Insight from our new Member: HOPE 4 ME & Fibro Northern Ireland who write about living with Myalgic Encephalomyelitis (M.E.)

17th February 2020

‘It’s All In Your Head!’

There are many examples of what happens to patients when medical science hasn’t caught up, as in the case of Multiple Sclerosis when, just a few decades ago, patients were told they were suffering from hysterical paralysis, or when people have been told that stomach ulcers were caused by stress.

Myalgic Encephalomyelitis (M.E.) is a chronic, fluctuating, neurological condition as defined by the World Health Organisation since 1969. It has many similarities with M.S., and is very often misdiagnosed as M.S., yet they are poles apart in terms of recognition and treatment. Physical abnormalities in M.E. have been found in the metabolic systems, the microbiome, cardiovascular system, autonomic nervous system, neuroendocrine system and the immune system. 

An estimated 7,000 people in Northern Ireland live with M.E., a neurological condition that is at least as disabling as cancer or multiple sclerosis. Yet, to date, there are no specialist services and no guideline other than that produced by the National Institute for Health and Care Excellence (NICE) CG53 for M.E./CFS in England and Wales. Their current management recommendations are Graded Exercise Therapy (GET) and Cognitive Behavioural Therapy (CBT.) The guideline is undergoing essential review, as there is no high-quality, peer-reviewed published evidence to support either the efficacy or the safety of GET. Patient surveys consistently find that GET makes symptoms worse, or makes no difference. The result of the NICE update is expected in December 2020.

“The PACE Trial, a controversial medical trial part-funded by the Department of Work of Pensions will emerge as “one of the greatest medical scandals of the 21st century.” Carole Monaghan SMP, 20th February 2018 Westminster Hall ME Debate

This is my experience of Myalgic Encephalomyelitis; and, sadly, this is one I repeatedly hear from desperate patients and parents of children with M.E.

In October 1999, I woke with what felt a tummy bug or food poisoning. I experienced sudden onset symptoms of horrible dizziness, severe nausea and basically feeling like I’d been hit by a lorry and every ounce of energy had been sucked out of my body. I was also light and noise intolerant and either experiencing chills or profusely sweating and began to suffer weight loss.

I spent the next ten months being carried to the bathroom, having bed baths and lying in the back of the car on pillows being driven to hospital appointments; yet all routine hospital tests came back normal.

My now retired GP did everything within his power to help; but, as I was to learn nearly a decade later, no medical professional I’d seen in N.I. knew the facts about M.E. nor had the knowledge to warn me of the dangers of trying to fight my way out of this disease and that I simply should rest. Research now clearly demonstrates that early diagnoses and early intervention will offer suspected cases of M.E. the best chance for improvement. Recovery rates are estimated at less than 5%.

I was told my symptoms were in my head, that I needed to take sedatives, get some exercise, go for a holiday, take antidepressants, stop thinking so much about bodily functions; and, as a result, I began to doubt my own sanity.

As the months passed, my GP diagnosed post viral fatigue syndrome, and at ten months of what I can only describe as an almost comatose state, I could actually feel some energy returning. The symptoms gradually lessened, just enough to go back to work part time, but everyday, for months, I came home and collapsed in bed until the next morning. My weekends were spent the same, but I was determined I could fight ‘this’ off.

I was also burdened with guilt at the thought of maybe I WAS imagining all this, as what did I know about health or medicine, compared to all the doctors and consultants I’d been referred to.

But the harder I tried, the more my glass ceiling would descend.

After collapsing in work for the third time, the damage was done, as I had unknowingly plunged myself into the irreversible damage of severe ME; and my bedroom was to become my prison for the following almost seven years. That is a long time to be left alone with nothing but my thoughts of trying to figure out what had happened to my life. I felt frightened, traumatised from the disbelief and dismissal and abandoned by the NHS, while experiencing immense physical suffering with no effective treatment to offer any relief.

In 2009, approximately a decade on from M.E. onset, my family bought me a laptop. I had to painstakingly self-learn how to connect with the outside world again. It was only then that I learned about M.E. and discovered how the history behind this disease had sealed my fate from day one. Other M.E. patients I met online literally saved my sanity, and I quickly learned how to properly manage the disease for the best chance of any improvement.

I feel I must add that in 2008 I witnessed the NHS at its very best, when my husband and son were involved in a major car accident. After all, a broken leg and cuts and bruises could be seen, unlike my illness, now well proven by biomedical research, to be a broken, energy production system.

Somebody just had to do something, but what could be done?

Minute by minute, I eventually regained about 30% of my pre 1999 energy levels, and now I had a long term plan. I believed that surely just telling the truth of my horrific experience could be used to help others who found themselves in a similar position.  

Despite my determination and very careful pacing of all physical and mental activities, I still cannot exceed this 30% ‘energy envelope’ and remain mostly bed and house bound to this day, twenty years later.

On the odd occasions when I feel well enough to be upright to attend events, everything has to be planned like a military operation! Despite careful planning, any outings come with the payback of PEM (Post-Exertional Malaise), the defining feature of M.E., i.e. an increase in symptoms after using even small amounts of physical, cognitive or emotional energy, and this may be delayed by hours or even days and a frustratingly slow (days, weeks or months) recovery back to baseline.

I had no idea how my grand plan could be put into operation until I found likeminded patients who were as determined as I was that the truth be told; and eventually, in 2011, HOPE 4 ME & Fibro Northern Ireland was born.

Fast forward again to today and after much blood, sweat and tears, we have hosted eleven major educational conferences for healthcare providers.  The charity has brought the world’s most renowned M.E. clinicians and biomedical researchers to N.I. We are a small charity with very limited resources, no government core funding and run solely by volunteer patients, with no one but our family members to help.

Our fast growing membership consists of people from all walks of life, including medical professionals. 

Two committee members are doctors. One has been bed/house bound for 24 years with severe ME; yet in her determination for M.E. education, and with the charity behind her now, she has been able to set up N.I student bursaries. The second is a young doctor in the early years into her journey with M.E. Due to the physical and cognitive restrictions imposed by the illness, committee members have to communicate via a closed committee FaceBook Page when able only. Somehow, albeit slowly, we eventually get things done!

The aims of the charity are many but mainly to support patients, to campaign for greater public awareness, to fundraise for more biomedical research, and specialist nurses for the bed/house bound and services for children.

An area of great concern the charity has identified is that the specialist knowledge and understanding of the condition is not shared across the healthcare sector, with many patients experiencing differing standards of care.

Some progress has been made in our nine year campaign, after enlisting support from the Patient and Client Council in 2013. Unfortunately though, nothing has actually changed for the patient walking into a GP surgery today, as daily we hear repeated cries for help from patients who are still being told this disease is a figment of their imagination. Thankfully, though, this encouraging quote appeared in a recent newsletter from one of the five Health Trusts in Northern Ireland, after the charity had met with Commissioners to discuss the issue.

“ME/CFS is a condition which medical science is continuing to decipher, this means that healthcare professionals are left being unclear as to how best to treat it. This hasn’t been helped by the fact, at one stage, ME/CFS was labelled as a psychiatric condition.  Nowadays, it is widely recognised that ME/CFS is a physiological condition which is multi-system – affecting the immune, neurological and endocrine systems in the body.”

Hope 4 ME and Fibro NI will continue to work with healthcare providers, the Health and Social Care Board and the Public Health Agency in N.I., to address the shortfalls in knowledge, offering short slide presentations and information packs to GP surgeries’ multidisciplinary teams.

Biomedical research is happening on a global scale and showcased at the annual May Invest in ME Conference in London, see here: http://www.investinme.org/IIMEC15.shtml

We are delighted to be offering two bursaries for this event, so please do enquire!  

We are also associate members of the European ME Alliance; please view just some of their work here http://euro-me.org/documents/Conferences/EMEA-Stuttgart-August-20194.pdf and the European ME Research Group here:  http://www.investinme.org/em-index.shtml

There has been much debate and discussion[CO1] [HI2]  about the main symptom management approaches recommended by the NICE guideline, namely Cognitive Behavioural Therapy (CBT) and Graded Exercise Therapy (GET), and the published evidence for them, as to whether to not they are effective, and whether they may cause harm. In light of this, NICE is in the process of updating Guideline CG53 for M.E., expected to be completed in December 2020. 

Yet there is no high-quality, peer-reviewed published evidence to support either the efficacy or the safety of GET, whoever provides it, while patient surveys consistently find that GET makes symptoms worse, or makes no difference.

If you would like to find out more about Hope4Me & Fibro Northern Ireland please visit their website here: https://hope4mefibro.org/


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