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Lessons from ME/CFS: Finding Meaning in the Suffering
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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. Sasha

    Sasha Fine, thank you

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    No news about what happened at yesterday's meeting? Did anyone listen on the phoneline and could maybe give just a few sentences?

    Or maybe Cort will report.
  2. Nielk

    Nielk

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    Hi Sasha,

    There was no meeting yesterday.
    The meeting took place Tuesday and Wednesday.

    Here is a video of their final recommendation:
    [video=youtube_share;v-KS2jJM98Y]http://youtu.be/v-KS2jJM98Y[/video]
  3. Dolphin

    Dolphin Senior Member

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  4. Nielk

    Nielk

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    Jill said:


    I understand what you are saying but, what are you doing on a forum that clearly states next to it's name ME/CFS?????

    You think that us in the US have a choice? You show me one patient in the US who is happy with the name Chronic Fatigue Syndrome.
    We have been cursed with this name and have been begging for a change. You make it sound as if it's us, the patients who are holding on to this name and are abusing you and others who are REALLY sick with M.E.

    I am very sorry for you that your daughter is sick. I wish I can take it away and make her better. I believe you when you say that she is very ill. Do you believe me when I say that my life has become worthless because of this illness? Do you believe me if I tell you that I'm in constant pain, I feel like my head is going to burst and that I am serving a life sentence in my body? Except that people in jail serving a life sentence are better off. They get food and board, free medical care and they make friends there. So, if you would put the "name" aside for a minute, how am I different than another patient who happens to live in another part of the world with the same symptoms but, in that country, they name it differently?

    If you really took the time to read my testimony which I have posted on this thread, you would realize that I have begged them for a name change. I have asked for it to be properly coded. I worked on this testimony for 5 weeks. Writing and rewriting it. I am not a public speaker and this did not come easily to me or naturally. It caused me a lot of stress. I did it because I felt that there is such a need to bring awareness to this issue. Then , you come on here and put everything down that I said. It is the easiest thing; to be critical but, you are fighting with the wrong person. If you really want to be heard you should write to the people in politics who have a power to do something about it.

    I know what it's like to have a sick child. I had a sick terminally ill child. You would do anything to make them better but, what you are doing is counterproductive. It is not making your child better.

    To make things clear, I was diagnosed with M.E. by doctor Enlander 9 years ago. Him being from Ireland is used to using that term. What did it do for me? Nothing. I am sicker than ever.

    You clearly state that you don't want to be part of CFS or ME/CFS. Fine. Then, you don't belong on this forum. But, never say that your UK ME patients are sicker then the US CFS patients!! That is being ignorant, rude and demeaning.


    - author unknown
  5. Jill McLaughlin

    Jill McLaughlin *****

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    Hi Kurt,

    Etiology is not the issue. IF etiology is known there would be a dx test and case defs would not matter.

    ME is fairly well defined. Fatigue is not even a defining feature of ME.
    "M. E. has a clearly defined disease process while CFS by definition has always been a syndrome." Dr. Byron Hyde

    A group of patients/lay people is one thing, but the CFSAC has no excuse.
    Anyone who knows about ME recognizes the significance of the differences. CFSAC should be knowledgeable of scientific and taxonomic principles.

    CDC states:
    http://www.cdc.gov/cfs/education/wb3151/chapter1-1.html
    "The name myalgic encephalomyelitis (ME) was coined in the 1950s to clarify well-documented outbreaks of disease; however, ME is accompanied by neurologic and muscular signs and has a case definition distinct from that of CFS."

    "Where the one essential characteristic of M.E. is acquired CNS [central nervous system] dysfunction, that of CFS is primarily chronic fatigue." - Dr. Byron Hyde
    [http://www.nightingale.ca/documents/Nightingale_ME_Definition_en.pdf]

    All neuroimmune diseases can cause disabling levels of fatigue, but no neuroimmune disease can be diagnosed using fatigue and a few minor/optional symptoms as the sole diagnostic benchmarks.

    The ME/CFS Canadian Case Definition (CCC) actually combined features of both CFS and ME to form a hybrid definition. According to Dr. Byron Hyde, "the more recent Canadian definition (CCC) talks of ME/CFS as though they were the same illness. They are not." So I agree with Dr. Hyde that they do have different illnesses that have been combined into one case def.

    This committee actually talks about reverse translational medicine but ignores the main application of it, even though the Coalition 4 ME/CFS got it wrong:

    The NCHS summary report stated: "One commenter, representing Coalition 4 ME/CFS, indicated that ME and CFS should not be separated since it goes against the definition of the 2011 ME ICC (an international committee). Her opinion was that treatment is the same for both conditions, literature refers to ME and CFS together, and that the U.S. is behind the international recognition of these two conditions being the same."
    [ICD-9-CM Coordination and Maintenance Committee Meeting Summary of Volumes 1 and 2, Diagnosis Presentations September 14, 2011, http://www.cdc.gov/nchs/data/icd9/2011SeptemberSummary.pdf]

    The rest is dubious, but treatment is definitely not the same for both conditions. That a representative of this Coalition 4 ME/CFS would say that treatment for both is the same demonstrates a lack of knowledge or understanding of key issues.

    Studies have shown exercise to be helpful for patients with CFS. CDC lists Graded Exercise Therapy (GET) and CBT as treatments for CFS. [http://www.cdc.gov/cfs/general/treatment/index.html]

    Exercise intolerance is a defining feature of ME and makes ME patients physically sicker. If you improve with exercise, you do not have ME.

    Graded exercise programs (GET) are probably the single most inappropriate and harmful treatment for ME patients. ME patients cannot improve with something that has been proven to worsen or exacerbate the pathological features. Exercise can cause disease progression or even permanent damage. Patients who were mild or moderately affected have become bedridden and severely worsened by exercise or overexertion. In addition to the risk of relapse, sudden deaths have also been reported in a small percentage of M.E. patients following exercise. Dr. Elizabeth Dowsett states: 20% have progressive and frequently undiagnosed degeneration of cardiac muscle which has led to sudden death following exercise.

    The one size fits all lump them all together approach has not and will not work.

    Saying that treatments are the same for both ME and CFS is not true. Exercise cannot be both the cause and cure for ANY entity. Thus combining them as the same diagnosis (via the same ICD coding) is unscientific as well as unethical. Giving patients a diagnosis which may be harmful is a human rights violation.

    We can take this to Congress. Meanwhile ANYONE with ME is a stakeholder and should let NCHS know that they do NOT support this proposal, as it will obliterate their diagnosis. Contact: Donna Pickett <dfp4@cdc.gov>, NCHS <nchsicd9CM@cdc.gov>

  6. Jill McLaughlin

    Jill McLaughlin *****

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    What we name or call a forum is not the same as trying to combine and obliterate a standing diagnosis, which is what is happening here as well so I will be here.

    I never said anything about UK patients being sicker???

    Yes of course I believe you. That is the tragedy. BUT it is NOT the name it is the diagnosis. ME should be called ME, not CFS. Actually having an ME dx may not make you well but having an ME dx even with little awareness or treatment if better *for ME patient than having a CFS dx for which there are harmful treatments.

    Yes I think we have a choice. Those who are pushing this ME=CFS=ME/CFS paradigm ARE holding onto the name. CFS is like an abusive relationship. You try to make it work but eventually have to let go and move on. I think we have done that.

    This is NOT about people in politics. This should be about science, medicine and the hippocratic oath, which the CFSAC as well has chosen to ignore.


  7. Jill McLaughlin

    Jill McLaughlin *****

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    Ember,

    You are correct about this: For now, I take CFS to be the illness defined by Fukuda and Reeves, ME/CFS to be the illness defined by the Canadian Consensus Criteria, and ME to be the illness defined by the International Consensus Criteria. (I've been diagnosed with all three, whether or not they exist.)

    CFS exists in that people have these symptoms. But it is NOT a discreet illness in the medical lexicon. It is very broad and thus can describe a heterogeneous pt population. It is like saying X=ABCDE. Find the cause of of X. We've done this for over 20 years. Then throwing a distinct illness into the mix will not help.

    To have meaningful research you have to have well defined consistent cohorts which this proposal destroys.

    There has been gross misrepresentation of the ME-ICC. This does NOT say it is a subgroup. The ME-ICC says to identify patients with PENE, which is NOT a defining feature of CFS so all bets are off.

  8. snowathlete

    snowathlete

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    Snap. I got diagnosed with all three too. I asked which term i should use and the doctor said ME/CFS because thats covers most bases. Im in the UK by the way and got diagnosed about two years ago. Im not sure what difference it makes which name is used.

    I read that when EBV was first thought to be the culprit that the name got changed to Chronic Epstein Barr Syndrome, which later got dropped when it didnt work out, of course it might still be EBV but the science hasnt shown it - or hadnt, as they dropped the name. Thats what i read anyway.

    I suppose if and when progress is made and a cause or solid factor is established, then we might get a new and better name. For the moment i suppose there isnt a way to change it easily, liek changing your name. If i could change the name of the illness i would call it, "II" - Ignored Illness - seems the most accurate description at the moment.
  9. Ember

    Ember Senior Member

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    You skip over the words that, to my mind, undermine your argument, Jill: ...the primary goal of this consensus report is to establish a more selective set of clinical criteria....

    The ME-ICC goes on to say, 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.

    Thus the ME-ICC both identifies an ME subgroup from within the larger entity and removes it for clinical and research purposes.

    My analogy with a distinct society is an attempt to get at the ambiguity of ME's having a distinct identity (and distinct needs for advocacy) from within the larger ME/CFS community.
  10. kurt

    kurt Senior Member

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    Good points Jill. I think others have made good points as well.

    So if ME and CFS are two separate diseases, then are they on the same continuum? That begs the unknown etiology question which I believe is in fact part of the problem.

    OK, here is a thought, if in fact ME and CFS are on a continuum, then instead of ME/CFS we should probably use ME+CFS. That would indicate the close relationship yet distinction. I have no doubt the reality is far more complex, both ME and CFS are just a working definitions. They will both disappear someday. But I hear you, the problem is that studies tend to focus on various subsets, some on CFS without PEM, others on CFS+PEM, some on ME, some on ME+CFS, the situation is such a mess.

    As long as CFS is defined to include PEM, which is evidence of a neuroimmune/ neuroendocrine/ mitochondria problem, then I suspect this confusion will continue. In order to separate the conditions as you and others suggest, we would have to redefine BOTH conditions, CFS and ME, so this is not just about ME, it is also about people sick with CFS, where CFS is defined Fukuda (without PEM).

    So in an ideal world:

    CFS = chronic fatigue with exercise tolerance (patients who benefit from GET)
    ME = major neurologic symptoms + PEM (not a fatigue-based illness)
    CFS+ME = people with both CFS and ME (thus intolerant of exercise, probably most of the forum members, based on our conversations)

    Or something like that.
  11. Andrew

    Andrew Senior Member

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    I disagree. I think there is only one illness: Myalgic Encephalomyelitis (ME). The Tahoe cluster is ME. Fukuda didn't understand this and gave it a new name and incorrect description. Reeves watered it down further in search of a cohort to fit an incorrect description.

    The term "ME/CFS" is an attempt get people used to the idea that there is a connection between ME and people who are diagnosed with CFS. ME-ICC is an attempt to complete the process, and put CFS people back into the ME category where they belong.

    ME is not a subset of CFS. ME is the whole enchilada. And fwiw, the ICC provides for people who don't fit the full criteria, with a second diagnosis of atypical ME. This means researchers can focus the research, and the less symptomatic people don't get cast aside.
  12. Jill McLaughlin

    Jill McLaughlin *****

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    Ember, yes ME is more selective and says to remove it from CFS. Removing it does not mean it is a subgroup. This subgroup thing has just been put out as misinformation. CFS is a fatigue syndrome. ME is not a fatigue syndrome and should therefore not be a subgroup of CFS.
    ME is and always has been a stand alone diagnosis. I think most hate CFS, so why do we want this ME/CFS community? It makes no sense. CFS has been harmful and no need to be in a community to which we do not and most do not really want to belong. Sounds like Stockholm syndrome.


  13. Jill McLaughlin

    Jill McLaughlin *****

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    Kurt, I see what you are saying. And it may be the case. But this proposal by the Coalition makes them the same. No nuance. This is unscientific and a big mistake. We have to talk about what is and not hypotheticals and act accordingly. The Coalition made numerous factual errors, this being one. They said that PEM is the hallmark of CFS< PEM is a minor criterion and optional. If something is optional it is not a hallmark.

    ME does not have to be redefined. there is an ICD code, so it can be diagnose and researched just like any other illness.

    You said:
    CFS = chronic fatigue with exercise tolerance (patients who benefit from GET)
    ME = major neurologic symptoms + PEM (not a fatigue-based illness)
    CFS+ME = people with both CFS and ME (thus intolerant of exercise, probably most of the forum members, based on our conversations)

    It cannot be both. Exercise intolerance is the hallmark of ME. If you improve with exercise you do not have ME. Thus you cannot be exercise intolerant and improved by exercise at the same time. Without major definitional issues it seems some basic logic could have been applied. Exercise cannot be both the cause and the cure for any entity thus have to remain separate and distinct.

    I don't know if they thought they could politic and market this but this is not logical let alone scientific.

  14. usedtobeperkytina

    usedtobeperkytina Senior Member

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    Some points.

    The ME-ICC says: "The label chronic fatigue syndrome (CFS) has persisted for many years because of the lack of knowledge of the aetiological agents and the disease process. In view of more recent research and clinical experience that strongly point to widespread inflammation and multisystemic neuropathology, it is more appropriate and correct to use the term myalgic encephalomyelitis (ME) because it indicates an underlying pathophysiology." This is the first sentence of the article.

    So, is this saying that there are two diseases or one disease that has been misnamed, but for which enough research has come in showing a more appropriate name?

    It also says, "Myalgic encephalomyelitis (ME), also referred to in the literature as chronic fatigue syndrome (CFS), is a complex disease involving profound dysregulation of the central nervous system (CNS) [13] and immune system [48], dysfunction of cellular energy metabolism and ion transport [911] and cardiovascular abnormalities [1214]."

    So, is it saying there are two diseases, or one disease that is referred to in the literature by two names?
    The studies referred to include:
    • PET in Chronic Fatigue Syndrome: preliminary data: http://www.ncbi.nlm.nih.gov/pubmed/9790483 Cohort was "18 patients who fulfilled the criteria of the working case definition of CFS"
    • Relationship of brain MRI abnormalities and physical functional status in chronic fatigue syndrome: http://www.ncbi.nlm.nih.gov/pubmed/11328679 I don't see any description in the abstract of the cohort criteria.
    • Chronic fatigue syndrome and the central nervous system: http://chemport.cas.org/cgi-bin/sdc...tlWitLvN&md5=2b0202c73391c9c8d280ed943d1c3bea In the abstract, I don't see a description of the cohort criteria.
    • A formal analysis of cytokine networks in chronic fatigue syndrome:http://www.ncbi.nlm.nih.gov/pubmed/20447453 I don't see a description of the cohort criteria in the cohort.
    • Immunological aspects of chronic fatigue syndrome: http://www.ncbi.nlm.nih.gov/pubmed/18801465 As for the cohort criteria, it says, "(CFS) is a specific clinical condition that characterises unexplained disabling fatigue and a combination of non-specific accompanying symptoms for at least 6 months."
    • Biomarkers in chronic fatigue syndrome: evaluation of natural killer cell function and dipetpidyl peptidase IV/CD26. As for cohort, it says, "Diagnosis using the case definition [1] requires the exclusion of any other medical explanation for these symptoms, yielding an inefficient, slow, error prone process." That [1] refers to Fukuda.

    Ok, I will stop there. So, is the ME-ICC claiming some features of ME by using evidence from studies in CFS patients? Or, is it claiming features of one disease using evidence from studies of that disease, but saying that evidence shows the disease should no longer be called "CFS"? If the ME-ICC is claiming features of ME to the exclusion of CFS (even Fukuda criteria) patients, then why didn't they refer to the ME studies with the ME criteria? How can ME-ICC have any credibility if the studies they refer to are of people with a different illness? Or is it in fact just one illness, that should be called ME? Does that mean that these findings apply only to Fukuda patients and therefore, only the UK studies of ME are to be applied to ME patients? Or, are is there one disease which some studies refer to as "CFS" some refer to "ME/CFS" and others refer to a "ME" and different criteria are being used, but it is one disease?

    The ME-ICC says, "Using fatigue as a name of a disease gives it exclusive emphasis and has been the most confusing and misused criterion. No other fatiguing disease has chronic fatigue attached to its name e.g. cancer/chronic fatigue, multiple sclerosis/chronic fatigue except ME/CFS." So, is this saying CFS is a different illness or that CFS is not an appropriate name for the illness, when compared to the names of other illnesses?

    Of course, the ME-ICC refers to the illness as "ME" in many places, because it is saying that is the better term for, as it says often, "the disease."

    The ME-ICC also states: "Jason et al. [18] suggest that there are flaws in Reeves methodology because it is possible to meet the empirical criteria for ME without having any physical symptoms and it does not discriminate patients with ME/CFS from those with major depressive disorder." So the ME-ICC does refer to "ME/CFS."

    While it says in the conclusion that those who meet the ME-ICC should be taken out of Reeves and NICE, it says nothing about separating the ME patients from Fukuda. In fact, to my reading, this is proposed to replace Fukuda for the criteria for "the disease." This is especially evident that the proof for this new criteria largely relies on findings in Fukuda patients.

    Also, one of the scientists who are part of the ME-ICC is Dr. Nancy Klimas. And at the CFSC, Klimas was on the subcommittee that brought forward the recommendation, which CFSAC approved unanimously, to move CFS to the same code as ME. And Klimas said: "The concept here is that Option 1 was, in the feeling of our subcommittee, the best of the options to be lumpers rather than splitters on the terminology of ME/CFS and post viral syndrome, put that all together, with the idea that we are moving toward name change and the name change is likely to not be multiple names. And to have multiple divisions is going to be rather difficult when we have this ICD-10 thing come upon us for quite some time. If we could put things under a single code, I think we are going to be more successful in our name change effort."

    Dr. David Bell is also included in the ME-ICC. And he was on CFSAC when they recommended CFS be moved to neurological.

    Additionally, Dr. Anthony Komaroff was asked in 2010: "Is CFS a neurological disease?"

    His answer is: "I would certainly say, as I have said today, that there is now abundant evidence of measurable abnormalities in the central nervous system and the autonomic nervous system in people with this illness. So that makes it neurological and thats why I think it makes sense, as Dr. Gerwin said, to call it myalgic encephalomyelitis or encephalopathy, because, I think, those two words adequately classify or describe an underlying biology that tests have shown to be the case."
    Here is a link to his statement: http://www.masscfids.org/videofiles/Questions/Questions.html Go to question #21

    And this is interesting, if ME and CFS are different diseases, then who in the US is studying ME patients? The Lights published about CFS patients. WPI published about CFS patients (Fukuda and after publication, said they met CCC, which is ME/CFS). Klimas publishes studies of CFS patients. Chia, Natelson, Komaroff, Montoya, Lo, etc. What patients are used in their studies, the ones that shows biological abnormalities in the brain, immune system, etc.? It is Fukuda CFS patients. So, what studies have been done in ME patients? none in the US, that I know of.

    Tina
  15. Jill McLaughlin

    Jill McLaughlin *****

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    Andrew we cannot put CFS back into the ME category because there are people who have CFS who do not have ME. They are not interchangeable.
    All we have to do is stop this proposal and those with ME can be diagnosed with ME.

  16. usedtobeperkytina

    usedtobeperkytina Senior Member

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    The Canadian Consensus Criteria, which refers to the patients as "myalgic encephalomyelitis, which is also called chronic fatigue syndrome," says PEM is a required symptom. http://www.cfids-cab.org/MESA/ccpccd.pdf Throughout this criteria, it refers to the disease as "ME/CFS."

    Tina
  17. usedtobeperkytina

    usedtobeperkytina Senior Member

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    PEM

    Because PEM is a noticeable symptom in patients with CFS, the Lights with Bateman went to find out why. Their study, of Fukuda CFS patients, found biological abnormalities showing why CFS patients have PEM.

    Notice, this study is in CFS patients, not ME-labeled patients. Now, I believe it is the same disease. But if it isn't, this this study does not apply to ME patients. http://www.research1st.com/2011/06/02/exercise-challenge-reveals-potential-cfs-biomarkers/

    Tina
  18. Ember

    Ember Senior Member

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  19. Ember

    Ember Senior Member

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    Earlier you also wrote, Fatigue is not even a defining feature of ME.

    I can't reconcile your claims with the following ME-ICC statement: ...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 (italics added).
  20. Jill McLaughlin

    Jill McLaughlin *****

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    This is a definition that is called ME/CFS by combining some features of both that selected PEM from ME and added it to some features of CFS. BECAUSE this is what they made up, not that it is CFS. It is just making up other things.

    ME is ME as it existed before CFS was invented, so it is becoming semantics rather than science.

    According to Dr. Byron Hyde, "the more recent Canadian definition (CCC) talks of ME/CFS as though they were the same illness. They are not."

    [http://www.nightingale.ca/documents/Nightingale_ME_Definition_en.pdf]

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