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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. Andrew

    Andrew Senior Member

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    Good point. I reviewed and responded to the last version they proposed. I hope they don't go ahead with it. Because it can be equally applied to ME. It can be applied to MS. It can applied to Lupus.
  2. Jill McLaughlin

    Jill McLaughlin *****

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    Either way, CFS fits nicely. If this proposal goes through, ME will go along with it.

  3. Andrew

    Andrew Senior Member

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    I think ME is under more danger from Complex Somatic Symptom Disorder. It is the psychiatrists from England who pushed to have it apply to any illness. In England they already have a strangle hold on CFS. This will give them a chance to do it with ME as well -- something they have been trying to do. In the United States, I sought opinions from several psychiatrists, and not one thought CFS is a mental disorder.

    I think people need to be aware of the real danger of CSSD. It is a very serious issue that should not be misrepresented just to win points in other political causes. But it's still possible our letters thwarted this. I hope so.
  4. Ember

    Ember Senior Member

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    I'm sure you believe what you've written, Andrew, but I don't believe it's accurate to say that the ICC "updates and replaces" the CCC.

    The CCC and the ICC are both reports on agreements (a consensus being an agreement). Technically no one can update an agreement without involving the parties to it. The ICC didn't reconvene the parties to the CCC. (Only five of the authors served on both panels.) So technically, the ICC can't update the CCC.

    Saying that one document updates another also suggests a continuity between the two documents. The degree of continuity is an opinion, and I look to the authors to provide guidance here. Their opinions are generally considered more authoritative than those of the rest of us (authoritative coming, after all, from the word author).

    Anything I've heard or read from the authors of the ICC describes a significant change to have occurred in the transition from the CCC to ICC, one that doesn't fit the characterization of updating. I've suggested on another thread that the ICC evolved out of the CCC. (Evolution can result in significant changes.) I was looking to characterize the relationship between the two documents as I believe the authors would when I asked you whether Marj van de Sande has referred to the ICC an update of the CCC. Marj, by the way, has more authority in these matters than you suggest. Not just an activist who played a pivotal role in bringing about the Canadian Consensus and International Consensus, she is rather the co-editor for both documents.

    Both the CCC and the ICC are obviously publications within the public domain. Technically, one publication can't replace another one there. They exist simultaneously. Those using one can replace it with another for their own purposes. The Coalition4ME/CFS, for example, could replace the CCC with the ICC in its vision statement. But technically, the ICC can't, of its own accord, replace the CCC.

    Saying that one document replaces another also suggests a discontinuity between the two documents. It might even suggest a retraction. But if the authors themselves neither repudiate nor retract, I would respect their authority there as well.

    Some of us have debated how much continuity or discontinuity exists among ME, ME/CFS, and CFS. In characterizing the documents that provide these definitions, we also draw on their authority to support our claims. The Coalition4ME/CFS characterized the ICC as supporting its reclassification proposal. Was that characterization sound? Discussing the issues here seems to me to require a respect for the truth and for others, an assumption (even when we disagree) that others do attempt to inform the opinions that they state and to state the opinions that they have formed. Isn't he said, she said what we do when we discuss?
  5. Andrew

    Andrew Senior Member

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    Many things get updated without all the original people being there. It happens all the time.
  6. Andrew

    Andrew Senior Member

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    I just reread some history of the CCC and ICC, and now I realize I overstated something before. Not everyone on the committee saw the combining of ME and CFS in the name as temporary and transitional. And of those who did, it might not have been their primary motivation. So in this one part of what I said, I think I was wrong.
  7. Andrew

    Andrew Senior Member

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    Funny thing, when I started being more active in the this discussion I was not thinking about the Coalition proposal. I just saw things being said that I disagreed with. But in the process I learned more about the proposal, and now I urge everyone to support it. The bottom line for me is what is actually working.

    Look at the history of ME. The term has been around longer than CFS, but it has generated less research, fewer patient groups, and less private funding. When I search Google Scholar I don't find treatments for ME. I only find them for ME/CFS or CFS. When I bought the DVD of the most recent ME conference, most of the speakers there were CFS doctors and scientists. When I read websites by ME experts, much of what they refer to is CFS research. Given this, it would be self-defeating to insist that this be ignored. In the real world, the real experts see the connection. They don't see them as two distinct illnesses. And they don't see one as a subset.

    On the other hand, we all know that the CFS name is a problem. It is dismissive. It is attached to a description that isn't even accurate. And I think we all know the problems well enough that I don't need to elaborate.

    Simply insisting on the ME name has not worked in the past. It is a nice sounding idea, but it has never worked. ME research is actually further behind than research under the CFS banner. And claiming CFS is a different illness from ME disconnects all the good CFS studies from ME. It throws the baby out with the bathwater.

    So it's best to put them under the same code, get them associated, and encourage the adoption of ICC-ME. Because if the codes are combined and the ICC-ME gets adopted, that will fix both sides of the problem.
    usedtobeperkytina, Dolphin and Nielk like this.
  8. Ember

    Ember Senior Member

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    Please give your sources, Andrew, or just state your opinions without attributing them to the real experts. I think we can agree that it is a very serious issue that should not be misrepresented.

    ME can be seen as a subset of CFS in the same way that a migraine can be seen as a subset of the headache. As the ICC points out, research using the CCC has already demonstrated this to be true: Some symptoms of the Fukuda criteria overlap with depression whereas the Canadian Consensus Criteria differentiate ME patients from those who are depressed and identify patients who are more physically debilitated and have greater physical and cognitive functional impairments.
  9. Nielk

    Nielk

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    Andrew wrote:

    I technically agree with you Andrew. I think (my own opinion) that it will take a few steps to be able to realistically adopt the name ME.
    The problem is that the ICC clearly states in the beginning that the name Chronic Fatigue Syndrome is inadequate with new infromation available today and that it should be dropped in lieu of Myalgic Encephalomyelitis. They don't seem to mention ME/CFS as an option. To my understanding, their definition encompasses all the patients woth CFS. The ones who don't fit the full definition, will be accepted under the atypical ME definition. They really are very strong in their language that the name CFS should not exist any longer.

    Realistically, it's not an easy feat to achieve and I understand what you are saying that most of the studies have been done using CFS as the current name and that ME never accomplished much but, I think that in the ICC, they define ME very clearly, especially with the addition of PENE.

    ME/CFS is definitely an easier name change accomplishment at this time and like you said if they are coded the same, in the future ME/CFS could just become ME.

    As much as we hate the name CFS, the most important objective right now is to find real biomarkers. There are a lot of scientist involved now here in the US and abroad
    working on this. I am hopeful that it will result in positive outcomes for all of us.
  10. Andrew

    Andrew Senior Member

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    According to the ICC

  11. Ember

    Ember Senior Member

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    If your reading were accurate, Nielk, this statement from the ICC wouldn't make sense: Individuals meeting the International Consensus Criteria have myalgic encephalomyelitis and should be removed from the Reeves empirical criteria and the National Institute for Clinical Excellence (NICE) criteria for chronic fatigue syndrome.

    The ICC hasn't demolished definitions of chronic fatigue syndrome.
  12. Ember

    Ember Senior Member

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    I attended a talk given today by Dr. Carruthers, co-editor of the ICC. He described, from his perspective, the shift from CFS-Fukuda to ME/CFS-CCC and then beyond to ME-ICC. In response to questions, he characterized ME as a form of CFS.
  13. Andrew

    Andrew Senior Member

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    Could you give me a link to a movie or a transcript?
  14. Nielk

    Nielk

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    Hi Ember,

    I could swear that when I read the first draft of the ICC, it stated that the name Chronic Fatigue Syndrome be dropped completely but, when I go to search now, I don't see it.
    It might be that they dropped it in their revision or that I'm going crazy. Each one is equally possibele:)
  15. usedtobeperkytina

    usedtobeperkytina Senior Member

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    It just hit me. Wasn't going to comment, but it just slapped me across the face. I don't know the nationality of all who have been posting here. So, this may not apply in some other countries. But in the US, our doctors have a lot of latitude in treatment. However, if you have health insurance, that company will decide what tests and what treatment is paid for. This started with Medicare, which decides what is covered and what isn't. Then insurance companies followed the same method.

    Now, let's take the drug Rituximab. Can I get Rituximab now for CFS? Maybe, if I can afford it and get doctor willing to give it to me. But, can I get my insurance company to pay for Rituximab to treat my CFS? No. They will want proof besides the n=30 study before they will pay for it. In fact, all drugs considered "experimental" are not covered by health insurance companies in the U.S.

    I felt this first hand about a year ago. I had two doctors recommend Xyrem. My standard sleep medicine was losing effectiveness, so I asked about it. My sleep doctor said that the FDA had approved the drug for narcolepsy, and although a study showed it would have some effectiveness in fibromyalgia (which I also have) the insurance company would not pay for it as a drug for fibromyalgia because the FDA had not approved it for treating fibromyalgia. However, he did say the NIH might pay for it as an orphan drug for fibromyalgia. He didn't expect they would. Well, they did. Point being, this was rare and was because of particular situation with that illness and that drug. But, as a rule, health insurance companies will not pay for treatments not approved by FDA.

    Ok, let's say a bigger study is done on Rituximab and CFS patients. And lo and behold, the new treatment protocol they have makes 80% of CFS patients better. Application is made to FDA for approval. Three years later, we have a drug to treat CFS.

    But wait, will the insurance company cover me if I have ME? Well, that depends, is it a different illness? Does it have a different diagnostic code? If it does, then the insurance company will clearly see that the FDA has not approved Rituximab for treating ME, which is a different diagnosis as shown by the different code.

    Even if we say, "yeah, but there were ME patients in that CFS group." Yes, there likely was if you are saying those people met one of the ME diagnostic criterion. But insurance companies will not see it that way. They will see a different code and thus a different illness. Before they will approve paying for the drug for those with the different ME code, then they will want to see the FDA approve the drug for ME patients, which will require a large-scale study with Rituximab on ME patients. In fact, it will be like fibromyalgia and CFS. There are people who meet Fukuda who also have fibromyalgia. Would that mean Rituximab is effective against fibromyaglia? Well, if it is a different code, then insurance will require a study and FDA approval before someone with diagnosis of fibromyalgia and not CFS can have the drug paid for.

    I see now, as Andrew said, that whether we like it or not, the research is and will continue to be done for a while with "CFS" patients and with "Fukuda" criteria. Until the scientists come to a consensus so that ME-ICC or CCC or one the CDC is working on now is used in research or the ME term and code is tied to patients in the research into this disease, then the progress is being made under CFS and Fukuda. I don't like it. I want it to change. And I don't understand all the reasons why CCC never caught on and Fukuda is still the most popular internationally for research.

    But, I don't want to be moved into an illness that has practically no research in the last twenty years, as Andrew said. Ok, so I get an ME diagnosis with a G93.3 code in the U.S. and the CFS patients are in another code. There I am, I have the ME label and the code. But I don't have any treatments or any research that shows the pathophysiology. All that understanding and progress is made in CFS patients, not ME patients.

    This occurred to me while I was listening to the CFSAC meeting. The science is now moving into clinical trials. But what patient population will they be trying these drugs / therapies on? In the US, it will not be ME patients because hardly anyone has an ME diagnosis. Enlander does, but he is the only one I know of. And he does because he is from Europe. And, it looks like other countries will do clinical trials on CFS patients with Fukuda criteria. Again, I don't like it. But I certainly want to benefit and have my insurance cover the treatments.

    Tina
  16. Ember

    Ember Senior Member

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    Your analogy isn't the best one, Tina, because fibromyalgia isn't taken to be a form of CFS. People who meet Fukuda can have any number of other diseases, including cancer, as we know.

    Could a drug approved for headaches be prescribed for migraine in the US? Does it depend on the code? (As a Canadian, I'm just asking.)
  17. usedtobeperkytina

    usedtobeperkytina Senior Member

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    yes

    In the ICD-10-CM, headache is under R51. It is under the pain codes.

    In ICD-10-CM, migraine is listed under episodic and paroxysmal disorders. It is in with epilepsy, other headache syndromes, transient cerebral ischemic attacks, vascular syndromes of brain and sleep disorders.

    I don't know the answer to your specific question. But, I would think that pain medicine can be used to treat anytime someone has pain, no matter their disease. So I don't think it is the same analogy.

    For if Rituximab is approved for CFS, it is not lessening a symptom, say fatigue, no matter what disease the person has. You wouldn't use Rituximab for COPD, for example. If it is proven effective for CFS, it is treating the underlying mechanism of that particular disease. Whereas pain meds would work for headaches, migraines or any pain symptom no matter the disease. I would think that is the way an insurance company would look at paying it. But, I don't have firsthand knowledge of this.

    Maybe the better analogy would be the breakdown ICD-10-CM of migraines. Under migraine, G43, there are many different types with different subcodes. There is G43.001 with status migrainosus, G43.009 without status migrainosus, G43.01 Migraine without aura, intractable, and it goes on and on. http://www.icd10data.com/ICD10CM/Codes/G00-G99/G40-G47/G43-

    I would think that if a doc gives you one of these codes, then any medicine that treats migraines would be approved by insurance no matter which of the many migraine codes you are given.

    So to follow that pattern and in line with your premise of ME is a subset of CFS, we would have to have chronic fatigue syndrome as the main heading for the disease. And then we would have post viral fatigue syndrome and myalgic encephalomyelitis as subcodes as types of chronic fatigue syndromes.

    This would brand CFS even stronger and label ME patients as having a form of CFS. That would minimize ME as just a subgroup of the main disease, CFS. The coalition's proposal would minimize CFS as a label.

    I guess your idea would work for the drug therapy question, but it would reverse the emphasis as it appears in the WHO ICD, and the Canadian CM, well, all the others, actually. I guess it might work for the research problems too. That way, all CFS research would apply to ME patients, unless the study said they took out those who meet an ME criteria.

    But do we really want to encourage CFS as the main term of ME?

    Tina
  18. Nielk

    Nielk

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    Hi Tina,

    I live in the U.S. and understand completely what you are saying. I too, was put on Xyrem at one point which is an orphan pharmacy medication. I think that at the time, tehy were studying it for Fibromyalgia patients. I had no problems having my private insurance company pay for it but, I remember that I many couldn't get it and it was very expensive.

    The way I understand from reading your post, by fighting so hard for a name change to ME, we might be hurting ourselves in the process. Yes, we'll have the satisfaction that
    we can use that name to describe our diagnosis but, if all studies are based on CFS, we will not get medications or tests approved with an ME diagnosis.

    That's why I think that at this time the name ME/CFS makes more sense.

    I think the big question going forward is what cohrt of patients will the new studies use? I think the ICC-ME was authored specifically for clinicians and studies.

    How all this will play out is not so clear. Like you said, there are not enough people in the US with an ME diagnosis, so they will have to use CFS at this point, but which definition will they use?
  19. Andrew

    Andrew Senior Member

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    I see a serious problem with what some are proposing. They say CFS has nothing to do with ME, but then say ME us a subset of CFS. If it's a subset, that means the superset is correct. Yet the ICC specifically says the CFS defintion is incorrect, given the current state of research. So it's a contradictory message, that is impossible to implement. Putting ME in a subset position under CFS actually works agaist it. It means that ME is an illness that can be conceptualized as a fatigue illness, by virtue of being in that category. This is in conflict with the ICC warning that the fatigue should not be a guiding concept.
    Nielk likes this.
  20. Ember

    Ember Senior Member

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    I don't think its being taken as a form of CFS necessarily minimizes ME, Tina. The fact that a migraine is a form of headache doesn't minimize migraine. It's known to be much more severe than your average headache.

    It wouldn't necessarily follow that all CFS research would apply to ME patients. Take pneumonia for example. Having had mycoplasma pneumonia myself, I know it's treated differently from other forms of pneumonia.

    If a study could show that GET helps CFS-Fukuda (Fukuda doesn't require PEM), that wouldn't mean GET could also be used safely for ME, a form of CFS characterized by PENE. It seems to me that if studies carry on using CFS-Fukuda, they should show what percentage of their CFS patients have ME, and ideally they should separate out the ME patients in reporting their findings.

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