What is ME/CFS/FM?
ME (Myalgic Encephalopathy) /CFS (Chronic Fatigue Syndrome) is a severe, complex, acquired physical illness with numerous symptoms related mainly to the dysfunction of the brain, gastro-intestinal, immune, endocrine and cardiac systems. FM (Fibromyalgia) is characterised by widespread pain and similar symptoms.
ME has been classified as a neurological disorder in the World Health Organisation’s International Classification of Diseases (ICD 10 G93.3) since 1969.
ME/CFS/FM can produce a wide range of up to 50 varying symptoms including: fatigue, pain, poor memory, ‘brain fog’, orthostatic intolerance, sleep disturbance, hypersensitivity to sound and light, IBS, swollen glands, etc.
Some people are only mildly affected but for a large number lives are changed drastically: schooling can be severely disrupted and employment becomes impossible for many. Personal care takes such a great proportion of our energy that social and family life can be restricted and strained. People may be housebound or confined to bed for months or years.
The Importance of Rest
There is no magic cure or prescription drug for ME/CFS. How you manage your activity levels, however, can make a massive difference to the severity of your symptoms.
The energy levels or ‘batteries’ of sufferers are very small, and need frequent recharging. If you push yourself until you get tired, then your batteries will take much longer to recharge, and your overall condition may well deteriorate. Never try and do as much as you can; keep 25% of your energy in reserve for the unexpected things that happen.
Meditation: Quality Rest
Total rest in a cool, quiet and dark room between short periods of activity appropriate to your baseline is what our members recommend. Meditation and mindfulness can be very helpful but learning to communicate your needs clearly and having the confidence to say no to people are important self-care tools too.
Pacing: Managing Activity
If you listen to your body, you will be able to work out what combination of activity and rest is optimum for your body and your recovery, but bear in mind that you may be pushing too hard and this is why input from an occupational therapist from the ME Service is important to help you understand why things you previously found easy take more effort and planning.
Any physical, emotional or mental effort will drain your battery. This means planning ahead for activities and thinking about when you can rest before and after. Everybody is different, but alternating 30 mins of something you want to do, followed by 30-60 mins rest is a good place to start.
If you keep a diary of exactly what you do throughout the day, you will be able to find what works for you. A pedometer or Fitbit type wearable can also track your steps, heart rate and sleep for you.
ME Service IOM
Community Health Centre, Westmoreland Rd
It is the aim that all patients are seen by the Service within 3-6 months of falling ill.
Your GP is able to refer you.
ME Support: Here to Help
We are a local self help group established in 1988 to provide support and information for those with ME/CFS and fibromyalgia, their families or carers and anyone affected by the debilitating disease. We hold monthly social get-togethers where you can meet up with others, share ideas and seek advice. We also hold group meditation sessions, and information forums etc. We are building up a library of resources for the use of members, including books, meditation CD’s, plus the latest medical information from the UK and further afield on every topic related to ME: pacing, holistic treatments, diet and nutrition, explaining ME to work, benefits and social care, having children and ME, coping with relapse…
We also campaign for improved access to healthcare for sufferers and to raise funds for much needed bio-medical research into this as yet incurable and untreatable illness. Over the last 30 years, the UK government has spent only £1.6 million in total on bio-medical research into ME which is why so much ignorance and indifference still exists and sufferers have so much difficulty getting a diagnosis and accessing medical support.
There are approximately 20 new diagnoses of ME a year and about 350 individuals of all ages on the Isle of Man with ME/CFS.
We campaign for:
- access to specialist care;
- better understanding by medical professionals;
- to encourage access to the ME/CFS Service at the Community Health Centre, Westmoreland Road, Douglas, within 3-6 months of falling ill; and,
- to raise funds for vital research.
What causes M.E.?
It is a serious physical illness often triggered by a virus. It can be a great strain on family and relationships, as often you will just not be well enough to be sociable, or able to do very much. We can provide information that may help you and family and friends understand and come to terms with the condition.
It is not a mental disorder. No one is really sure of the cause of ME/CFS. There are many opinions: mitochondria dysfunction, a retro virus, hypothalamus or immune system problems have all been suggested. More research is needed to identify and treat the condition.
What is it like to live with M.E.?
To live with ME is difficult and can be very disabling, often with symptoms similar to MS, making mobility difficult, painful or even impossible. It affects all areas of functioning including how a person is able to cope with work, family life or education. You may feel very alone and isolated. Often there are no visible signs and you can actually look quite well, and this can make others less sympathetic to the effects it is having on your life. Most hobbies, pastimes, work and social life may have to stop or be much reduced to enable you to manage your energy.
There is no cure, however with professional guidance, the proper management of the many varied symptoms can make a massive difference to a person’s well being. Pacing is one of the most useful strategies that a person can use to try and manage what little energy is available. If a person allows their body to heal itself, allows their minimal ‘battery of energy’ to recharge, then hopefully over time their condition will improve.
20 people are newly diagnosed every year and there are 350 people with ME on the Island. There is overwhelming and complex need and much ignorance and indifference to combat.
Your donation helps provide support and information for sufferers, campaigning for better understanding of a severe, complex, systemic disease and may help fund the research that enables us to understand this devastating and devastatingly neglected illness.
ME currently attracts less than 1% of the research funding given to other serious diseases. That is one reason why no cure has yet been found.
The Truth about ME
“ME/CFS is a serious, chronic, complex, systemic disease that can profoundly affect the lives of patients.” US Institutes of Medicine Report
“ME/CFS is one of the most disabling diseases that I care for, far exceeding HIV disease except for the terminal stages.” Dr Daniel Peterson
“Unfortunately ME/CFS is an area where the research and health care community has frustrated its constituents, by failing to properly assess and treat the disease and by allowing patients to be stigmatized.” US NIH Pathways to Prevention Report.
Phone: 07624 383 871
Helpful UK Organisations:
ME Association: meassociation.org.uk
Action for ME: actionforme.org.uk
For the 25% most severely affected patients:
The 25% Group: 25megroup.org
Manx Registered Charity No. 381
Patron: His Excellency The Lieutenant Governor
President: Phil Gawne MHK
Updated April 2016