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Now that CFSAC's over, what should we do?

Discussion in 'General ME/CFS News' started by Sasha, Jun 15, 2012.

  1. rlc

    rlc Senior Member

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    Hi Tina RE,

    I think you may not be clear on what this 1a proposal is about

    We are not asking the CDC to start over at all, and this has nothing to do with the CDC coming up with a new criteria.

    It is a small separate proposal that will cost a very small amount and would only take a few months to achieve.

    This proposal is that a small Independent panel of diagnostic experts are set up, (Independent so the CDC does not have total control of it) this only needs to be between 5-10 expert diagnosticians, the CDC could recommend a doctor or two for this panel if they wished.

    The term diagnostic expert is a term that the medical world will understand, it means someone who is not just a doctor, but someone who has spent many extra years training in all the hard to diagnose diseases and has then been given an extra degree as specialist in diagnostics. I know it’s just a TV show, but if you are familiar with the show House, his character is exactly this, a specialist in diagnostics, who because of his training and vast knowledge of other diseases is given all the hard to diagnoses cases. So this proposal is for a panel of real world doctors like that to be set up to write a complete guide of what all the diseases that can cause ME, CFS symptoms are. And to write a easy to understand guide for less well trained doctors to follow which will explain not just what these diseases are but the diagnostic process for investigating these kinds of patients, what tests need doing and in what order, and to explain or provide references to the information that explains how to investigate the hard to diagnoses conditions, because the average doctor is not trained in this and therefore does not know how to do this.

    So the aim is that what will be achieved at the end of this being created is that we end up with something like this which is a differential diagnostic list and the testing procedure to find the cause of Fever of unknown origin http://www.aafp.org/afp/2003/1201/p2223.html except for CFS, ME.

    All other diseases have these kinds of differential and testing guides, but CFS.ME doesn’t, but we urgently need one, because what doctors have to guide them in the US is the CDC list, which would be lucky to rule out 30% of the diseases that can cause these symptoms, which is why there are so many misdiagnosed, and they end up in the research and corrupt the results so we still after 25 years have no idea of what is really going on with CFS, ME.

    As Dr Mirza says

    I have yet to see a diagnostic criteria list for fatigue that is complete. This unfortunately includes the diagnostic criteria for Chronic Fatigue Syndrome issued by CDC. No wonder we keep citing CFS as a cause for fatigue when we ourselves fail to pinpoint the diagnosis.

    So how long would this take, working on the assumption that the proposal is accepted and is done seriously. A list of possible candidates would be made and asked if they would like to be involved, this will take a few weeks.

    They then will read and compare the literature on testing and differential diagnosis lists. Such as the CDCs list the NICE list the IACFS/ME list, the CCC list, Drs Mirzas and Hydes articles, what is in the various medical text books on diseases that cause long term fatiguing conditions etc. because there is very little of this, even if they were still doing their normal jobs they could do this in a week.

    They will then add their own expert knowledge to this information and make their recommendations. Because they can communicate through email and video conferencing, there is no need for them to even meet each other.

    What the expert diagnosticians come up with can then be written into the form of a complete guide which can then be made available to all doctors. We are stating that the likes of Drs Hyde and Mirza and the writers of the IACFS/ME and CCC be at least consulted in this process because they have a vast amount of clinical experience in finding the misdiagnosed amongst CFS. ME patients and this knowledge will be very useful for writing the guide, some of the other experts diagnosticians may not have the same amount of clinical experience with these kinds of patients because they have not focused their careers on investigating CFS, ME patients .

    So that is what we are proposing, it is urgently needed, will cost very little money and can be completed in a matter of months not years.

    You said
    The CDC is already doing 1a. They have seven physicians, including Bateman, Klimas, Peterson, Kogelnick and others coming up with a new criteria. Of course, it will include how to exclude other diseases.

    The CDC has an appalling track record on this, I appreciate that if people are not aware of what kind of testing is really needed to rule out all other diseases is, then it can be hard to see the faults in the CDC list, but believe me it is atrocious! Just compare the IACFS/ME list which is far from complete with the CDC list.

    You mention Bateman, Klimas, Peterson, Kogelnick, now I mean no offence to these doctors I’m just stating a fact, they are normal doctors, they do not have specialist degrees in diagnostics. Therefore they do not have the training or knowledge that will allow them to come up with as complete a list as four expert diagnosticians would. A lot of the conditions that can be misdiagnosed as CFS.ME are rare and hard to diagnose, normal doctors do not get trained in this, so they don’t have the knowledge to write a complete list.

    Drs Hyde and Mirza who have specialist training in finding hard to diagnose diseases, report finding 80-90% misdiagnosis rates amongst their CFS, ME patients. And have frequently let the medical community know this, yet a large number of CFS/ME clinicians who do not have this kind of specialist training have never in their entire careers investigating CFS,ME patients even mentioned it.

    The CDC certainly shouldn’t be left to do this job, and once again no respect to the doctors you mentioned and I have a great respect for their dedication to the patient community, but they do not have the specialist training that is required to do this job in the manner that it needs doing.

    So this proposal is to do something totally different to what the CDC is doing so it won’t affect that at all. All it is, is a plan to get the cream of the crop of expert diagnosticians to write for the first time ever a complete guide to ruling out other diseases that get mistaken for CFS and ME, it will not take long to do and the costs will be minimal.

    This guide can then be made available to doctors to use which will help vast numbers of people get their right diagnosis instead of being wrongly diagnosed as having CFS, this guide can be used by researchers to make sure that people with other diseases don’t end up in the research and stuff up the results!

    RE
    Bob is in the UK and I’m in New Zealand, why should we know about what government agencies in the US can do?? We have said that we don’t know and are waiting for advice on this! However I doubt that your information is completely accurate because there are testing and treatment options that are compulsory such as if a patient shows signs of having cancer and the doctor doesn’t test for it they well be hauled before the medical authorities and have a strong chance of being struck of, so there has to be fixed guidelines somewhere as to what doctors should be doing in certain situations, otherwise no one would have any control over them.

    1b may have to be completely rewritten, nobody has provide bob our I with the correct information, so we cannot proceed with an accurate final version, but the basic jist is the guide will be made available to all doctors and whatever means there are available to request that doctors use it, will be used.

    Even if we can just have it on the CDC website, then a patient can ask a doctor to use it, if they don’t the patient can sack the doctor and get a new one that will, plus it will help researchers who almost never have specialist degrees in diagnostics to make sure that they have pure cohorts.

    RE ‘
    I presume you mean the CDC website, this list is so bad it is basically useless. As is the NICE one and the one on the Stanford site, I’m not even a doctor and I could write a better one in ten minutes.

    RE
    Nothing in life is perfect, but if expert diagnosticians are doing it, then it will be the best that it is possible to be.

    This guide is needed urgently if all other diseases are not ruled out, then nobody has a clue if the patients have ME, or something else, which makes researching the mixed cohorts created by not ruling out all other diseases a complete and absolute waste of time, this is what has happened for the last 25 years which is why all the research is so contradictory. It is for this reason that creating a complete differential and testing guide is the first thing on the list, because nothing else will work without it.

    All the best
  2. rlc

    rlc Senior Member

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    Hi Bob, may I suggest that before we put anything to the vote that we find out if Tina and medfeb actually want us creating a list to take to the CFSAC.

    From some of the comments from them it is apparent that they haven’t been reading what we have written and don’t even know what some of are proposals are because of this. So I think it would be a good idea to find out if they are interested before we invest any more time and energy as they are the ones that will be communicating with the CFSAC.

    If they are interested I think it would be a good idea to find out if there are any proposals on the list they are not interested in taking to the CFSAC so we can just cross them off the list and not waste any more time discussing things they have no intention of doing anyway.

    Thanks for your work bob, take a break and recharge your batteries!!!!

    All the best
  3. Bob

    Bob

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    Thanks for feedback rlc.,
    It was suggested earlier that PR produces a piece of work that supports the letter (by the 16 organisations) that was linked to earlier.
    So one way of moving forwards could be to work in cooperation with those organisations.
    I'm just going to sit back for a while and allow others to air their thoughts.
  4. usedtobeperkytina

    usedtobeperkytina Senior Member

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    I appreciate all you guys are doing. And, Bob has the right idea of a good process for coming to consensus. I didn't know Bob was also in UK. And is Ember in another country? Didn't realize that might mean the major contributors here, except me, Jennie and Mary are not from U.S.

    And I am sorry more aren't participating.

    Ric, the appropriate word is "guidelines" for diagnosis. The issue was the word "compulsory." If there is a protocol put out by any authority so it becomes standard medical practice, then as you say, if a doctor doesn't do it and problems result, they can be brought to account through a medical board, but more likely, through a civil lawsuit. It doesn't have to come from CDC. It can come from a medical professional organization.

    But any doctor uses his own judgment on what tests to do in the U.S. The guidelines help to know what should be tested for. And by the way, in case you guys don't know this, the healthcare system in the U.S. is being changed. One of the complaints is that clinicians run too many tests, running them just to keep from being sued in case it ends up being something major. So they run it just in case instead of because they suspect it. I don't know what measures will now be set up to prevent what is considered "unnecessary" testing, but I think this will influence the success of a diagnostic criteria with more exclusionary tests.

    And, I didn't think about your using diagnostic expert as a specialty. And, I only know what you are talking about because I do watch "House." But, I still can't imagine CDC getting another separate group to do this since they have already chosen a group to do it. And again, it will take time and require money. Things move very slow in the U.S. government. I still say all the steps to do this will take three years from beginning to end.

    The letter of action request was general enough that it got the support of the big group. The problem with getting into specific recommendations you want, you end up with the specificity that means some don't agree. I'm sorry I don't have a solution for you. The sad thing is that if all of this was handled the right way at first, then there wouldn't be this disagreement among patients. All of these problems lay at the feet of the CDC. If in the mid-80s they had recognized that what they saw at Incline Village was the already existing ME.
    Bob likes this.
  5. Ember

    Ember Senior Member

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    If CFS is eradicated, Tina, what will be the consequence for patients who don't meet the CCC or ICC criteria? What about their treatment/insurance/disability needs? If we need a more general definition and a more restrictive definition, don't we already have that with Fukuda and the ICC (and/or the CCC)?

    I'm not competent to describe disease states, but I refer to this comment in Dr. Carruthers' article: “There was special confusion on whether we were talking about CFS or ME, regarding them as mutually exclusive dualistic entities and not complementary parts of a single disease concept.” If CFS and ME are complementary parts of a single disease concept (ME being a subset of CFS), what happens to those patients in the other complementary part, those patients whose fatigue states aren't characterized by PENE (or PEM)?

    (Yes, by the way, I'm Canadian.)
  6. Ember

    Ember Senior Member

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    I'm opposed to various wording that recommends the use of the ICC and CCC provisionally, because I'm pessimistic about the definition that the CDC will produce. As I understand the process, case definitions are usually created by panels of experts in a field, ideally overseen by a professional body. In the case of our illness, there is no professional body to provide that oversight. The Fukuda and Reeves definitions were initiated by the CDC, the CCC was initiated by the Canadian government, and the ICC was initiated by the panel of experts themselves.

    Expert panels bring their own data, gained from clinical experience. In the case of the CCC and ICC, the data was integrated with the experts' knowledge of human systems to result in clusters of symptoms, the clusters being aligned with their presumed physiological underpinnings. Thus in the CCC, we find neurological, autonomic, neuroendocrine, immune (etc.) symptom clusters. The ICC took the same process further, integrating recent research findings to refine its hypotheses concerning the presumed underlying pathophysiology. That process is different from gathering symptoms to produce lists or artificial clusters.

    I'm not as enthusiastic as some about cluster analysis because the outcome is limited by the data. And I'm not enthusiastic about the CDC's deciding in advance what domains it will explore, gathering the data from experts based on those prior decisions, and then overseeing a consensus that will presumably result in another list, one that treats symptoms as separated subjective things and destroys any consideration of their “embodied interactive dynamic context.” We'll get severity scales this time, but we're already awaiting those from the ICC. I'm pessimistic about the new 'CFS' definition and about any new 'ME' definition based on the CDC methodology or based on cluster analysis using their preselected data. (I say that without being a statistician or having a full understanding of the CDC methodology.)

    In the cases of the CCC and ICC, nobody meddled in the process of the expert panel. The CDC seems to be interfering with the work of their expert clinicians from the start. And Dr. Unger contemplates an outcome in which ”everybody needs to have a voice in what the final product is.” I take solace in the fact that the CDC process is moving more slowly than they'd hoped, apparently because the experts aren't promptly providing the data. The longer the process takes, the better established the current ME definitions will become.

    I know that the new definition is in process, but I wonder why patients would offer an advance endorsement.
    Bob likes this.
  7. usedtobeperkytina

    usedtobeperkytina Senior Member

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    There is a diagnostic code for "chronic fatigue." That should be continued and protected. Anyone who has chronic fatigue but does not meet the criteria for CFS or ME could be given that diagnostic code. It's not an illness, it is a symptom. And this is why CFS should be moved from the coding of "chronic fatigue" in the American clinical code book, and instead be the same as it is in the WHO code book because research has shown the pathologies that CFS is a syndrome or disease with brain abnormalities.

    Those with "chronic fatigue syndrome" in the U.S. are diagnosed using Fukuda. Fukuda fails in that it includes some that could have other diseases. It is too broad. It could include someone with depression. The four symptoms out of eight when all the symptoms on the list are common in other ailments makes it ripe for misdiagnosis. In the U.S. what we see more is that people who have CFS are instead given the depression diagnosis. After I got severely sick, one doctor told me I had depression. I said I have a desire to do things. I am out of breath just from walking up my steps. He said it is a different kind of depression. The doctors don't see enough differentiation to correctly classify the patient. Depression has a known treatment. CFS does not. Many clinicians don't see CFS as a separate entity, which was the case with the aforementioned doctor. So, they won't diagnose it. And ME is completely unknown in this country. As Mary said, at the ICD-9-CM committee, no one had diagnosed it. And CDC says 80% of CFS patients have been undiagnosed or misdiagnosed. That statement in itself exposes the failure of the CDC-created criteria for the disease. Doctors will diagnose what they know and can treat. So, since depression is a known with a treatment, many CFS patients erroneously have depression diagnosis. And therefore, they are told to get exercise. Yet, even Fukuda CFS patients should not exercise as most in that group have PEM. So, even if a person does not meet the ICC or CCC, but they do have the multi-system dysfunction, they should not be given the label "CFS" as what they have is more than "chronic fatigue" and because what they have is not depression. The label, then, and also the diagnostic criteria, even for diagnosis, should be improved based on the research in the last two decades.

    Fukuda was designed as a research criteria. And, of course, it is too broad for that.

    So, since Fukuda fails for diagnosis, that is lacks specificity and because it fails as a research criteria, it should go.
    Also, since the term "chronic fatigue syndrome" does not accurately reflect the multi-system dysfunction even in the Fukuda patients, the severity some experience and is commonly misunderstood as psychiatric; then it must go also, even for the patients who don't meet all of CCC or ICC criteria. The ME-ICC suggested that it is all ME but those who don't meet all the criteria but have post-exertional malaise should have almost ME. (I know that isn't the term. You can tell me what they said it should be called.) It is a spectrum. All those who do not have PEM or PENE, but have chronic fatigue should be told they have unexplained chronic fatigue and should be given the diagnostic code for chronic fatigue. This is the way it is in the ICD-10-CM:
    Chronic fatigue, unspecified

    • R53.82 is a billable ICD-10-CM code that can be used to specify a diagnosis.

    A similar problem is being experienced in fibromyalgia. The American College of Rheumatologists recently came out with a new criteria. While controversial and possibly harmful to patients, their goal was to solve multiple problems in the tender point test. One of the problems is that a person comes in and has 11 out of the 18 tender points. However, a month later, they have 8 out of 18. A month later, they have 15 of the 18.

    So, did the person have fibromyalgia, not have it, and then have it again? Of course not. Yet the tender point test as a diagnostic test says if you have 11 out of 18. Also, if someone comes in with 10 out of 18 tender points, does that mean they don't have fibromyalgia and should not have the treatments accordingly?

    No, fibromyalgia is a spectrum. Without a biomarker, it is very difficult and honestly will require judgment of the clinicians. A diagnostic criteria really is just a guide of what is distinguishable in that disease in symptoms, signs or objective tests. But, it is only a guide. Fukuda, as a guide leading to accurate diagnosis and therefore appropriate treatments has failed in the U.S.

    Tina
  8. Ember

    Ember Senior Member

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    We agree on that, Tina, though I'd say that Fukuda has failed worldwide. Like you, I've had my turn at being diagnosed with CFS. I wasn't given proper advice, and I made myself very much worse as a result.

    You may be right in thinking that all those patients who don't have PENE (or PEM) should be said to have chronic fatigue, unspecified because there is no such illness as chronic fatigue syndrome, once you remove the ME subset with PENE. However, those patients who do fall into that category can't be diagnosed with Atypical ME, because that diagnosis requires PENE:
    If we argue that those patients are simply experiencing chronic fatigue, unspecified, aren't we at risk of hanging them out to dry, possibly prematurely? I thought Dr. Klimas was cautioning against that rush to judgement using her AIDS analogy. Those patients still need treatment and support.

    I'm not pretending that I know what CFS (minus ME) really is, and I agree that Fukuda doesn't give us much of a clue. But neither do I know that such a syndrome doesn't exist. I believe that the CDC is going to insist that CFS does exist, and I certainly hope they don't call it ME or ME/CFS. That would be a way to hide us in plain sight all over again.

    I wonder if anyone knows the validity of this rumour:
  9. Bob

    Bob

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    In my experience, some patients have an real fear of losing the 'CFS' diagnosis and being thrown on a really horrible 'CF' scrap heap, with no hope of investment in research or treatments. Legitimate fears like that are why it's so hard to come up with a consensus on a thread like this, when speaking about changes to clinical diagnoses.

    Some patients might have severe fatigue and malaise but without post exertional malaise. Although I consider PEM to be a cardinal symptom of ME (although, I'm not sure if I consider this to be an absolute fact), I expect these patients are particularly fearful about getting a scrapheap 'CF' diagnosis, where they are all accused of being malingerers and of having a psychiatric illness. And I have a lot of sympathy for them. If I was in that situation, I would be fearful about changes to clinical criteria.

    And there's another sticking point with other patients who passionately do not want to see 'CFS' renamed as 'ME', or conflated with 'ME', because they do not want 'ME' turned into what 'CFS' is currently (i.e. a meaningless broad definition including psychiatric patients and chronic fatigue of unknown cause.)

    I'm not expressing my own views here, I'm just pointing out the differences of opinions.
    So I think the issue of names and clinical criteria can't be addressed as a consensus, and that the lead needs to come from patient organisations and the scientists.

    And I personally think that changes to research criteria is a far more pressing issue that changes to clinical criteria.
  10. Bob

    Bob

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    Reading some of the latest posts, I think there's a long way to go before everyone comes to understand each others differences, so I don't think there's much point in me continuing with the list until the differences have been fully explored and discussed. I'm going to take a step back and just watch the discussion for a while. If anyone wants to continue to try to work with the list, I have no objection at all.
    Ember and ukxmrv like this.
  11. Ember

    Ember Senior Member

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    Patient organizations have already taken the position that Tina describes, Bob, and that's why I think that the lead needs to come from the scientists. I think we need to be very clear and careful about what we and the scientists are saying on this issue.
  12. rlc

    rlc Senior Member

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    Hi Tina, But, I still can't imagine CDC getting another separate group to do this since they have already chosen a group to do it.

    My understanding is that the CFSAC charter says that

    The purpose of the CFSAC is to provide advice and recommendations to the Secretary of Health and Human Services (HHS), through the Assistant Secretary for Health, on issues related to chronic fatigue syndrome,CFS). The issues can include factors affecting access and care for persons with CFS; the science and definition of CFS; and broader public health, clinical, research and educational issues related to CFS.

    Its description of duties includes

    2) impact and implications of current and proposed diagnosis and treatment methods for CFS;

    What I’m proposing with the differential and testing guide is covered by this.

    impact and implications of current and proposed diagnosis

    Because it is about getting the diagnosis right

    This to me means that submissions such as asking for an independent group of expert diagnosticians to be set up to do this diagnostic guide, doesn’t have to have anything to do with the CDC, if the HHS thinks it is a good idea they can organize it and the CDC has no power to veto what the HHS wants to do. So I don’t think we need to worry about what the CDC thinks at all.

    From my understanding the only suggestion on are submission that the CDC can veto are the ones where we are asking them to make changes, everything else has nothing to do with them whatsoever. That is my understand from my reading of the CFSAC charter, please inform me if this has changed.

    RE I didn't know Bob was also in UK. And is Ember in another country? Didn't realize that might mean the major contributors here, except me, Jennie and Mary are not from U.S.

    Yes it is very strange where are the Americans? I can only speak for myself but I think the none Americans are trying to help, one based on compassion for all people, but also we are aware that the US is not only the world Military and economic superpower, it is also the world medical super power, if positive changes can be accomplished in the States it will more than likely help people in the rest of the world.

    You asked this question earlier I’ll try and answer it

    Under 2a. are you saying that the new definition must exclude those who test positive for other disease. This is a real problem, if I am understanding it right. I have hypothyroid. It is being treated now and is under control. Does that mean I will not have this disease under the new diagnosis? What about someone I know which high blood pressure and has ME/CFS. If this is not what you are indicating, then you might want to reword. Maybe you can say the definition for research is to be narrow to get a pure cohort. Any research definition so as to include those with other diseases with similar symptoms should be rejected.

    The wording of 2a is not correct and needs changing!!

    I seems to have been changed considerably and I have not noticed as I have been so busy with other things it has been overlooked. But I don’t think it has ever been quite right

    At present it says

    A new definition will be created. The new definition will be based on independently replicated published scientific papers in relation to the physical symptoms, and physiological abnormalities in CFS/ME patients.
    The new definition will exclude patients who test positive for all other diseases, as per item no. 1., using the differential diagnosis list and testing requirements that will have been created when article 1a has been accomplished.


    It should say

    2a. A new definition will be created, that will be based on independently replicated science, this REPLICATED SCIENCE will be based on the patients having had all the testing to rule out all other diseases, using the differential diagnosis list and testing requirements that will have been created when article 1a has been accomplished.
    A review of the medical literature must be done, to compile a list of all physical anomalies that have been found in CFS and ME patients, such as SPECT, PET, MRI scans, NK cells, RNase L, VO2 max, POTs, NMH etc, etc. Tests for anomalies will be performed in a replicated manner on all the patients in all the groups. From this information a new definition will be written, or two definitions, if it found to be two different illnesses. And a new name/names for the illness/illnesses will then be created based on the scientific findings.

    So what is meant by it is, that the aim is to have nobody in the replicated science with an undiagnosed known illness stuffing up the results and we use the new differential and testing guide to do this. Then when the results are in they can create new definition/definitions based on patients who really do have a mystery disease, rather then it being done on mixed cohorts as it has in the past.

    Whenever scientists do studies on other disease, they do everything they can to rule out other diseases, and they don’t let people with co morbid conditions into this research because even something minor can seriously mess with the results.

    So in your case you have ME and a thyroid condition, so they wouldn’t let you be part of the study, but you will benefit greatly from the research.

    So nobody with known diseases in the replication study, but the new definition will allow for comorbid conditions, because all definitions for every disease do. Because having one diseases doesn’t make you immune to all others.

    So sorry I’ve not only been putting a lot of time into this tread but have had a lot of other things to do as well and the wrong wording has been overlooked. How I just wrote is how it was supposed to be in the first place, so sorry for the confusion.

    Hope this clears it up

    All the best
  13. rlc

    rlc Senior Member

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    Hi bob The wording of 2a is completly wrong as I have just pointed out to Tina sorry I should have picked this up before, it dosen't say what it is meant to say at all. Which is why Tina has expressed concerns, the way it is written at the moment implies that nobody with any other medical condition can be diagnosed with the new definition.


    It is supposed to say that nobody with a known condition will be alowed into the replicated study and the new differental guide will be used to insure this, once that done of course the new defiinition will alow for comorbid condition all definitions do.


    Here's how it is meant to be worded


    2a. A new definition will be created, that will be based on independently replicated science, this REPLICATED SCIENCE will be based on the patients having had all the testing to rule out all other diseases, using the differential diagnosis list and testing requirements that will have been created when article 1a has been accomplished.


    A review of the medical literature must be done, to compile a list of all physical anomalies that have been found in CFS and ME patients, such as SPECT, PET, MRI scans, NK cells, RNase L, VO2 max, POTs, NMH etc, etc. Tests for anomalies will be performed in a replicated manner on all the patients in all the groups. From this information a new definition will be written, or two definitions, if it found to be two different illnesses. And a new name/names for the illness/illnesses will then be created based on the scientific findings.


    Sorry for the inconveinance bob , I should have picked this up ages ago.


    All the best
  14. PhoenixDown

    PhoenixDown Senior Member

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    Yes, the friends, family members, co-workers, and doctors of patients.

    I've heard plenty using the term, including patients themselves.

    Plenty of people in this boat have reported not being believed by those close to them, they are the rule not the exception. Never underestimate the power of what people WANT to believe vs the truth, especially when they've been wrong (and down right insulting) about something for many years.

    Not sure about four sub types, but definitely agree a change is long overdue.


    Oh and I'm from the UK.
  15. usedtobeperkytina

    usedtobeperkytina Senior Member

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    Ric, I value the contribution of the UK folks. And honestly, my heart goes out to you guys. While I am hopeful the research will help all patients, including myself, I am especially hopeful it will impact the UK patients. And I do understand that the CDC renamed the disease erroneously, which then set the stage for the UK psychiatrists to redefine it.

    People in the UK want CFS separated from ME, because they believe the CFS label and made up criteria have corrupted the original disease. We agree. In the US, we want CFS absorbed into ME, so that we protect the good research and phase away the awful "CFS" label and diagnostic criteria, replacing it with ME or atypical ME, as the ME-ICC says for those with PENE. The others have chronic fatigue unspecified.

    I think we both want the same end goal of undoing the damage "CFS" and Fukuda has done to our disease in the areas of research, public perception and patients receiving accurate diagnosis and appropriate treatments. Because of the differing histories and current situation, not to mention different healthcare systems, we see two different ways to reach the goal. And, because U.S. CDC has an influence on the rest of the world, we must see them change, for the benefit of all patients all over the world.The question is of strategy of what to do at this point, given the current state, the mess, that the CDC created. In our view, with the lack of any research into ME in our country, which has spread to other researchers, the only hope now, from our perspective is to rename the existing CFS to either ME or something else and improve the criteria. Trying to black out all "CFS" stuff as not applying to the disease will set us back 20 years. We would have to convince the CDC and Congress to fund a whole new and much less prevalent disease.

    We want the CDC-created, made up name and criteria to go away. Incline Village patients and Lyndonville patients had ME. But the CDC came up with a new name and a new criteria. That didn't change the illness. It was always ME. And, some of them got better. But as Bell has said in the last two years and as he just published in a paper that came out today, some of his former patients may not now meet the criteria, but they did not recover to full function. In other words, they are still sick.

    I really think the answer is to have one disease name, with a spectrum and levels of severity. This is the way it is with other diseases. And I think that is why the ME-ICC took this approach. I notice the primer also often gives special recommendations for those "severely ill." There is a precedence. We spoke about MS before. There is a term called "atypical MS." This is someone who shows signs of MS, but doesn't meet the diagnostic criteria. Maybe their MRIs don't show the lesions at the time of the test, but they have the eye problems, headaches and motor control problems. They may later develop more symptoms and a later test may show the MRI problems.

    Ember, I think we agree that the PEM or PENE is really the hallmark of the disease. For my sister, I listened to the NIH SOK workshop from April 2011. Particularly, I was looking for Kathy Light's explanation of her study. She used Fukuda. Yet, she was able to objectively show PENE. And it was extreme. The only special consideration of those pateints was that some who had depression and were under treatment were allowed to be in the study. But it wasn't all of the CFS cohort. So, she also included a few depression people under treatment in the "healthy" controls. She also looked at fibromyalgia and MS. She could use just four of the proteins / enzymes to develop a reliable diagnostic test for CFS. Thankfully, she got another NIh grant.

    I also noticed some of Nancy's and Mary Ann's and Broderick's research is including exercise challenge. And they are seeing differences in CFS from GWI and from healthy controls. Also, Staci at the Pacific Lab is looking at post-exertional differences in heart rate and oxygen absorption.

    I think within the next five years, we will have a biomarker, based on the PEM / PENE. And, I think the CDC knows Fukuda is not working, which is why they are spending money on the CASA project (seven clinicians coming up with new criteria). Based on previous comments from Unger, expect the six-month wait for diagnosis to be dropped. I also expect they will include PENE as it is not only clinically seen, but is coming to be a hallmark supported by biological evidence in multiple types of research.

    I hope we end up with one disease (either ME or under another name) with the biomarker or PENE hallmark symptoms and a severity scale. This would be good for clinical use. And if the person doesn't meet the new criteria completely, whatever it be, they can have "atypical whatever." That's the way it is in MS. And I think that is a great model. Of course, for research, even for MS, they separate which patients to include in research. And it is the ones that are strongest in evidence of having the disease. They don't have different names for the differing types or severities of MS. It's all MS, but with different types. Cancer has stages. Hepatitis has letters telling the type. Diabetes has types. ME (or whatever) could be the same.

    One other reason we need a severity scale is, as was mentioned in PANDORA's written CFSAC testimony and Marly's presentation about PANDORA, Social Security in the U.S. is putting some illnesses on fast track of getting disability benefits. And it is based on diagnosis of a severe disease or a severe level of the disease with objective tests only. This reduces the time for these patients from years to possibly a couple of months to getting benefits. Since our disease has levels of severity, those who are bedbound, especially, should also be on the fast track for disability, mostly so they can quickly get on Medicare and have health care. If we had "I have ME level 8" as a diagnosis, then we could get Social Security to add "ME level 8" to the illnesses that are fast tracked for disability benefits. This would be a huge benefit for those who are severely ill.

    chronic fatigue unspecified- fatigue without neuro-endocrine-immune symptoms and without PENE (PEM)
    atypical ME (or new name)- PENE (PEM) with continuous or fluctuating NEI symptoms and abnormal biological tests, but not all that meets ME-ICC (or CCC) or whatever new one is created.
    ME level 1, 2, 3, 4 or 5 based on level of severity.

    Another option is to subgroup by what biological abnormal tests the patients have (e.g. reactivated EBV or other herpes viruses, or low cortisol, or OI or whatever) in addition to levels. But that would be good for research alone. Just like breast cancer has stages, but it also has levels of replication and whether the cancer is estrogen sensitive, or the genetic kind, etc. There are stages and then other particulars about each person's cancer.

    Ric, I understand now you are suggesting another group be created separate from CDC, but under DHHS direction. This seems to be what the CFSAC was discussing. While I doubt that will happen because it is two efforts in government agencies doing the same thing. But, if you guys want to suggest a start-from scratch new effort without CDC, then it may have some credibility as the CFSAC already were discussing it. Personally, I would rather see recommendations that make sure the CDC CASA project is best it can be.

    Bob, I suspect those with NEI symptoms in addition to severe fatigue have PEM / PENE. It is really difficult to detect because it can come as much as 48 hours after exertion. And they may be so fatigued that they can't exert. If they have fatigue but don't have PEM, they may have fibromyalgia, as Bateman explains the Light study to show. But, I suspect someone with NEI symptoms and severe chronic fatigue have undetected PEM / PENE. Or they could have depression. The Light study, if it turns into a biomarker, we will be able to objectively see it. How available will such tests be? Especially since exercise is part of the test?

    Tina

    Tina
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  16. Ember

    Ember Senior Member

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    I appreciate your wanting one disease name with a spectrum and levels of severity, Tina. But you add, “And I think that is why the ME-ICC took this approach.”​

    The ME-ICC didn't take this approach though. It didn't absorb CFS into ME. Instead, it separated ME from CFS. Dr. Carruthers writes, "While it has always been essential, it has now also become urgent to segregate the subset that we are calling ME more clearly, using the ME International Consensus Criteria...." And he adds, "The results of Jason et al’s studies have confirmed that the Canadian Definition of ME/CFS had clearly separated cases who have ME...from those who have CFS...."​

    You write too that you expect that the CDC “will include PENE as it is not only clinically seen, but is coming to be a hallmark supported by biological evidence in multiple types of research.” Fukuda already includes PEM. By contrast, the ICC (and the CCC) requires PENE (or PEM) as the likely distinguishing characteristic of the ME subset.​

    Again, I'm worried that our organizations are taking positions that are inconsistent with the scientists. This rumour is troubling: “In an effort to keep the ME category as broad as possible the IACFSME group wrote the definition of PENE to be somewhat open and a little vague in hopes of being able to catch more patients into the ME definition.” The rumour seems consistent with Lenny Jason's recent statement:​
    In the ICC (and CCC), PENE (or PEM) isn't defined simply as the prolonged restoration of muscle power following exertion. The ICC defines PENE as having prominent symptoms primarily in the neuroimmune regions. The rumour also seems consistent with the IACFS/ME's recent announcement of a new journal, Fatigue, Biomedicine, Health and Behavior.​

    We need subsets. And absorbing more of CFS into ME or merging the two runs counter to the science.​


  17. rlc

    rlc Senior Member

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    Hi Bob, I’d like to make a suggestion.

    I think because it hasn’t been realized that many of the people who are heavily involved in this tread are not US citizens and do not know the ins and out of the US medical system, We have a situation where the none US people have been making suggestions on wording that because the US system is so different won’t work in the US system, the US people have probably been thinking why are US citizens making suggestions that will never work in the US system and were wondering why the US patients aren’t helping with wording the suggestions according to the US system. So I think we have had are wires crossed a bit, and a lot of the wordings are a bit messy and won’t work because of this.

    So I’d like to suggest that to start with we slow down and we say that for the next month we do nothing else but work on getting the suggestions that we have come up with worded right for the US system, that no new suggestions are made until this is done, people who want to make new suggestions will have a month to organize these and work on the wording, then when we have fixed the suggestions we have now, then in a month or so time we can say right has anyone got any new suggestions, and we can work on these if there are any and finish this process.

    My feeling is that we need to slow down, just stick to what we have now, and fix the confusion around working things for the US system. We have a lot of good ideas that can if we take the time be made into something very usable that could help a lot of people, but the way we are going is too fast, we have confusion about what the US medical system will allow, and we need to just for a while work on what we have already got. If we say we will do nothing else but fix the existing list for the next month it means if people are getting tired they can just say I’m too tired be back in five days or so. If we need more than a month we can just allow more time.

    Let me know what you think

    All the best
  18. Ember

    Ember Senior Member

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    I'd only add, rlc, that US experts were well-represented on the ICC and CCC, and both were consensus documents.
    I'm still exploring the implications of my own wording though, so I'm only too happy to slow down.
  19. Bob

    Bob

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    Hi rlc, my seemingly over-ambitious and over-optimistic vision for this project was that we would be able to quickly come up with a few simple suggestions, over a few days, that we could all agree on. I knew from experience that there would be insurmountable disagreements and strong differences of opinion, but I thought that there was a chance that my suggested 'consensus' model might work, and that we would be able to just quickly vote in and out a quick list of items. My aim was to come up with a very short list of simple items that we could put our names to, so that we could support the advocacy that the other organisations are doing with CFSAC, and also give voice to some of our needs without putting in an immense amount of work. I didn't expect that it would be quite so complex, and I didn't want to create a complex list because I thought that would be duplicating work already done elsewhere. I just thought a quick list to support other organisations' advocacy work would be a nice idea, and a simple project. I didn't intend to get involved at all originally, and only spontaneously decided to collate the suggestions, after it was suggested that we do that, and no one else appeared to be doing it. I also didn't want to get involved in a drawn-out process, for this particular project. Clearly what I had in mind didn't suit other people's needs, and my intended outcome didn't come to fruition. I think that there are too many differences that need to be understood, and that's only with the few people involved in this thread. The wider forum has thousands of members, all with different opinions. From the experience that I just went through in this process, and past experiences, I don't think that this was a workable model on the open forum, and I think a small working group would be a more productive way of doing this. I don't want to be negative, or defeatist, but that's my opinion based on my experiences. Trying to coordinate this process was too intensive, too difficult, and too confusing, for anyone to take it forwards successfully in this way. If anyone wants to take that list, and work with it, then that's wonderful, and best of luck. But I won't be taking it forward now. I can see us endlessly disagreeing over small details of nomenclature that people legitimately consider to have huge consequences for us all. So maybe a good use of this thread would be to explore our differences, and come to understand all of our differing opinions. I think we've already successfully done that to a certain extent, so I think this project was very productive and successful from that point of view, and I'm really pleased about that. Whenever we all have a chance to get to understand each other better, and to gain deeper insight into each others' perspectives, needs, knowledge and opinions, I think we should always take that chance. It's been really great working with everyone, and I always really appreciate and respect the amazing range of knowledge and insight on this forum.
    If anyone can ultimately create a list, by whatever process, then I'd be really happy to see that.
    I'll keep following the thread, and join in the discussion.
    Bob
  20. Lynne B

    Lynne B Senior Member

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    sydney, australia
    Hi, all contributors to this thread, I want to thank you for all the work you've put in here. I haven't contributed because I have no scientific knowledge to speak of. However, I've learned a lot about our dread disease from simply following the discussion here and on other threads. I can understand the effort this work has cost you and I hope you all do manage to help develop better definitions in future. Cheers! Lynne B (from Australia)
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