Hi firestorm, in case for some reason this link
http://www.cdc.gov/cfs/education/wb1032/chapter1-1.html I gave you isnt taking you to the right page Ive copied the whole page hear the CDC statement on ME is at the end of the last paragraph.
Chapter 1.1: Overview of CFS
Average completion time for Chapter 1 is ten minutes.
Chronic fatigue syndrome (CFS) is a complex illness characterized by profound fatigue of at least six months duration that results in substantial reduction in occupational, personal, social or educational activities; the fatigue is not improved by rest, may be worsened by physical or mental activities, and is accompanied by characteristic symptoms (impaired memory or concentration, unrefreshing sleep, headaches, muscle pain, joint pain, sore throat and tender cervical/axillary nodes). CFS is marked by a dramatic difference in pre- and post-illness activity level and stamina.
Most people with CFS who consult health care professionals describe their illness as beginning suddenly over a period of hours or days. In contrast, most people with CFS who are identified in community studies describe a gradual onset of illness over weeks or months. The clinical course of CFS varies considerably among people with the condition and frequently has an intermittent pattern of relapse and remission. As yet, there are no diagnostic tests or laboratory markers for CFS, and its pathophysiology remains unknown. Selected research findings will be discussed in this course.
Illnesses similar to CFS have been documented for several centuries, some possibly linked to bacterial, viral or protozoal infections such as brucellosis, yellow fever, hepatitis, influenza and malaria.
CFS was first formally defined in 1988 (Holmes et al.) following studies by CDC in Incline Village, Nevada. However, similar illnesses have been described for many years and known by many names. Current interest in CFS began in the early 1980s when several groups around the U.S. identified patients with chronic fatiguing illnesses thought to be prolonged infectious mononucleosis based on the clinical presentation and laboratory evidence of what was then considered an active Epstein Barr virus (EBV) infection. Subsequent studies of these cases, including one in Incline Village, Nevada, did not support a role for an active response to EBV. When the illness was first defined in 1988 the name chronic fatigue syndrome was selected because a more specific name implying known pathophysiology would have been misleading and because the most common and prominent symptom was found to be chronic fatigue (Holmes et al.).
Various terms are incorrectly used interchangeably with CFS. CFS has an internationally accepted case definition that is used in research and clinical settings. The name chronic fatigue and immune dysfunction syndrome (CFIDS) was introduced soon after CFS was defined; there is no case definition for CFIDS, and the name implies an understanding about the pathophysiology of CFS that is not fully supported in the medical literature. The name myalgic encephalomyelitis (ME) was coined in the 1950s to clarify well-documented outbreaks of disease; however, ME is accompanied by neurologic and muscular signs and has a case definition distinct from that of CFS.
Not wishing to demean Corts efforts, but a far better description of the history and background of ME and CFS can be found here
http://www.imet.ie/imet_documents/BYRON_HYDE_little_red_book.pdf Its written by doctor Hyde who has personally examined patients from 59 of the 60 recorded ME epidemics, has been working with ME patients exclusively for about 25 years, seen thousands of ME patients and has read probably everything that has ever been written about it. In this article he explains more about his work and what he does to find all the other diseases that are misdiagnosed as ME and CFS here
http://www.wicfs-me.org/Pdf Files/Byron Hyde - Complexities of Diagnosis.pdf and this is his criteria for ME which is better than the ICC as it stands at the moment, (like a say it looks as if there will be a lot more from the ICC writers in the near future) because it is testable
http://www.nightingale.ca/documents/Nightingale_ME_Definition_en.pdf it has been submitted to members of the House of Lords and the House of Commons, and instead of using it as a basis for further research the UK government has ignored it and instead given money to Wessely to push graded exercise on people.
RE Well documented outbreaks of the disease still failed in my view to retain the name, to prove the name was most appropriate, and failed to prevent the absorption of Encephalomyelitis into CFS or Encephalopathy (the latter's use has arguably more going for it).
The name ME was deliberately abolished by the UK government, in defiance of the WHO, and 50 years of medical research has been deliberately ignored, so that they can push the psychiatric nonsense on people. See Hoopers articles.
RE When I was diagnosed with Myalgic Encephalomyelitis it was along the lines of that laid out by Dr Ramsay (the only real thing around at the time), yet it involved no tests that I recall other than those which happen presently. I do not doubt that for others testing for specific neurological abnormalities occur - whether they are 'better' at justifying the name I do not know - but for my doctors and consultants it was enough that I satisfied the criteria of the time.
And those criteria - without scans but based on exclusionary blood tests and a viral case history - led to the diagnosis. Which then became 'CFS' when I saw a US physician and Encephalopathy more recently. I personally have been reassessed on average every one-two years for the last decade in several countries, though mainly in the UK, whenever a relapse occurs brought on by a 'viral infection'. The name applied changes but the criteria rarely do to any significant extent and neither do the tests.
Unfortunately at the time of your diagnosis the modern imaging equipment wasnt available, but now there is the opportunity to research and use it
ME didnt become CFS the CDC changed the symptoms and invented a new disease that had far more inclusive symptoms that has allowed far more people to be misdiagnosed with it, compare Fukuda to Ramsey. And exclusionary blood tests have now become so few that they would be lucky to rule out half of all other possibilities I would imagine that when you got your diagnosis under Ramsey definition you probably had a far larger number of test and diseases ruled out then the majority of people gets these days.
RE Perhaps you could show me how the CDC test for Myalgic Encephalomyelitis and define it because I would honestly like to know. I would also like to know prevalence data for 'ME' in the US. Here in the UK ME in 1999 was put at 0.3-0.5% of the population which then amounted to 240,000 patients. The paper submitted at the time looked at the history of 'ME' from 1919-1999: of course it could have been wrong...but...
The CDC has not made available any information on how to test for ME, any other information on how they define it ,other than the above statement, They have provided zero information on how many people have it ,and spend a grand total of zero dollars a year researching it, which is why Im urging the US patients to take action and demand that their government do something about this diabolical situation, because now that they have publically admitted that it exists, they can now be pressured into doing something about it.
Unfortunately all prevalence data is nothing more than guesses, the only real information comes from doctors who can tell the difference between ME and CFS and can tell what the percentage is amongst their patents, and then try and work it out based on the reported number of CFS cases, but like a say I think Jasons figures give a good idea of how low it is.
I bet you were pissed when the name got changed to CFS, talk about a demeaning name!!! ME should stay as the name because it is WHO approved, encephalomyelitis, correctly implies that it is a neurological illness, and inflammation has been found at autopsy in ME patients. CFS should be completely abandoned as a disease category because it isnt a disease it is a collection of a large number of different known fatigue causing illnesses. And the existence of CFS gives doctors an easy out to just give them a CFS diagnosis instead of finding out whats really wrong with them.
All the best
