The Scientific Basis of CFS/CFIDS/ME.
OSLER'S WEB: Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic http://www.cfids-cab.org/MESA/... video is:A short overview of published neurological findings on the condition variously labeled as Chronic Fatigue Syndrome,Chronic Fatigue Immune Dysfunction Syndrome, or Myalgic Encephalomyelitis/Encephalopathy.This video focuses mainly on the science of CFS, as well as a more thorough symptom list (for some reason, it seems I've omitted post-exertional malaise!), and credit for much of the research cited here rests with the creator of a Hummingbird's Guide, who saved me hours of poring through journals. Thank you, and I hope you don't mind me citing papers you have summarized. A Hummingbird's Guide can be found here: http://www.ahummingbirdsguide.... researchers in the field are:Anthony Komaroff of Harvard,Nancy KlimasJohnathan Kerr (whose team are confident they will be able to develop a diagnostic test for ME)Byron Hyde, who has written a large and rather expensive volume for medical practitioners,And others.The Canadian Expert Consensus Panel Clinical Case Definition for CFS/ME can be found here: http://www.cfids-cab.org/MESA/... . It is one of the most comprehensive diagnostic criteria for this condition, and, in my mind, the most accurate to date. It is a pity that this criteria is not used for diagnosis, as criteria such as the Oxford criteria have a tendency to include patients who suffer from idiopathic or psychologically motivated fatigue states.Enjoy the video. I make these because I am always irritated by some of the videos I watch which describe CFS/ME as a fatigue state, which could not be further from the truth. I may make this the only video on my profile, as it strikes me as more lucid than my previous attempts which is in no small part due to my own improvement. :)I've made some references shorter than they originally appear to fit into the text allowable."Pain, invariably present, may be devastating and is perhaps the feature that impresses itself most forcibly on the observer." Acheson E. Am J Med 1959; 26: 569-95.Symptoms I have listed on this video are cited by numerous official sources. Not all patients experience all symptoms, and some symptoms are more pronounced than others. Some of the less comprehensive sites can be rather misleading, particularly when explaining the condition with words such as 'fatigue,' which is a truly awful misnomer. Take the worst flu you've ever had and cut the energy you had in half, that is the 'fatigue' you get with CFS without any other symptoms being added to the mix. Then imagine the prospect of feeling that way for years, decades, or, if you're particularly affected, the rest of your life.Other Common Symptoms (CFIDS Association of America):Additional symptoms are reported by people with CFIDS (PWCs) such as word-finding difficulties, inability to comprehend/retain what is read, inability to calculate numbers and impairment of speech and/or reasoning. PWCs may also have visual disturbances (blurring, sensitivity to light, eye pain, need for frequent prescription changes); psychological problems (depression, irritability, anxiety, panic attacks, personality changes, mood swings); chills and night sweats; shortness of breath; dizziness and balance problems; sensitivity to heat and/or cold; alcohol intolerance; irregular heartbeat; irritable bowel (abdominal pain, diarrhea, constipation, intestinal gas); low-grade fever or low body temperature; numbness, tingling and/or burning sensations in the face or extremities; dryness of the mouth and eyes (sicca syndrome); gynecological problems including PMS and endometriosis; chest pains; rashes; ringing in the ears (tinnitus); allergies and sensitivities to noise/sound, odors, chemicals and medications; weight changes without changes in diet; light-headedness; mental fogginess; fainting; muscle twitching; and seizures.
Channel: Nonprofits & Activism
Uploaded: December 31, 1969 at 5:59 pm
Author: mesufferer
Length: 06:33
Rating: 5.00
Views: 1393
Tags: CFIDS CFS Chronic Encephalomyelitis Fatigue ME Myalgic Syndrome
Video Comments
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lukeclarke2006 (December 31, 1969 at 5:59 pm)
did tht post?
mesufferer (December 31, 1969 at 5:59 pm)
I agree very much with you, Diamon. In fact, some symptom lists don't seem terribly disabling in themselves, so to speak. It's the cumulative effect of multiple symptoms hitting you at once that I think makes this illness so devastating.
antares4141 (December 31, 1969 at 5:59 pm)
Mold and CFS symptoms are directly related to each other. You can prove this to yourself by going to walmart buying a $37 dome shaped 9x7 tent, (no stakes needed, nylon very low on VOC'S) setting it up in your bedroom and putting a medium to large size hepa filter in it. Don't come out without a respirator designed for asbestos and mold abatement EVER, For about a week anyways. I know I am not the only one with this condition. PLEASE TRY IT AND CONFIRM IT FOR YOURSELF WHAT YOU ARE UP AGAINST!
DiamonDie (December 31, 1969 at 5:59 pm)
It's just a shame that no amount of symptom lists does justice to this illness. :-/ E.g. "visual disturbances" doesn't sound so bad, but I have a friend with severe CFS/ME who hasn't been able to read, watch TV or anything for 13 years due to the severe visual dysfunction she has due to CFS/ME (her eyes just won't focus, and attempting it can lead to days of debilitating vertigo).
ragazza1974 (December 31, 1969 at 5:59 pm)
I agree. Very enlightening! Thank you.
SANDMANCASTHISSPELL (December 31, 1969 at 5:59 pm)
It's all in my brain. Not "in my "head"And to think so many sufferes are still fighting to be heard. This video is so POWERFUL! Hats off to you for such a well thought of meaningfull video. MAYBE WE SHOULD HAVE THIS VIDEO PUT IN TIMES SQAURE AND LETS OUR VOICES BE HEARD!Thank you xox
BretagneShrew (December 31, 1969 at 5:59 pm)
yeh I live in a remote area, no specialists etc avaliable. hard to find doctors who believe in the existance of CFS/ME. the ones I've spoken too say that there is such thing as a period of "depression" that gives you fatigue after a bad virus. totally contradicts all the avaliable research online...
mesufferer (December 31, 1969 at 5:59 pm)
Sounds like they diagnosed you with Post Viral Fatigue Syndrome and think you should be better by now, so you must just be depressed. I got pawned off with antidepressants, it was like taking ex lax and prozac at the same time - stuck on the toilet but less miserable about it! :D
BretagneShrew (December 31, 1969 at 5:59 pm)
yeh you should put up a synopsis. ahh its such a mess of an illness its exhausting even trying to get my head around it!!!anyhow, my doctors have mostly sucked. my diagnosis is post-esptein barr 'depression'. wtf? is there such an illness? or did they just pull that one out of their asses? and I'm not even depressed!!!
mesufferer (December 31, 1969 at 5:59 pm)
some folks are switching that around when it's not supported by the evidence, by saying that CFS is psychogenic with a physical appearance instead of physical with (possibly) some psychological manifestations, depending on the hand each person is dealt. Makes me mad to see what's been done to any name they can give the condition, I'm probably going to pick up Osler's Web and give that a read, I'll post a synopsis here. Sounds like an interesting tale of how ME became CFS and CFS became fatigue:) |
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