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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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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.
For people on Facebook, George Mutts did a running commentary of day #2 https://www.facebook.com/notes/xmrv-global-action/cfsac-day-2-and-recommendations/10150389100541797 . (Apologies if I said this before)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.
So I do not want to be part of the CFS community.
- author unknownIt often shows an excellent command of language to say nothing.
Jill,
I appreciate what you are saying. In my opinion neither ME nor CFS is adequately defined, we have some type of complicated neuroimmune/endocrine condition with so many systems out of balance that it could be considered to fall in many different categories. Certainly inflammation (ME) and fatigue (CFS) are parts, but neither is an accurate representation of the whole.
Anyway, I agree we need a stronger political presence, but think you have an up-hill battle if you want to separate ME and CFS. This is how people view our condition, as a disease with many names:
The key is really the problem defining the etiology. I believe the CDC initially viewed CFS as a temporary explanation for the outbreaks pending a better understanding which probably they thought would happen quickly.
Just curious, do you think CCC defined CFS and ME patients have different illnesses?
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
Ultimately, research may prove you right, Jill. But in the meantime, it will be driven by the current definitions. 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.)
According to the ICC, ME is a subgroup: 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.
In the absence of further research, restating beliefs as facts isn't likely to get us very far. What I hope may help is research using the ME-ICC.
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.)
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.
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>
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.)
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.
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.
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.
Notice, this study is in CFS patients, not ME-labeled patients. http://www.research1st.com/2011/06/02/exercise-challenge-reveals-potential-cfs-biomarkers/
ME is not a fatigue syndrome and should therefore not be a subgroup of CFS.
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