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Next CFSAC meeting date has been announced for November 8, 2011

Discussion in 'Action Alerts and Advocacy' started by Andrew, Sep 30, 2011.

  1. Ember

    Ember Senior Member

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    I disagree, Tina. The ME-ICC states that its starting point is the Canadian Consensus Criteria, not Fukuda. It doesn't explicitly suggest replacing Fukuda, although you and others may choose to make that suggestion.

    The ME-ICC provides a more restrictive definition than Fukuda. Therefore, ME (ICC) patients logically comprise a subgroup of CFS (Fukuda) patients. The ME-ICC's reliance on relevant CFS research is therefore appropriate, even though its references to CFS research don't make ME (ICC) the same as CFS (Fukuda).

    The international panel was strategically balanced between clinicians and researchers. They state, "It is important to note that the current emphasis must primarily remain a clinical assessment, with selection of research subjects coming later. The ME-ICC is published and in the public domain, so there's nothing to stop clinicians and researchers from using it now.

    Yes, I've pointed out that the Coalition4ME/CFS hasn't changed its position since the publication of the ME-ICC, and I'm asking, "Why not?" The ME-ICC makes the Canadian Consensus Criteria yesterday's news, yet the Coalition continues its commitment to advocate for the adoption of the Canadian Consensus Document and to promote a new name for this illness that is more appropriate and does not trivialize or give misconceptions (http://coalition4mecfs.org/JoinUs.html -- see items 3 and 4.) If the Coalition is truly backing the ME-ICC, why does it maintain this inconsistency?
     
  2. usedtobeperkytina

    usedtobeperkytina Senior Member

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    Goodness, Ember, your last paragraph is making a good point. I suspect the patients, which also have local organizations to run, have not thought about it since that position page was set up in the spring, before the ME-ICC came out. And since then, have been busy with the task at hand. I will ask if they will be changing that in light of the ME-ICC coming out.

    I think, maybe, for the other, we really need to ask the authors of the ME-ICC. I know one of them, I'll ask. But I suspect, I will be asked to not put it out publicly, they don't want to get caught up in controversy. I know a patient of Curruthers, the lead author. Maybe she can ask him and he will be public.

    Ember, if I were able to do that, would you help me with the exact wording of the question you would like to have asked so we can get it clear? Can't promise I will get an answer and can't promise any of them will allow me to publicize their answer. But we can try.

    Oh, and while we don't agree, or actually just guessing as to intent in regards to Fukuda as it doesn't say either way, I do agree that the primary application of the ME-ICC was clinical use. I thought that is what it said, or at least insinuated. I see you found specific wording. Now, I understand that a group at the IACFS/ME came to an agreement as to which criteria they would use for research and which one for clinical. If someone else knows anything about that, please share.

    Thanks for the respectful conversation, Ember. We can disagree but still share thoughts without attributing ulterior motives are maligning each other.

    Tina
     
  3. Ember

    Ember Senior Member

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    How is it that some patients in the US say they've been diagnosed with ME? Does this mean that they have no medical insurance?
     
  4. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Jill, Andrew is talking about in the U.S., not ICD which is used in the rest of the world. As an American, you know full well that ICD-CM, which is used in the US has no code for ME.

    I am getting sick of you posting misinformation and also highjacking threads with extremely repetitive posts. Please end this, it is hurting the forums and ME patients.

    A reminder for everyone that comments to the ICD-CM Committee are due this Friday, Nov 18.
     
  5. Andrew

    Andrew Senior Member

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    I have no idea. If anyone knows an active U.S. insurance code for ME, please post it.
     
  6. rlc

    rlc Senior Member

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    Hi Andrew,

    RE Plan A: We insist on being diagnosed with ME and not have the CFS name put anywhere on or near our illness. This sounds like the cleanest purest solution. But people have been trying this for a long time, and it hasn't worked. There is no increase in ME diagnosis. Wessley has not gone away. People with ME are being diagnosed with CFS on both sides of the pond. And in the U.K., some are even saying ME is a mental disease.

    This is the only solution and the only one that makes any logical medical sense, different medical conditions should have different names and different ICD codes.

    You say that people have been trying this for a long time and it hasnt worked and there are very good reasons, but different reasons why it hasnt worked in the US and the UK.

    In the US because it is a largely private insurance based medical system, doctors have to write a ICD code on the patients claims or it wont be accepted by the insurance companies. The US uses its own different set of ICD codes, which havent had ME in them at all. There was only CFS, so even if a doctor can clearly see that you dont really fit the CFS criteria, they havent had any options they have to give you an ICD code and CFS has been the only one available to them. So in the US all the calls for people to be diagnosed with ME have been a waste of time, because you have to have an ICD code and the only option has been CFS, doctors even if they can totally see that your condition isnt CFS cant give you an ICD code that doesnt exist.

    The point that a lot of people have missed about the original plan to change the US ICD codes, before the coalition got involved is that they were being written to fix this problem once and for all. ME was to be introduced for the first time as a completely separate illness, with its own separate code G.93.3 and CFS had a completely different code in a completely different section (problem solved!!!)

    Which would allow you to go to your doctor and say, look I dont fit the CFS code I was given, please change it to ME, and because ME would be in the new ICD theres no reasonable reason why they wouldnt do that for you, which will then give you all the entitlements that a ICD recognized physical illness gets, and all these ridiculously flawed CFS definitions and all the endless psycho babble would no longer have anything to do with you.

    It would then allow researchers to select ME diagnosed patients and study them. Because all the research that has been done in the US for the last few decades has been labeled CFS, nobody actually knows whats wrong with the patients that have been studied, its just an endless array of mixed cohorts, did the patients have ME? Did they all have depression? Were they a mixed bag of fifty different illnesses? Truth is nobody knows! Its all been a total waste of time and money, and created vast amounts of confusion. You can go through this research and hand pick studies to prove any theory you want. For every study that shows neurological anomalies in CFS patients, theres another one that shows there arent any, Its the same with every theory, one shows immune anomalies another doesnt, one shows it somatic another shows its physical. There all done on mixed cohorts and this has to be stopped and the illnesses separated, the original proposed ICD changes before the coalition got involved would help the cohorts to be separated once and for all and studied separately.

    Another great thing that the originally proposed ICD changes would have lead to is, you cant have a disease with an ICD code and no definition! If ME is in the ICD codes completely separated from CFS, it means none of the CFS definitions apply to it. So they are going to have to adopt one of the three existing ME definitions, Ramsey definition, new Hyde definition or ICC, or get the experts to sit down and write a new even better one. Whichever they chose, there would be no more stupid CFS definitions for ME patients. At present with ME and CFS being misrepresented as the same thing there is no chance of any of the ME definitions being used, because they clearly show that theres two different illnesses and you cant have that if people are saying theres only one illness.

    In the UK the situation is very different they have a split medical system, the majority is public and government run, but people can also if they are prepared to pay for it, use the private insurance company run medical care. In the UK for reasons that defy any logic, they for a long time have decided that people will only get benefits from the government for two years if they have a psychiatric illness. The UK uses the WHO ICD codes which have had ME in them since 1969. However some idiot stuck CFS in the appendix of the WHO codes in the 1990s linking it to the ME code, the Who in its explanations of why CFS is in the appendix have never said its there because they think it is the same as ME in fact they have actually said its just a guess!!! (Very scientific, not) and it seems to have just been put there as an afterthought with no scientific reason for it being there at all, it should be removed and put somewhere else.

    This has allowed the Wessely School who have complete dominance of government policy in ME and CFS in the UK, to say CFS is the same as ME its CFS/ME or ME/CFS then study some of the psychiatric patients in the CFS group and say all CFS/ME patients have a somatic illness and roll out the psychiatric treatments for all patients. When you realize that psychiatric patients only get benefit payments for two years and insurance companies dont pay out for psychiatric patients and most of the Wessely school work for the insurance companies and or the government, you can see the vast financial benefits that they gain from labeling everyone as psychiatric patients, and talk about conflict of interests Yiks!!

    So in the UK you can be diagnosed with ME, but the medical community over there will just say its exactly the same as CFS same code same disease, and they use the flawed Wessely school studies to say its a somatic illness, so its pointless, UK patients are screwed whichever way they turn.

    Like I say the changes that where originally proposed for the US before the coalition got involved, solved all the problems US patients had been suffering, and ME was about to become a standalone diagnosis for the first time ever. Which means plan A could finally be implemented!

    The problem with the coalition proposal is that it stops the two conditions being separated by giving them exactly the same code so your doctor will just leave you with a CFS diagnosis same code same disease why bother with the effort of changing the name, if the codes say its the same disease!

    The Coalition proposal recreates the disastrous situation that exists in the UK, with CFS and ME having the same code, except its worse because they are not putting CFS in the appendix they are putting it in the same place as ME. So there will be no possible doubt that the US ICD codes say that CFS and ME are two different names for the same illness,(same code same disease) US doctors will use the name CFS because they have been doing so for decades and ME will remain an unused diagnosis. They can then either do their own studies on some of the psychiatric patients in the CFS group and say that everybody with CFS or ME has a somatic illness or just simply borrow the work of the Wessely school and declare youre all mentally ill, and then change everyones diagnosis to complex somatic syndrome disorder which will be introduced in the new DSM.

    So basically if US patients want to get away from this CFS garbage and get their diagnoses changed to ME and get proper research done. Dont support the coalition proposal or youre going to be stuck with CFS for decades, and very likely find yourself getting re diagnosed with Complex Somatic Symptom disorder in the near future.

    Re Plan B: Make an association between ME and CFS to get people to start looking at ME more seriously as a better dx for people who were dxed with CFS. Let time pass, and then eventually try to eliminate the CFS term. This is beginning to work. When I see the Norway scientiest talk, they are saying that their treatment just might work on ME. They are talking about weakness in Fukuda. This would not be happening without the efforts of CFS activists who have been using Plan B.

    The problem with this plan is it is out of date, because ME hasnt been in the US ICD there hasnt really been a way to officially separate the conditions. But now that ME will be in the US ICD a new door has opened, its a total game changer! And ME patients can get their proper diagnosis and be researched as a separate group, unfortunately the coalition doesnt want this to happen, and are trying to change the CFS code so that it matches the ME code, which will insure that the problems of the last few decades continue exactly the same. US doctors will keep diagnosing everyone with CFS and instead of separating the conditions it just moves the entire mess to a different section of the ICD, which will help no one.

    Id like to make it very clear to everyone reading that I am in no way a ME advocate, Im an advocate for common sense, different illnesses should have different names, different codes and different research, I want everyone no matter what is wrong with them to get their correct diagnosis and treatment.

    Regarding the Rituximab trials, the problem here is that we dont know what they mean when they are using the name CFS are they ME patients are they CFS patients are they wrongly diagnosed and have a different condition, nobody really knows at the moment. ( I noticed the initial patient that it worked on had lymphoma, according to all the CFS definitions they shouldnt have been diagnosed with CFS because if you find any physical cause for the fatigue you cant have CFS, maybe they are using CFS for ME, who knows) Is the reason it worked for some and not other, because some had ME and some had other diseases, nobody knows yet. Its the problem with using the CFS definitions, there like a drag net that picks up people with all kinds of different illnesses. Which is why the conditions need to be separated, so everyone knows what their talking about. At the moment Rituximab is just great because it showed that a serious physical treatment helped some people. Who and why is a long way away from being answered.

    With the CFI research, same problem, who are they going to be studying, Lipkin is making the right noises about trying not to have mixed cohorts, but then you read that theyre going to use the Reeves definition, which leaves me thinking are you nuts, and they say that their also going to use the CCC,( great use two very different definitions to research the same disease.) And the ICC is written by the principal authors of the CCC, and everybody who knows anything about these kind of things, knows that the authors latests work replaces the older work, the CCC writers in the ICC say that they got it wrong and there is no ME/CFS there is ME and CFS different conditions, So to me it looks like that theyre going to be using a definition that almost everyone is in agreement is far too broad and can only produce mixed cohorts, and a definition that its own writers have abandoned and admitted was wrong, (not a great start)So although I think it is great that the CFI is happening, and that Lipkin is involved, it looks to me that they are in real danger of having mixed cohorts and progress being delayed because of this, well just have to wait and see.

    I think that the tension between some ME and some CFS advocates is understandable and bound to happen while the two conditions are mixed together, ME advocates know that their disease had existed and been studied for 50 years before CFS came along, and know they havent had a single cent of government research money spent on them since 1988, because of the wrongful promotion of the idea that CFS is ME, and people who wrongly believe that they are the same illness, see them as some kind of trouble causers who are stopping a united front to get everyone help. This would all be solved if the original ICD changes are accepted and the two illnesses separated as they should, be because they are different, then each group will be able to campaign to get the government to fund research for the two different conditions. Personally I think it would be nice for the two groups to recognize the difference, but support each other, after all no matter what is wrong with people, this is real people suffering greatly were talking about.

    Going off at a slight tangent, heres a few thought that people might want to think about. If the original proposal to change the ICD codes is accepted, and the changes that the Coalition want are rejected, and ME becomes a separate disease from CFS in the US for the first time. This is going to have massive consequences that the likes of the CDC who have portrayed CFS as the same as ME for decades are not going to like. It will open the flood gates to a large amount of multimillion dollar law suits, because it makes it official that hundreds of thousands of people across the US have been misdiagnosed for decades and denied access to appropriate research and treatment and the likes of the CDC are going to be in the firing line for failing to do anything about an epidemic, and a lot of peoples reputations are going to be in tatters and theyre going to very quickly find themselves out of a job, plus the insurance companies are going to have to fork out billions for the ME patients.

    The coalition proposal will stop this happening, because if they get ME and CFS to have exactly the same ICD code, then nothing will change they have the same code so theyre the same disease, so no law suits or repercussions, and the CDC and CFSAC get off the hook for failing to do anything about an epidemic.

    This leads me to have very strong suspicions that the Coalition is being used, and taken advantage of, why? Because never in the history of medicine has any individual or group, who does not have any medical qualifications been allowed to have any kind of say in how the ICD codes are written!!! The idea that unqualified people should be allowed to have a say in how a disease is coded is quite frankly insane and defies all common sense, so who is letting the coalition have a say in how the ICD codes are written, the CDC and CFSAC the exact same people who have denied the existence of ME for decades, and who are all going to be in the firing line and out of a job, if the original proposal to have ME as a completely separate disease gets excepted, (what a coincidence Not) Personal I think the coalition is being used, so they can say its what the patients want and the CDC and CFSAC comes out looking squeaky clean, and their jobs and billions of dollars get saved.

    Anyway if you want a ME diagnosis support the original proposed changes to the ICD that makes ME a separate diagnosis in the states for the first time ever and keeps it miles away from CFS and oppose the coalition proposal which will guarantee that the status quo is maintained and you will remain with a CFS diagnosis and nobody will get compensation for being misdiagnosed and mistreated.

    I noticed the conversation has turned to the Tahoe outbreak, I have some information on that which you may find very enlightening, but I have run out of energy for today, so I will try and post it tomorrow.

    All the best, Andrew
     
  7. Andrew

    Andrew Senior Member

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    ric, a few thoughts came to mind as I read this.

    I don't believe that Fukuda or Reeves accurately describe the people were 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.

    With regard to the Coalition, it would be helpful if the people who opposed their idea would make clear accurate statements. You are the first person who has done this. I actually tried to research this myself, but I can only do so much. OTOH, in the US I don't think having the two names on the same code guarantees that CFS will prevail over ME. It all depends on consensus, and what happens to shape it. And with this, I'm not saying this setup is right or wrong. Just that I don't agree there is only one path this can lead to.

    Anyway, we both agree that the whole thing is a mess. But you convinced me it is more of a mess than I realized. OTOH, I have to look what is working. I would prefer Plan A to happen, but I see Plan B starting to happen. I should emphasize the word "starting" because it could fizzle.

    Oh, btw, having lymphoma does not rule out CFS according to all CFS definitions.
     
  8. Jill McLaughlin

    Jill McLaughlin *****

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    It would be difficult to respond to this politely.

     
  9. Jill McLaughlin

    Jill McLaughlin *****

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    The US still uses iCD-9. ME is coded as 323.9 under "6. Diseases of the Nervous System and Sense Organs(320-389); Inflammatory Diseases of the Central Nervous System(320-326)."

     
  10. Jill McLaughlin

    Jill McLaughlin *****

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    Hijacking threads? They hijacked an illness via misinformation. There are ICD codes for ME and planned for ICD-10-CM.


     
  11. Ember

    Ember Senior Member

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    Can you share anything about the agreement you mention, Tina?

    Don't underestimate, by the way, the importance of the ME-ICC for research in the eyes of its authors...just because they're focusing first on the clinical assessment. They note that patient sets that include people who do not have the disease lead to biased research findings, inappropriate treatments, and waste scarce research funds.

    They're also explicit in stating the dual purpose of their report: The primary goal of this consensus report is to establish a more selective set of clinical criteria that would identify patients who have neuroimmune exhaustion with a pathological low-threshold of fatigability and symptom flare in response to exertion. This will enable like patients to be diagnosed and enrolled in research studies internationally under a case definition that is acceptable to physicians and researchers around the world.

    I appreciate your offering to get in touch with one of the ICC authors to clarify the relationship that's implied in the consensus report between ME (ICC) and CFS (Fukuda). I've taken advantage of my own opportunities to clarify my understanding of the ME-ICC in conversations with Dr. Carruthers. But in discussions here, I rely on the document itself. If a quote from Dr. Carruthers were needed, I'd first pose a question to him specifically for that purpose. (I might also get his response in writing, ME cognitive impairments being what they are.) Being Canadian, I've tried for the most part to stay out of direct discussion of your ICD-CM proposals, even though I can't agree with the way the Coalition4ME/CFS characterized the ME-ICC in its presentation.

    Thanks for undertaking to ask whether the Coalition will be updating its vision statement (and perhaps its name?). For my part, I'm happy to cooperate in the ways that I can to help clarify the issues we've been discussing here. So much is at stake for us!
     
  12. usedtobeperkytina

    usedtobeperkytina Senior Member

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    I hear that Curruthers will be speaking next week. Good opportunity.

    Tina
     
  13. Jill McLaughlin

    Jill McLaughlin *****

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    Think issues should have been clarified beforehand. If this proposal does go through, ME will not exist as a
    diagnosis so ME definitions will not apply.


     
  14. kurt

    kurt Senior Member

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    MOD - Please show some tolerance. There have been allegation of hijacking, I don't know if that is the case, or what people would rather discuss on this thread. Anyway, there is a solution, if someone would like to start a new thread for discussion of the Coalition proposal, and/or related name items and suggestions of actions we can take, I would be happy to move posts on that topic from this thread to the new thread.
     
  15. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Well, ME isn't in the code at ICD 9 CM 323.9, 323.9 is "unspecified cause of encephalitis, myelitis, and encephalomyelitis." A doctor could use this, but I think it would be difficult to persuade one to do so, I would think.
     
  16. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    To my knowledge, the only time CDC has ever mentioned ME, is in its CME on "CFS" co-authored with CAA. There they say that ME is not 'CFS' because ME occurs in clusters and has neurological signs and symptoms. (incidentally, it also says that CFIDS is an inappropriate term for "CFS" because there are no immune abnormalities in "CFS"- this from the CFIDS Association of America!!)

    I think the best solution is just copying ICD 10 and having "CFS" only in the index, indexed to "ME."
     
  17. rlc

    rlc Senior Member

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    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
     
  18. rlc

    rlc Senior Member

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    Hi justin, to the best of my knowledge that is the first and only time that the CDC has acknowledged ME, and that it is different to CFS, it appeared on their website a few years ago, maybe Reeves leaving means that they have softened their stance a bit, but it does leave them wide open to law suits, when and if someone in the States can actually get a ME diagnosis which they cant at the moment because of the ICD codes, if people who have been sick for a long time can get a ME diagnosis they can then sue the US government and the CDC for doing absolutely nothing to help them and forcing a wrong diagnosis on them.

    The problem with just copying the WHO ICD codes is that the WHO ICD codes have been disastrous in Europe and the UK, although the WHO codes dont actually say that CFS is the same as ME, the tenuous unexplained link to ME that the WHO codes have created by having CFS in the appendix, has allowed the likes of the Wessely school to select CFS patients with psychiatric illnesses study them and then say ME and CFS are the same thing so everyone has a somatic illness and roll out GET and CBT for everyone. The CDC is already promoting GET and CBT for CFS patients, and the insurance companies will be completely behind viewing everyone with ME as psychiatric, because it gets them off the hook for having to pay disability for these people. The WHO codes provide the link that allows the psychiatrist to get at the ME patients, so I think the last thing you US patients need is the same situation being created in the US because the results of having CFS linked to ME in the appendix of the WHO codes has been disastrous in the rest of the world.

    Although the coalition keeps spinning the same line that having CFS in the R codes means that it was going to be coded as a psychiatric illness, it is simply not true, the code proposed for CFS just says that these people are sick and we have no idea why, there is no judgement as to whether it is physical or somatic. Its actually an accurate description of CFS a fatigue illness that nobody has worked out the cause of yet.

    If people dont like CFS being in the R codes thats fine, but whatever you do dont link it with ME in anyway. We dont need to see the last few decades of mistreatment of patients that has happened in the UK repeating itself in the US, any link between ME and CFS allows the psychiatrists in to meddle and guarantees mixed cohorts.

    All the best
     
  19. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    I have not been able to keep up with this thread because for the past three weeks, I have been working as part of a small team, advising the committee of psychologists who are the sponsors of the DSM-5 petition initiative for mental health professionals and mental health organizations (Coalition for DSM-5 Reform).



    I would like Jill McLaughlin to note the following:

    Jill, I am not reading your posts and I will not be responding to any of your posts, either, whether they are addressed to me or to others.


    NCHS ICD-10-CM coding issue

    I have reviewed the Coalition for ME/CFS's submission to NCHS, the NCHS meeting agenda document and post meeting Summary, and also the audio of that section of the meeting. I have reviewed Option 1 (Coalition for ME/CFS) and Option 2 (NCHS).


    This morning I submitted to Donna Pickett before the closing date for submission (November 18) in support of Option 1 (proposed by Coalition for ME/CFS).

    In my submission, I have included the following, paraphrased, points:



    That Option 2 presented by NCHS is problematic for me.

    That I had concerns about the suggested revision of the Title term "G93.3 Postviral fatigue syndrome" to "G93.3 Postviral and other chronic fatigue syndromes".

    That in respect of the suggestion by NCHS that two separate subcodes might be created under G93.3, that if consideration were being given to the creation of separate subcodes or child categories to a parent G93.3 class, then I would prefer to see three discrete sub codes under G93.3, one for each term, in the order:

    G93.31 Postviral fatigue syndrome
    G93.32 Myalgic encephalomyelitis (Benign)
    G93.33 Chronic fatigue syndrome



    That I would be concerned for the potential implications of the inclusion of a "Chronic fatigue syndrome NOS" under "G93.32 Chronic fatigue syndrome".

    That although explanations were given at the NCHS meeting, I did not feel adequate discussion about potential implications took place.


    That I had concerns for the possible implications for class Excludes2 exclusions. (I note that some discussion did take place at the NCHS meeting around whether exclusions should be "Excludes1").

    Given that NCHS Option 2 is problematic for me, and given that no alternatives appear to be under current consideration by NCHS, that I support Option 1, with two caveats.


    a] That any excludes are exclusion class Excludes1, not Excludes2.


    b] That consideration is given by NCHS to having two exclusion terms beneath G93.3

    Excludes1 chronic fatigue unspecified (R53.82)
    neurasthenia (F48.8)



    ------------

    I have viewed the YouTube clip of the reading out to the committee of a new Recommendation for the coding of CFS in ICD-10-CM, which expands on the Recommendation of May 2011, which had been a revision of the CFSAC Recommendation of May 2010. I've also read Mike Munoz's Co-Cure mailing of Friday, November 11, 2011 12:06 AM which sets out the revised Recommendation. I have not read a transcript of that section of the meeting and I don't think the video is available yet (I'll check, today).


    On November 12, I contacted Mary Dimmock to clarify that within international ICD-10

    Neurasthenia is coded to F48.0

    But in ICD-10-CM

    Neurasthenia is coded to F48.8 (it has F48.0 in Mike's Co-Cure).

    The Recommendation was read out as:

    "CFSAC recommends that an "excludes 1" be added to G93.3 for chronic fatigue- R53.82 and neurasthenia - F48.0."


    This will need the Chair's attention.

    Although Neurasthenia is coded within ICD-10-CM under the parent class F48: Other nonpsychotic mental disorders

    its discrete code is F48.8


    F48: Other nonpsychotic mental disorders

    F48.1 Depersonalization-derealization syndrome
    F48.8 Other specified nonpsychotic mental disorders

    Dhat syndrome
    Neurasthenia
    Occupational neurosis, including writer's cramp
    Psychasthenia
    Psychasthenic neurosis
    Psychogenic syncope

    -----------

    I have asked that the Coalition for ME/CFS approach the Chair and Secretariat with a view to F48.0 being replaced with the discrete code F48.8 (they can possibly amend this as a technicality) and I have also offered to contact Dr Snell, myself, if this might help expedite.


    Well done to Nielk and Andrew for your telephone Testimonies.

    Suzy
     
  20. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    I note the video is not available yet on the CFSAC site.

    The notice had stated that:

    We will provide a video recording of the meeting on the CFSAC webpage, http://www.hhs.gov/advcomcfs, which will be posted within one week of the meeting. This recording will be compliant with Section 508 of the Rehabilitation Act and will include captions.

    So we might anticipate its posting today or tomorrow.

    Suzy
     

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