Some facts about Myalgic Encephalomyelitis (and me)

A brief description of some basic facts about M.E. and my experience with having M.E. for the last 13 years.

For more information on all aspects of M.E., and for transcripts and references, see:

http://www.ahummingbirdsguide.com/whatisme.htm

Category:

Nonprofits & Activism

Tags:

• Myalgic
• Encephalomyelitis
• M.E.

[Afrikitty]

4.

It took my doctor almost 4 years to stabilise me to a degree that I could live a relatively normal life. I got a life back, but was never able to do what I could do before this disease cut me down.

I now live in the USA . They INSIST that M.E is CFS! It is pointless telling my story here - who's going to listen now after all these years. It is 24 years later now, so I am not young anymore - here, it's the shrink and anti-depressants for you and your "addled" mind. NO thanks - not for me!

[AHummingbirdsGuide]

@Afrikitty Thanks for writing. It is so nuts isn't it, this mixing of a distinct neuro disease with 'CFS.'

(Yuppie flu is NOT the lay term for M.E. though!)

Am very gald to hear you have improced avfair bit, even if not totally:) Best wishes from Oz!:)

[Dannan1989]

Thank you.. one day I was perfectly healthy, but that night (and ever since that night) I was so very ill. I never understood this, neither did my family.. nor the Doctors.. its caused most of them to say I am lying. One Doctor diagnosed M.E, but then told me to try G.E.T. I am now housebound/bedbound and my friends, family, and (soon to be ex) fiance are being so cruel. I'm so lost and alone. Why don't they want to understand and love me?

[AHummingbirdsGuide]

I know, it is so hard to understand isn't it? How cruel our friends and family are...when we are so so ill for reasons out of our control:(( I am also now severe due to advice to exercise...has taken 10 years + to stop deterioriating and for my family to start treating me appropriately finally... I hope so much you will experience both these things and v soon. Please see the support groups page on my site if u need some more support okay? Hugs:)

[kaazoom]

I agree - CFS is a dustbin where people with hard to diagnose diseases are put. It is easier and cheaper for doctors to tell a patient they have CFS, tha it is to thoroughly investigate what is wrong. One test that can be done, but rarely is, is a SPECT scan. According to Dr Byron Hyde this is a almost definative test for ME. Adnormal SPECT scans are highly indicative that a person has ME.

[AHummingbirdsGuide]

Very true! Actually there are series of etsts that allow ME to be easily diagnosed right now!

A SPECT scan will be abnormal in 100% of M.E. patients, it's true, but it will also be abnormal in many othyer diseases. BUT the combination of tilt table tests, holter monitors, immune system etests, MRI scans and so on, really do diagnose ME with accuracy. Far more so than with MS even!

The problem is this info is suppressed, sigh! Great comments K, asnd thanks!

[JoanneShiller]

Great video Jodi,

(((HUGS)))) Yanna

[Afrikitty]

"Yuppie Flu" is the "lay" term for this disease. It was called Royal Free Disease first in England, named after a hospital where a massive breakout of this illness happened to many of the nurses.

The name Myalgic Encephalomyelitis describes this illness perfectly. Myalgic (painful) encephalo (of the brain) myelitis (inflamation) "Painful inflamation of the brain" And yes, it affects every single part of your body. I do not have the heart condition though.

cont....

[Afrikitty]

2.

I was forced to stop working after slugging it out for about 7 months after that. Even driving became a dreadful chore. I went undiagnosed for 4 (FOUR) years until I read an article in a magazine (of all things) about a condition known as "Yuppie Flu". I took the magazine to my doctor and after he had given me "what for" for reading "junk" in a magazine, he relented and sent me for the test to see if I had this disease. The test came back positive. I couldn't stop laughing.

cont...

[Afrikitty]

1

I am so grateful to have found THIS video. I am tickled at the Aussie accent. :-)

I was a VERY active, healthy, dynamic working girl until one fine day in July, 1986, I collapsed at work for no reason. I was taken to hospital, but released after 7 hours of observation. Exactly one week later, I collapsed again and was put into hospital for a week, while they ran every conceivable test in the book on me. I left that hospital an invalid with every single test showing normal.

cont....