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What Is Chronic Fatigue Syndrome / Myalgic Encephalopathy / encephalomyelitis / Post Viral Fatigue Syndrome ?

What Is ME / CFS / PVFS?

It affects 243,000 people in the United Kingdom, with plenty more undiagnosed or misdiagnosed. The CDC estimated that it affected 800,000 adults in the United States in 1999. That's twice the number of people with Multiple Sclerosis.

Even more sufferers are believed to be misdiagnosed by doctors who mistakenly put it down to 'depression' or 'stress'. Further sufferers are believed to never have been diagnosed.

You can learn more about ME/ Chronic Fatigue Syndrome and doctors here...

It's one of the most chronic illnesses of our time, affecting all income and ethnic groups. It's being diagnosed in increasing numbers of children. In fact...

... it's affecting more and more people.

Many are not able to work because of it, and many are housebound. It devastates lives and costs governments billions of pounds and dollars each year.

It's a hidden epidemic...

Remember! You are not alone. Make sure you stay connected and sign up for Sleepydust's free E-magazine here...

The Various Names & Labels...

Some people call it an 'illness', some call it a 'condition' , others call it a 'syndrome', and others call it a 'disease'. Even its name has yet to be universally agreed upon...

This illness has had (and still has) many names. What you call it largely depends on whereabouts you are in the world. Still, many sufferers believe that the existing names for this condition are inadequate and that a more suitable name for this condition should be found.

 

In fact, the term 'ME/CFS' has become known as the 'umbrella term' to describe what is now believed to be sub-groups of illnesses. These include:

  • Myalgic Encephalomyelitis (M.E.)
  • Chronic Fatigue Syndrome (CFS)
  • Post Viral Fatigue Syndrome (PVFS)

All of these fall under the label 'ME/CFS'.

 

Myalgic Encephalopathy , Post Viral Fatigue Syndrome , Chronic Fatigue Syndrome , Chronic Fatigue Immune Dysfunction Syndrome , Myalgic Encephalomyelitis Although the terms above are all generally regarded as either being extremely similar, or practically the same, there are differences that are worth knowing about (more...).

In fact, there are plenty more names and descriptions, that have been created over the years - all trying to pinpoint what this illness (or rather, what this group of illnesses) actually is. People are still disagreeing even now...

 

The following are each believed to refer to a different illness (that fall under the umbrella term 'ME/CFS'):

  • Myalgic Encephalomyelitis (M.E.)
  • Chronic Fatigue Syndrome (CFS)
  • Post Viral Fatigue Syndrome (PVFS)

Other names include:

  • Myalgic Encephalopathy (M.E.) and
  • Chronic Fatigue Immune Dysfunction Syndrome (CFIDS)

Previous names included:

  • Yuppie Flu *
  • Royal Free Disease
  • Icelandic Disease
  • Epidemic Neuromyesthenia
  • Tapanui Flu

* The label 'Yuppie Flu ' is (hopefully) no longer used. Sleepydust does not condone the use of this term, but it's included here just in case this is the only term searchers know the condition by. More about this term ...

 

To make it easier for you to read through this section, we will refer to these labels and/or sub-groups of illnesses collectively as 'ME/CFS'.

To find out more about the various names for ME/CFS, click here...

So What Exactly Is M.E./ Chronic Fatigue Syndrome?

Unfortunately that's not an easy question to answer...

People are still debating what it is, even now. There is still much to learn about this condition and no universal cure has yet been discovered (although recovery is possible - more...).

 

ME is different from cancer or heart disease or diabetes. They are at least partly understood and so are acceptable and real. ME does not yet have a pigeonhole in the medical sorting office.

(...) ME patients now are where sufferers of multiple sclerosis, TB and rheumatoid arthritis were before the physiological bases of their illnesses were identified. These illnesses were once misunderstood as psychological disorders and personality weaknesses when they were at the same stage in their medical evolution.

-- Lynn Michell, Shattered, pXVI, XXI- --

 

More often than not, if you tried to find the answer in a book or on a web site, you'd probably find a medical definition of this illness:

"Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a severe systemic, acquired illness that can be debilitating. It manifests symptoms predominantly based on neurological, immunological and endocrinological dysfunction. While the pathogenesis is suggested to be multi-factorial, the hypothesis of initiation by a viral infection has been prominent.

(...) Before acquiring the illness most patients were healthy, leading full and active lifestyles."

-- Carruthers et al., Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Clinical Working Case Definition and Treatment Protocol, 2003, p11 --

The quote above is a medical definition from the widely acclaimed Canadian Consensus document. It has become a well respected document in the global ME/ Chronic Fatigue Syndrome community. Unfortunately though, if you're not medically trained, these definitions can be rather difficult to understand.

M.E. / Chronic Fatigue Syndrome Symptoms

Another way to gain an understanding of the illness is to familiarize yourself with its symptoms.

There are common M.E. / Chronic Fatigue Syndrome symptoms, but each sufferer will have a different 'set' of those symptoms. Some ME/CFS symptoms will come and go over a long period of time. But even within each day, symptoms can emerge as other symptoms fade away. Many ME/CFS sufferers cannot predict how they will feel from hour to hour. It makes the act of planning, nearly impossible.

 

 

What Can ME/ Chronic Fatigue Syndrome
Be Like To Live With?

When trying to understand what M.E. / Chronic Fatigue Syndrome really is, it can be helpful to gain an insight into what it's like, living with it on a daily basis. For an overview, you can check out the free Sleepydust video about ME / Chronic Fatigue Syndrome here...

Every sufferer's experience is slightly different, both in terms of severity, and in terms of the mixture of symptoms they experience at any given time.

There is also a disability scale of how severely affected you can become with ME/CFS. Most ME / Chronic Fatigue Syndrome sufferers are mildly or moderately affected. But at it's worst? Here's a severely affected ME/CFS sufferer's perspective:

 

"It would be difficult to imagine being any worse. I was at the stage of crawling on my hands and knees at times. I remember trying to answer the phone and not being able to get there quickly enough because I was crawling. I was confused by really simple things, and muddling my words and not being able to finish sentences.

(...) There was a great deal of weakness in my limbs, and a drained complexion and pallor. I was bedridden. I mean I was in bed 23 hours of 24. I was sleeping at least 18 of those 23 hours.

Extremely exhausted, extremely emotional , depressed certainly; partly a reaction to physiological illness, partly, I'm sure, due to alterations in my central nervous system."

-- Phil, as cited in Shattered by Lynn Michell, pXVI, XXI- --

 

That's just one person's account of his experiences with this illness. Unfortunately for some sufferers ME/CFS can become even more disabling than Phil's experience (described in the quote above). Thankfully though, the majority of sufferers never develop ME/CFS to such a severe degree. The majority of ME/CFS sufferers experience a more moderate form of this illness. But due to its very nature, even a mild form of ME/CFS can have dramatic implications on a sufferer's health and lifestyle.

Everyone's threshold is different. So a little physical or mental exertion might be ok for one sufferer to handle, yet might be too much for another sufferer. The quote below sums it up well:

 

"But don't ask what is too much, because often there is no easy or consistent answer. This is what we spend years of our lives trying to resolve. For a very ill person, too much can be taking a shower or making a sandwich. For someone further up the recovery ladder it may be a conversation too long, a walk too far or too prolonged a spell at the computer. For the nearly-well, it may be an inability to achieve a former level of physical fitness, or an awareness of reduced mental or emotional stamina."

-- Lynn Michell, Shattered ,p9 --

 

I recommend that you sign up to the FREE Sleepydust Newsletter because it's written to specifically help you if you suffer from:

  • Chronic Fatigue Syndrome (CFS)
  • Post Viral Fatigue Syndrome (PVFS)
  • Myalgic Encephalopathy (ME)
  • Myalgic Encephalomyelitis (ME)
  • Chronic Fatigue Immune Dysfunction Syndrome (CFIDS)

Sign up here!

 

When you subscribe to the FREE, popular Sleepydust Emagazine, you will:

  • learn more about your condition
  • what to do and what not to do
  • learn about treatments, therapies and supplements that can help you
  • learn about the things you can do (or take) to helpful yourself recover

 

To find out more click here!

 

In fact, I'm adding more and more interesting stuff to this website all the time, so that's another reason to make sure you sign up to the FREE Sleepydust Newsletter, which will let you know about updates and new additions to the site.

 

You can sign up here!

 

PVFS/CFS/ Myalgic Encephalopathy :
Is It A New Illness?

Myalgic Encephalopathy / Myalgic Encephalomyelitis / Post Viral Fatigue Syndrome / Chronic Fatigue Syndrome / Chronic Fatigue Immune Dysfunction Syndrome is often seen as a 'new disease' but medical researchers (in the western world) now believe that it has been around for decades.

However, this condition seems to have been around for much longer than that. According to Giovanni Maciocia, "Chinese medical books have described the causes, diagnosis and treatment of conditions similar to M.E., or post-viral syndrome, from very early times."

Myalgic Encephalopathy , Post Viral Fatigue Syndrome , Chronic Fatigue Syndrome , Chronic Fatigue Immune Dysfunction Syndrome , Myalgic Encephalomyelitis To read reviews of some of the best supplements and items for ME/ Chronic Fatigue Syndrome, click here...

 

For support, articles and tips on living with ME/CFS/PVFS, why not susbcribe to the popular FREE Sleepydust Emagazine? Each issue is packed with tips on dealing with the condition.

Click here to sign up!

 

Top 3 books on Myalgic Encephalopathy /Myalgic Encephalomyelitis / PVFS/ CFS

Top 3 Books On ME/PVFS/CFS

1. 'Living With M.E.' by Charles Shepherd

2. 'M.E.: Chronic Fatigue Syndrome' by Anne MacIntyre

3. 'The Chonic Fatigue Healing Diet' by Christine Craggs-Hinton

 

More book reviews about ME/ Chronic Fatigue Syndrome & Fibromyalgia ....

So now that we know a little more about Myalgic Encephalopathy/ Post Viral Fatigue Syndrome/ Chronic Fatigue Syndrome, Chronic Fatigue Immune Dysfunction Syndrome/ Myalgic Encephalomyelitis ...

...next let's find out who can develop Myalgic Encephalopathy/ Post Viral Fatigue Syndrome/ Chronic Fatigue Syndrome, Chronic Fatigue Immune Dysfunction Syndrome/ Myalgic Encephalomyelitis ...

Or to learn about the symptoms of this condition click here!

 

 

Category: What is Chronic Fatigue Syndrome, Chronic Fatigue Immune Dysfunction Syndrome , Myalgic Encephalomyelitis, Myalgic Encephalopathy , Post Viral Fatigue Syndrome

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