Welcome to Dorset ME Support Group
When first recognised in 1956 it was called Myalgic Encephalomyelitis, but this name is widely considered to be scientifically incorrect. Since then, researchers and the medical fraternity have coined various names and descriptions, but the one most widely used is Chronic Fatigue Syndrome – CFS. Others you will see are Post Viral Fatigue Syndrome (PVFS), and Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS). The latter is mainly used in America.
The important thing to remember is that these terms all refer to the same illness – whatever it is, as no-one yet knows what causes it – and these are all attempts to provide a descriptive label. Some may claim that ME and CFS are different, but that is a misapprehension. The ME Association favours Myalgic Encephalopathy as a more accurate description of ME, and most patients and the media use ME. As the medical profession and the NHS prefer CFS, we refer to the condition as CFS/ME on this website.
Often it seems to be triggered by a viral infection – glandular fever, chest viruses, flu, and gastric viruses appear to be common culprits, sometimes linked with other personal factors like extreme tiredness or stress. However, there are other potential sources like exposure to organophosphates and other toxic chemicals; extreme stress or exhaustion without an obvious viral connection, and even surgery.
A lot of research is going on around the world, and it may be that CFS/ME is not a single illness, but a group of similar, or heterogeneous, illnesses with similar symptoms. There appears to be a genetic predisposition, we have a number of members where others in their close family also have CFS/ME – sometimes a parent and child, or more than one child. The central nervous system is implicated, and the World Heath Organisation has categorised CFS/ME as a physical neurological illness.
The short answer to this is ‘many and various‘, and it is common for people to have a different combination of symptoms from others also diagnosed with the illness. It is important to remember that while the illness is often life-changing, the symptoms are not life-threatening. Nevertheless, the symptoms can be very unpleasant, and it is their persistence that most people find so devastating.
The most usual effects are:-
a debilitating fatigue, often after little or no effort, that is persistent and isn’t relieved by normal rest or sleep
painful joints and muscles, and sometimes twitching muscles
sensitivity to loud noise, bright lights and temperature extremes
‘mental fog’ – difficulties in comprehension, short term memory, and concentration
headaches and sore throats
flu-like symptoms, particularly after over-long activity
digestive problems and nausea
tender and swollen lymph glands
mood extremes.
The symptoms can also appear in children, from a very early age right through into their teenage years.
There is no definitive test for CFS/ME. Doctors will normally undertake tests to rule out other conditions that would produce similar symptoms. If these are negative, then it is a matter of looking for typical patterns and signs that are indicative of CFS/ME. However, you may find your GP is still reluctant to give a diagnosis of CFS/ME. This is a common problem throughout the country, and not just in Dorset.
Fortunately, in Dorset we have dedicated NHS CFS/ME services which will undertake diagnosis. If you, or your child, have been to your GP and have been through the initial testing procedure (and no explanation of the symptoms has been found), and you think CFS/ME could be the cause, you should ask your doctor to refer you, or your child, to one of the NHS specialist clinics for this illness. The NHS CFS/ME service for adults covering Dorset also operates in Hampshire and the Isle of Wight.
NHS CFS/ME services are delivered through two distinct and separate clinics, with different funding streams and structures. With the current major restructuring of the NHS nationally, we have had concerns about the future of the CFS/ME clinics. However, to date the services are continuing and our enquires give us hope that the services will continue into the foreseeable future. The development of the relationship between Dorset ME Support Group and the NHS CFS/ME is covered in our History.
Throughout the period since its inception the CFS/ME Service has run monthly clinics. Demand for the Service has increased over the years as the presence of the clinic has become known, and also because it has shown itself to be very effective in helping people with CFS/ME. Referral to the clinic is made through your GP.
Since the Clinic was inaugurated in 1998, we have provided volunteers to assist at each clinical session. Our volunteers meet patients on arrival, provide information about the operation of the clinic, a cup of tea or coffee and the opportunity to sit quietly, or have a chat. They see each patient after their appointment to note the outcome and, when a diagnosis of CFS/ME has been confirmed, will offer further information on membership of the Support Group, and the services we can provide. The Dorset ME Support Group also purchases copies of an excellent guide for newly diagnosed patients – ‘Chronic Fatigue Syndrome (CFS/ME) – Your Questions Answered’ by Frankie Campling and Dr John Campling, and a complimentary copy is given free of charge to all newly diagnosed patients at the Clinic.
Dr Selwyn Richards has been lead consultant since 2001, and has recently been joined by Dr Peter Horne, specialist. They are supported by 4 specialist Occupational Therapists, a specialist Occupational Assistant, and a medical secretary. On confirmation of the diagnosis, the adult team offers fatigue management intervention designed to meet the needs of the individual, with the aim of assisting individuals in their recovery and to lead as normal a life as they want, including return to work, education, child care etc. The clinic also provides:
Information about the illness, and how they can help with your recovery
Goal setting for recovery
Advice on stabilising symptoms and managing sleep problems
Help with activity planning and effective resting
Help with anxiety and depression
The team have developed extensive expertise in the treatment of CFS/ME and is one of the national Clinical Network Co-ordinating Centres specialising in the treatment of CFS/ME – click for more information about the Clinical Network.
For all enquiries;
Michelle Selby
Head OT Dorset
CFS/ME Services
Phone: 01929 557560