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Hello my name is Lea and I am Fundraising for the M.E. Association to help others have a better chance of a quality life. I am calling this campaign Help M.E. Live A Life.

I have been living with ME/CFS and Fibromyalgia for 13 years now and I have continually struggled with the fluctuations in my physical and mental state. Luckily I have very helpful doctors who are trying their best to improve my quality of life with a series on different medications I have to take daily; helping my brain to work at least even if my body doesn’t. I am being sent for a wheel chair assessment so as you can imagine my prognosis is not good.

Currently there are 250,000 sufferers of this condition in Britain alone.

An explanation of the different terms used is given by the ME Association:

Myalgic Encephalopathy or “ME” (a term which The ME Association feels is more appropriate than the original, Myalgic Encephalomyelitis)

Chronic Fatigue Syndrome or “CFS”

Post-Viral Fatigue Syndrome or “PVFS”

Chronic Fatigue Immune Dysfunction Syndrome or “CFIDS”

People can be affected no matter what their, gender, age or ethnicity. With the illness comes most commonly; severe and debilitating fatigue which is constant and never-ending; painful muscles and joints (everywhere not just in one place!) all the time; differing sleep disturbances such as insomnia or sleeping too much, or even not waking up; there are the gastric disturbances that vary; poor memory and concentration which is frustrating for people who enjoy to learn; fainting/dizziness; nausea; poor appetite and of course there are the mental effects the condition has on the sufferer.

Other symptoms include:

“Commonly, a previously fit and active person finds their illness triggered by an infection. Less common triggers include toxins, organophosphate pesticides, vaccinations, major trauma or stress (e.g. a road traffic accident), pregnancy and surgical operations.

In some cases there is no obvious precipitating event and the person reports a gradual decline in health over a period of months or even years.

The predominant symptom of ME/CFS is usually severe fatigue and malaise following mental or physical activity. The full extent of this exhaustion often becomes apparent only 24 to 48 hours after the activity (assuming, of course, the person was not already in a ‘recovery period’ from a previous activity).

Muscle symptoms include exercise intolerance and post-exertional malaise (i.e. feeling shattered the day after undue physical activity), pain/myalgia (present in around 75% of people) and fasciculation’s (visible twitching of the muscles which sometimes includes blepharospasm/eyelid twitching).

Brain and Central Nervous System symptoms include cognitive dysfunction (problems with short-term memory, concentration and maintaining attention), clumsiness, disequilibrium likened to ‘walking on rubber’, and word finding abilities. Problems with control of the autonomic nervous system results in palpitations, sweating episodes and symptoms associated with low blood pressure/postural hypotension (e.g. fainting).

Symptoms which suggest on-going abnormalities in immune system function include sore throats, enlarged glands, joint pains, headaches, problems with temperature control and intermittent flu-like feelings.

Other symptoms which frequently occur in ME/CFS include sleep disturbances (often increased requirements at the onset followed by an inability to maintain a full night’s sleep), and irritable bowel symptomatology.

Some people also develop emotional moments or mood swings and features of clinical depression as time goes on.

Besides these more obvious and wide-spread symptoms there are also myriad “minor” ones. Not everyone experiences all of them and often they are not mentioned when patients describe their illness; however there is often very visible relief when they find others, too, have similar experiences.

ME/CFS symptoms tend to fluctuate in severity throughout the course of a day and people often report that they have both ‘good days’ and ‘bad days’, although the term ‘good’ is often used in a relative sense. The illness nearly always results in a severe reduction in a person’s ability to cope with all aspects of normal daily living (i.e. social and sporting activities, employment, household tasks). Relapses or exacerbations are often precipitated by infections, excessive physical or mental stress, general anaesthetics and surgical operations, and extremes of temperature.” (MEAssociation.org.uk)

It is believed to have been caused by either a viral infection; an operation or accident; hormonal damage and there are many other triggers.

There are a variety of hormonal (e.g. hypothyroidism), rheumatological (e.g. lupus/SLE), neurological (e.g. multiple sclerosis), infective (e.g. Lyme disease and hepatitis B/C virus) and gastrointestinal (e.g. coeliac disease) conditions which can all produce very similar symptoms to those found in ME/CFS. This is why it is so important for doctors to take a detailed clinical history from anyone suspected of having ME/CFS (especially when there are atypical features present) and arrange appropriate investigations if the diagnosis is in doubt.

In some sufferer their symptoms may be minimal but for most sufferers their lives are changed forever. Most drastically in young children and school age children. School becomes highly unmanageable for an ME sufferer and subsequent further and higher education can be subsequently difficult. But with the right help you can still study. In the working population, the working environment and tasks of employment are just too difficult to manage. Social life and family relationships become strained and restricted due to never being well enough. ME sufferers have an eternal feeling of guilt that they are letting everyone around them down. Many sufferers are even confined to a bed for months or are housebound; so tend to need a lot of support and understanding from their family no matter how hard it is.

Most people with ME fall into one of four groups:

1.       Those who manage to return to normal health, even though this may take a considerable period of time. The percentage falling into this category is fairly small.

2.       The majority: Illness has a fluctuating pattern with good and bad periods of health. Relapses and exacerbations are usually precipitated by an infection, operations, temperature extremes or stressful events.

3.       A significant minority of sufferers remain severely affected and may require a great deal of practical and social support.

4.       There are a few sufferers who continue to show deterioration, which is unusual in ME/CFS.

There have been several research studies published on looking at the prognosis of ME; Bombardier and Buchwald 1995; Hinds et al 1993; Sharpe et al 1992; Vercoulen et al 1996; Wilson et al 1994 to name a few. The results of these studies indicated that ME most often becomes a chronic and very debilitating and disabling illness which stays with the sufferer for the rest of their life. Only a small minority fully recover from the condition. And those few are very lucky indeed. The symptoms such as fatigue, pain, sleep disturbance, cognitive impairment, and associated depression seriously hamper the sufferer’s quality of life. Other studies on the functional status and quality of life measures confirms that the sufferers impairment is just as great, or even greater than the sufferers of other chronic medical conditions. (Buchwald et al 1996; Komaroff et al 1996; Schweitzer et al 1995)

Unfortunately there is currently no cure for the condition and there is NO universally effective treatment for the sufferers. The medication that is often used can work in some but not in others making the medication useless; being either ineffective or even counterproductive in some.

The ME Association website states that

ME/CFS has attracted more than its fair share of controversy. Initially, and for many years, there was a debate as to whether it was actually an illness at all. Although the situation is still not perfect, many influential bodies, (The World Health Organisation, the Department of Social Security, the Department of Health, the Royal Colleges of Physicians, Psychiatrists and General Practitioners amongst them) are now in agreement that it is real.

As research into the cause(s), effective treatments and cures continues, The ME Association offers help and support for all people in the UK who are affected by ME/CFS, while also taking very active parts in the medical, welfare and general national arenas.

The Ramsay Research Fund (RRF) is the research arm of The ME Association.

The fund relies on donations and fundraising activities carried out by our members and all money raised goes toward research-related activities. Administrative and staff costs are all met from general funds.

 

The RRF funds research into the underlying biomedical causes and treatment of ME/CFS.

The fund is named after Dr Melvin Ramsay, the infectious diseases consultant who identified an outbreak of the illness at the Royal Free Hospital in London back in 1955.

It is currently funding research studies involving mitochondrial dysfunction (with the Medical Research Council at the University of Liverpool); sleep management (at the University of Northumbria) and a European study looking at the pathophysiology that may help to explain post-exertional malaise in ME/CFS.

The RRF is a joint funder of the UK’s first ME/CFS Biobank at the Royal Free Hospital, which is now in its second year of operation.

The RRF is a founder member of the UK ME/CFS Research Collaborative.

Regular updates – along with more information on studies that have been recently funded or are currently being funded – are contained in the research section of our website [http://www.meassociation.org.uk/?page_id=1086] reports on the MEA Board of Trustees meetings.

I want to help sufferers like myself overcome this debilitating illness. So please donate to help us find a cure or if not a cure them some form of treatment that works for us all.

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