Saturday, May 25, 2013
Gaudy Gloriosa
Tuesday, May 14, 2013
The Wilderness Settlement
Lost alone in vast wilderness
blasting winds casting me past
one withered trunk
looking like the last withered trunk
another or the same
barely discernible in blizzard blindness –
yes, I remember that
it was all that bad,
that bad
and more
do you remember?
till we beat our fists and howled
curses against any surface
withered trunk
frozen ground
our own skulls
available to take
the pounding of our helpless rage –
how we found one another
sheer dumb luck
on that cold frontier
through vast blasting unknown
stumbled
one to the next
grabbed hold of the next
clung together
do you remember?
to form a colony was bliss
the occasional dispute inevitable
but together
never again alone
our survival depended
one to the next
on the comforting compromise
of
settlement.
(for my comrades in illness)
Thursday, February 7, 2013
Myalgic Encephalomyelitis ("cfs") Patient Continues Hunger Strike
To:
kathleen.sebelius@hhs.gov, margaret.hamburg@fda.hhs.gov,
janet.woodcock@fda.hhs.gov, sandra.kweder@fda.hhs.gov,
howard.koh@hhs.gov, ash@hhs.gov, 511bobmiller42@gmail.com
cc: Senator Diane Feinstein, Senator Barbara Boxer, Representative Mike Thompson
Long-time ME/cfs patient Robert Miller from Reno, Nevada began a hunger strike on January 29th.
Already severely ill, he is undergoing this painful and debilitating protest to call attention to the shocking neglect by government health agencies of millions of people suffering disabling pain with this disease.
Miller began his hunger strike in advance of a recent FDA decision to disapprove a medication, Ampligen, that could salvage countless lives, allowing a return to productivity for people currently totally disabled. The strike extends beyond the fight for Ampligen approval, however, and encompasses the international issue of neglect and harm to ME patients.
Is it really necessary to shame into action, agencies pledged to address public health issues? Sadly, yes. Here in the US, our Centers for Disease Control and NIH have not only neglected but actively harmed M.E. patients since the 1980s:
- millions of dollars earmarked for ME were diverted and misspent.
- the disease was given the denigrating name "cfs" and patients were mocked in internal memos.
- the disease was relegated to the ghetto of Women's Health although it effects millions of men, women and children, causing pain and disability comparable to that in terminal cancer or late stage AIDS.
- government websites published misinformation including treatments that were not only useless but harmful to ME patients.
- ME patients continue to receive neglectful or harmful treatments and lower levels of funding and support than similar or less-severe illnesses.
- ME researchers have been discouraged and even hounded away from their studies in an academic and scientific atmosphere belittling and defaming their efforts.
- all this neglect and mismanagement has occurred in spite of strong evidence that the disease is communicable.
In the US and elsewhere, ME patients have been forcibly institutionalized, including young sufferers taken from their parents, and subjected to mistreatment regimens that have resulted in their more severe illness and even death.
The very identity of the disease or diseases encompassed in a diagnosis of "cfs" or ME is in question, due to the paucity of designated funding and the poor spending of what research dollars are allocated, often on inappropriately designed studies. A diagnosis of "cfs" may as easily fall upon a patient infected with Lyme disease, or suffering from Gulf War Illness, Fibromyalgia or a range of underfunded, understudied and therefore ill-defined Neurological, Endocrine and Immune Disorders.
Sufficient appropriate studies simply haven't been undertaken to even identify the entity or entities wreaking havoc in millions of lives and causing uncounted deaths. We die of heart disease, cancers, leukemia and suicide twenty years younger than average and the cause of our death is usually misreported, going unlinked to the root illness.
Shame on our health agencies. Their ignoring of this illness allows it to spread farther and ruin more lives daily. This horror must be stopped.
We demand that you take this disease as seriously as it takes our lives. Robert Miller is suffering terribly, today, to bring public attention to - and outcry against - decades of suffering by millions of patients.
Sincerely,
Kathleen Fatooh
Additional actions:
- please write a note of your own, long or short, to the agencies in the TO section above and your own representative
- tweet about this and retweet Robert's wife, CourtneyA999
- share this and other notes, videos, statuses and updates on Robert Miller's hunger strike
- join this Facebook "event" to support his effort and check in for updates and further actions feel free to - -
- copy/paste and send as your own, copy it to media people, share, distribute widely - I am SO SICK after the effort of writing this, it's all I can do for now, so I totally get it if you can't write one of your own but please do share. Thanks!
cc: Senator Diane Feinstein, Senator Barbara Boxer, Representative Mike Thompson
Long-time ME/cfs patient Robert Miller from Reno, Nevada began a hunger strike on January 29th.
Already severely ill, he is undergoing this painful and debilitating protest to call attention to the shocking neglect by government health agencies of millions of people suffering disabling pain with this disease.
 |
| Robert Miller, ME activist on hunger strike. |
Miller began his hunger strike in advance of a recent FDA decision to disapprove a medication, Ampligen, that could salvage countless lives, allowing a return to productivity for people currently totally disabled. The strike extends beyond the fight for Ampligen approval, however, and encompasses the international issue of neglect and harm to ME patients.
Is it really necessary to shame into action, agencies pledged to address public health issues? Sadly, yes. Here in the US, our Centers for Disease Control and NIH have not only neglected but actively harmed M.E. patients since the 1980s:
- millions of dollars earmarked for ME were diverted and misspent.
- the disease was given the denigrating name "cfs" and patients were mocked in internal memos.
- the disease was relegated to the ghetto of Women's Health although it effects millions of men, women and children, causing pain and disability comparable to that in terminal cancer or late stage AIDS.
- government websites published misinformation including treatments that were not only useless but harmful to ME patients.
- ME patients continue to receive neglectful or harmful treatments and lower levels of funding and support than similar or less-severe illnesses.
- ME researchers have been discouraged and even hounded away from their studies in an academic and scientific atmosphere belittling and defaming their efforts.
- all this neglect and mismanagement has occurred in spite of strong evidence that the disease is communicable.
In the US and elsewhere, ME patients have been forcibly institutionalized, including young sufferers taken from their parents, and subjected to mistreatment regimens that have resulted in their more severe illness and even death.
The very identity of the disease or diseases encompassed in a diagnosis of "cfs" or ME is in question, due to the paucity of designated funding and the poor spending of what research dollars are allocated, often on inappropriately designed studies. A diagnosis of "cfs" may as easily fall upon a patient infected with Lyme disease, or suffering from Gulf War Illness, Fibromyalgia or a range of underfunded, understudied and therefore ill-defined Neurological, Endocrine and Immune Disorders.
Sufficient appropriate studies simply haven't been undertaken to even identify the entity or entities wreaking havoc in millions of lives and causing uncounted deaths. We die of heart disease, cancers, leukemia and suicide twenty years younger than average and the cause of our death is usually misreported, going unlinked to the root illness.
Shame on our health agencies. Their ignoring of this illness allows it to spread farther and ruin more lives daily. This horror must be stopped.
 |
| Robert Miller elicited a promise for action from President Obama. We are waiting... |
We demand that you take this disease as seriously as it takes our lives. Robert Miller is suffering terribly, today, to bring public attention to - and outcry against - decades of suffering by millions of patients.
Sincerely,
Kathleen Fatooh
Additional actions:
- please write a note of your own, long or short, to the agencies in the TO section above and your own representative
- tweet about this and retweet Robert's wife, CourtneyA999
- share this and other notes, videos, statuses and updates on Robert Miller's hunger strike
- join this Facebook "event" to support his effort and check in for updates and further actions feel free to - -
- copy/paste and send as your own, copy it to media people, share, distribute widely - I am SO SICK after the effort of writing this, it's all I can do for now, so I totally get it if you can't write one of your own but please do share. Thanks!
Monday, June 18, 2012
Saturday, May 19, 2012
In which I wish my neighbours would go camping.
Granite under skin: gratefully, sun-warmed. Chill mountain water dries off fast, the print of my hand soon shrinking away. Around my hand, the glints: if I close one eye they come into focus, freckles of mica. As cold lake water evaporates from my warming body, dominant scents shift from wet skin and wet rock, back to Jeffrey pine. The breeze carrying it raised goose bumps when I was soaked, brings relief now that I'm dry.
Suddenly the granite slope, the pines and the breeze, vanish.
Next door, the loud neighbour is tormenting the little kid again. When hollered at to stop crying, naturally the child cries louder. I wish I could tell them, not just to please keep it down, but to raise it up: to raise the level of everyday life to something worth recalling in detail, should they ever become chronically ill and spend hours with nowhere to go but their own minds.
If you're well enough to go into a forest or up a mountain or whatever place makes your heart glad, go now. Soak in every sensation and store them up. Brush your hand across the granite and keep that texture. Keep the pitch of the hawk's cry and the particular gold of the marmot's fur. Whether the Jeffrey pine reminds you more of vanilla or of butterscotch, keep its exact interaction with your own singular senses, because that may someday be the very thing you need to recall.
Fantasy too can be a shelter from pain, but it's a bittersweet treat, because it presumes a someday in which dreams can come true. If your condition is deteriorating, you know in your stubbornly desiring heart the somedays you create in fantasy can never have a place in reality, and that realisation can be more disruptive than the loud neighbour. No matter how perfect the detail of your imagined world, it crumbles when confronted by reality, and aren't there already enough tears, without weeping for the things that can't be?
Then there are all the things that can happen, the things that need to happen, the list of things to do when the energy to do them returns. I can spend some time thinking ahead to them and doing whatever part of the future it's possible to do now in my mind, but that's a small part and usually amounts to endless lists and needless worry.
So I go back. A moment here or there, sometimes a moment I can place exactly within the framework of past events, sometimes a moment typical of a period of my life, or sometimes a moment that stands on its own---it doesn't matter as long as it's full.
I love my mind and its way of lingering on details, making each one perfect. I've stored up so many riches to get me through this time of poverty. When present reality shrinks to the size of my bed, and me alone in it, and the pain in me, I can recall an infant asleep in the curve of my arm, the sound of her gentle breathing, the downiness of her hair and the sweet smell of the top of her head, like honey and warm kittens. I can pore now over the details of then and know how fortunate I am.
I would far rather be up and working hard, doing the things that will help launch that same daughter into an adulthood full of the best possible moments of her own, but in these stuck times when I can do nothing of help to anyone, but survive until energy returns, it's only me and my mind.
Suddenly the granite slope, the pines and the breeze, vanish.
Next door, the loud neighbour is tormenting the little kid again. When hollered at to stop crying, naturally the child cries louder. I wish I could tell them, not just to please keep it down, but to raise it up: to raise the level of everyday life to something worth recalling in detail, should they ever become chronically ill and spend hours with nowhere to go but their own minds.
If you're well enough to go into a forest or up a mountain or whatever place makes your heart glad, go now. Soak in every sensation and store them up. Brush your hand across the granite and keep that texture. Keep the pitch of the hawk's cry and the particular gold of the marmot's fur. Whether the Jeffrey pine reminds you more of vanilla or of butterscotch, keep its exact interaction with your own singular senses, because that may someday be the very thing you need to recall.
Fantasy too can be a shelter from pain, but it's a bittersweet treat, because it presumes a someday in which dreams can come true. If your condition is deteriorating, you know in your stubbornly desiring heart the somedays you create in fantasy can never have a place in reality, and that realisation can be more disruptive than the loud neighbour. No matter how perfect the detail of your imagined world, it crumbles when confronted by reality, and aren't there already enough tears, without weeping for the things that can't be?
Then there are all the things that can happen, the things that need to happen, the list of things to do when the energy to do them returns. I can spend some time thinking ahead to them and doing whatever part of the future it's possible to do now in my mind, but that's a small part and usually amounts to endless lists and needless worry.
So I go back. A moment here or there, sometimes a moment I can place exactly within the framework of past events, sometimes a moment typical of a period of my life, or sometimes a moment that stands on its own---it doesn't matter as long as it's full.
I love my mind and its way of lingering on details, making each one perfect. I've stored up so many riches to get me through this time of poverty. When present reality shrinks to the size of my bed, and me alone in it, and the pain in me, I can recall an infant asleep in the curve of my arm, the sound of her gentle breathing, the downiness of her hair and the sweet smell of the top of her head, like honey and warm kittens. I can pore now over the details of then and know how fortunate I am.
I would far rather be up and working hard, doing the things that will help launch that same daughter into an adulthood full of the best possible moments of her own, but in these stuck times when I can do nothing of help to anyone, but survive until energy returns, it's only me and my mind.
Thursday, May 17, 2012
Here's to Your Health
Not feeling like a zombie: it's so glamourous, dahling.
And you know, feeling marvelous is only for the healthy or the wealthy -- preferably, both.
Gurgling laugh and the sound of champagne pouring.
Actually...
We, the sick, and especially the sick-and-poor, spend a lot of time feeling like zombies. Not only do our bodies feel like living death, painful and exhausted, but our minds are numbed. Some illness, like mine, cause cognitive problems, and any chronic pain interferes with clear thinking. And of course, dealing with the fallout of illness further saps our energy.
Available energy is the difference between living, and living death.
That's why I'm emitting a puff of vapour in the photo above. It's cannabis vapour, and it's helping reduce my pain. Pain reduction makes more of my energy available for doing things, for being a living person and not a zombie.
Now, five years ago when I became ill, I didn't think that I was going to try medicinal cannabis. I had of course heard of it for cancer and glaucoma and a handful of assorted conditions, but I knew it wasn't for me.
Why? Because I knew it made people groggy and stupid. In my personal experience, back in the day, it made me, personally, tense and hypersensitive, and a bit groggy.
Having an illness that makes me slow, low on energy and foggy-brained, I was sure that cannabis was exactly what I did not need, so when a doctor brought it up during a visit with my daughter, we nixed the notion. Even if it relieved some pain. I knew it would just make me worse off in other ways.
Well, I was wrong. A few months ago, I tried cannabis and felt less pain, more energy, and could even see better.
Cannabis has changed a lot since the days when it made me slow and stupid. Breeding from pedigreed stock and experimenting, growers have developed strains that provide different effects for different patients. You can learn a lot about the strains by searching cannabis strain guide.
If you search for example for cannabis cancer or cannabis AIDS, cannabis MS or cannabis chronic pain, you're probably going to come across the terms, CBDs and CBNs. I'm far from being an expert, so I won't try to tell you all about these, but they're a whole range of active compounds.
Most of my readers probably already know more about this than I do. But if you don't, then you can learn from articles that explain that various compounds in cannabis, psychoactive THC and anti-inflammatory CBDs and CBNs, have been found effective not only against pain but against inflammation and even reduce viral load in AIDS patients.
Since becoming a medical cannabis users I've met people who have found relief via cannabis from conditions ranging from epilepsy to depression, anxiety, chronic back pain and more. The cannabis is not making them lazy and stupid: it's making them able to be at least part-time contributing members of society.
It's rescuing them from zombie-dom. They're alive again and that's glamourous.
Why do I bring this up now? May is ME and Neuro Immune Disease Awareness Month and after three deaths in my family in three months, several other calamities and major life events, plus with an impending house move, I was feeling more Zombie than ever. So Zombie, in fact, that I had to cancel my Zombie Action event I had scheduled for May 12 in San Francisco.
Nevertheless, with rest and cannabis and acupuncture and a dash of antivirals, I'm able to go grocery shopping, prepare meals, wash most of the dishes most of the time, care for my kids, and write a little blog post.
Tonight especially, I wanted to write a post that offered some sort of hope.
Today the news came out that yet another member of the Myalgic Encephalomyelitis community has been lost to suicide. He was 31 years old. He stood in front of a train.
Imagine that. It's not at all glamourous.
You don't have to ask yourself what might have saved him: it's obvious. Relief: real care for his pain and exhaustion. That could have saved him. Having his life back. Maybe not via cannabis in his case (although maybe) but there are many other things I'm willing to bet his doctors didn't try, because they were experimental and not approved, because they were expensive and not covered by insurance, because they weren't legal where he lived, or all too common: because his doctors didn't know.
In other news today, yet another medicinal cannabis user, a friend of friends, has gone to prison for treating his pain. Judges can be as ignorant, as in need of education, as can doctors.
I'm fortunate to live in California, where I can legally grow, or obtain organic, high-quality cannabis in a variety of strains and forms from a licensed dispensary. It works so well, I have to remind myself to rest, and continue weekly acupuncture to keep my energy levels closer-to -even with my pain-free-ness.
Some people serve jail time for using the only medicine that helps them, and in some countries some are put to death, and yet people continue to risk its use because for them, it works. There are even studies showing cannabis prevents some diseases.
Again, I'm not saying I'm sure it will work for everyone. But why not make it available to everyone, and let everyone find out for themselves? After all, drink can kill, yet every adult is free to try alcohol and see what it does for or to them. Cannabis doesn't kill, there is no established lethal dose, yet we aren't free to use it. Why not end prohibition of cannabis?
And just like with studies on Myalgic Encephalomyelitis, why not waste less money on psychosocial studies --- cannabis studies tend to have words like "disadvantaged youth," "at risk," and "predisposition" in them instead of "inflammation" and "remission" and "antiviral" --- and why not spend the money instead on biomedical research?
For May Awareness month I'd like to offer all neuro-immune disease sufferers the hope that you might find something out there that can help you, as I have with cannabis and acupuncture. It could be worthwhile doing a little more research, asking around, trying one more thing, waiting one more day to see what might turn up. The only thing deader than the living dead is the dead dead so please try to stay with us and find out what happens next.
As the move to end prohibition grows to include more and more patients, doctors and even law enforcement people, I want to lend my voice to the cause. I can't tell you much about the science behind it yet but I can tell you that cannabis is helping me tremendously, that I've gone from being certain it wouldn't help to knowing it does, and that there's no harm in letting people try. Please support compassionate laws.
That's all. This is dedicated to Win, Steam and AJ, MM and Phil and Stuart.
And you know, feeling marvelous is only for the healthy or the wealthy -- preferably, both.
Gurgling laugh and the sound of champagne pouring.
Actually...
We, the sick, and especially the sick-and-poor, spend a lot of time feeling like zombies. Not only do our bodies feel like living death, painful and exhausted, but our minds are numbed. Some illness, like mine, cause cognitive problems, and any chronic pain interferes with clear thinking. And of course, dealing with the fallout of illness further saps our energy.
Available energy is the difference between living, and living death.
That's why I'm emitting a puff of vapour in the photo above. It's cannabis vapour, and it's helping reduce my pain. Pain reduction makes more of my energy available for doing things, for being a living person and not a zombie.
Now, five years ago when I became ill, I didn't think that I was going to try medicinal cannabis. I had of course heard of it for cancer and glaucoma and a handful of assorted conditions, but I knew it wasn't for me.
Why? Because I knew it made people groggy and stupid. In my personal experience, back in the day, it made me, personally, tense and hypersensitive, and a bit groggy.
Having an illness that makes me slow, low on energy and foggy-brained, I was sure that cannabis was exactly what I did not need, so when a doctor brought it up during a visit with my daughter, we nixed the notion. Even if it relieved some pain. I knew it would just make me worse off in other ways.
Well, I was wrong. A few months ago, I tried cannabis and felt less pain, more energy, and could even see better.
Cannabis has changed a lot since the days when it made me slow and stupid. Breeding from pedigreed stock and experimenting, growers have developed strains that provide different effects for different patients. You can learn a lot about the strains by searching cannabis strain guide.
If you search for example for cannabis cancer or cannabis AIDS, cannabis MS or cannabis chronic pain, you're probably going to come across the terms, CBDs and CBNs. I'm far from being an expert, so I won't try to tell you all about these, but they're a whole range of active compounds.
Most of my readers probably already know more about this than I do. But if you don't, then you can learn from articles that explain that various compounds in cannabis, psychoactive THC and anti-inflammatory CBDs and CBNs, have been found effective not only against pain but against inflammation and even reduce viral load in AIDS patients.
Since becoming a medical cannabis users I've met people who have found relief via cannabis from conditions ranging from epilepsy to depression, anxiety, chronic back pain and more. The cannabis is not making them lazy and stupid: it's making them able to be at least part-time contributing members of society.
It's rescuing them from zombie-dom. They're alive again and that's glamourous.
Why do I bring this up now? May is ME and Neuro Immune Disease Awareness Month and after three deaths in my family in three months, several other calamities and major life events, plus with an impending house move, I was feeling more Zombie than ever. So Zombie, in fact, that I had to cancel my Zombie Action event I had scheduled for May 12 in San Francisco.
Nevertheless, with rest and cannabis and acupuncture and a dash of antivirals, I'm able to go grocery shopping, prepare meals, wash most of the dishes most of the time, care for my kids, and write a little blog post.
Tonight especially, I wanted to write a post that offered some sort of hope.
Today the news came out that yet another member of the Myalgic Encephalomyelitis community has been lost to suicide. He was 31 years old. He stood in front of a train.
Imagine that. It's not at all glamourous.
You don't have to ask yourself what might have saved him: it's obvious. Relief: real care for his pain and exhaustion. That could have saved him. Having his life back. Maybe not via cannabis in his case (although maybe) but there are many other things I'm willing to bet his doctors didn't try, because they were experimental and not approved, because they were expensive and not covered by insurance, because they weren't legal where he lived, or all too common: because his doctors didn't know.
In other news today, yet another medicinal cannabis user, a friend of friends, has gone to prison for treating his pain. Judges can be as ignorant, as in need of education, as can doctors.
I'm fortunate to live in California, where I can legally grow, or obtain organic, high-quality cannabis in a variety of strains and forms from a licensed dispensary. It works so well, I have to remind myself to rest, and continue weekly acupuncture to keep my energy levels closer-to -even with my pain-free-ness.
Some people serve jail time for using the only medicine that helps them, and in some countries some are put to death, and yet people continue to risk its use because for them, it works. There are even studies showing cannabis prevents some diseases.
Again, I'm not saying I'm sure it will work for everyone. But why not make it available to everyone, and let everyone find out for themselves? After all, drink can kill, yet every adult is free to try alcohol and see what it does for or to them. Cannabis doesn't kill, there is no established lethal dose, yet we aren't free to use it. Why not end prohibition of cannabis?
And just like with studies on Myalgic Encephalomyelitis, why not waste less money on psychosocial studies --- cannabis studies tend to have words like "disadvantaged youth," "at risk," and "predisposition" in them instead of "inflammation" and "remission" and "antiviral" --- and why not spend the money instead on biomedical research?
For May Awareness month I'd like to offer all neuro-immune disease sufferers the hope that you might find something out there that can help you, as I have with cannabis and acupuncture. It could be worthwhile doing a little more research, asking around, trying one more thing, waiting one more day to see what might turn up. The only thing deader than the living dead is the dead dead so please try to stay with us and find out what happens next.
As the move to end prohibition grows to include more and more patients, doctors and even law enforcement people, I want to lend my voice to the cause. I can't tell you much about the science behind it yet but I can tell you that cannabis is helping me tremendously, that I've gone from being certain it wouldn't help to knowing it does, and that there's no harm in letting people try. Please support compassionate laws.
That's all. This is dedicated to Win, Steam and AJ, MM and Phil and Stuart.
Thursday, April 12, 2012
April Memos: Bring May Demos!
May is NeuroImmune Disease Awareness Month.
Chronically ill people the world over will push ourselves into painful relapses, preparing for and executing demonstrations to raise awareness of our misunderstood and in many cases underfunded, debilitating diseases.
It'll be great if some healthy people will stand up with us, this year. Who doesn't know someone with one of these diagnoses?
This year we celebrate the 20th annual 12 May Awareness Day for ME, uniting with neuro-immune disease patients around the world to promote our events at www.May12.org in hopes that our many events, from a one-person strike:
even a bed-bound photo demonstration:
to a video on your own or with other NID sufferers:
to a huge Lyme Disease rally in Washington, DC:
... can combine to be heard and get some response, like the united chanting of the Whos: We Are Here!
Please join in. Here are a couple of resources to help you out.
Check the links at www.may12.org to find an event near you. If none of the events listed are near you, keep checking: more are being added within the coming week. Or, if there isn't an event near you, please plan one. It can be as simple and small or as complex and huge as you want.
Here are some pointers for planning, from Rivka Solomon: Rivka's How-To Guide for ME/CFS Demonstrations can also be used to plan demonstrations for Gulf War Illness, Autism, Fibromyalgia, etc., or for all Neuro-Immune diseases, combined.
Use this Global Event Page on Facebook to hook up with people and events in your area. Folks are sharing artwork to use as banners and in Facebook timeline covers, advice on how to get a government proclamation recognising NIDs, letter templates, and all the frustrations and triumphs of action.
You've got your memo. Bring on a May demo.
Chronically ill people the world over will push ourselves into painful relapses, preparing for and executing demonstrations to raise awareness of our misunderstood and in many cases underfunded, debilitating diseases.
It'll be great if some healthy people will stand up with us, this year. Who doesn't know someone with one of these diagnoses?
* Addison's * Alzheimers * Autism * Biotoxin * CFS * CRFS *
* Crohn's * Epilepsy * Fibro * GWI * Lou Gehrig's * Hep C *
* Lupus * Lyme * ME * MCS * Mold * MS * Myofascial Pain *
* OI * Parkinson's * POTS * RSD * UC *
This year we celebrate the 20th annual 12 May Awareness Day for ME, uniting with neuro-immune disease patients around the world to promote our events at www.May12.org in hopes that our many events, from a one-person strike:
 |
| Rivka Solomon protests for clean blood at Red Cross HQ |
even a bed-bound photo demonstration:
 |
| Lilan Patri, unable to leave her bed in Berlin, brings the protest home complete with police caution tape. For an album of 6 photos with captions see here. |
Giles Meehan produces his ME videos in the UK, and made this one with
contributions from patients around the world.
to a huge Lyme Disease rally in Washington, DC:
 |
| Lyme patients and supporters at the White House in May 2011 |
... can combine to be heard and get some response, like the united chanting of the Whos: We Are Here!
 |
| The Whos get by with a little help from a friend in Dr. Seuss's Horton Hears a Who |
Please join in. Here are a couple of resources to help you out.
Check the links at www.may12.org to find an event near you. If none of the events listed are near you, keep checking: more are being added within the coming week. Or, if there isn't an event near you, please plan one. It can be as simple and small or as complex and huge as you want.
Here are some pointers for planning, from Rivka Solomon: Rivka's How-To Guide for ME/CFS Demonstrations can also be used to plan demonstrations for Gulf War Illness, Autism, Fibromyalgia, etc., or for all Neuro-Immune diseases, combined.
Use this Global Event Page on Facebook to hook up with people and events in your area. Folks are sharing artwork to use as banners and in Facebook timeline covers, advice on how to get a government proclamation recognising NIDs, letter templates, and all the frustrations and triumphs of action.
You've got your memo. Bring on a May demo.
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