Hi Floydguy RE, I could certainly be wrong but I think there is a differentiation between muscular fatigue and the can't get out of bed fatigue described in CFS.
You are correct!!!!! The Muscle fatigue of ME is one of its defining features. And you dont find this type of muscle fatigue in any of the CFS definitions including the CCC None of them describe ME!!!
The Fatigue in the CFS definitions is not Muscular fatigue of a unique nature that can last for over five days after trivial exertion. The muscle fatigue found in the CCC and other CFS definitions is just the plain ordinary fatigue found in a large number of illnesses!
Medically a defining feature is something that is so different and unique, that it helps Doctors to separate one disease from another!
The muscle fatigue and pain in ME is so important it made it into the diseases name!!!
Myalgic as in Myalgia =muscle pain and fatigue, Encephalomyelitis = inflammation of the brain and central nervous system.
The Central nervous system for anyone that doesnt know, are the group of nerves that run from the brain and down the spine and then into the body, they carry the messages from the brain to the body and vice versa from the body to the brain, this is what causes the cascade of other symptoms once this is damaged.
Although a lot of people think that CFS is just an American name for ME its not, the term that was used the most in the US was Epidemic Neuromyasthenia, Dr Henderson who used to work for the CDC in Atlanta and Dr Shelokov came up with this name in the 1950s after investigating US epidemics. Dr Henderson describes it thus It was a hybrid of the terms "neurasthenia" and "myasthenia," implying brain and muscle involvement and obviously the epidemic part in the name refers to the fact it causes epidemics and is therefore infectious!
Havent the CDC kept quiet about that little piece of information!
Because the writers of the CCC havent done their research they completely overlooked the epidemic side of ME, because it happens in epidemics it has to be highly contagious and have a short incubation period, so start looking for viruses that fit that picture!
Not go looking for random anomalies in the immune system, as Ramsey who was one of the doctors at the Royal free hospital outbreak put it how can 200 nurses at the Royal Free Hospital have developed abnormalities of their immune system within three months.!!!
So when it comes to diagnosing ME, you have a sudden onset which is generally described as being either as mild as a flu like infection, up to a sever gastrological or lung infection, so this immediately rules out, gradual onset illnesses, then you have the Encephalomyelitis, there are a lot of disease that cause encephalomyelitis but this narrows down the field even more, then you come to the profound muscle fatigue and youve narrowed it down to ME with just a few other things to rule out e.g, Bornholm disease.
Now nobody is saying that ME sufferers dont experience fatigue, everybody who is sick experiences fatigue, obviously if you have lots of energy you are well, unless you have to much energy then your suffering from something like a Bi polar disorder.
What people are saying is that fatigue is not a DEFINING symptom of ME, but it is of whats being called CFS or ME/CFS.
ME suffers often get POTS but it is not a defining symptom because a large number of diseases cause POTS as well.
So you can see that if someone invented a new disease and called it POTS chronic fatigue disease, youd go, good one dim wit youve just invented a definition that describes about 50 diseases, seeing as youre so thick have you ever considered getting a job at the CDC?
Its all about DEFINING symptoms that differentiate one disease from another!!!!
When it comes to the CCC its defining symptoms are the four that it quite clearly states that you have to have e.g.
A patient with ME/CFS will meet the criteria for
1 fatigue,
2 post-exertional malaise and/or fatigue,
3 sleep dysfunction,
4 pain.
If you dont have all of those four of these you dont qualify no matter which of the other long lists of symptoms you have!!
So when you look at it, I dont think too many people have a problem with the fact that the fatigue as they describe it
1 The patient must have a significant degree of new onset,
unexplained, persistent, or recurrent physical and mental fatigue
that substantially reduces activity level.
Is found in a large number of conditions, diagnosispro software list chronic fatigue as being caused by 299 illnesses
http://en.diagnosispro.com/differen...ific-agent-chronic-fatigue/25271-154-170.html
So Fatigue isnt a DEFINING symptom of anything!
Then theres the category Sleep dysfunction described as
3 Sleep Dysfunction:* There is unrefreshed sleep or sleep quantity or
rhythm disturbances such as reversed or chaotic diurnal sleep rhythms.
This is also found in a large number of conditions and millions of people who arent sick and by itself will cause fatigue
So again sleep isnt a DEFINING symptom of anything!
Then theres the category Pain
There is a significant degree of myalgia. Pain can be experienced
in the muscles and/or joints, and is often widespread and migratory
in nature. Often there are significant headaches of new
type, pattern or severity
You will notice that it just says myalgia and that it can be experienced in the muscles and joints. It does not say anything about the unique muscle fatigue and pain that is found in ME, which can last for over five days after trivial exertion.
The Myalgia that they describe is common place in 188 different illnesses link
http://en.diagnosispro.com/differen...rs-specific-agent-myalgias/42070-154-170.html and headache is found in 612 different illnesses
http://en.diagnosispro.com/differen...rs-specific-agent-headache/24520-154-170.html
So again pain isnt a DEFINING symptom of anything!
Now Post-Exertional Malaise and/or Fatigue is a problematic area, which the failure of people to know the facts about, is locking a lot of people into a life time of suffering and possible early death, To start with please note it says and/or fatigue so you can have either PEM or PEF or a combination of.
They describe it as
Post-Exertional Malaise and/or Fatigue: There is an inappropriate
loss of physical and mental stamina, rapid muscular and cognitive
fatigability, post exertional malaise and/or fatigue and/or pain and
a tendency for other associated symptoms within the patient's cluster
of symptoms to worsen. There is a pathologically slow recovery
period.usually 24 hours or longer.
Now the reason I cant put the term PEM into diagnostic software to prove this point is because PEM is not a recognized medical term!!
Post exertional malaise, is an term that was invented by every bodies favourite people the members of the Wessely School and the CDC!!!! And makes its first appearance in the CFS definitions in the 1994 CDC fukuda definition written by the Wessely school and the CDC.
http://www.cdc.gov/cfs/general/case_definition/complete.html
They describe it thus
post-exertional malaise (extreme, prolonged exhaustion and sickness following physical or mental activity) lasting more than 24 hours.
As I pointed out in an earlier post unfortunately the writers of the CCC have relied heavily on the work of the Wessely school and CDC in writing their document, and it is from them that they have acquired the term post-exertional malaise
One of the defining symptoms of ME is not a relapse lasting 24 hours, but a common finding that exertion can cause relapses lasting months, years and sometimes for life with dramatically worse symptoms and a strong risk of death through cardiac failure.
This was found in the past to be the most important factor in insuring a recovery after initial infection, if the patients could be confined to bed for often several months after the initial onset had subsided then they often could make a full recovery, if they didnt rest the condition would become lifelong.
Such a tragedy that this piece of information has been lost, if doctors knew it and knew how to quickly identify ME then so many people could be saved from a life of suffering.
The closest to what is being described as PEM I can find in the diagnostic software is Decreased exercise tolerance/effort fatigue which has 94 possible causes
http://en.diagnosispro.com/differen...rcise-tolerance-effort-fatigue/25296-154.html
And this is the point Im trying to make. The thing is that there is nothing unique to ME/CFS or CFS, about having a pathologically slow recovery period. usually 24 hours or longer, brought on by exertion, no matter which of the group of symptoms mention in the CCC under Post exertional Malaise/fatigue someone has.
What they describe in the CCC is common place in a large amount of chronic illnesses, a lot of which get misdiagnosed as ME/CFS because of this confusion.
There is nothing unique to ME/CFS about it at all and no reputable medical source has ever said that it is, its just being mentioned as a symptom along with all the others, somewhere along the line someone has taken it out of context, and said that it is unique to ME/CFS and/or CFS and then this falsehood has spread across the internet. With the unfortunate consequence that people believe it and take it as confirmation that the can only possibly have ME/CFS and dont look for other missed illnesses.
So if people can realise this, then they can see that the CCC has no DEFINING symptoms!!!!!!!!!!!!
Which means qualifying for a diagnosis of ME/CFS using the CCC, actually is as meaningless as qualifying for a diagnosis of CFS using the CDC or Wessely school criteria, a CCC ME/CFS diagnosis is a waste basket diagnosis and the reality is you could have anyone of a large number of illnesses, and to make matters worse because they have included some of the symptoms of ME like POTS, some of the diseases that are being missed and misdiagnosed as ME/CFS by using the CCC are very serious and life threatening!!!!!!!!!!!!!!
If people can look at ME/CFS as defined by the CCC and see that it doesnt come close to defining ME you can then take the ME out of the name and you end up with /CFS, If people can then realise that CFS is a made up bogus disease invented by the CDC to cover up ME , then you can also take away the CFS from the name and you end up with / this / represents millions of misdiagnosed people, which If they realise this then they can start to seek a real diagnosis.
Disease are made by nature, ME is still the same disease it always has been, and is still stalking the human population and ruining peoples lives. It has not miraculously disappeared because the CDC lied in 1988 and said it had, and CFS didnt miraculously appear because the CDC lied and said it had, ME/CFS didnt miraculously appear because the writers of the CCC didnt to their research and got their facts wrong and said it did!!!!
There is only ME and a large collection of other well known diseases that can often be successfully treated!!!!!!!!
There is no disease called CFS and there is no disease called ME/CFS, they are made up by man, not made by nature!!!!
As I said in the earlier post, the CCC is very badly researched and relies heavily on information from the Wessely School and the CDC, There are no references to any of the research pre 1988 in this document.
What shows how badly they understood the situation is this statement at the start of the CCC
Recent years have brought growing recognition of the need for clinical criteria for myalgic encephalomyelitis (ME), which is also called chronic fatigue syndrome (CFS)
Anybody researching anything is supposed to do an achieve search to find all relevant publications, The last Major publication on ME that I am aware of was published in 1990 and contains a lot of information on Enteroviruses that they had been doing for several years and contains a detailed explanation of the symptoms of ME and how to tell it from PVFS. This publication can be found here
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2429637/pdf/postmedj00163-0031.pdf
Another less well known publication on ME is this one published in 2002
http://www.name-us.org/DefintionsPages/DefinitionsArticles/Richardson2002Guidelines.pdf
The CCC was published in 2003
So the CCC achieve search didnt even go back 13 years, and in the case of the second article one year!!! To make matters worse the old ME literature is mentioned in the CDC investigation at Lake Tahoe and in the Oxford Criteria references which the CCC has in its references, which they should of read! (Yes the CDC and the Wessely School have always known exactly what ME is and have read the research on it!!!!!!!!!!!!!!!)
Since 1988 ME and CFS is the only area in medicine that people can get away with putting out information based on not doing their research and making things up as they go along. In any other field of medicine if someone put out a definition of a disease, and ignored over 50 years of a vast amount of research in doing so. They would be slaughtered by the rest of the medical profession, they would be a laughing stock, and have their reputations and carriers in tatters. I have a close family member who is a medical researcher I know how it works!
As Mark correctly points out in a previous post in this tread if the Phoenix Rising site is to have ME in its name, then the old research needs to be read and understood.
If the CCC wanted to put the name ME in their illness then they too should have read the research, and it is to my mind inexcusable and somewhat embarrassing that they didnt because their doctors and scientists who have accesses to the information in the Journals.
The CCC is exactly what all the other CFS definitions are.
A large collection of symptoms that are commonly found in a vast number of different illnesses.
Instructions to only do a very minimal amount of testing to rule out other disease, which you would be lucky to rule out ten percent of the possible other illnesses using the test recommended, and the amount of testing required for someone to get one of these diagnoses is often less than a sick dog would get when taken to the vets!
And instructions not to waste extra money, doing additional testing.
The CCC is just a combination of some of the symptoms of ME and the symptoms of a large number of diseases that get misdiagnosed as CFS.
I have no doubt that the writers of the CCC had good intentions, but they have failed to do their research and have not understood what ME is and always has been!
All the best
