Best Site for Myalgic Encephalamelitis (M.E.) sufferers YET!

[heather]

Hello to all fellow sufferers,
There are two thoughts as to whether CFS and M.E. are the same condition.
Check out this site ahummingbirdsguide .com Best explained so far by a fellow sufferer. I have had M.E. for 20 years.
See what you think?

Keep safe,
Heather

[albeit]

I have not searched for news on ME for years as it was a fruitless effort
from 86 onwards, of always being put down by Doctors, and people during the height of my severe 9 year ordeal at the time: now in it's 23rd year. I learned how to 'mask' and 'isolate' and look 'okay'. I was a single mother of 3 and no family to support me emotionally or
monetarily. I 'know' if I had help in the beginning I would be more well today then I am. Or if I had information at the time. What I do know was that every insurance I had including the medicare disability plan in Canada, does not, did not support ME a word I did not learn for many years. It incensed me to think that fibro mylagia was considered the same (but a symptom of) and acceptable, but Dr's and people made it the catchall of the last decade. Iwas and am stuck to the belief it was a secondary symptom. ....and a dramatic severe one too. I was the princess who could not sleep on the pea fairy tale version.
I too can tell you the exact day and hour ( a happy productive time) I was struck and devastated by a viral ME)- Of course I was immediately sent to a psychiatrist!! Alas he could not find me depressed but they put me on 'at risk' anti depressants hoping it would help with sleep.
All else followed over the years right through the total allergy symptoms that finally recorded the day I had to be resurected from a near fatal elective surgery - a surgery of necessity due to extreme hormonal changes that caused hemorraging. It doesn't matter my ordeal, it's just that all these years later no one, not even Dr's has or have input towards helping me through.
It has been humiliating to say the least of one who was very prideful and hopeful, that I would get better.......ha!!
But after the near death experience - my brain got worse and I had a very high i.q. That was devastating - I struggle with it as if I had a stroke but no one offers rehabilitation or even a neurological study as to where I function now - I just continue to embarrass myself. That also made me partially deaf..and background noise makes it even harder to focus. Of course the eyesight is erratic too.......always adding more need to stimulate adrenal........
I have waited 19 years for a brain scan to prove that it has mis-functioned. My sister got one in 86 and they concurred it was MS - and thus she got all the help she needed. She does not have MS in my opinion she has a very mild case of ME -
I know at least 5 people from our area that came down with the virus/illness the same month!!

I eventually during a long term crash ended up in bankruptcy just 1 year
short of obtaining my small pension - a pension that now allows at least shelter for me. - not great shelter but a roof over my head. The bankruptcy was and is the greatest removal of pride to date and if insurance agencies I paid for weren't so obsessesed with not doing their due worth had just covered me for short periods of time - during severe crashes.......It would of made wellness and avoidance of financial crisis
possible. Instead I stressed myself more and more trying to sustain life.

I went through a period after that of cardiac testing.....and the specialist said only his intuition sensed a heart attack about to happen and to be careful - not the scientific ,but it was reading the articles in a hummingbird dialogue that explained - they should of re-tested - 24 to 48 to 72 hour intervals for a better diagnosis.
I am not the best advocate to explain to a Dr or persist - I am usually too tired for the visits and the begging you have to do and not one consistent physician for my age group as in a 'family Dr.' - just walk in clinics. I give up...and do the best I can on my own.

I was just about to start looking for work as I feel I am coming into a sustainable time again after 2 years off - but I can see my progressive illness not benefiting from that as I am degenerative especially as I age.
But the severe financial aspect of supporting myself and all the interests I have without help are restricting, isolating and emotionally 'sad'./
For the first time in all these years I pray it does not turn to depression.
Some how things have to get better - that has always been my hope.

I had in front of me a great life and try as I may I can't get 50% or more of it working since 86. And I tired, I really tried. I don't go to Doctors anymore as in 'what is the use'. I only have myself to count on and small joys but I accumulate them to be thankful for.

Bless all that worked on the 'a hummingbird' site for the information and recounts and references and may I wish you a miracle in the years to come as it is the only thing one can count on, certainly not medical, scientific and more so POLITICAL.
I still remember several scientists admitting when they administered
the polio vacinnes in the 50's there is a 'known' link and high association with inproperly incubated vacinnes that caused a known risk factor to 125,000 canadians getting a mutated form of polio virus the next time it swept and concurred many did in 86 - 87..........known as the yuppie flu.

But that documentary was 1996 and the Alberta ruling against insurers who scoffed at CF never mind ME etc. was not, is not widely published or acceptable.

we are at the mercy of the ignorance - nothing else.

I live each day to the best I can be under the circumstances and am proud
to know there are many people such as yourself working towards spreading hope, knowledge and etc. to those of us affected. It is not only us who are affected but those 'close' to us too - as in the realm of my children, it changed their lives too.

[IAnH]

ME is Anglicised CFS. This has produced so much confusion and defensiveness. One is a symptomatic descriptive name the other (ME) an attempt at a causative descriptive name. Neither are very descriptive or totally accurate. CFS being a "syndrome" describes a widely varying symptom set. Eventually a new name will be devised based on causation

[alicewoolf]

I hate that Hummingbirds website. I went on it a few weeks ago and it scared me rigid. Never again. I don't want to be told that I might die of this illness whatever you want to call it, M.E. or CFS, its all awful.