About This Site

This site is intended primarily to provide information for the friends, families, and carers of people with ME, and for those who have only recently been diagnosed. It is mainly a collection of links to support groups and other sites which may help, but it also gives some advice about living with the illness, and summaries of the latest research.

Although this site uses the blogger format it is not a journal and is not arranged chronologically, so please use the pages and labels in the left-hand menu to navigate rather than clicking on the link to older posts.

This site is a work in progress, so if you haven't found what you were looking for today, please come back another time to see whether it has been added. If you don't have ME, or if you have just been diagnosed, you may find it helpful to read About M.E. before you go, and perhaps to follow the links for more information.

About M.E.

What is ME?

Myalgic Encephalomyelitis (ME) is a neurological illness which affects around 250,000 people in the UK alone. Men, women, and children of all ages and ethnic backgrounds can develop ME.

What causes ME?

It's not yet known why some people get ME and others, in the same circumstances, don't. However, it is known that some people have a genetic tendency to ME, and it can affect more than one family member. ME is usually triggered by a virus, but sometimes by another physical trauma such as an allergic reaction.

What is the main symptom?

The defining symptom of ME is "post-exertional neuro-immune exhaustion" - in other words, any physical or mental activity leaves someone with ME feeling shattered. This is very different from ordinary tiredness. People with ME often don't start to feel exhausted until a day or two after activity, and the exhaustion can last for days. The activity levels of a person with ME are less than half of their pre-illness levels.

What other symptoms are there?

Not everyone with ME has the same collection of symptoms, but the most common symptoms include:

* Difficulty with memory and concentration
* Headaches and/or migraines
* Pains in muscles and joints
* Disturbed or unrefreshing sleep
* Sensitivity to light and noise
* Muscle weakness and twitching
* Sore throats and swollen glands
* Digestive problems
* Sensitivity to foods, medications, and chemicals
* Dizziness and difficulty standing up
* Poor body temperature control

There is more information about symptoms here.

Is there a cure?

At the moment there's no cure for ME, and there are no therapies which work for everyone. Many people find that their symptoms improve and stabilise with time, however, and some do recover. A quick diagnosis and plenty of rest in the early stages of the illness are most likely to lead to recovery. Trying to push yourself through the illness will not work - it is more likely to make you worse and could lead to the illness becoming very severe. Most people find it helpful to cut down on activities and pace themselves.

Does ME have different names? - what are CFS, PVFS, and CFIDS?

Chronic Fatigue Syndrome (CFS) is a general term for a wide range of fatigue-based conditions. CFS and ME have different diagnostic criteria, but many people use the names interchangeably or talk about CFS/ME or ME/CFS when they mean ME.

Post-Viral Fatigue Syndrome (PVFS) is a fatigue-based illness which may follow a virus. It is generally shorter-term than ME (lasting months rather than years), but people with PVFS also need to rest and not try to push through the illness, as otherwise it can develop into ME.

Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS) is an American name for ME.

My friend/relative has ME - how can I help?

You can believe they have a serious illness - even if they don't look ill, they won't be able to do all the things they used to do, and trying will make them worse. You can understand that they are still the same person, and that they want to be well.

You can support ME research.

You can find out more about ME - start with the posts for those without ME on this site.

I think I have ME - what should I do?

It's important to eliminate other conditions first, so make sure your GP gives you some basic screening tests. If you are in the UK, they may be able to refer you to a local NHS ME service, who should be able to help with diagnosis and symptom management.

You may also find it helpful to join a national or online support group, or a local group in your area.