M.E – The Facts
M.E to use it’s proper title is actually Myalgic Encephalomyelitis – ok, you might not be able to pronouce that. I can’t….
Here are some (busted and unbusted) facts about this invisible illness which has been with us for centuries. No one still really knows where it comes from, how we get it, in fact, like Autism (another invisible illness which affects my son) it really is one of those things that still, even in the 21st Century, has a question mark stuck over it.
Again, like Autism, ASD and Aspergers Syndrome, it comes in as many unique forms as humans do. What can be a symptom in someone might not be a symptom in someone else, that’s why it is difficult to find any real direct information for a specific person anywhere.
M.E is as unique as you are. Not very helpful huh? But my job here on this site, is to help you as much as I possibly can.
Ok, here are some facts I’ve found for you which you might find interesting…
- It is thought, there many be as many as 250,0000 sufferers in the U.K alone. M.E Association
- According to the Hummingbirds Foundation for M.E, the term, M.E as we know it today was created by both Dr Melvin Ramsy in London (who carried out extensive research on the subject until his death in 1990) and Dr John Richardson (whose work over 5 decades study M.E was outstanding) in Newcastle. At first, it was thought to be an epidemic, with 60 known cases of the ‘outbreak’ by 1969, although it was first thought to be recognised as far back as 1934.
- Even in the 21st Century one of the worst and prolonged symptoms of M.E is an outstanding lack of information open to patients.
- The Hummingbirds Foundation for M.E was set up by sufferer Australian Jodie Bassett in 2009. She, alongside a team of fellow sufferers of M.E campaign long and tirelessly to ensure the condition is given the recognition both professionally and personally that it deserves.
- In the U.K, the term Chronic Fatigue Syndrome (CFS) is more widely used although there are many schools of thought that believe CFS and M.E are two completely different things and should not be confused. Today, A diagnosis of CFS is more than likely to occur that a diagnosis of M.E. However, because the two are so unique and that each patient’s condition may be different to the next, the two illnesses have become ‘one’ over recent years.
- Patients can live with M.E all their lives and never be properly diagnosed.
- Current diagnosis by GP’s are a process of illimination; blood tests and other tests are carried out to rule out any other illnesses or conditions before M.E is literally ‘last on the list.’
- The prevalence of ME and strictly-defined CFS is about 1 per 1000; the prevalence of CFS selected using the British criteria may be as high as 2%. (David Axford)
- Deficiencies in Vitamins B12 and D have thought to be connected with M.E (David Axford)
- M.E can be a condition alongside other present conditions such as Depression, Fibromyalgia and Hypothoriodism.
- M.E is not related to any form of background, race, culture or age group, but appears to affect females more than males.
- Symptoms can range from chronic headaches, muscular pain, sore throat, fatigue, joint pain, depression, insomnia, black outs, muscle spasms, lack of concentration, forgetfulness, dizziness and vertigo, inability to move, restlessness, IBS, intolortence to alcohol. There are many others.
- Two links to offer more support in terms of claiming benefits, news items, government, research, employment and other support systems: Action for M.E and The M.E Association.
- Diagnosis through a U.K GP tends to be six months from start to diagnosis. There is usually a waiting list for the nearest CFS/M.E clinic and this can be anything between 3-6 months wait (areas may vary.)
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