# New ME Activism Short Films On YouTube



## M&M (Jan 20, 2002)

I received this via Co-Cure, and, as you can see, please feel free to repost it! LOL*******New M.E. activism short films on YouTube!*permission to repost* *permission to repost* *permission to repost**permission to repost* *permission to repost*You can now view an 'A Hummingbirds Guide to M.E.' channel on YouTube!I've only made a few short films about M.E. (and the difference between M.E. and CFS) so far, but there will be more to come over the next few months. Each film is also available in an audio format (as an mp3 file).Titles available so far include:1. Why 'CFS' is a wastebasket diagnosis 03:24This video explains why every diagnosis of 'CFS' based on any of the CFS definitions is ALWAYS a misdiagnosis and why the bogus disease category of 'CFS' must be abandoned.2. 'CFS' harms everyone, not just M.E. sufferers 03:25This video explains why it isn't just people with M.E. who are harmed by the creation of the bogus disease category of 'CFS' and why it harms everyonemisdiagnosed with CFS.(Note that this is not about mere terminology, it is about the DEFINITIONS of 'CFS' not defining any distinct disease, including M.E., that is why every diagnosis of CFS is a MISdiagnosis.)3. How does Myalgic Encephalomyelitis affect my life? 06:17This video looks at some of the ways that my life is affected by severeMyalgic Encephalomyelitis. (None of them involving mere 'fatigue'!)M.E. is a distinct organic neurological disease which occurs in epidemic and sporadic forms. M.E. can be extremely disabling; 25% of people with M.E. are severely affected and wheelchair-bound, house-bound and/or bedbound - but anadditional level of suffering also comes from the (politically and financially motivated) confusion between M.E. and the fictional disease category of 'CFS.'Each film is under 10 MB, and around 3 - 6 minutes long. For more information see the Video and Audio page at:http://www.ahummingbirdsguide.com/topicaudioandvideo.htmHappy viewing!------Also new to the site this month is an UPDATED version of The Ultra-comprehensive Myalgic Encephalomyelitis Symptom List. See:http://www.ahummingbirdsguide.com/themesymptomlist.htm(The two page summary of the list has also been updated)------Best wishes everyone,Jodi Bassett--A Hummingbirds Guide to Myalgic Encephalomyelitis:www.ahummingbirdsguide.com--Do not for one minute believe that CFS is simply another name for Myalgic Encephalomyelitis (M.E.). It is not. The CDC 1988 definition of CFS describes a non-existing chimera based upon inexperienced individuals who lack any historical knowledge of this disease process. Any disease process that has major criteria, of excluding all other disease processes, is simply not a disease at all; it doesn't exist. M.E. and CFS should be separated as definitions. They are not the same. Dr Byron Hyde MD 2006


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## 14480 (Sep 3, 2006)

I'm confused by this post. Are they saying that CFS does not exist? Can you explain more, M&M?


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## M&M (Jan 20, 2002)

There is new and budding research to indicate that the guidelines the CDC set forth to "define" and "diagnose" CFS do not distinguish any real disease. (Which, to tell the truth, the CDC set up those guidelines for that very reason - to discredit a community of very sick patients.) I believe what many of the researchers and advocates are saying is that THAT CFS (the CDC defined "CFS") does not exist - it's nothing, not an illness at all. That's why many are suggesting we do away with that name all together. The CDC guidelines refer to a "nothing" entity, so we should get rid of the "nothing entity". Instead, they suggest we speak of the actual illness - ME - which is a real, neurological, organic damage to an area of the brain.The advocates point out how the term "CFS" (as defined by the CDC) is detrimental to all of us. Their "CFS" refers to a disease that doesn't exist, and that discredits all the sick people - who really are sick with something.Does that help? I might be foggy today.


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## 14480 (Sep 3, 2006)

Um, I guess... so those diagnosed with CFS don't really have it, and instead have ME? Does the same go for Fibromyalgia? But is ME really more accepted as an illness? I don't think I've even ever heard about it until coming on this board.... but I guess the bottom line is that whatever is a more accurate diagnosis for us all, that will make us more understood and validated in the medical community, and will ultimately lead to better treatment for us.. is what we should be aiming for. right?


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## M&M (Jan 20, 2002)

None of this affects Fibromyalgia, because it is a separate illness. I think to get the best understanding of what these particular researchers and advocates are saying, it would be best to watch the short films, check out that website, and read over Hyde's new definitions for ME and for CFS.I'm not the best person to explain it, because I'm not involved in any of the research or any of these advocacy groups. But, one thing I do know is that the CDC definitions (including research they're currently doing) is what they call an "integrative" approach by mixing all kinds of illnesses (particularly psychological disorders, including stress and anxiety response) into the melting pot they call CFS.I can't say that I believe all people with a CFS diagnosis are misdiagnosed. I think SOME people with CFS ARE misdiagnosed, no question - because the CDC allows any fatiguing illness to be called "CFS". The research that the advocacy groups are doing now, and the message they're trying to get out is that CFS or ME, or whatever other name you want to call it, is NOT primarily an illness marked by fatigue. It is an illness marked by a very specific brain anomaly. I think that's what they want to get across - it's not a fatigue illness, but a disorder of the central nervous system from a specific damaged or injured area of the brain.I think too that may be why some groups really are trying hard to get that name changed. Chronic Fatigue Syndrome makes it sound like an illness where you're just tired, or fatigued, all the time. But Myalgic Encephalomyelitis describes the actual mechanism behind the illness, it's more inclusive of all the symptoms a patient has (of which fatigue is not always the worst), and refers to what specifically is going on - an inflammation, or injury, to an essential part of the brain that controls and regulates the central nervous system.I think sometimes advocacy groups in general can go a bit to the extreme with their message, because they are so passionate about it. I think the groups that say all CFS patients are misdiagnosed have done just that - gone too far with a label. Most doctors (and most patients, for that matter) are not familiar with the term "ME". So ME patients are usually labelled CFS patients, for lack of a different label. But, that's just my take on it! I agree with these groups in a lot of ways, but disagree with some things too. I do think it's important though, that patients stay abreast of this new research, and the grass-roots approach to gaining some notariety for our illness.


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