerating.
‘Extended family didn't think I was unwell [either]. In fact, I got comments like “why are you always sick?”
‘Because it took so long to be diagnosed, people thought I wasn't actually ill,' she added.
| Around £10million per year is spent on research into ME, which is around 20 times less than the financial support available for multiple sclerosis (MS). This is despite the fact that MS affects around 100,000 people in the UK and 2.5million across the world, significantly less than the numbers hit by ME globally (17million). There remains no known cure for the condition, and continuing vast misconceptions among medics. |
On bad days I can't speak properly and on good days I feel like I'm tied to a bungee cord and wearing lead slippers
Mother-of-four Lucy Didwell, from Norwich, faced a 21-year wait for an ME diagnosis. Her problems started when she fell ill with flu when she was 17.
She then spent 21 years suffering with crippling exhaustion which left medics baffled, before finally being told her illness was not in her head.
Now aged 38, Ms Didwell was in March 2019 finally given an answer for the devastating illness that consumes her life – she too has ME.
To add to her struggle, she also suffers from fibromyalgia, a condition which causes chronic pain all over the body.
It is thought there could be as many as two million sufferers of the condition in the UK, with another 10million in the US.
Now housebound and reliant on her husband Mark to care for her, Ms Didwell told of her tortuous journey to find answers.
She said: ‘A bout of flu left me bed-bound for six weeks and then chronically ill for nine months.
‘I was diagnosed with post viral fatigue and depression but had no idea what either of these really meant.
‘For years after I have had bouts of extreme exhaustion, joint pain and fatigue.'
The mother-of-four said that in her ‘long journey' of trying to find out what was wrong with her, she was also diagnosed with lupus and hypermobility.
Lupus is an incurable autoimmune disease which sees the body's defence system attack healthy cells. Symptoms include rashes, joint and muscle aches and extreme fatigue.
And Ms Didwell said that while she used to have period where she was not suffering any ME symptoms, she has since felt them non-stop for three years.
‘Sadly, for the last three years my symptoms have been constant. Whereas I used to have periods of remission, I no longer enjoy times of wellness,' she said.
‘I am still coming to terms with my diagnosis although am pleased to finally have one after 21 years. However, there isn't a cure and it hasn't made me well.
‘On bad days, I can't speak properly. On good days, I feel as if I'm tied to a bungee cord, pulling me in the opposite direction whilst wearing lead slippers.'
Ms Didwell, who has children, Charlie, 19, Maisie, 16, Cobie, 14 and Malachi, 12, spoke out to raise awareness of ME.
It is often difficult to identify because it cannot be diagnosed through blood testing.
| WHAT IS CHRONIC FATIGUE SYNDROME? Some 250,000 people in Britain suffer from the condition, which comes with flu-like symptoms, extreme tiredness and mental lethargy that can last for years. Other symptoms of chronic fatigue syndrome (CFS), or myalgic encephalopathy (ME), include disturbed sleep, poor memory and reduced concentration. The cause of the illness is unclear, provoking the heated debate that has lasted for decades among the medical community. Some experts think the disease is triggered by a virus, in a similar way to glandular fever. It has also been linked to infections, operations and accidents. But skeptics think it is merely a psychological condition because of a lack of a physical cause, leading to a stigma that has led to sufferers being dismissed as having nothing more than ‘yuppie flu' because it appeared to only strike young professionals when it rose to prominence in the 1980s. Some patients return to full health and others deteriorate progressively, however, most fluctuate between good and bad periods. There is no cure for CFS, with the majority of treatments to reduce symptoms being ineffective. They include cognitive behavioural therapy (CBT), graded exercise therapy and medications such as antidepressants. The World Health Organisation and the Department of Health and Social Care recognise CFS as a medical condition. Worldwide it is believed that 17 million people suffer with CFS, according to the ME Association. |
Ms Didwell, a former barmaid and cleaner, said: ‘ME has stolen my life. I am housebound and rely on my husband or eldest son to help me leave the house. I use a wheelchair and a walker.
‘I no longer work or have any social life to speak of. I really miss walking my dogs and popping to the shop.
‘Everything I do now has a consequence. Bathing is a chore and drying my hair is a rare treat!
‘ME is real. It steals time from your family and leaves you feeling guilty every day. I miss parent's evenings and school events.
‘My youngest son is a promising boxer, but I've not been well enough to see him yet.'
The struggling woman went on to urge MPs to take the issue of ME seriously.
‘Lives are being stolen and there is not enough understanding, help or support available,' she said.
‘Fatigue is not a strong enough word to describe the extreme paralysis caused by ME.
‘Listen to the voices of the lost people – I'm lucky, I have family around me. Imagine living with this alone.'
| ARE SCIENTISTS CLOSE TO A TEST FOR ME? ME sufferers have longed for the end of the decades of doubt surrounding the legitimacy of their condition. However, researchers are now finally starting to offer hope of ending the stigma and ridicule patients have had to endure. Scientists based at Stanford University announced last in April last year that they had created a blood test for the condition. The test accurately identified which half of a group of 40 had been diagnosed with ME and which had not – with 100 per cent accuracy. ‘Too often, this disease is categorized as imaginary,' said senior study author and professor of biochemistry and genetics, Dr Ron Davis. The test he designed in collaboration with lead study author Dr Rahim Esfandyarpour works by measuring energy output from immune cells in the blood. The so-called ‘nanoelectronic assay' measures how much the energy outputs of these cells change when they are exposed to stress, in this case, modeled by salt. Essentially, more change in the electrical activity or behavior of the cells when they were exposed to salt, the researchers thought, should indicate the the cells are less healthy and resilient. When they tested the blood of 40 trial participants – 20 diagnosed with ME/CFS, 20 without – the results were as clear as day. Those with ME/CFS had very reactive blood, while healthy immune cells were much less disturbed by the salt stress. |
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