Added: Nov 21, 2008

From: AHummingbirdsGuide

Duration: 6:17

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.com/whatisme.htm

Channel: News

Tags: activism  advocacy  cfids  cfs  cfs/me  encephalomyelitis  me/cfs  myalgic  severe 

Rating: 4.78 (36 ratings)    Views: 9983' favoriteCount='28    Comments: 25

kaazoom Says:

Nov 21, 2008 - I relateto so much of what you say. I am fortunate because I still have some mobility. I know what you mean by talking on the phone, it is so difficult to maintain a conversation without visual ques, I lose track of what has been said, and find it a mental strain. Thank you for sharing your story.Paul

flenithganthry Says:

Nov 21, 2008 - Ah Jodi! My heart breaks anew when I consider all of this... I am about to take on the "establishment" over the death of my husband who was killed by so called modern medical practices...different...but devastating still... you are such a brave bold person and your work is more valuable than anything you could have done... I just do still hope for you that small miracles happen...small ones are still goodies.

medsman101 Says:

Nov 21, 2008 - great stuff, jodi, stay bravepaul, liverpool , uk

aspTim Says:

Nov 21, 2008 - You poor thing, I know what you feel like. I'm in bed most of the time myself.The only thing that has helped me has been a good doctor who prescribes me Methadone for the pain.. It seems that this illness has something to do with the chemicals in the brain, and I personally (Although I'm not a doctor) believe it's something to do with lack of the pain chemicals we normally have.. I hope you are ok and get more help than you are getting.. God bless you from the US. Tim

stillwaterguy04 Says:

Nov 21, 2008 - Unless it's an immediate family member, it makes me nervous to talk on the phone. I will procrastinate for days before making a business call. This disease impacts EVERYTHING

RAWRAMP1 Says:

Nov 21, 2008 - just found this site on M.E.C.F.S.brilliant,ive suffered with it over 20yrs now and would love to hear from fellow sufferers.pete

H4NDCRAFTED Says:

Nov 21, 2008 - I was a happy 23 year old, busy well and then M.E.I was happy even though I was ill, but it is the rubbish ignorant treatment I have had that is destroying my soul , not M.E.It is very real as real as the flu as real the ground you walk on. I was well happy and for no other reason other than I got a virus..I got M.E.What part of that does the medical profession not understand :eyesroll:The professionals in the UK should be embarrassed about the way they deal with people with M.E .

H4NDCRAFTED Says:

Nov 21, 2008 - Thanks for sharing. It all sounds too familiar by far. I used to have serious problems being able to concentrate enough to speak to people.I can manage about 40 mins of intense convo now.I wish you well.'you look well though' thats a joke btw ;)

vivianaheck1 Says:

Nov 21, 2008 - Well done for being so eloquent and informative about M.E. and thanks for putting the energy into doing the video. You are a beautiful young woman and I pray that your health with improve soon.Fellow M.E. sufferer

lordrisingham Says:

Nov 21, 2008 - I wish the entire medical community would take a look at your videos and website. Thank you, I wish you the best, and stay brave.

Nemi133 Says:

Nov 21, 2008 - You are an amazing woman, Jodi! It is sad that so many resourceful human beings are bedbound and housebound due to M.E.I've said to myself: "Imagine what we could do if/when we get well, or even better." You manage to do it regardless! :)Thank you for your many contributions to our cause!All the best,Rachel

htael111 Says:

Nov 21, 2008 - Hi Jodi, Thank you so very much for sharing your terrible illness with us. I also suffer from CFIDS/M.E. I have been decimated by this too.I appreciate your courage. I will pray for you.Thanks, Hal

26mae1987 Says:

Nov 21, 2008 - hi, i have cfs/ME to and your stoy is so much like mine my friends want to come round and see me but i always cancel cause it makes me ill! and i love to draw but my wrist swell to much! i had to drop out of college it effects me so much, that ive also become anorexic! which also sucks! but you are coping so well your very strong x

luminescentfeeling Says:

Nov 21, 2008 - Well done for posting this Jodi. No doubt the 'CFS' fools are laughing at us both now they have done their CBT/GE. Hopefully there is a God and they will all burn in hell for hijacking our illness and ruining any chance we would have had of a life. Keep it up. x

magdalene74 Says:

Nov 21, 2008 - Thank you... my ooh so loving doctor has "diagnosed" me with CFS because i have all nine symptoms he was told to look for ... nevermind the fact that i have a good nine more symptoms that put me squarely in the ME catagory... primarily because he has never heard of ME....and the fact that he cant be bothered to look at the cardiac findings done when i was on medicaid

amyhar Says:

Nov 21, 2008 - 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

angelsolace Says:

Nov 21, 2008 - 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

xxxsusserxxx Says:

Nov 21, 2008 - 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.

chronichell70 Says:

Nov 21, 2008 - 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).

CillRos Says:

Nov 21, 2008 - Please don't give up.

CillRos Says:

Nov 21, 2008 - 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.

marilynmagnificent Says:

Nov 21, 2008 - 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.

FynFlyte Says:

Nov 21, 2008 - These symptoms are very similar to Post Polio Syndrome.

AHummingbirdsGuide Says:

Nov 21, 2008 - 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!

Macmador Says:

Nov 21, 2008 - 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.