12th May -DAY OF PROTEST

[Guest guest]

The text below was written in 2002 by Tom Hennessy

jr, the founder of May 12th, International Awareness

Day for ME/CFS, GWS, MCSS, and FMS.

We are six years later now and ME patients all over

the world are still suffering from this unbearable

disease without any hope for the near future; many

of them died and left their loved ones in distress.

The dark powers who conspire to hide the real nature

of this neurological, multi-systemic disease, are still

in power.

There is much to do in the next two years, before

Tom Hennessy's wish at the end of his article will

come true.

Pat Fero, executive Director of the Wisconsin CFS

(CFIDS-ME) Association. INC., who lost her son

because of ME, wrote in the same year:

*....I think we should call May 12th what it is, A

DAY OF PROTEST against the other 364 days that

we endure the ignorance and subvert the anger.

Maybe protest is the way humans have always

corrected injustice....*

PROTEST - by writing letters to governments,

newspapers, etc- post-card actions, by actions like

the RSM demonstration, by resigning one's

membership from charities, which are in league with

the dark powers, by refusing to take part in CBT and

GET *cures* - PROTEST.......

~jvr

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To Whom it may concern:

Regarding the 10th Anniversary of May 12th,

International Awareness day for ME/CFS, GWS,

FMS, and MCSS.

May 12th was started by RESCIND, Inc. a non-profit

organization started to get various competing groups

to stop throwing arrows at each other for ONE day

each year, and to put all their efforts into getting

recognition, research and basic simple, honest

respect for some VERY BRUTAL and Vicious diseases.

The term RESCIND means to " repeal, roll back or

abolish " . ...our WHOLE idea was to lobby, to protest,

and to fight back. Our very name IS our mission

statement " Repeal the Existing Stereotype about

Chronic Immunological and Neurological Diseases " .

OUR whole existence is to PROTEST! I have been

hassled by government officials at EVERY meeting i

have ever attended in the past 14 years. We are ALL

swimming up a Very polluted, very corrupt, and very

oppressive river of ignorance and contempt. and we

are just wounded minnows in a sea of sharks.

The late, great, heroine Helen Keller once said, " I

can endure being deaf, dumb and blind, but what i

can't stand is the incredible apathy of my fellow

man " .

MOST people don't care about anyone but

themselves. Sad but true.

We have a bunch of people who lie around all day,

without visible injuries, and who claim to be near

death on a regular basis. How do we protest that?

We asked for ideas. We asked people to make May

12th their own. We conjured up plans to have " sleep

in's " on the steps of Capitol buildings around the

world at least ONE day each year.

The Day of May 12th was picked for several reasons.

more detail can be found at our website:

www.geocities.com/capitolhill/4277 - then click on

the MAY 12th link. There are posters, sample letters

and media and government addressed, phone and fax

numbers, e-mails and other contact information. We

picked Ms. Florence Nightingale for NUMEROUS

reasons, and the time of year of her birthday was a

significant part of that.

My dad was the chief lobbyist for Getty Oil during the

oil embargos of the 1970's and i was witness to

literally BILLIONS of dollars being won or lost due

the signing of a bill or law by Congress. We have

examples of the same thing today. I bet you dollars

to donuts that the amount of money spent on

" anthrax " in the year 2000 was negligible. but the

amount budgeted for anthrax " research, prevention,

awareness and education " in NEXT year's budget will

be in the MANY BILLIONS of dollars!!! - Things CAN

change on a dime in the government, if the will, and

the public knowledge is evident.

So, as far back as 1988, i tried to urge Marc Iverson,

the founder of the CAA to put more emphasis on

" lobbying " in D.C. than in private research for the

cause and cure of ME/CFS. I felt that it would take

BILLIONS of dollars and many decades to completely

unravel the mysteries of these terrible diseases.

As happens with many movements, we disagreed.

and HE had the rich dad, and the big mailing list. So,

the CAA went one way, and RESCIND, Inc. went

another. It took until 1992, and the International

medical conference at Albany New York, that i

decided " enough was enough " and we needed to

fight back.

There is strength in numbers. So, i looked around

and found that there were groups of Sick gulf war

veterans with almost identical symptoms. and MCS

groups with overlapping symptoms. and FMS groups,

and chroic Lyme disease groups...and MS groups..and

Lupus groups..

So, i thought, if we can get some of these groups

together at least one day each year and LOBBY for

people with CHRONIC IMMUNOLOGICAL and

NEUROLOGICAL DISEASES.

Why did we pick Florence Nightingale as our symbol?

Ms. Nightingale was a nurse, a teacher, a women,

and a tireless worker for the rights of Crimean War

Veterans. She had given up a life of luxury and

helped create the first ever school of nursing and she

inspired the founding of the International Red Cross.

She was also taken ill at the age of 35 with a

" flu-like illness " and was bedridden for the next 50

years! AND her birthday was May12th, which is a

Spring day in the northern Hemisphere and an

autumn day in the southern Hemisphere.

From day one, we urged people to use their

imagination from table displays in local libraries, to

getting declarations and petitions signed and letter

writing campaigns. ..to even the OFFER to donate

blood at various blood banks. We NEVER urged

anyone to actually donate blood. BUT, we did urge

people to get copies of letters from the CDC

department of VIRAL and RICKETTSIAL DISEASES

that said, " people with CFS should NOT donate

blood " . and then call their local TV stations and alert

them that a dozen people with ME/CFS are " offering

to donate blood on May 12th " at the local Red Cross

Chapter and that the local media might want to

investigate. This sure sounded like a " protest " to

me..

I still think people should use May 12th in whatever

way suits them. I think that CAA made a mistake in

trying to separate " lobby " day from " awareness " day.

OUR group pushed LOBBY day from 1988. My dad

was the lobbyist. Marc's father was the chairman of a

large Steel company. We STRONGLY urge people to

protest. Florence Nightingale's WHOLE adult life was

one big protest!

Fight back as best you can, as long as you can. there

are more suggestions and links at

www.geocities.com/capitolhill/4277

Ultimately, we care most about getting better. NO

ONE else will care as much about us as we care

about ourselves. i Say fight back on May 12th, or

come up with a better plan. But just sitting at home,

or lying around complaining will not help ourselves,

or our sick friends. Thank YOU to all who have fought

back in ANY way they could for the past decade.

Remember the words of the German Philosopher

Edwin Schopenhauer. " All truth goes through three

stages:

* First, it is ridiculed. * Second, It is vehemently

opposed. * Finally, it is accepted as being

self-evident " .

Listen to your heart.

Do the best you Can.

and hopefully, on the 20th anniversary of

May 12th, we will finally have something to

celebrate!

Sincerely,

Tom Hennessy, jr.