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How does Myalgic Encephalomyelitis affect my life?

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This video looks at some of the ways that my life is affected by severe Myalgic 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 an additional level of suffering also comes from the (politically and financially motivated) confusion between M.E. and the fictional disease category of 'CFS.' It is important to be aware that Myalgic Encephalomyelitis and 'CFS' are not synonymous terms and should not be used interchangeably, and that 'fatigue' is not a defining feature of M.E. nor even an essential symptom of M.E.CFS was created in the 1980s in the US in response to an outbreak of what was unmistakably M.E., but this new name and definition did not describe the known signs, symptoms, history and pathology of M.E. It described a disease process that did not, and could not exist. The fact that a person qualifies for a diagnosis of 'CFS' (a) does not mean that the patient has Myalgic Encephalomyelitis (M.E.), and (b) does not mean that the patient has any other distinct and specific illness named 'CFS.' Every diagnosis of CFS -- based on any of the CFS definitions -- can only ever be a misdiagnosis. The bogus disease category of 'CFS' has undoubtedly been used to impose a false psychiatric paradigm of M.E. by allying it with various psychiatric fatigue states and various unrelated fatigue syndromes for the benefit of insurance companies and various other organisations and corporations which have a vested financial interest in how these patients are treated, including the government. For more information on why the bogus disease category of 'CFS' must be abandoned, (along with the use of other vague and misleading umbrella terms such as 'ME/CFS' 'CFS/ME' 'CFIDS' and 'Myalgic Encephalopathy' and others) see: The misdiagnosis of CFS, Why the disease category of 'CFS' must be abandoned and Smoke and Mirrors. The distinction must be made between terminology and definitions.For more information on all aspects of M.E. see: http://www.ahummingbirdsguide....

Channel: News & Politics
Uploaded: May 22, 2007 at 2:49 pm
Author: AHummingbirdsGuide

Length: 06:17
Rating: 4.78
Views: 9333

Tags: activism  advocacy  CFIDS  CFS  CFS/ME  Encephalomyelitis  ME/CFS  Myalgic  severe  

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Video Comments

Macmador (September 16, 2008 at 12:39 pm)
I sympathise completely with you all. I have suffered from both M.E. AND Crohn's Disease since at least 1994, and they have claimed my job, my hobbies (I can hardly draw or read), my social life, and my mental health. Every day is one long nightmare of fluctuating energy, depressive fits, bowel pain and - most of all - the sheer anger and frustration of being denied a normal life, and of being passed over by the medical community.
AHummingbirdsGuide (August 2, 2008 at 9:24 am)
Yes, some real similarities there for sure, due in part no doubt to the fact both are enteoviral diseases. M.E. also has a handful of unique symptoms and pathology not seen in PPS as well of course, but yes, they are certainly similar in some ways!
FynFlyte (August 2, 2008 at 12:26 am)
These symptoms are very similar to Post Polio Syndrome.
marilynmagnificent (July 23, 2008 at 1:42 am)
Thanks for this. I'm going to look at your website. Scared at the moment cos in the U.K. the government are apparently going to 'crack down' on people claiming sickness benefit. Could do without the stress.
CillRos (July 9, 2008 at 2:08 am)
My M.E. was also made much worse by (wilful) medical ignorance. None of my symptoms have been investigated or treated, and I was and still am treated with hostility. I want to thank you for your wonderful website.
CillRos (July 9, 2008 at 1:59 am)
Please don't give up.
chronichell70 (May 21, 2008 at 2:15 am)
Hey Jodi, you are amazing. I corresponded with you about 1year and a half ago, I went to recover to about 90%, but then I relapsed and I'm housebound/bedbound pretty much in the same place that you are. I'm 32, was training for a triathlon when I got sick. There is no worst disease than this. I think eventually M.E will take my life (by my own hands).
xxxsusserxxx (April 23, 2008 at 6:13 am)
Thanks JODI..So great to see you here on YOU TUBE. So hard to explain the truth to people about this illness..YEAH it is scary.
angelsolace (March 21, 2008 at 4:26 pm)
Thank you so much for posting this Jodi, you are so brave to post it, and it may not feel like it, but you do make a difference in this world. Your website is awesome, and you should be very proud. Sending you big hugs from one ME sufferer to another. Amy xx
amyhar (March 11, 2008 at 5:52 pm)
Bless you Jodi hun. I too have ME and it's not as severe as your own experience but I really do undestand where you are coming from. I really hope that things do get easier for you. xx
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