Mary Schweitzer

IMPORTANT - I WROTE THIS LATE AT NIGHT AND THERE WERE SOME INACCURACIES THAT I HAVE FIXED - IF YOU DON'T HAVE THE VERSION WITH THIS CAVEAT ON TOP, PLEASE CHANGE IT TO THE VERSION BELOW. THANKS. M.E. and CFS This disease was first documented in a cluster outbreak in Los Angeles in 1934, in the middle of a polio outbreak. It was given the name atypical polio, and through other cluster outbreaks it either was called that, or sometimes icelandic disease for an outbreak there. In 1955, when the polio vaccine supposedly eliminated polio (not quite), there were three major cluster outbreaks in the UK. The most famous was an outbreak among medical personnel at Royal Colleges in London. That ended up being given the name Myalgic Encephalomyelitis (actually, originally benign Myalgic Encephalomyelitis because it didn't immediately kill you - and WHO still includes the word benign, tho it was soon dropped by physicians because, as Ramsay said, "there's nothing benign about M.E." In 1969, M.E. was added to the ICD codes under neurology. M.E. is coded at 323.9 in the chapter on neurology in ICD-9-CM, which the US is still using (until October 1), though it has been known to disappear for a while ... Ramsay and Richardson and several other British clinicians continued to work on M.E. for a while, and Ramsay published a textbook on it in 1986, revised in 1988. You can find his definition of M.E. from his 1986 textbook (reformatted with more white spaces to be easier to read) here: http://www.cfids-me.org/ramsay86.html in the US, the term M.E. was simply not used. Instead, the US adopted "epidemic neuromyesthenia." The term had fallen pretty much out of use by the mid-1980s cluster outbreaks, unfortunately. But because of that, we in the US do not have a history of M.E. diagnoses, and most doctors have never heard of it. Up through the 1960s, Multiple Sclerosis had been diagnosed as "hysterical paralysis" - but the proof of the deterioration of the myelin sheath ended THAT. I include this because - what a coincidence - suddenly in 1970 and 1971 there were two articles asserting that M.E. was really "hysterical paralysis" - solely on the evidence that some of the outbreaks had occurred in women's or girls' dorms. I've always thought they were looking for somebody to take the place of the MS patients in their clinics ... "hysterical" never caught on - but its flip side, "neurasthenia" (a nervous condition, the vapors) became the favorite diagnosis of British psychiatrists. It was not generally used in the US. But when British psychiatrists USED this diagnosis, they were violating the rules of WHO's ICD, because it was supposed to be coded under neurology, not psychiatry. Then in the mid 1980s there were cluster outbreaks of the disease all over the place - the United States, Canada, the UK, Australia. At first, the late Stephen Straus of NIAID (the National Institute for Allergies and Infectious Diseases at NIH) insisted it was chronic Epstein-Barr, because the trigger in many of these outbreaks was a cluster outbreak of Epstein-Barr (mono, glandular fever). THEN, Straus found it was not clearly due to EBV, and for reasons that still escape me, he became furious at the patients. Really. Straus began using the phrase "the chronic fatigue syndrome" in 1986 in his funding requestions, and in 1988, there was a conference headed by Straus and by Holmes of CDC to name and define this "new" entity. There were at least four researchers or clinicians who knew what M.E. was, and they strongly urged that the committee recognize the outbreaks as M.E. They were ignored. Holmes published a definition for the newly named "chronic fatigue syndrome" after the committee met, and that became known as Holmes (1988). Then the British shrinks came up with their own definition for "CFS", where they did not exclude psychiatric symptoms and any physical explanation for the symptoms DID get the patient excluded. As you can imagine, this definition has really muddied the waters by producing very different data sets. It is called the Oxford definition. In 1994 there was an attempt to reconcile the international definitions, and the result was what is called Fukuda (1994). Most good biomedical research has been done using Fukuda - but I personally think they started out using a tighter-defined group of patients, often from a cluster outbreak. The Fukuda definition requires 6 months of "debilitating fatigue," and then 4 of 8 symptoms (substantial impairment in short-term memory or concentration; sore throat; tender lymph nodes; muscle pain; multi-joint pain without swelling or redness; headaches of a new type, pattern, or severity; unrefreshing sleep; and post-exertional malaise lasting more than 24 hours. The biggest problem with Fukuda is that patients could have four symptoms that really aren't indicative of M.E. or cluster-outbreak CFS. CFS was never put into WHO's ICD-9 codes because WHO was getting ready to roll out ICD-10. So the US put it under "vague signs and symptoms" in ICD-9-CM, which will be in use in the US until October 1. In ICD-9-CM (which is what your doctor currently uses in the US), CFS is coded at 780.71 and M.E. is coded at 323.9. The UK adopted ICD-10 in the mid 1990s; Canada adopted its own version, ICD-10-CA in 2003. Both M.E. and CFS are coded to G93.3 along with Postviral Fatigue Syndrome in the WHO's ICD-10. However, CFS was only in the index, not in the more formal tabular version. In 2003, Canada added CFS to the tabular version to their ICD-10-CA, and put them all at G93.3 - under neurology. The National ME/FMS Society of Canada created a very good definition to go with the new Canadian category, which was called ME/CFS. So there IS a legitimate definition for ME/CFS - it is the Canadian Consensus Criteria (CCC) for Canada's ICD-10-CA classification of ME and CFS at G93.3 (Actually, that is the "International Consensus Criteria" (2003) - but since there are two other sets of definitions called the International Consensus Criteria, most of us use CCC.) Meanwhile, in the US, in anticipation of moving to ICD-10, CFSAC recommended in 2004 that the US adopt the Canadian definition. It repeated that recommendation several times over the next decade, and finally, in 2014, CFSAC asked for an open workshop of professionals to update the Canadian Consensus Criteria, or CCC, as it is often called, and then to adopt it. The result was a flurry of activity, but not as CFSAC had requested. And it may have been due to other factors as well. There was the IOM, which suggested renaming the disease SEID (Systemic Exertion Intolerance Disease), and the P2P - both were very rushed and it is unclear how much impact they will have on the government health agencies they were supposedly advising. (The biggest problem with SEID is that it omitted the exclusions that were in Fukuda and the CCC, and that can result in a very strange data set, a mess for both researchers and clinicians.) In the meantime, in 2011 a group of clinicians and researchers met in Calgary in Canada to create a new research definition for Myalgic Encephalomyelitis, which they then published in the Journal of Internal Medicine. It REQUIRES post-exertional exacerbation of symptoms. As the US moves into ICD-10-CM in October, CFS will not be put in G93.3 with M.E. It will be coded at R53.82 - back in vague signs and symptoms. Changing the chapter is a SERIOUS departure from WHO's rules for using ICD (and your nation's own version of it). I know of no other disease or disorder where the US has done that, frankly. NCHS (which is within CDC), who is in charge of the various ICD-CM codes, insists that the R53.82 code means they are "not changing" how CFS is coded - but they have definitely changed how it is coded in WHO's ICD-10. I think they are being deliberately misleading. I heard them testify back in 2003 that CFS and M.E. were both going to be in G93.3 in ICD-10-CM - then they came back in 2005 and all that had changed, after Bill Reeves of CDC had insisted vociferously that they not "change" where CFS is (from the US standpoint, but obviously not from the international standpoint). Hope this didn't confuse you more! and I hope it helps some. Geoffrey Keith Brown the pricks gave me 27ects and 2 years of 120mg of lovan cbt and get before I came to my senses. because my previous petition wah hoplsess inadiqute, i have asked my good firend Mary Schweitzer indoubbtly the world expert on all things Myalgic EncephalomyeItis (ME) a diferent ilness to CFS, to write me a new Defnnition. People cannot or will bot belive that octors could be cruel, unscientific, ignorant and illorgical; or that our government and media could be so unenthical and dishonest by selling their integrity for politiical and finance gain; or that so-called "charities" could be just corrupt. Whilever austrlain (me) scocieites limup words CFS with m (me) they are doing everyone a diservice (me) and CFS aretwo diferent Illness. The UK site me alliance and that mighty warrior Michael Evison is already calling the desiase Ramseys (me) Wake up Australians Soiety drop CFS While CFS is a debilating Syndrome it is not an ilness as suchSo wake up Australian Scoities take Michael Evison example and call it the right name, Untill you do so you are doing everyone a diservice. In closing thankyou to that mighty lady Mary Schweitzer for all of her help and imput