In rememberance of Sophie

Hello

The following is from a mother, whose daughter died of ME, it was very sad, and she was treated very badly, let's hope she went to a better place after her death.

Please click here to read the article, thanks.

Miriam

What does ME stand for?

Hello

Many people have not heard of ME/CFS, so what does it stand for?

Is it like MS

Answer

ME is an abbreviation for Myalgic Encephalopathy/Chronic Fatigue Syndrome/Post Viral Fatigue Syndrome.

It's NOT like MS, which is an abbreviation for Multiple Sclerosis.

Have a look below for a better/fuller explanation of ME.

If you type any of the names that I've listed above that it's known as in the search bar of your browser, you'll find that there are many pages devoted to it.

Best of luck to you.

Answer:

It could mean medical examiner or medical exam, or middle ear. Where did you see it?

Answer:

It means Medical Examiner

Answer:

Myalgic Encephalomyelitis

Chronic fatigue syndrome (CFS), also known as M.E., is a condition with a diverse range of symptoms but particularly characterised by profound muscle fatigue after physical exertion

CFS and ME are also classified by the World Health Organisation as neurological disorders

It is estimated that between 0.2% and 0.4% of the population have ME/CFS. The illness affects all social classes, ethnic groups, and is twice as common in women.

ME/CFS can occur at any age, even in children as young as seven. The commonest age of onset is between the early twenties and mid forties.

Chronic Fatigue is a growing problem.

Hello

I just received this on google alerts, it is worth checking out.

Jackson Clarion Ledger - Jackson,MS,USA
Many of these people are suffering from chronic fatigue syndrome with or without the fibromyalgia component. These conditions, combined, reflect an ...

Miriam
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Discover how you can control Chronic Fatigue Syndrome through your diet.

Hello

Want to know, how you can control your illness through diet. This article, takes you step by step, showing you the foods that will help.

Miriam

The week that was!

Hello

This week has been a bit busy, mainly because of media interviews with the local rags and local TV station, well it was only 2, but felt like a lot!

The reason for this…….. for years the ME/Chronic Fatigue Syndrome Support Group that I am part of, have been asking our local Primary Care Trust, for better facilities for people who have ME, and we are finally getting somewhere. They have commissioned a questionnaire, asking for people who have ME/Chronic Fatigue Syndrome, to tell them what services they currently have and need, the closing date for this was yesterday (although they are OK with receiving late entries), these will be analyzed and given to the Directors/Commissioners, to then see if there is any spare money is in the pot for our need/s, they will then look at what can be afforded and go from there.

This is a very important time for us, I am blessed that I have a fantastic doctor, but unfortunately not everyone is in the same position as I am.

We look forward to the results at the end of April. Our local TV station, will be contacting us for updates, and possible filming. Yes, this does take its' toll on me, but I enjoy doing it, and if it helps folks that's great.

I was also approached by Action for ME, to ask if I would be available for ME Awareness month next month, my answer of course! End of April and May, are always the busiest times in the year for me, because of birthday celebrations, and then ME Awareness the following month, and any interviews that follow as a result of it, but its all good stuff.

Miriam
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ME sufferer wins claim for disability discrimination

Hello

If you have been dismissed from work, because of having ME/Chronic Fatigue Syndrome, take heart, and comfort, from this article.

Miriam
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The government needs to do more for people who have ME/CFS

Hello

Please let me introduce you to my next video, on CFS/Chronic Fatigue Syndrome.

It was at a time, when the government was saying, we the people of the UK, who have this illness don't matter, and don't plan to do anything to help you.

Thankfully since producing this video, things have changed for the better, and our local Primary Care Trust, are currently doing a survey for people who have the illness in our area, this has to be sent in by the 18th April 2008, (this Friday), they will then look, at what we have to say, and at the end of the month, hopefully make some positive decisions, great birthday present, hey.

To find out how you can be part of this move forward, please click here, thanks.

Please see below my video, that I produced asking for such moves, thanks to the government, for moving this up the agenda.



Hurray we won!

Videos on You Tube

Hello

I have been producing videos on You Tube to raise awareness, I have not done any for a while because I got a cold, that went straight to my voice, and am very croaky at the moment. Below is my first video. Enjoy.




Miriam
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If you have CFS/ME, and would like to raise awareness of the illness, via the media, please feel free to contact me, and I will pass you onto the appropriate people.

ME, the crippling illness you can catch just by going for a walk

Hello

This article is from the Daily Mail.

Sarah Warren thought she was coming down with flu.

After a marathon weekend of biking and running in the summer of 2005, the superfit primary school teacher assumed she'd overdone it.

Her head was pounding, her muscles ached and she was exhausted.

"What hit me was like a combination of the worst flu, the worst jet lag and the worst hangover I've ever had," says Sarah, 40.

"I'm usually very active and healthy so I didn't have a clue what was wrong with me.

"At first, I didn't think about going to the doctor or taking any medicines because I simply thought I needed more early nights.

"But after about a month of feeling terrible I decided to see my GP, who was equally bemused and told me to rest."

But the symptoms soon began to take over Sarah's life. She suffered agonising headaches, inexplicable muscle pain, and other nerve problems, including mysterious numbness in her fingers and toes.

"Because I don't like taking medicines, I ploughed through work during the day and in the evening tried to get more sleep," says Sarah, who is married with two children.

"I didn't have a clue what was causing it."

For five months, her symptoms were intermittent, although always excruciatingly painful.

But then they started to come on with increasing severity.

"I was getting more and more annoyed," she says, "because my quality of life was severely affected but no one knew what it was."

Sarah, who lives in Colchester, Essex, returned to her GP and saw a locum who suspected an immune system disorder.

He referred her to a chronic disease clinic attached to her local hospital and at first thought she might be one of Britain's estimated 250,000 sufferers of myalgic encephalitis (ME), otherwise known as chronic fatigue syndrome.

"By this point I was so ill I couldn't think straight," says Sarah.

"The doctors test for ME by ruling out other illnesses, so I had blood tests for leukaemia, lupus, anaemia, thyroid function - you name it.

"But even after all the tests, they couldn't confirm what was wrong and started looking for psychological factors.

"That annoyed me even more. I didn't worry that I had anything sinister, but I was desperate to find out what was wrong."

Unbeknown to Sarah - and her medical team - she was actually suffering from Lyme disease, a little understood condition which is spread by bloodsucking ticks carrying the borrelia bacteria.

Lyme disease is endemic in heathlands and woods in central and western Europe and North America.

Last summer the White House disclosed that President Bush had been treated for Lyme disease after, it is thought, he was bitten by an infected tick at his ranch in Texas.

But the disease was only recognised as a problem in the UK in 1986.

The number of Lyme disease infections here has rocketed from a tiny handful to almost 3,000 a year, according to Health Protection Agency estimates.

This might still not reflect the real figure, however, because France, with a similar population and lifestyle to the UK, has an estimated 10,000 cases a year.

It's not known how Lyme disease spread to Britain, but it is believed that global warming is contributing to the rapid proliferation of ticks in our countryside.

People involved in outdoor activities are advised to cover their legs because of the risk of being bitten.

Ticks often live on our growing wild deer population, and can be spread via dogs and any other warm-blooded animal.

Sometimes a rash appears around the site of the tick bite, showing the spread of the bacteria, in a process which may take up to a month from the initial bite.

However, as in Sarah's case, the infection can often enter the body leaving no outward signs at all.

In more serious cases, the bacteria can also enter the nerves, causing meningitis, which can be fatal.

The factors which influence whether an infection is non-existent-mild or debilitating, are not understood.

The disease itself is not fatal, but left untreated it can also cause crippling heart or nerve damage, and debilitating arthritis.

But while there is growing concern that the bacteria are rapidly increasing in the environment, doctors are either failing to recognise the symptoms or misdiagnosing it as something else - often ME.

And although ME was recognised by the National Institute for Clinical Excellence last year as a genuine illness, there is growing dispute over how many ME sufferers may actually have Lyme disease.

It is notoriously difficult to diagnose. Blood tests available are believed to identify only 50 per cent of cases.

This is for two reasons: the tests are designed to recognise antibodies to the Lyme disease bacteria and not everyone infected seems to produce them.

Plus, the bacteria and antibodies may be concentrated deep in the organs and not circulating in the blood, so remain undetected.

"There is a big issue about how good these tests are," says Sarah Randolph, professor of parasite ecology at the University of Oxford, who is studying the rise of tickborne disease across Europe.

"People who are ill want to be told exactly what is wrong with them. Often that doesn't happen, or it may take many months or years, or may be confused with all sorts of other things.

"There is undoubtedly a problem with people being told they have ME or chronic fatigue syndrome, when it's actually Lyme disease.

"I feel it is irresponsible of doctors to simply ignore it.

"I get e-mails and phone calls all the time from people saying their GPs are unaware of the disease and are not helping them deal with the cause of their sudden and mysterious fatigue."

For Sarah, it took more than a year to get a diagnosis - and only as a result of further exhaustive blood tests at the private Breakspear Hospital in Hertfordshire, a recognised unit specialising in the diagnosis of unusual conditions.

She is now undergoing a year-long course of doxycycline, a potent antibiotic and an extreme measure intended to kill the infection once and for all - but it has affected her life dramatically.

"It wasn't until after I'd been properly diagnosed that I realised the previous doctors had been asking me questions about what sort of person I am - was I competitive, a perfectionist, that sort of thing.

"They were implying I was imagining my symptoms, and had made me wonder if I was going mad, which is infuriating."

Sarah's condition also forced her to give up full-time work.

And although she is now able to work part-time, she is by no means fully recovered.

"There is no way I can run around with my children as I don't have the energy.

"Now I manage to keep going most days doing the cooking and shopping and taking them to school, but sometimes I still have to go to bed during the day.

"Most of the time I'm too tired to see my friends. However, I'm determined to get better because being like this is both boring and lonely.

"What has happened to me has been a nightmare and I lost a valuable part of my life by not being diagnosed.

"It is vital more people become aware of Lyme disease and the terrible effect it can have. I wouldn't wish this on anyone."