Guest guest Posted January 19, 2012 Report Share Posted January 19, 2012 {Moderator: This group voted to allow discussion of psychological treatments after much discussion and debate. Unnecessary to go through that disruption yet again only to switch 180 degrees. There are some people who have triggered over to ME/CFIDS due to trauma and this forum would be the appropriate place to discuss experimental treatments.} I agree. Well said. It's time to take a stance for all who suffer, I'm tired... and I'm not " psycho " anything. I'm real and I'm suffering. Change the home page forum! This is serious. Enough is enough, let's do something... > > I think it's important that CFS patients stop defending " psychological " claims. > > The word 'psycho' should not even be acknowledged, even it were to come up in dialogue. > > I believe that it is human nature that once a word is used repetitiously, that when the other party leaves the conversation, what they remember is the word that came up the most. > > CFS patients just need to IGNORE any such statement, DON'T be defensive, and simply state what CFS is. > > I don't know who moderates this group, but I would like to recommend that on the home page of this forum that the first thing written in the description is something like this: > > " CFS/ME is a multi-system disease adversely affecting the heart, brain, immune system, nervous system, circulatory systems and muscles, including post-exertional malaise and neurological/ cognitive manifestations. " > > Be well. > www.cfsstraighttalk.blogspot.com > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2012 Report Share Posted January 20, 2012 Just need to comment on this-- For MYSELF, when I speak -or write- to any outside person and the subject of life style or My Health happens to come up, I can and do identify myself as having a debiliitating nasty autoimmune illness and fibromyalgia. (I only mention both to people as fibro is slightly more known now). I feel now as EVER that the FACT that I -and here I do NOT include anyone else in this or any OTHER forum on the subject and cannot imagine I ever would!- happen to also have depression (major depression?) and PTSD. Facts of MY life; no one else's necessarily... Don't come to these boards for information nor to discuss something which to ME is .. well, for want of a better term, sort of more personal. And, not a physical medical illness now, is it? I do not direct my small rant here at the moderator of this group really... JUST felt the need to say something. All of the people who've gone off on having been dismissed as 'not being sick'? Think that those who've gotten upset at that -hell, I have- began with those who could not get MEDICAL treatment to begin with. THAT is the key point I think... ALL of the people who sought medical care and were denied.... (I.e. " ...you're faking/ off our rocker " etc). I do hope that I am not making a fool of myself here... That my point have some valid points. You do not want to print it, don't; no offense taken. Jane, the one with the hound NYC > > > > I think it's important that CFS patients stop defending " psychological " claims. > > > > The word 'psycho' should not even be acknowledged, even it were to come up in dialogue. > > > > I believe that it is human nature that once a word is used repetitiously, that when the other party leaves the conversation, what they remember is the word that came up the most. > > > > CFS patients just need to IGNORE any such statement, DON'T be defensive, and simply state what CFS is. > > > > I don't know who moderates this group, but I would like to recommend that on the home page of this forum that the first thing written in the description is something like this: > > > > " CFS/ME is a multi-system disease adversely affecting the heart, brain, immune system, nervous system, circulatory systems and muscles, including post-exertional malaise and neurological/ cognitive manifestations. " > > > > Be well. > > www.cfsstraighttalk.blogspot.com > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2012 Report Share Posted January 21, 2012 Please read this article http://jackkruse.com/hey-lyme-disease-meet-leptin/ " This is what causes these diseases……..BIOTOXINS NOT CRAZY LADIES " > > > > > > I think it's important that CFS patients stop defending " psychological " claims. > > > > > > The word 'psycho' should not even be acknowledged, even it were to come up in dialogue. > > > > > > I believe that it is human nature that once a word is used repetitiously, that when the other party leaves the conversation, what they remember is the word that came up the most. > > > > > > CFS patients just need to IGNORE any such statement, DON'T be defensive, and simply state what CFS is. > > > > > > I don't know who moderates this group, but I would like to recommend that on the home page of this forum that the first thing written in the description is something like this: > > > > > > " CFS/ME is a multi-system disease adversely affecting the heart, brain, immune system, nervous system, circulatory systems and muscles, including post-exertional malaise and neurological/ cognitive manifestations. " > > > > > > Be well. > > > www.cfsstraighttalk.blogspot.com > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2012 Report Share Posted January 22, 2012 Hi-- Am going to read this --always HAVE been suspicious for a LONG dam time!- of toxins which .. go in our soil, food, air, etc. Now .. I'll also say here THANK YOU!! 'CRAZY' isn't it! It is a MEDICAL ILLNESS. I cannot go on longer here -no need- as have to walk the hound now... Jane, the one with the hound NYC > > > > > > > > I think it's important that CFS patients stop defending " psychological " claims. > > > > > > > > The word 'psycho' should not even be acknowledged, even it were to come up in dialogue. > > > > > > > > I believe that it is human nature that once a word is used repetitiously, that when the other party leaves the conversation, what they remember is the word that came up the most. > > > > > > > > CFS patients just need to IGNORE any such statement, DON'T be defensive, and simply state what CFS is. > > > > > > > > I don't know who moderates this group, but I would like to recommend that on the home page of this forum that the first thing written in the description is something like this: > > > > > > > > " CFS/ME is a multi-system disease adversely affecting the heart, brain, immune system, nervous system, circulatory systems and muscles, including post-exertional malaise and neurological/ cognitive manifestations. " > > > > > > > > Be well. > > > > www.cfsstraighttalk.blogspot.com > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2012 Report Share Posted January 24, 2012 I like your wording of the description of CFS/ME. I think it should definitely be but on the home page. Steve M in PA, age 22 Married with 3 year old daughter Duragesic 300mcg/hr (q48hr) Methadone 45mg/day Actiq-600 (4/day) OxyIR 30mg (6/day) Grade II DIPG (Diffuse Intrinsic Pontine Glioma) Comorbid Fibromyalgia & CFIDS Probable RSD Normal TSH Hypothyroidism " Pain makes us make bad decisions. Fear of pain is almost as big a motivator. " -House MD On Jan 19, 2012 12:33 AM, " lemonfoundation " <lemonfoundation@...> wrote: > I think it's important that CFS patients stop defending " psychological " > claims. > > The word 'psycho' should not even be acknowledged, even it were to come up > in dialogue. > > I believe that it is human nature that once a word is used repetitiously, > that when the other party leaves the conversation, what they remember is > the word that came up the most. > > CFS patients just need to IGNORE any such statement, DON'T be defensive, > and simply state what CFS is. > > I don't know who moderates this group, but I would like to recommend that > on the home page of this forum that the first thing written in the > description is something like this: > > " CFS/ME is a multi-system disease adversely affecting the heart, brain, > immune system, nervous system, circulatory systems and muscles, including > post-exertional malaise and neurological/ cognitive manifestations. " > > Be well. > www.cfsstraighttalk.blogspot.com > > > > ------------------------------------ > > This list is intended for patients to share personal experiences with each > other, not to give medical advice. If you are interested in any treatment > discussed here, please consult your doctor. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2012 Report Share Posted January 24, 2012 Hi There, I am one of the moderators. I have updated the Home page and made various changes per your suggestion. I have used the new description based on the International Consensus Criteria for Myalgic Encephalomyelitis as published in Journal for Internal Medicine. I also updated the picture to include a scaled down version of the criteria. Here is the description and the reason why they have chosen to use solely ME rather than including CFS, CFIDS, FMS, etc. We will continue to use these terms on the home page to help people find the forum. http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2011.02428.x/full " Myalgic encephalomyelitis is an acquired neurological disease with complex global dysfunctions. Pathological dysregulation of the nervous, immune and endocrine systems, cardiovascular abnormalities, impaired cellular energy metabolism and ion transport. 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. It is also consistent with the neurological classification of ME in the World Health Organization's International Classification of Diseases (ICD G93.3). " Paraphrased criteria (see Journal article for full description) International Consensus Criteria for Myalgic Encephalomyelitis A. Postexertional neuroimmune exhaustion (PENE) [Compulsory] 1. Marked, rapid physical and/or cognitive fatigability in response to exertion 2. Postexertional symptom exacerbation 3. Postexertional exhaustion -immediate or delayed by hours or days 4. Recovery period is prolonged 5. Low threshold of physical and mental fatigability (lack of stamina) 6. results in a substantial reduction in pre-illness activity level B. Neurological impairments [1 symptom from 3 categories] 1. Neurocognitive impairments 2. Pain 3. Sleep disturbance 4. Neurosensory, perceptual and motor disturbances C. Immune, gastro-intestinal and genitourinary Impairments [1 symptom from 3 categories] 1. Flu-like symptoms -recurrent or chronic, activate or worsen with exertion 2. Susceptibility to viral infections with prolonged recovery periods 3. Gastro-intestinal tract 4. Genitourinary 5. Sensitivities to food, medications, odours or chemicals D. Energy production/transportation impairments [At least 1 symptom] 1. Cardiovascular - Orthostatic Intolerance, Neurally Mediated Hypotension, Postural Orthostatic Tachycardia Syndrome, Palpitations 2. Respiratory 3. Loss of thermostatic stability 4. Intolerance of extremes of temperature Journal of Internal Medicine, Volume 270, Issue 4, pages 327–338, Oct 2011 Thanks, Marti > > I don't know who moderates this group, but I would like to recommend that on the home page of this forum that the first thing written in the description is something like this: > > " CFS/ME is a multi-system disease adversely affecting the heart, brain, immune system, nervous system, circulatory systems and muscles, including post-exertional malaise and neurological/ cognitive manifestations. " > > Be well. > www.cfsstraighttalk.blogspot.com > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2012 Report Share Posted January 24, 2012 Thank you, Marti, this is helpful. Marcia on in Salem, Massachusetts On Jan 24, 2012, at 1:36 PM, marti_zavala wrote: > Hi There, > I am one of the moderators. I have updated the Home page and made various changes per your suggestion. I have used the new description based on the International Consensus Criteria for Myalgic Encephalomyelitis as published in Journal for Internal Medicine. > > I also updated the picture to include a scaled down version of the criteria. Here is the description and the reason why they have chosen to use solely ME rather than including CFS, CFIDS, FMS, etc. We will continue to use these terms on the home page to help people find the forum. > > http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2011.02428.x/full > > " Myalgic encephalomyelitis is an acquired neurological disease with complex global dysfunctions. Pathological dysregulation of the nervous, immune and endocrine systems, cardiovascular abnormalities, impaired cellular energy metabolism and ion transport. > > 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. It is also consistent with the neurological classification of ME in the World Health Organization's International Classification of Diseases (ICD G93.3). " > > Paraphrased criteria (see Journal article for full description) > > International Consensus Criteria for Myalgic Encephalomyelitis > > A. Postexertional neuroimmune exhaustion (PENE) > [Compulsory] > 1. Marked, rapid physical and/or cognitive fatigability in response to exertion > 2. Postexertional symptom exacerbation > 3. Postexertional exhaustion -immediate or delayed by hours or days > 4. Recovery period is prolonged > 5. Low threshold of physical and mental fatigability (lack of stamina) > 6. results in a substantial reduction in pre-illness activity level > > B. Neurological impairments > [1 symptom from 3 categories] > 1. Neurocognitive impairments > 2. Pain > 3. Sleep disturbance > 4. Neurosensory, perceptual and motor disturbances > > C. Immune, gastro-intestinal and genitourinary Impairments > [1 symptom from 3 categories] > 1. Flu-like symptoms -recurrent or chronic, activate or worsen with exertion > 2. Susceptibility to viral infections with prolonged recovery periods > 3. Gastro-intestinal tract > 4. Genitourinary > 5. Sensitivities to food, medications, odours or chemicals > > D. Energy production/transportation impairments > [At least 1 symptom] > 1. Cardiovascular - Orthostatic Intolerance, Neurally Mediated Hypotension, Postural Orthostatic Tachycardia Syndrome, Palpitations > 2. Respiratory > 3. Loss of thermostatic stability > 4. Intolerance of extremes of temperature > > Journal of Internal Medicine, Volume 270, Issue 4, pages 327–338, Oct 2011 > > Thanks, > Marti > > > > > > > I don't know who moderates this group, but I would like to recommend that on the home page of this forum that the first thing written in the description is something like this: > > > > " CFS/ME is a multi-system disease adversely affecting the heart, brain, immune system, nervous system, circulatory systems and muscles, including post-exertional malaise and neurological/ cognitive manifestations. " > > > > Be well. > > www.cfsstraighttalk.blogspot.com > > > > Quote Link to comment Share on other sites More sharing options...
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