it_amazes_me_really nom the headlines today, saying chronic_fatigue_syndrome may be a 'real' illness afterall, because researchers at georgetown university medical center just discovered that PWCs have these 16 proteins in their spinal cord fluid that "healthy individuals do not have",...i mean yes!, this is an amazing discovery,,...but what's really amazing is that the legitimacy of the illness is still up for debate. i mean fuck! it's frustrating. when i saw a doctor earlier this year,..she was nice, but i still got kinda or more than kinda pooh-poohed,... like as if a little exercise will make me feel all better,...it's enough to make me hesitate about seeing her again, as if i wasn't hesitant enough already. i shouldn't have to educate doctors. down with aiyhism! 051205 ... nom and by exercise i didn't mean physio) 051205 ... z avoid fermented things? 051205 ... nom why? 051205 ... nom if you were talking to me...) 051205 ... nom my first thought is you're talking about candida) 051205 ... andru235 it is indeed quite frustrating when others dismiss one's personal trials as mere trivialities 051205 ... nom yeah. 051205 ... nom even if it was 'all in my head' that would still be a form of sickness. but, it's not all in my head, well maybe some of it is,...in my brain at least. 051205 ... nom still wondering what fermented things have to do with my frustration over the lack of m_e educated doctors) 051205 ... nom as far as diagnosis and treatments go, i have tried more exercise, and it has made me worse,...and i have been on a candida-free diet and taken nystatin and there was no difference) 051205 ... nom i didn't think my problem was candida (symptoms didn't quite match up), but it had to be ruled out, and i was actually disappointed that i didn't notice a difference, as i believe candida is treatable "If there’s no difference in your symptoms, Candida may not be a factor in your illness, whilst a flare-up would suggest ‘die-off’, and an improvement in health would also be a good sign." - candida & m.e. http://www.mesupport.bigstep.com/generic250.html 051206 ... nom maybe you meant fermented because of allergies?) 051206 ... nom my second thought) 051206 ... nom i'm not going to think anymore now) 051206 ... z i used to know someone with cfs and part of her protocol was to avoid fermented foods. she was very careful. she wouldn't use soy sauce, tofu, miso, beer, some baked goods, etc. she also exercised constantly. she claimed that these 2 things provided more efficacy than everything else she did to feel better. i do not know if it had to do with candida, though that seems like a good reason. 051206 ... nom "The exercise question According to the seminal work on ME of Dr. Melvin Ramsay, "The degree of physical incapacity varies greatly, but the dominant clinical feature of profound fatigue is directly related the length of time the patient persists in physical effort after its onset; put in another way, those patients who are given a period of enforced rest from the onset have the best prognosis." It has been demonstrated that graded exercise was either of little or no use to the majority of patients, and that the use graded exercise on the severely affected was indeed harmful. In a British study, 1,214 of 2,338 patients had tried graded exercise. Of these, 417 found it to be helpful, 197 reported no change and 610 (50%) indicated that it made their condition worse. This was the highest negative rating of any of the pharmacological or non-pharmacological interventions covered in the questionnaire (and may explain the high drop out rates found in some of these programs). Exercise has been shown not to be an effective form of treatment, while it has also been confirmed that there may be ongoing neurological, endocrine, immunological, and cardiovascular abnormalities which are causing the symptoms of ME/CFS. Exercise will not treat or improve these abnormalities and in fact, will exacerbate symptoms that are caused by such abnormalities. (Dr. A. Martin Lerner discovered that some patients had persistent viral infections in the heart, causing left-ventricular dysfunction, resulting in exercise intolerance. Exercise worsens the cardiac dysfunction.) Even minor activity, either physical or mental, may cause a significant worsening of symptoms. The recoMEded management for ME/CFS is not exercise but "activity" management (sometimes referred to as pacing), which is to conserve energy, not to expend it. These are very different concepts, and pacing is intended to prevent overexertion and relapse, not for improvement. On average, ME/CFS patients have been shown to be functioning dangerously close to their energy limits, and increasing activity is counter-productive. If even trivial activity can exacerbate symptoms, then exercise is not an effective treatment." - http://www.ahmf.org/infosheet.htm#19 "Even though post-exertional malaise is a hallmark feature of ME/CFS, exercise programs are often prescribed with little thought to the effect they may have on patients. The panel of experts for the ME/CFS clinical consensus document(1) stressed that a thorough evaluation of patients and their total illness burden, optimizing medical management, and a careful evaluation of pain generators and risk factors must be done before even considering an exercise program. As much care must be taken in prescribing appropriate exercise for ME/CFS patients as in prescribing pharmaceuticals.(5) ME/CFS patients do not respond to exercise in a manner that is expected of healthy people. The following chart summarizes some of the abnormal reactions to exercise which ME/CFS patients often experience. Response to Exercise -Sense of well-being: Healthy People: Invigorating Anti-depressant effect ME/CFS Patients: Feel malaise, fatigue and worsening of symptoms - Resting heart rate: Healthy People: Normal ME/CFS Patients: Elevated - Heart rate at maximum workload: Healthy People: Elevated ME/CFS Patients: Reduced heart rate - Maximum oxygen uptake: Healthy People: Elevated ME/CFS Patients: Approximately ½ of sedentary controls - Age-predicted target heart rate: Healthy People: Can achieve it ME/CFS Patients: Can NOT achieve it - Heart functioning Healthy People: Increased ME/CFS Patients: Sub-optimal level - Cerebral blood flow: Healthy People: Increased ME/CFS Patients: Decreased - Cerebral oxygen: Healthy People: Increased ME/CFS Patients: Decreased - Body temperature Healthy People: Increased ME/CFS Patients: Decreased - Respiration: Healthy People: Increased ME/CFS Patients: Breathing irregularities: shortness of breath, and irregular breathing - Cognitive processing: Healthy People: Normal, or more alert ME/CFS Patients: Impaired - Recovery period: Healthy People: Short ME/CFS Patients: At least 24 hours but can last days or even weeks - Oxygen delivery to the muscles: Healthy People: Increased ME/CFS Patients: Impaired - Gait kinematics: Healthy People: Normal ME/CFS Patients: Gait abnormalities" "The Canadian Expert Consensus Panel has published a medical milestone, the first clinical case definition for the disease known as myalgic encephalomyelitis/chronic fatigue syndrome. This definition is clearly a vast improvement over the CDC's 1994 Fukuda criteria, which led to misunderstanding in both research and treatment modalities by making "fatigue" a compulsory symptom but by downplaying or making optional the disease's hallmark of post-exertional sickness and other cardinal ME/CFS symptoms. In sharp contrast to the Fukuda criteria, this new clinical case definition makes it compulsory that in order to be diagnosed with ME/CFS, a patient must become symptomatically ill after exercise and must also have neurological, neurocognitive, neuroendocrine, dysautonomic, and immune manifestations. In short, symptoms other than fatigue must be present for a patient to meet the criteria. This case definition, which incorporates some of the current research on dysautonomia, cardiac, and immune problems, was published in the Journal of Chronic Fatigue Syndrome, Vol. 11 (1) 2003." - www.cfids-cab.org/MESA/ccpc.html "The first treatment most doctors recommend is a combination of rest, exercise, and proper diet. The patient is advised to attempt only the most important activities, to avoid over-exerting himself or herself, and to rest whenever necessary. A moderate amount of exercise is important, but too much exercise can make the disease worse" http://www.faqs.org/health/Sick-V1/Chronic-Fatigue-Syndrome.html 051206 ... nom "even now controversy surrounds the direction of research, with the majority of money donated to psychological studies on the effects of exercise and cognitive behaviour therapy - a form of counselling. As a result, patients are often recommended to increase activities and develop coping strategies. It might sound reasonable on paper, but for a neurological illness such as ME, it amounts to being told to exercise and think yourself better. If it was that simple we’d all have recovered years ago." - ciara maclaverty, (the lady on the cover of the belle_and_sebastian album 'if you're feeling sinister'), "sick, not tired" http://www.cfids-cab.org/MESA/adv7.html 051206 ... nom "Seven weeks of river walkways Seven weeks of staying up all night" - a summer wasting "A hallmark sign of neurological disease is that exercise worsens the insomnia, i.e. the opposite to that found in well people." - wikipedia 051206 ... nom i am constantly pushing myself when i should be pacing, and it has caused and can cause my condition to worsen. it is a hard lesson. i am not opposed to 'light exercise', or the alteration of diet if needed,...i have done both me/cfs is not the same in every patient, indeed there may be many subsets of the illness, or persons misdiagnosed, so a treatment that works for one person might not work for another "The type, severity, and frequency of symptoms of ME and FM vary from one individual to another and often from day to day." 051206 ... nom fortunately my specialist and gp are both experts about m.e., exercise and candida (which as i said, was ruled out for me). i just wish there were more doctors like them, as i have to travel to see them (which costs time, energy, & $money) and there is a long wait,...which is all stress on top of stress for me. the problem i had with the doctor i mentioned at the start of this blathe was her lack of knowledge and sensitivty to the matter of ME and exercise, which, as i find, is all too common. reading the words "may be real", and "may be a legitimate neurological condition" in the news was yet again another reminder of the great lack of information out there,...something i am constantly facing. 051206 ... nom it amazes me really. 051206 ... nom and by lack of information, i think i meant ignorance, as there is already a lot of documented evidence,...though there certainly hasn't been enough funding into research in the past...at least they are making breakthroughs, with newer reserach methods/technology (such as microarray analysis), understanding and compassion advance. 051206 ... nom i think i'm done ranting now, sorry blather.) 051206 ... nom or maybe i'm not ranting exactly, not really that upset, just amazed, rambling about it, taking up space, blathering) 051206 ... nom or maybe i am/was ranting, but i am done now because i have to go catch the bus that i missed yesterday. 051206 ... WMD 2100... 051206 ... ? why_do_Islamic_extremists_hate_the_United_States 051206 ... nom "Whistler T, Jones JF, Unger ER, Vernon SD. Exercise responsive genes measured in peripheral blood of women with chronic fatigue syndrome and matched control subjects. BMC Physiology 2005;5:5 The complete electronic version of this article is available at http://www.biomedcentral.com/1472-6793/5/5 Summary Patients with CFS have exacerbated symptoms after physical activity and exercise also induces changes in physiologic function mimicking an infectious or inflammatory state. This study where patients and healthy subjects were challenged with an exercise stress serves is another 'model' system to help us understand the pathophysiology of CFS. Blood samples were drawn before and after exeercise (6 and 24 hours). Microarrays were used to simultaneously assess the expression of 3,800 genes. The patterns of gene expression differed between subjects with CFS and normal controls. The differentially expressed genes have functions related to energy metabolism, muscle response, and immune response. We are continuing laboratory analysis to measure other factors that might help us to better understand these patterns. Abstract Background: Chronic fatigue syndrome (CFS) is defined by debilitating fatigue that is exacerbated by physical or mental exertion. To search for markers of CFS-associated post-exertional fatigue, we measured peripheral blood gene expression profiles of women with CFS and matched controls before and after exercise challenge. Results: Women with CFS and healthy, age-matched, sedentary controls were exercised on a stationary bicycle at 70% of their predicted maximum workload. Blood was obtained before and after the challenge, total RNA was extracted from mononuclear cells, and signal intensity of the labeled cDNA hybridized to a 3800-gene oligonucleotide microarray was measured. We identified differences in gene expression among and between subject groups before and after exercise challenge and evaluated differences in terms of Gene Ontology categories. Exercise-responsive genes differed between CFS patients and controls. These were in genes classified in chromatin and nucleosome assembly, cytoplasmic vesicles, membrane transport, and G protein-coupled receptor ontologies. Differences in ion transport and ion channel activity were evident at baseline and were exaggerated after exercise, as evidenced by greater numbers of differentially expressed genes in these molecular functions. Conclusions: These results highlight the potential use of an exercise challenge combined with microarray gene expression analysis in identifying gene ontologies associated with CFS." - cdc 051206 ... nom "In her recent paper (Jan 01), "The Late Effects of ME," the well-known English ME specialist Dr. Betty Dowsett wrote: ".....FINAL STAGE (1,2) After a variable interval, a multi-system syndrome may develop, involving permanent damage to skeletal or cardiac muscle and to other "end organs" such as the liver, pancreas, endocrine glands and lymphoid tissues, signifying the further development of a lengthy chronic, mainly neurological condition with evidence of metabolic dysfunction in the brain stem. Yet, stabilization, albeit at a low level, can still be achieved by appropriate management and support. The death rate of 10% occurs almost entirely from end-organ damage within this group (mainly from cardiac or pancreatic failure)."..." http://www.cfids-cab.org/MESA/ 051217 ... more blah for blather i sorta wish i hadn't written the "when i saw a doctor earlier this year..." bit (along with a lot of other stuff about myself&health) it's just that when she came into the office with the clipboard form i'd filled out with my name and address and "me/cfs&fibromyalgia", she asked me what was wrong, and i told her i was in increasing pain (and was worried about 'my lump'), and she said she was more concerned about the lump (as was i) and immediately said "try doing more exercise" before even discussing my history or examining me, which i found to be unprofessional of her and disconcerting to me. i have to say though that after she checked out the lump and we returned to the subject of my joints and stuff, she examined my shoulder and listened to all my crackiness and said it was all more complicated than she'd thought and she was no longer recommending i go running or whatever it was just the initial pooh-poohing that stung (as did the headline that brought this all up) thing is, i pooh-pooh myself enough already as it is. i want to exercise more, and after seeing this doctor i found myself trying to do more (and i was already walking too much) and it wasn't a smart idea as i soon learned 051218 ... nom and btw, zeke, if you happen to revisit this blathe, thankyou for your thoughts 051218 ... nom i didn't get the sequence right with the doctor's office story. i'm really frustrated with myself for this whole entire blathe. i don't know what's wrong with me. 051219 ... nom i guess i'm just too sensive about it all. 051220 ... nom sensitive 051220 ... nom i just want to be quiet now. 051220 ... nom "The defining characteristic of M.E. is that patients relapse with physical exertion and develop disease progression with continued physical exertion. Hence, the defining characteristic is exercise intolerance, post-exertional muscle weakness, generalized weakness, faintness, and pain; and post-exertional relapsing of symptoms. In some cases symptoms remit with rest, and in other cases they do not. In fact, recent research on a prominent subset of the illness showed that postural stress and exercise exacerbated cardiac insufficiency in this disease. If a patient improves with exercise, that patient does not have M.E. and may have some illness other than M.E. (for example, arthritis, depression, osteoporosis, and a number of medical conditions do improve with exercise)." - http://www.cfids-cab.org/MESA/framework.html 060417 ... nom just stumbled upon that and had to add it) 060417 what's it to you? who go blather from