Hi Andrew, RE
I don't believe that Fukuda or Reeves accurately describe the people were first assigned the term of CFS. I think what has happened is they used an overly broad definition and a bad choice of names, and the problems escalated because of that. I also don't think bad definitions define an illness. I think the illness comes first, and the definition has to fit it. So in the end, I think Fukuda and Reeves defs will prove useless for anything except data mining of old research.
You are completely right the illness has to come first it has to be properly and intensively studied and then the definition has to be written based on the evidence, and clearly explain the illness in terms that can be easily understood by the average doctor that will have to use it, it has to make it very clear what are the symptoms of the illness are, and what symptoms differentiate it from other similar illnesses. If there are similar conditions that overlap with this illness, which may confuse the average doctor and lead to misdiagnosis, they need to be named and instructions on testing to rule out the other diseases should be given. Especially if these overlapping conditions are rare, and the average doctor is unlikely to know how to test for these conditions.
Do Fukuda and Reeves fulfill these conditions! Absolutely not! They are not written by people who have extensively studied the illness; Fukuda himself was an expert on leprosy and had virtually no experience with CFS patients, most of the doctors involved in writing CFS definitions have virtually no long term experience with ME or CFS patients and in a lot of cases they had never even seen a CFS patient, and the definitions are not based on any extensive testing or study of the patients. They are just collections of very common symptoms found in hundreds of diseases. With no instructions on how to differentiate the symptoms being attributed to CFS from other diseases with the same symptoms. The lists of diseases that have to be ruled out in the CFS definitions are so incomplete that it laughable e.g Celiac can cause identical symptoms to CFS and affects one in a hundred Caucasians and its not listed in almost all of the CFS definitions as a condition to be ruled out.
The reality is that the CFS definitions dont define any disease, they are a collection of very common symptoms found in numerous diseases with appallingly incomplete instructions on which other diseases need to be ruled out and how to do it, with a demeaning and offensive name attached to them CFS. They are all recipes for misdiagnosis!!
So going back to the beginning of CFS did the original Holmes CFS definition
http://www.ncf-net.org/patents/pdf/Holmes_Definition.pdf fit the illness? I think it is essential if people are going to understand anything properly that they start at the beginning of the story, starting in the middle can only cause confussion.
The CDC claim that CFS was invented based on the epidemic that happened at Lake Tahoe, so weve immediately hit are first fault in the CDC claim, because they have been claiming that CFS isnt infectious and therefore cant cause epidemics, so how can CFS be based on an epidemic???!!!! Hmmm, Im smelling a rat already!
The Tahoe epidemic caused quite a stir and was widely reported in the US press, it was given the name Raggedy Anne disease because the patients had such profound muscle weakness that they were unable to move and were so limp that they resembled the Raggedy Anne dolls that used to be given to children. Now you wont find this symptom in the Holmes CFS definition or any of the subsequent CFS definitions, but it does sound an awful lot like the muscle weakness that Ramsey describes in his ME definition!
The Tahoe epidemic is described by the doctors and patients there as a very fast moving highly contagious epidemic starting with a flu like infection that then after a few days to a week, turned into profound muscle weakness and pain and severe neurological symptoms, including dramatic lose of intelligence and virtigo, leaving a percentage of these patients severely disabled. It doesnt actually bare any resemblance to the illness that the CDC said that it was, this obviously wasnt CFS, it bears an uncanny resemblance to the outbreaks of ME described in the older literature and the ME that Dr Hyde describes in his definition. The other interesting thing about Tahoe is that Dr Chenney was so concerned about the patients that he paid himself for them to have MRI scans, which showed lesions in their brains similar to those found in AIDS patients. The CDC knew about this before they invented CFS in the Holmes definition and somehow managed to forget to put this very important piece of information in the CFS definition.
There are a couple of very interesting videos in which Dr Chenny and some of the patients at Tahoe describe what happened to them here
http://www.youtube.com/watch?v=Om1cEPxLfyM&feature=related
http://www.youtube.com/watch?v=PUFsjhjCaOc&feature=related
So what we have at Tahoe is
A acute infectious type illness spreading at great speed, causing an initial flu like illness, that then progressed into profound muscle weakness and pain and disabling neurological symptoms, and when the brains were studied using MRI it showed Aids like lesions in the brain.
When the CDC claimed that they based CFS on Tahoe they obviously werent being entirely truthful. In fact a fast spreading infectious disease (therefore short incubation period) with a acute onset flu like illness followed by a second phase of muscle and brain symptoms sounds identical to all the previous descriptions of ME since the Los Angeles hospital outbreak in the 1930s, after all Myalgic Encephalomyelitis is doctors speak for muscle and brain symptoms.
So did the CDC know all this, or did it somehow escape their attention when they were inventing CFS? Of course they knew all about, and due to the wonders of the internet heres the evidence. Before CFS was inflicted on the world by the CDC. The CDC doctor Dr Stephen E Strauss who is one of the principle writers of the Holmes definition that invented CFS, wrote a little article called The Chronic Mononucleosis Syndrome see
http://jid.oxfordjournals.org/content/157/3/405.extract
In which he wrote this
Epidemic Neuromyasthenia (The US name for ME since the 1950s)
In 1985, physicians in one medical practice serving incline village near Lake Tahoe, Nevada, noted a sharp increase in numbers of patients presenting with an ACUTE INFECTIOUS TYPE ILLNESS that was followed in many by chronic fatigue, myaligias, headache, feverishness and cognitive problems.
And
The features of this outbreak are most reminiscing of >30 similar ones described since 1934 (Los Angeles), each involving a few or nearly a thousand individuals. Most of the patients had been young to middle aged and highly educated; 70%-90% were female. As in Lake Tahoe, the majority recovered completely within a few weeks to months, but some had persistent fatigability that was said to be exasperated by physical and emotional stress. (exertional relapse)
The onset of the illness in some of the Tahoe patients was associated with a modest atypicqal lymphocytosis, partial hypogammaglobulinemis or a high ratio of helper to surppressor lymphocytes ( so much for the CDC long held bullshit claims that ME patients dont fail any tests, they knew all this before they invented CFS)
And
One still perplexing feature of some of the patients in the Tahoe outbreak is the report that Magnetic imaging (MRI) demonstrated small foci of increased signal in the brain (P. Chenney, D. Peterson, A Komaroff, personal communications) These identified bright foci are similar to ones associated with multiple sclerosis, but the patients possessed none of the other physical or laboratory stigmata of that disease,
So the CDC new that the illness at lake Tahoe that they claimed to be what they the illness that they invented CFS on, was a
Acute infectious type illness with Myalgia (muscle pain) feverishness, that relapsed with physical and emotional stress, that did cause failed tests at the beginning including immune function tests and MRI tests showed severe brain damage, and it was most reminiscing of more than 30 similar outbreaks, which were ME outbreaks and yet somehow the CDC managed to leave all this out when they invented CFS!
Does the definition match the illness; no it doesnt even come close.
The references in this articled that show that Dr Strauss was talking about other ME epidemics when he said that Tahoe was reminiscing to them, are
1 Gilliam AG: Epidemiologic Study of Epidemic Diagnosed as Poliomyelitis, Occurring Among Personnel of Los Angeles County General Hospital During the Summer of 1934, bulletin 240. Washington, DC, US Public Health Service, Division of Infectious Diseases, Institute of Health, 1938, pp1-90
2. Henderson DA, Shelokov A. Epidemic neuromyasthenia a clinical syndrome? N Engl J Med 1959;260:757-64
http://www.nejm.org/doi/full/10.1056...95904092601506
3, The Medical Staff of the Royal Free Hospital: An outbreak of encephalomyelitis in the Royal Free Hospital Group, London, in 1955. Br Med J 1957;2: 895-904.
http://www.ncbi.nlm.nih.gov/pmc/arti...03125-0013.pdf
4. The Clinical Syndrome Variously Called Benign Myalgic Encephalomyelitis, Iceland Disease and Epidemic Neuromyasthenia E.D. Acheson, D.M., M.R.C.P.
http://www.meresearch.org.uk/informa...son_AmJMed.pdf
Thanks to the internet we also know why the CDC was so well informed about other ME outbreaks around the world and had link tahoe to ME, its because Dr Donald Henderson who invented the name Epidemic Neuromyasthenia the US name for ME in the 1950s told them, as he explains in this article Reflections on Epidemic Neuromyasthenia
http://cid.oxfordjournals.org/conten...t_1/S3.extract in which he says
In the mid 1980s, newspaper accounts appeared of a mysterious epidemic on the California-Nevada border (lake Tahoe). The epidemic sounded suspiciously like those that we had investigated and reviewed. The investigators of the Centre for Disease Control (CDC Atlanta) alluded to certain other outbreaks with similar characteristics but made no reference to the epidemics of the 1950s. I suggested to colleagues at the CDC that the investigators might benefit from reading our 1959 review article in the New England Journal of Medicine (see Epidemic Neuromyasthenia- Clinical syndrome above) They had not seen it. As they said, We did not know it was that long ago. In the literature search, we only went back to 1965.
So what actually was the CDC investigation into what happened at Lake Tahoe?
Well if you want to see a definition for a disease that was based on great research, intensive study of the patients and the honest inclusion of all the evidence, sorry youre going to be extremely disappointed.
So in 1985 at Lake Tahoe the Drs there Cheney and Peterson got swamped with a large number of patients with a acute onset illness that was leaving the patients severely disabled, so they ran all the tests that they could on these patients, and tested for all the normal known viral and bacterial diseases that could cause these kinds of symptoms and came up with no answer, but the disease kept spread and the numbers of patients rapidly kept increasing, So they rang the Centre for Disease Control CDC for help, the CDC did nothing this went on for months and then finally they arrived. So the Tahoe Doctors thought wonderful the Cavalry has arrived, only to be seriously disappointed!!!
The three CDC doctors Gary P Holmes, Jonathan E Kaplan, and Lawrence B Schonberger (all of whom wrote the Holmes CFS definition and invented CFS in 1988) didnt set about an intensive study of the patients they only stayed a few days, and instead according to the account of people who were there spent most of the time having a nice holiday playing Golf and going Hiking. All the CDC doctors did was collect up blood samples from the patients and instead of taking the time to examine the patients they interviewed them by telephone.
So in a nut shell CFS was invented on a study of patients that the doctors hadnt seen let alone examined!!!!!
The results of the CDCs trip to Tahoe which it sounds like would be more accurately described as a paid holiday rather than a serious scientific study. Were published in a article called a A Cluster of Patients With a Chronic Mononucleosis-like Syndrome which according to Hillary Johnson who obtain information about what the CDC had been up to by using the official secrets act, had to be rewritten numerous time in an attempt to get it to make any sense, (something that they still failed to achieve in the finished article)
The full article can be viewed here
http://jama.ama-assn.org/content/257/17/2297.full.pdf put because you have to sign in to view it Ill give you a brief synopsis.
In it, it states that they tested 134 patients from the Lake Tahoe epidemic for Epstein barr viruses EBV (known as mono in the US and Glandular fever in the UK) So your immediately going what!!! Ever doctor on the planet knows what Epstein Barr is, it is one of the most commonest infections on the planet that 90% of people in the world get at some point in their lives, it has an incubation period of forty days, so its impossible for it to cause a fast spreading epidemic, and the Tahoe doctors had already tested the patients for it found it wasnt the cause along with all the other common viruses, which is why they had rung the CDC in the first place.
The article explains how they interviewed the patients by phone and asked them leading questions like are you fatigued, it leaves out all the serious symptoms that were found in the Tahoe outbreak and explains that the results of the testing was, that out of the 134 patient they found 15 that either had slightly higher antibody results to Epstein Barr or cytomegalovirus (another common virus that is similar to mono) or HSV1 and HSV2.
So their study showed that none of these viruses caused the outbreak!!!! The viruses that they tested for are so common that if you select any group of 134 from anywhere on the planet healthy or not then you have a very good chance of finding amongst them 15 people with raised antibodies to these viruses. It had been found out a long time before this that some completely healthy people have raised antibody levels to these viruses which makes it look like they have an infection but there is absolutely nothing wrong with them.
They then state that the reproducibility of the tests within and among laboratories was poor, so even the results that they did get couldnt be trusted.
They then conclude by saying
The relationship of this fatigue syndrome to EBV is unclear; further studies are needed to determine its etiology.
Well 15 out of 134 makes the relationship between EBV and the Tahoe epidemic very clear, Tahoe was not caused by EBV!!!!!
The other interesting thing about this CDC article is that it shows that the CDC doctors involved knew everything about ME and its history going back to the LA epidemic in the 1930s which is proved if you look at the reference in this article in them you find that they have read most of the major publications on ME including
1. Sigurdsson B, Sigurjonsson J, SigurdssonJH, et al: A disease epidemic in Iceland simulating po- liomyelitis. Am J Hyg 1950;52:222-238.
http://aje.oxfordjournals.org/content/52/2/222.long
2.Sigurdsson B, Gudmundsson KR: Clinical findings six years after outbreak of Akureyri disease. Lancet 1956;1:766-767.
http://www.sciencedirect.com/scienc...c2e3183bca9723306149c6ea53011607&searchtype=a
3. White DN, Burtch RB: Iceland disease: New infection simulating acute anterior poliomyelitis. Neurology 1954;4:506-516.
http://ovidsp.tx.ovid.com/sp-3.4.0b...4-195407000-00003&NEWS=N&CSC=Y&CHANNEL=PubMed
4. Gilliam AG: Epidemiologic Study of Epidemic Diagnosed as Poliomyelitis, Occurring Among Personnel of Los Angeles County General Hospital During the Summer of 1934, bulletin 240. Washington, DC, US Public Health Service, Division of Infectious Diseases, Institute of Health, 1938, pp1-90.
5. Galpine JF, Brady C: Benign myalgic encephalomyelitis. Lancet 1957;1:757-758.
6. Shelokov A, Habel K, Verder E, et al: Epidemic neuromyasthenia: An outbreak of poliomyelitislike illness in student nurses. N Engl J Med 1957;257: 345-355.
http://www.nejm.org/doi/full/10.1056/NEJM195708222570801
7.Poskanzer DC, Henderson DA, Kunkle EC, et al: Epidemic neuromyasthenia: An outbreak in Punta Gorda, Florida. NEnglJ Med 1957;257:356\x=req-\364.
http://www.nejm.org/doi/full/10.1056/NEJM195708222570802
8. Dillon MJ, Marshall WC, Dudgeon JA, et al: Epidemic neuromyasthenia: Outbreak among nurses at a children's hospital. Br Med J 1974;1:301\x=req-\305.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1633383/pdf/brmedj02176-0019.pdf
9.The Medical Staff of the Royal Free Hospital: An outbreak of encephalomyelitis in the Royal Free Hospital Group, London, in 1955. Br Med J 1957;2: 895-904.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1962472/pdf/brmedj03125-0013.pdf
Hmmm, bit of a slip up on their behalf, including references to a epidemic causing illness that leaves patients permanently disabled with the same symptoms that they found at Tahoe, that the doctors decades before had already ruled EBV out as the cause in an publication were your trying to imply that EBV is the cause!
So now it starts to get even more interesting were the further studies needed to determine its etiology ever done? NO the CDC has not been near the Tahoe patients since 1985 and these further studies that needed to be done, were never done on any other group of patients.
Instead the CDC jumped straight to inventing CFS in the Holmes definition, in which you will find that they are trying to imply that even though their own study has ruled out EBV, CMV, HSV1 and HSV2 as the cause, that these viruses are the cause of CFS, you also find that they have left out the acute onset epidemic causing nature of the disease at Tahoe, the devastating Neurological and Muscle symptoms and the fact that MRI scans showed sever brain damage. What you find is fatigue, slightly raised temperature and raised lymph glands. Now anyone who knows anything about Epstein Barr virus can immediately see that this CFS definition is actually just a description of the symptoms of EBV (wed had a definition for EBV for decades and certainly didnt need a new one with the wrong name attached)it does not have anything to do with Tahoe.
So going back to the original question does the definition match the illness, and is it based on a serious and intensive study of the patients with the illness? Absolutely not, the CFS definition bears no resemblance to the illness at Tahoe that the CDC claim it was based on, and the patients werent even properly examined, they were interviewed by phone, the tests that the CDC ran were for viruses that had all ready been ruled out, and couldnt possibly cause a fast moving epidemic. And even when the CDCs own study ruled out these viruses, they still tried to imply that they were the cause, and they left a large amount of the worst symptoms found at Tahoe out of the CFS definition including the severe neurological symptoms and the testable brain damage, they failed to mention that in the early stages the Tahoe patients failed other blood tests including immune function tests.
Instead they invented a new illness with no resemblance to the Tahoe epidemic and gave it the name CFS which can only be taken to imply that it isnt really a very serious illness.
Dr Hyde gives a detailed account of the Tahoe epidemic and what he found when he did actually go and examine the patients and talk to the people involved, and more information on the invention of CFS in this article
http://www.imet.ie/imet_documents/BY...e_red_book.pdf and Hilary Johnson gives some more information on the goings on at the time in this article
http://www.oslersweb.com/the_why___a_speech_in_london_86981.htm
So if you look at all the evidence that has become available with the internet a large amount of which is actually written by the CDC you can see that not only as you say I don't believe that Fukuda or Reeves accurately describe the people were first assigned the term of CFS. Nor does the original CFS definition accurately describe the people first assigned the term CFS.
In my opinion what the evidence shows is a cover up, instead of saying that Tahoe was an epidemic of the well documented disease ME, they instead fudged the evidence and invented a new disease that doesnt sound anywhere near as bad, gave it a name that implies that it isnt very serious, denied the evidence that it can cause severe brain damage, denied the evidence that it can cause epidemics and is therefore highly infectious and denied the existence of the fast amounts of medical literature on ME (which they had read) and have continued to denie the existence of ME for decades.
Basically they wiped out one disease, and replaced it with a made up one.
The question you have to ask is WHY? Some of the background information helps to explain why. At the time the CDC was not the vast well funded machine that it is now, it was an underfunded, run down organisation, miles away from the rest of the government in Atlanta, that spent most of its time doing experiments on illnesses found in third world countries. Incline Village and the whole lake Tahoe area is a Tourist town, the news of the epidemic there got out to the press, and articles were being run across the states about a plague in Tahoe, (not exactly good for tourism) It appears that the local businesses put pressure on their congress men to get the CDC to do something to shut the press up. The CDC were also being hounded by the press looking for answers, the CDC was also stretched with being involved in completely mismanaging the emerging AIDS epidemic. There seems to have been a decision somewhere along the line that two highly public epidemics at once was too much to let the public know about. So they basically shut the press up by inventing CFS and implying that it was EBV, it wasnt too serious, so nothing to worry about.
Sure an appalling thing to do, but if you read the older ME literature you find that outbreaks in the states were often decades apart, often small, a thousand patients at the most, a large number of the patients did make a full recovery, and hardly anyone died. So compared to AIDS which was killing thousands at a rapid rate, you can see how they could come to the conclusion to ignore ME at Tahoe, because chances are it would be an isolated incident that would go away.
The problem was it didnt, similar outbreaks started popping up all over the States in places like Lyndonville and in Canada, In the new Dr Byron Hyde ME definition he writes about information collected in Canada at the time about thousands of patients turning up at doctors with this mysterious illness, interestingly the Canadian doctors tested their patients for EBV and it wasnt that, but what they did find was that large numbers of them had Enterovirus infections, (a important piece of information that has been ignored)
I suspect that the CDC plan was ruined because of the modern transportation system, with so many more people doing long distance travel by planes, car and trains then they did in the past, I think this is a very plausible reason why ME spread rapidly and far and wide this time. It hitched a lift on the modern transportation system.
The problem with not being entirely truthful is that once you start you cant stop, because youll get found out, So the team at the CDC that invented CFS had backed itself into a corner, as ME spread they could not say, oh by the way you know how we said that Tahoe was just CFS, actually it was a fast spreading epidemic with serious symptoms including brain damage, but we fudged the evidence, left all that information out, and invented CFS to make it sound less, so nobody would worry about. If they admitted that they would all be sacked, lose their medical licences and end up being sued. So they just kept repeating the same gobbledygook about CFS.
Then same bright spark at the CDC came with the bright idea that they could ask the government for money to research CFS, and as governments do, they handed out money to them without checking what was going to be done with it. So from 1988 to 1996 the team at the CDC got given tens of millions of dollars by the US government to research CFS, obviously they knew they had invented a fictitious illness and never had the slightest of intentions of spending it on CFS research, so they nicked the money and used it as a slush fund for new equipment, investigating other illnesses, travel etc, etc,
During this time they wrote the Fukuda definition, the problem with the original Holmes definition was it included raised temperatures, fever and swollen lymph nodes, which makes it look like there is an infection involved and the CDC should really be getting of it ass and finding what is the cause. So they fixed that problem by removing all those symptoms that made it look like an infection, and rewrote it so it looked like depression or a somatic disorder, and went back to enjoy spending the government money.
However in rewriting the Holmes definition and replacing it with Fukuda they created another massive problem, if you look at the Holmes definition it has a very large set of other disease that had to be ruled if a patient had these symptoms, somebody involved obviously had some compassion and didnt want people being misdiagnosed. In Fukuda not only are the symptoms broader but the list of conditions to be ruled out first has shrunk dramatically which has lead to the massive number of misdiagnoses we see today. Before CFS was invented doctors were taught that any patient presenting with chronic fatigue had to be intensively investigated and tested because so many serious and fatal illnesses cause chronic fatigue, since Fukuda and CFS, if you go to the doctors now and complain of chronic fatigue, you get patted on the head, diagnosed with CFS and a prescription for anti depressants. Which has lead to so many lives being ruined and lost to misdiagnosis.
Then in 1996 Hillary Johnson busted their ass, and got a federal investigation of the CDC launched, and they were all found guilty and forced to leave the CDC, all except Bill Reeves, he was the one in charge of the team that invented CFS from the beginning at Tahoe and the one who had overseen the corruption of the evidence from Tahoe and the systematic misappropriation of all the government money that had been allocated for research. For reasons best known only to themselves, the CAA helped Reeves escape prosecution under the whistle blowers protection act. So he dumped all the rest of his CDC team in the shit and gave evidence against them and walked away with no charges, and to make matters even worse he was allowed to keep his job at the CDC and kept his old job being in charge of CFS research. So he just assembled a new team and kept on promoting CFS as a real disease and denying the existence of ME. And even wrote his own definition which is so broad, it looks more like an attempt to widen the cohorts even further so no one can ever find ME. The government did get people to make sure that the money was spent on CFS put he just spent it on all these bogus research papers that say that CFS is caused by being abused as a child, or its genetic, anything but looking for an infectious cause.
So CFS is an artificially created disease that is not based on study the patients that they claim it was, quite the contrary they deliberately left out the important symptoms and test result from the Tahoe epidemic, and have never actually studied patients that have any resemblance to what happened at Tahoe. All of the CFS definitions dont come anywhere close to defining the disease that they are said to be based on. They are all just sets of extremely common symptoms, found in hundreds of conditions, with woefully inadequate recommendations on how and what to test for to rule out these other conditions.
They have created a disease of exclusion were every other illness needs to be ruled out before the diagnosis is given, and then insist that every other illness ISNT ruled out before the diagnosis is given. Yeah right, good one, hence all the misdiagnosed.
This is why numerous sources say that a diagnosis of CFS is always a misdiagnosis. Dr Hyde who has been studying this for years, who unlike almost all the other doctors who claim to be experts in this, has actually taken the CFS definitions at their word and follows the instructions that CFS is a disease of exclusion, so he has trained himself in a lot of different fields of medicine, and tests his patients for every single possible disease that could cause their symptoms, what he has found is that doing this excludes CFS and he cant give it as a diagnosis. (Which is very funny in an odd sort of a way). What he finds by doing this is 75% of his patients who have been diagnosed with CFS are misdiagnosed, the reality is they have a known disease that has been missed by other doctors because they havent excluded everything before giving the diagnosis, these patients are often curable or if not their conditions can be greatly improved with the correct treatment for their real diagnosis, some have things like incurable cancers but at least they wont die with a CFS label and all that entails. The remaining 25% have a disease that matches all the descriptions of Me since 1934 and what happened at Tahoe so he say they have ME.
Sorry if this is taking a long time to explain, its a long complicated subject that cant be explained properly in a few paragraphs.
So finally back to plan A support the original changes to the ICD that would make ME its own separate disease for the first time in the US or Plan B support the coalition proposal give everyone no matter what is wrong with them the same ICD code and keep them all hopelessly muddled up together just like the CDC has always wanted.
Obviously Im going for plan A, ME is a different illness and should be separated, CFS isnt a disease its a collection of very common symptoms with a demeaning name attached to it that can be caused by hundreds of known and often treatable conditions. They should be in a different group, once CFS is separated everybody should campaign like mad, so that everybody has to be tested to find out what is really wrong with them and then CFS can be deleted from all codes, medical records and medical textbooks, because it doesnt exist, it was invented by knowingly seriously corrupting the evidence of the epidemic at Tahoe.
We should be aiming to fix this mess once and for all, so plan A which is based on logic and historical and medical facts is the only one that will do this, tinkering with the problem will not fix it.
You may or may not now this Andrew, but I live in a little country at the bottom of the world called New Zealand we have plan B here and it sucks big time. Most people like the idea of plan B because they think linking CFS with ME which has its own WHO ICD code and a large body of medical literature will help people take CFS more seriously, but everybody will still have the wrong diagnosis and nobody gets the treatment and research they need, it just keeps the confusion going for ever.
Where I live we have a similar system to the UK mainly government run, but theres also private insurance health care, if you pay for it, the big difference between the UK and here is there is no limits on the amount of time you can be on a benefit if you have a psychiatric illness, so theres never been any incentive to try and call ME and CFS patients psychiatric to save money, so here ME and CFS are used interchangeably and there is a general consensus that it is a serious physical condition but nobody know the cause and treatments for it, So what happens is you get stuck on a benefit after the small amount of testing thats recommended by the CDC, so lots of people are bound to be misdiagnosed, and because the benefit payments for everyone are very small you get left in poverty to suffer with whatever illness you have. We use our own codes here to get disability it says CFS but everyone views it as the same thing as ME. The private insurance side here also takes ME and CFS patients seriously an idea of how they treat the patient and the general attitude towards it can be found here
http://www.southerncross.co.nz/Abou...196/Chronic-Fatigue-Syndrome-Tapanui-Flu.aspx
The people who have private insurance are lucky because they get paid a lot more and dont have to deal with poverty as well. Yes everybody generally gets treated OK because its not viewed as a psychiatric illness, but the end result is everyone is still sick, any research is still done on mixed cohorts, and we are all left to suffer, passing the years waiting for someone to invent a miracle cure for everyone, which will never happen because everyone doesnt have the same illness.
So having the medical community seeing CFS and ME as the same thing and as a physical illness, hasnt helped anyone get better here. Or lead to any change in the last 25 years. So I recommend that people oppose the coalition proposal which will basically create the same situation as we have here, except you have the CDC and some nasty insurance companies in the states, who seem more than happy to change ME and CFS, which will be easy to do if they have the same code, into a psychiatric illness, you have the financial incentive for them to do that in the States because of the insurance run health system. Theres no financial incentive for anybody to even bother trying that here.
Anyway, hope this information helps people understand the situation better before they decide to support any changes to the ICD. Unfortunately although a lot of this information has been available on the net for years, your US CFS orgs have always pushed the same line as the CDC, there is only one illness!!! And its CFS, so they have done nothing to collect all the relevant information and educate the US patients that ME and CFS are different, and campaign to get the truth told and properly dealt with, My view from where I am is that the US patient orgs seem to be inadvertently (I hope) working for the CDC , and arent helping at all.
All the best
