Monday, June 18, 2012

Bawdy Verse, Body Worse

"You're bawdy! Is your temple?" they cried out.
At least, that's what I heard them to have said,
And that's why all my charms I try to flout
religiously, although I'm semi-dead.

I once was bawdy. Now my temples throb
and so I find I'm slow to make response
and build a temple worthy of a bawd
when illness bars me from such hallowed haunts.

"Your body is your temple," did they cry?
Then like the Parthenon it's just a shell
of former glory, feeling fit to die
but fit for blessed bawdiness? Like hell.

The temple of my body is a shell.
I fill it with what makes me feel well.

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.

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. 

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?
* 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.
to a video on your own or with other NID sufferers:
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.

Monday, April 2, 2012

There There, Now, Oakland


This swiftly slammed out riff is for you, Oakland,
because you've had one of those raiding and killing days today.


Gertrude Stein, photographed by Carl Van Vechten, 1935

Gertrude Stein, most unkind, spoke of Oakland the oft-quoted line:

"There's no there there."

Lake Merritt alight, from a collection here.
Ornamentation of Oakland, from Oaktown Art

I guess she didn't know Fairyland or the cormorants and black crowned night herons, the string of lights ringing Lake Merritt glowing in a winter's fog, the eucalyptus-and-elephant-poo scent of the Zoo, the angels and bowls of fruit adorning downtown buildings, Housewives Market for lemon custard ice cream or andouille or fresh smelts, or hundreds of other marvels in what ought to be a paradise.




 
Oakland: in those days when I lived there: my toddler played at playing golf in Snow Park or chilled in her stroller on the path around the lake or helped me choose fresh greens on Chinatown sidewalks, rode the web of Anansi at that Fairyland and climbed a golden lion at that Zoo, longed for a saxophone in House of Woodwinds' shop window, marveled in the Paramount Theater at her first favorite film (Robin Hood with Errol Flynn and the Mighty Wurlitzer, huzzah!), ate that lemon custard ice cream from Housewives and demanded of me on the spot a song about the black crowned night heron which of course not to disappoint a two year old I composed on the spot ---

Black Crowned Night Heron at Lake Merritt from Nancy's Bird Journal



Saxophones at House of Woodwinds
--- oh, in those days of living next door to Crack Hotel on one side and Demolition Dust on the other side and hearing each night the pounding pulse of the clubs til two and the screeching and crashing and fighting of the club detritus til three and when the street fights broke out and the woman screamed in terror the cops never showed but they were there in multiples another night having a rooftop chase right into our building's trashy little garden where they put a perp up against the tree to frisk, so copshow, they were there alright, and my two year old wide eyed watching them and all their metal --- in those days I surely never thought I would one day be writing a valentine to you,
Oakland.


Oakland, city of cormorants.
Photo by Tadashi Tsuchida Photography





A paradise you once were to the toddler who knew the building near the swings and slides to be a castle, who made snail discoveries in the botanic garden and koi discoveries at the museum, who threw smelts to the cormorants to watch them dive and fly underwater or catch the smelts smartly out of the air and oh! Do you remember the pigeon man, and the tortoise man, there by the lake?









A paradise you could be to anyone, anytime, with your place in the sun and convenient bay harbor, your sheltering, wooded hills and your wonderful variety of humans, but for some reason, dear Oakland, you always get the shit kicked out of you.

Today was just another such shit-kicking day.


Richard Lee, Founder and
Horticulture Professor
Oaksterdam University


This morning, despite the protection of California state law, US federal drug enforcement agents raided Oaksterdam University, its cafe, its gift shop, its classrooms, and confiscated the hell out of its evidence, and also visited the home of and arrested its founder Richard Lee.









Federal Agents at Oaksterdam this morning.
Photo from KTVU coverage
While the Oakland Police were busy standing around observing, on call as unnecessary backup for the DEA and the US marshals, while all that law enforcement was busy making sure that no vicious state-law-abiding students could learn how to provide medical cannabis to patients, not far away, a gunner had a shooting spree at a small religious college, killing seven people and wounding I-never-heard-how-many more. Because cops don't prevent crime; 
people prevent crime.  


Shooting site, Oikos University, by Ryan Phillips at OaklandNorth

Yeah. That was Oakland today.
There's
the there there.


There, there, Oakland. There there; don't cry. Or cry: go ahead and have a cry: you've earned it over and over again. Sob for the senselessness, and then, when all your sobs are dry, do what you always do: take to the streets.




CBS News photo: Federal agents turn their backs on protestors.


Occupy those streets and cleanse them with peaceable protest and sanctify them with chanting, and keep on occupying them until you have made in them the paradise you always knew, deep down, you really are.

There, there.

Oakland.



Update: Here's a petition to sign, asking for an end to the costly raids on dispensaries.

Monday, March 5, 2012

How Not To Die and Other Useful Information

Whoa, look at all those people looking at ME.

I just learned how to check statistics on my blog. About time, eh? Blame the fog brain.

What I learned, aside from the fact that you're reading this from the US, UK, Germany, Russia, Netherlands, Canada, Australia, France, Ukraine and Brazil, is that the most viewed post is the one that mentions Nortriptyline, Butterbur and Feverfew, and that the searches that bring people here are often for information on herbs and medications.

I'm so sorry! It's not that good a blog for solid medical information. I'm just another patient, ricocheting between clinics and agencies, trying to find anything that helps for me and my also-M.E.-having kid. I started the blog when a friend said my stories were so bizarre I should share them. So if anything this is maybe just a good place for rants on the bizarre underworld we enter when we become chronically ill.

I don't have any medical expertise. After a few years of illness and research I can share my personal experiences and a few good links, though, so here's the important information I do know, and some of it might help you not die. It has helped me not die.


Give This To Your Doctor

In fact, give this to all the doctors you saw since you got sick, who shuffled you from one GP or specialist to another. What they all need to know is contained in the International Consensus Criteria. It's a good starting place for understanding what little is known, about what's up with M.E..


Psych Pharmaceuticals

I can tell you from my own personal experience and from friends' hard stories as well: antidepressants are NOT good for us people with M.E. or Fibromyalgia. You can try them---I did it mostly to please the doctors so we could get on with some real medicine. It's not worth it. Nortriptyline, Amitriptyline, Prozac, forget it. Horrible experience.  Prozac made my spatial perception all wonky, and the 'tryptiline twins made me intolerably tense.

Why do they prescribe psych meds anyhow, for a condition that's physical? I'll tell you why. Ju$t bcau$ thy £ik€ to h£p. Psych meds are very big business and somehow, they're always discovering new applications for their use.

So just beware, if you think you might try these. Adverse reactions can make folks suicidal. Most doctors don't know how extremely sensitive M.E. patients are to all pharmaceuticals, so they can easily start you on too high a dosage. And besides dosage, the choice of med is guesswork. They'll try you on one, ramp you up to higher doses til it's obvious it won't work, taper you off, then start you on another, until they stumble on something that helps or you opt out.

If you're depressed, you might want to try antidepressants. If you have a neuro-immune disease, there's no reason to expect antidepressants to help. Many people who are depressed get misdiagnosed with neuro-immune disease as there's some symptom cross-over, and then when the antidepressants work for them, the brilliant doctors and researchers say "Hey look, anti-depressants are helpful in cases of chronic fatigue syndrome!" When really what they had was a patient with depression.

The common wisdom on the difference is ---and sorry I don't recall where I picked this up so I can't give credit--- if you're depressed, you don't feel like doing anything, but when you get out and do something you feel better. Conversely, if you have M.E., you long to get out and do things so much that you push yourself, you go out, you do things and wham, you feel worse.



Herbs and Supplements

Sadly, butterbur and feverfew didn't help me either, nor did a long list of herbs I tried. But at least they aren't likely to hurt, in normal dosages, so maybe try them. They're supposed to help with migraines.

Here are some other herbal recommendations. I've tried all but the olive leaf, oil of oregano and cat's claw, and they didn't help. I'm not going to try olive leaf because it can lower blood pressure and mine, like many people's with M.E., is already low.

My former acupuncturist mixed up some Chinese Traditional herbs that helped, but I never could get him to write down the prescription so when I moved away I lost that resource. Goji berries seem to be a good thing for me. Also ginger. I'm trying DHEA now, and haven't noticed any improvement. At least it's cheap.

I'm supposed to try d-ribose and that stuff is pricey. I tried about one sixth the recommended dose and got no benefit from it but that's probably because I was skimping. No being a cheap-skate with those herbs and supplements, and of course your insurance probably won't pay for them.

Cannabis may be one of the best herbs for M.E. and Fibro. It has frequently been reported helpful for MS patients, and many other NID sufferers find that it's helpful, being as it's both an anti-inflammatory as reported by National Geographic in June '08 and analgesic as confirmed in a recent survey of PubMed articles. , but it's not legal everywhere, so fighting prohibition becomes one more struggle to add to our list, along with fighting for biomedical research on M.E and other NIDs.


I think magnesium maybe helps me, and maybe CoQ10, but you know, it's really hard to tell, since this illness flares and fluctuates constantly. For more and better ideas on herbs and supplements, probably the best thing I can do is refer you to Dr. Sarah Myhill's wiki because she is a doctor, and has much useful information.

When you can handle a bath without drowning, throw in some epsom salts and that's another way to up your magnesium.



Anesthesia: Handle With Care!

The anesthesiologist attending my routine, out-patient procedure promised me he wasn't going to put me under. He was only going to give me a very small amount, to relax me. Did I mention wham, earlier? Well once again, wham.

I warned him that M.E. patients are highly sensitive and he said "yeah, yeah..." and they were lucky to revive me. Went into the light, saw the loved ones, didn't get a t-shirt but I remember exactly how difficult it was to get back into my body and take on again all of its pain.

At least now I know how easy dying is. But it might not be what you really want. So please print out and use the information at the following links. Show it to your anesthesiologist or dentist, and hope to be believed.

NJCFSA info includes Wallet Card re: Anesthesia

Myhill on Anesthetics

Also, please note that because of the heart problems associated with M.E., we should not have the local anesthetics used in dentistry that contain adrenaline (or as it's called in the US, epinephrine). They add epinephrine into the stuff called Novocaine because it's a vasoconstrictor: it shrinks the blood vessels to keep the drug in one small area around the tooth being worked on.

'Caine's with no epi work just as well, but as the anesthetic travels off into the rest of your body, it becomes weaker around the tooth, so you'll need a few more shots of it during a long procedure. The nice thing is, with all that anesthetic in your blood, you may feel fairly pain-free for a while after dentistry.

There's a great article on the no-epi thing in the JADA but they just made it subscribers only, so tell your dentist to get it from here:

Postural orthostatic tachycardia syndrome: Dental treatment considerations


CBT and GET, STFU

There are lots of links I can grab on the dangers of exercise, and the dangers of consigning M.E. patients to psychiatrists, too.

If you do get well from CBT and GET, then once again you were probably misdiagnosed and what you had might have been depression. M.E. patients are harmed by exercise, and only mildly helped by psychological support, much as a cancer patient might be helped by good counseling.

Dr. Speedy's got some links for you here and that's a good place to start.


Acupuncture

It's the one thing that has worked best for me, of everything I've tried. I don't know if it has kept me from dying but it sure has kept me from feeling like I'm fixin' to die.

If you are looking for an acupuncturist, and you're an M.E. or Fibro patient, then you are probably looking for an affordable acupuncturist. Good news: one of the doctors who has helped me the most, works in a community acupuncture clinic, and there's a network of coop community clinics all over the U.S., so if you're in the states just search their map and you'll find someone who works on a sliding scale.

If you can't find a clinic near you through that link, then find an acupuncturist nearby, get a recommendation from a friend, and ask the doc if they'll work on a sliding scale. Many will if you just ask.

More good news: the other doctor who helped me most is both an MD and an acupuncturist, so my sessions with her are covered by my insurance. Maybe you can luck out that way, too. It's becoming more common for MDs to have training in various therapies.


Co-Morbidities


It sounds so morbid, "co-morbid," but it just means other illnesses you've got along with the main one(s). Finding them and getting them treated, can help.

For example, some people with M.E. and/or Fibro have celiac disease. There's a test for it. If you come out positive, you cut the gluten from your diet. That's not easy (I was relieved when we came out negative for celiac) but once you've been gluten-free for a while you could feel much better.

Another common co-morbidity is yeast or fungal infection. Again, you can be tested. My doc didn't even bother testing for this one but going by my high score on a fungus questionnaire Rx'd me a course of antifungals. Thought I was going to die. Watch out for the Herxheimer reaction if you take these things. Also, as with all medications, remember our sensitivity and ask your doctor to start with a lower-than-normal dose.

She put me on 200 mg Fluconazole daily, and after one dose I clung to my bed while the room spun and all my stomach's contents made a swift departure. I called and told her I was going off the stuff and fortunately, she prevailed. She told me it could be a Herx' reaction, keep taking it, but okay to cut back to half the dose.

The next few days were a shade less hideous, and after a couple of weeks the upturn began. See, the Herx' happened because there was fungus stored in my system slowly increasing my illness, and the antifungal released it all into my bloodstream suddenly, so I got way sicker suddenly. Then, as the fungal stuff cleared out of me, my health improved markedly.

Sadly, fungus wasn't the only thing wrong with me. I still have M.E.. But I'm much better, on the whole, without the fungus. Just be sure if you're herxing, you give it a while and you drink a ton of water to flush out that garbage.

There are lots of other possible co-morbidities, more than I know or could list if I did know them, but the ICC linked way above, under "Give This To Your Doctor," gives some ideas of other things to test for, as does Dr. Byron Hyde's slim volume, Missed Diagnoses: Myalgic Encephalomyelitis and Chronic Fatigue Syndrome. With luck you've got something in your individual mix that's treatable, so you can improve.



Contagious? Helping Other People Not Die


Editing to add this: the cause of M.E. is at this time unknown, but there are many indications that there may be a contagious factor. Whether it's a viral trigger or a retrovirus or what, there might be something we need to be careful not to spread around.

As reported in the thoroughly-researched Osler's Web by Hillary Johnson, there have been numerous cluster outbreaks recorded. These include outbreaks among schoolchildren, the members of a symphony orchestra, and nursing staff at a hospital, so it seems the disease may be communicable through casual contact.

That's why I'd suggest we should behave as if we've got something contagious and take any precautions we can, not to infect others through anything from donating blood to careless sneezing.

This is something lots of patients don't want to publicise as they're afraid of being treated more as pariahs than we already are, but I feel it would be irresponsible not to say it. If I caught this thing from someone, I wish they had taken better precautions. If there's a chance I could pass it along, I'd rather be aware and try not to.



Blog and Forum

After the searches for meds and herbs, the next most popular search that brought me readers was for blogs or forums. I've stopped being much of a forum-dweller when internal drama shook up a forum or two, and as for blogs, I read them when I can. One of these days I'll figure out how to embed the links to my favorites over there to the right side.

For the time being, though, I can recommend both the blog and the forum hosted by Dr. Jamie Deckoff-Jones. X Rx Blog and Forums might not be a life-and-death solution, but then again, the way we search for information on our much-misunderstood diseases and long for the company of people who "get it," sometimes it does feel like life and death.

Note that Dr. Deckoff-Jones is among the patients who have tried antiretrovirals for M.E. --- she tells all about that in her blog --- but do note her warning NOT to try this at home. Seriously, not without the guidance of a doctor who has experience with antiretrovirals, meaning, probably an AIDS doc. There you go: that's one more way not to die.

Outside of forums, many of us have managed to build up a great community of Facebook NID friends whose knowledge and good humour keep me alive, so that's what I've been doing instead of hanging out at forums, but I probably wouldn't have found all of those wonderful people were it not for the forums we once frequented together.

I'm planning to try to frequent the X Rx Forum for a backup, and the fun of the occasional chat room blither, though that's usually too hard for me to follow. It did used to be some fun to hit a chat room when some big news came out. Chat chat crash.

Speaking of blither, that's about what this post has become and as it's a no-edit day, that's it for now. There was something else I meant to say... there always is. I hope what I've managed to hammer out is more helpful to those of you who came here looking for something more medical, less political and social. I'll try to pass on more useful links as I encounter them.


I leave you with Camper van Beethoven's cover of O Death, in hopes he'll spare you his labours.




I lock their jaws so they can't talk,
Stiffen their legs so they can't walk,
Close their eyes so they can't see;
The chill you feel, it comes from me.


(Sounds more like an NID than death to me, but I plan on sticking around anyhow.)

Monday, February 27, 2012

12 May Global Day of Action

[update - for more 12 May resources go here]

Slamming this one out with no edits - I'm all wrote out for now, but I want to disseminate some info right away, to give you time to plan.

Got a neuro-immune disease? I hope not.
Know someone who has one? Probably.
They include --- well, here. Just read the back of the t-shirt.

If you have one of these diseases you've probably heard ...
  • "You don't look sick."
  • "Yeah, well, I don't feel so good either."
  • "Can't you just control that with _______?"
... but you know the pain, and you know that what these diseases need is funding for research.
NID's are invisible and misunderstood diseases; it's hard to get research funding.
People just aren't aware of the tremendous need.

Time to read the front of the shirt:

Okay, now you know what to do.
No?
Then I'll tell you.
Do something. ANYthing. Create an action and make it speak louder than words.
When you know what you're going to do on 12 May for NIDs, tell us about it.
We'll pool our efforts and make 12 May 2012 one huge global action.

Now, all the links below are works in progress, because of course we still need to add you in there.
I'll be drawing with chalk on the sidewalk in San Francisco. Joni will be leafleting in Des Moines.
I think Mary might be presenting a statement of grievances in Washington, DC.
Carole's action will be in Edinburgh or Newcastle Upon Tyne.
Monique in Belgium, Cathy in Spain, the list is growing.

Some will go to a nearby government health office, some will set up an information table at their local market, and others will create a photo or video protest from their couch or sickbed.

Wherever you are, there's an action you can do. It can be whatever type of action you are inspired and able to create: flash mob, rally, press conference, picket, video... your call. And it can be focused on one NID, or several, or all of them.

You need not be sick to help raise awareness. In fact, we sickies would love to have some strapping, energetic wellies helping out. Okay, even some weak, low-energy wellies. Everyone's welcome.

We'll be selling the t-shirts to raise funds in hopes that we can help defray the costs of flyers, signs, fake blood or whatever is required to pull off as many Actions as possible.

Please join in and help us make the 20th International Awareness Day so big, that in another 20 years we'll actually have not only awareness but some acceptable treatments and even cures.

Here's the Facebook Event Page. and here's the web site. I hope to see you there.




Sunday, February 26, 2012

There's an agency that takes care of that.

In sheer disbelief at what was happening, I drafted this post a couple of years ago, in another county than the one where I now live. I held off on publishing this, because I was afraid of compromising my benefits. I'm less afraid now, not because there's less to fear, but because there's nothing more scary than being silenced.

I want to share this now, as it's all too typical of the current atmosphere toward disability, assistance and work, everywhere. In fact, assumptions that disabled people could do more, and that there are already plenty of services available, provide a foundation for killer cuts to essential services. Here's how I ran into those assumptions a couple years back:

I drove over two hours round trip, to go to the closest office of social services in the county I'd just moved to. I'm disabled by ME and Fibromyalgia, so travel and sitting in an office were really huge challenges, but there wasn't any way anybody could come to me, or for the appointment to be held in a more accessible location.

I brought all the requested papers, including the ones that say I'm disabled.

The worker asked when I had last worked, and what was my last job title.

I replied that I worked as a grant writer most recently, and had been gradually slowing down due to my disability which began in May of 2007, until, in June 2009, I was unable to work any longer, at all.

So she was clear that I couldn't write grants now.

Yet she asked me, incidentally, could I write grants for a local nonprofit I'll call "Krips on Skis."

I told her I could not, as I was now disabled, but I would gladly refer them to the consulting firm for which I formerly wrote grants.

She told me they wouldn't pay anybody to write grants. She actually bridled, saying firmly and with pride that Krips on Skis is a 100% volunteer organization.

So she was asking me, although I am too ill to work as a grant writer to support myself and my children, and am barely getting by on public assistance and disability, would I donate my time and work as a grant writer, a thing I'm unable to do anyhow, plus do it for free?

I seem to have that right so far. Yes, that seems to be what she was asking me.

Our appointment wound down. The paperwork I'd received in advance had stated that we'd take an hour but we took closer to three. Finally when I was nearly too exhausted to think at all, she asked me, did I have any questions.

I asked if there were any services in this county or the adjacent one, to help disabled people with basic necessities. I cited as an example the Center for Independent Living in my former county, where advocates helped disabled people find housing, food banks, in-home assistance and other such services.

No, she told me, there were not any such agencies in these counties.

Okay, so, there's Krips on Skis which would be glad to help me go skiing if I had the energy to do so and was perhaps an amputee, but there is no agency to help disabled people with, say, tax preparation, or referrals to utility assistance, or, like I said, food banks. The cupboard was near bare.

She did tell me there were no food banks but that I could ask churches. No specific denomination, just "churches."

Ever since the tanking of the global economy, programs have been cut back and eliminated, and the bar has been raised to qualify for assistance. There have been less funds everywhere to help the poor, elderly, ill and disabled, yet people---even social workers---go on believing that "there is help out there."

Furthermore, doctors and chronic pain specialists can confirm that a patient has a disability, and even the Social Security's government specialists, a very tough bunch to convince, can confirm that, and yet many people---even social workers---go on thinking that people with disabilities can somehow do more: complete paperwork, attend appointments, do volunteer work.

The county where I now reside has a larger tax base and thus better services than the county where I experienced that astonishing failure to connect, on the part of the social worker, but the same attitudes are typical everywhere. I know that friends all over the world have to struggle to explain to social workers, the meaning of "need," and of "disability."

And everywhere, we encounter people who assume that there's an agency that takes care of that, despite the evidence before their eyes of homeless people with no shelter and sick people with no medical services.

In the UK the assumptions have gotten so far out of control, the private contract agency Atos have judged someone "fit to work" who was dead of their disabling disease within a week of that determination, and under Workfare, people with disabilities and others in need have been made to work for free or lose their benefits, so corporations that show huge profits can get their shelves stocked for free which means they can cut back on their hiring, or they simply divert the government funds for this program into training for existing employees.

Maybe more austerity measures should be aimed at the wealthiest citizens and corporations, but there isn't an agency for that.

Updates on the UK's Workfare can be found here. Boycotts are helping. You can start with McDonald's (and here's why), worldwide. That is, unless you're down with eating burgers that are flipped for free by contagious krips like me.

Friday, February 24, 2012

Crushed Beneath the Medicine Wheel

Corporate scheme to co-opt international Medical Marijuana market aims for billions in profits.



In a scheme they think capable of making billions, a US corporation not only plans to market a delivery system for medicinal cannabis, but also hopes to cut out small time farmers and private growers by introducing prohibitive protocols through state health departments.



First, for those readers who are surprised at my recent drift from a focus on my own illness, Myalgic Encephalomyelits, let me explain that in the course of following the medical story of ME, I’ve learned things I wish I didn’t know about the big business of medicine, about government agencies charged with public health, and about the pharma vendetta against alternative healing practices.



Our pain is their payday. In a recent post I told how I learned about the market research firms that prey upon patients by posing as patient forums, soliciting personal stories, and selling the data they glean from our suffering.



Today’s story is one of cold avarice on a far grander scale.



The corporation is called MMDS: Medical Marijuana Delivery Systems LLC, marketing its medical cannabis delivery system through its “Medicine Wheel” subsidiary.  They hold this patent  for the Tetracan  transdermal patch: like Nicoderm, but it delivers cannabinoids instead of nicotine. They advertise it as providing all the benefits of medical marijuana, without the health-destroying smoke.



The principal is Jim Alekson, a multi-firm entrepreneur about whom, more later. So, isn't that a great thing, this Tetracan patch that is promised to hit the sales counters at dispensaries in the second quarter of this year?



Tetracan publicity ignores the fact that there are many other delivery systems already available, as alternatives to smoking. A patient can consume cannabis in baked goods, dissolve a lozenge under the tongue, take tinctures and other extracts, and get the health benefits without the “risk” of smoking.



Right: I don’t use unmotivated quotation marks, so, “Risk?”



Tetracan publicity also ignores this study
recently published in the Journal of the American Medical Association. Twenty years of research have proven that smoking moderate amounts of marijuana daily over years actually improves pulmonary function in comparison not only with tobacco smokers but with healthy non-smoking controls. Theories as to why this is, suggest the credit may go to biophysics: the exercise of pulling cannabis smoke into the lungs, holding one’s breath, then exhaling; or biochemistry: the anti-inflammatory action of cannabis.



Though JAMA itself didn't emphasize the point, other authors picked up on and publicized this fact that marijuana smoking apparently improves lung capacity. In this article  for instance, one of the study's authors is quoted:

We don’t know for sure,” he said, “but a very reasonable possibility is that THC may actually interfere with the development of chronic obstructive pulmonary disease.

Nevertheless, MMDS is pushing the benefits of their transdermal patch as a healthier alternative to smoking, via its “Medicine Wheel Project.”

Here is their business plan.

Page through it and you’ll see some amazing things, like, yes, here are the billions, on page 12:
TOTAL GROSS REVENUE: $2,843,540,662
Now, to make even more money by paying less than the usual costs of launching a pharmaceutical product, they’re cleverly trying to play both sides of the game with government agencies, avoiding FDA requirements by representing the patch as an alternative therapy…

The TETRACANTM Patch does not require U.S. Food and Drug Administration approval because it will be marketed as a holistic therapy in the same manner as Medical Marijuana is marketed and sold through Medical Marijuana Dispensaries across the United States. (Plan, page 7)


…while simultaneously acting to keep marijuana’s status different from any herb like basil that anybody could grow in their garden, or even a medicinal herb which patients could be licensed to grow,  as it is now in Medical Marijuana states: MMDS plans to manipulate the law to further their monopoly beyond the patented patch and into growing rights. The Plan states, on lucky page 13,
There are no Rules, Regulations or Protocols governing the manner in which Medical Marijuana is cultivated, harvested or processed in any of the Medical Marijuana States or the District of Columbia.


The Medicine Wheel Project LLC, an associate company of MMDS, plans to introduce Growing Protocols to State Health Departments as it begins to organize the Medical Marijuana Industry under one umbrella organization.
Emphasis added because I'm aghast at the blatant intent to influence state health departments to serve corporate ends.

So that’s where politics play a role. Remember the name Jim Alekson? He’s the principal in the patch company, and heads up many intriguingly related business ventures.


Here he is playing politics with a friendly article. Touting the jobs to be created by the Medical Marijuana industry, Medicine Wheel has been blogging up the UK cannabis movement, engaging in friendly chats on a UK forum, and Alekson got his blog reposted on the official website of single-issue, pro-cannabis UK political party CLEAR (formerly Cannabis Law Reform).


CLEAR leader Peter Reynolds appeared on the scene only recently, taking over the party with a massive vote of nearly forty members, and changing its name and direction, while censoring and even ousting anyone who questioned his policies. More on that story can be read here and here.



Meanwhile, back in the USA, it could prove interesting to delve into the names and natures of politicians and perhaps tribal leaders supporting Alekson’s scheme. Medicine Wheel is an interesting name for the project, with its mellow, First Nations overtones. But this Kimosabe Connection isn’t the only business headed by Alekson. His interest in things tribal appears to extend beyond image, or even medicine. Spinning the wheels to make some deals...


For example, it’s also about  real estate develoment of tribal lands  ...


…within the scope of his broader real estate goals as the Alekson Group


…plus, a huge contract to provide electricity to tribal lands


….within the broader scope of Energy Pointe Partners which is yet another Alekson company...


…and if it’s not enough of a monopoly to own a piece of politics, a patent, growing rights, land and energy, there are also the industrial scale hydroponic greenhouses mentioned on  Alekson's profile at Linked-In.


A friend suggested that all this might be empty scheming with no money behind it, but it seems from Alekson's creds on pages 40 - 49 of his stock offering that he really is accustomed to running with the big boys.

Let me repeat the big numbers quoted for the transdermal patch trade alone:
TOTAL GROSS REVENUE: $2,843,540,662
Add real estate, greenhouse construction, energy supply and a growing monopoly, and potential profits are plenty motivation for all the behind-the-scenes political manipulation implied in corporate documents, and more.


None of this vast corporate empire is in the best interest of patients, of course, who typically suffer from the doings of Big Pharma --- not even Big Pharma in Alternative Medicine clothing is actually helpful to medical cannabis patients.

As it currently stands in a Medical Marijuana state like my own, patients can buy, carry and use medicinal cannabis and cultivate it for their own use, and it can also be grown by licensed farmers with an agreement to supply it only to licensed dispensaries. Patients here can obtain high quality, organic cannabis in a variety of strains specifically developed with high levels of the compounds that best address their specific pain, inflammation or other health issues, from a safe, state-licensed dispensary; or simply grow their own.


Everyone from the patients who require those varied strains to the growers who developed the strains, to the general public which is asked to criminalize actions because they run counter to corporate profit, everyone stands to lose, if Medicine Wheel gains its ends. Cannabis helps so many conditions from cancer to MS to Alzheimer’s, plus is enjoyed by recreational users with far less danger than alcohol or cigarettes.

The battle against prohibition doesn’t end with legally-grown medicinal cannabis, and it can only be set back further by interference from a multi-billion dollar patent medicine show.
The ultimate objective of cannabis campaigning is to get cannabis beyond the medicine cabinet and into the mainstream as a healthy alternative to dangerous substances used socially and for relaxation, such as alcohol and cigarettes.



This could cost a lot of corporations a lot of money, but think what it would save taxpayers by abolishing the prosecution of all cannabis users.  Some 20 million American citizens have been convicted of marijuana offenses since 1937In 2005, alone, 800,000 Americans were arrested on pot charges, costing taxpayers over one billion dollars.

Now, whose pockets do we want to put a billion dollars into? Jim Alekson’s, or the taxpayers’?  And whom do we wish to see benefit from the health-giving properties of cannabis? Patients, or profiteers? We need to be vigilant, lest AgriCannaBusiness squeeze small farmers out of one more market, and lest patients be denied the right to grow our own few plants for personal use.

Note: since I first drafted this blog post, news has come out in Canada that shows the collusion of governments and corporations to keep cannabis profitable, as it’s currently playing out in interpretation and enforcement of Canadian law:
Health Canada is now in the process of consulting with the marijuana community to reorganize the program, and has proposed eliminating personal production licences and setting up a system of large-scale commercial growers. Established medical marijuana dispensaries were not mentioned in the government's new plans.
These are the multi-billion-dollar shenanigans we have to be on the lookout for, worldwide. Even if you get compassionate medical cannabis laws passed, the governments and corporations collude to make it impossible to grow your own or operate small growing operations that serve local dispensaries. The result: cannabis is just more Agribusiness and Big Pharma.
There's no deal, partner
Who's your real partner?
Could there be just a chance
That you've got some heavy clients?
...
Who'd ever think it?
Such a squalid little ending
Watching him descending
Just as far as he can go
I'm learning things I didn't want to know

...

Everybody's playing the game
but nobody's rules are the same.
Nobody's on nobody's side!


~ Chess, the Musical

Errata: Since publication I have been corrected regarding two items:
1. Peter Reynolds was elected by 23 votes, not nearly 40 as stated.
2. His single-issue party was known before he took over as the Legalise Cannabis Alliance, which name he changed to Cannabis Law Reform, and CLR is abbreviated "CLEAR."
My thanks to those who pointed out these mistakes.

Monday, January 16, 2012

Seven Blind Men, an Elephant and a Weasel


A Short Fable for Martin Luther King, Jr. Day

Seven blind men and a weasel checked out an elephant that was confined in a cage in the zoo.

Each blind man felt a different part of the elephant and came up with a different description of the animal.

The weasel asked the elephant, "how do you feel?"

The elephant replied that it was tired of being trapped in a zoo, tired of being felt up and probed by blind men, didn't care to talk to a weasel and would like to return to its former life in the jungle.

The weasel said, "Are you kidding? I would love to be the center of all this attention. You must be crazy."

And because the weasel happened to have psychiatric credentials, it was concluded by all that the elephant was crazy.

Because it was a mad elephant, it was necessary to keep it in solitary confinement until it ceased its irrational thought habits.



The moral of this story is, Let my people go!

Thursday, January 12, 2012

Patients for Sale

Beware: market research corporation masquerading as patient forums.

A lot of things could be called a Patient Forum. There are some set up by patients, for patients. Others are set up by organizations, for patients.

Still others are set up by blood-sucking leeches, for their own profit. Callously capitalizing on your catastrophes, they invite you in to tell your story, with an invitation to write in a "blog" like this one on M.E.

Leading questions invite you to divulge personal information, and the invitation is, oh, so sympathetic and full of suggestions of vague helpfulness.

With questionable punctuation because they're too cheap too hire a competent editor, and they think you're too sick to notice, they make yourself at home:

The forums allow you to interact with other people in your situation and share information and experiences. Thus helping you on your journey through your or a loved one’s medical problems and challenges.
There's something odd here, you might notice. A couple of things are more off than the punctuation.

For one, there's this odd paragraph inviting comment on the difference between M.E. and C.F.S.:

Interestingly the terms Myalgic Encephalomyelitis and Chronic Fatigue Syndrome (CFS) are normally seen as being synonymous but Sir Donald Acheson* noticed that CFS and ME may be distinct, however reference to this difference is very rare.  If you know more about this please do share your knowledge in the comments section below.
Wait though, you can't post any comments until you join something called "The Patients Voice."

Before that, there was the even odder pair of paragraphs about another thing to join, "The Patient Experience."

We have covered the subject in a couple of previous blogs including one about Medicalinsider – a CFS informational site (http://www.patient-experience.com/index.php/medicalinsider-chronic-fatigue-syndrome/).  Also a rather aging general discussion blog whose comment disappeared when we changed servers.  If you must you can find it here http://www.patient-experience.com/index.php/chronic-fatigue-syndrome-blog/.

 "If you must you can find it here?" A "rather aging" blog, and its "comment disappeared." Don't you wonder why its comment disappeared? I do. I wonder also, why do they say, "if you must?" Do we have a mole in there, planting odd turns of phrase to clue us in?

New comments have been added to replace the "disappeared" comments. (Disaperecido: disappeared, is an ominous word. Comments, opinions, efforts to communicate, disappeared in a mysterious move from one holding place to another.)

The new comments are heart-wrenching stories by real patients. Either they aren't, really, but are written by cynical marketers to lure you in and elicit your trust; or they are real true comments left by real true patients, in which case, they're made of real blood and tears that are being sold as market data, and you're invited to share (give away free) your thoughts, too.

Go ahead, contribute to this effort to help patients inform the medical community! Your efforts will be sold back to you as an expensive pharmaceutical, targeted to your exact patient profile, and sold to your doctor through information they've harvested about him in similar "blogs" and "forums" designed to reap the inside information of medical professionals, the same way they're reaping and selling patients' information.

Let's see what happens behind Door Number One, shall we?


In Step 1, they get your basic data: name, contact information, gender, number and ages of children, medical conditions of children, and/or age and medical condition of person for whom you're a caretaker.

Step 2: tell them every medical condition you have, from acne and aneurism, to zits and zoomorphism, so they can match you up with appropriate surveys.

Step 3: tell them where you go for medical advice.

Click the button to complete your registration and they'll try to send a confirmation email to the fictitious address you gave them to check it all out without receiving their spam.

As you finish the registration process they'll show you some photos of models posing as people. When I was a 60-year-old man named Fie Woh (wack the keyboard to create your new name) they showed me a photo of two women of about 60 with hideous makeup and styling.

I thought that was a little odd. I went back and became Fie Woh, the 21-year-old woman. She got an extra photo for some reason: two photos, one a 20-something woman with her presumable mom and the other a couple nearing retirement age and considering their financial options. You know them. You've seen their picture on the wall of your local bank branch.

I suppose marketing research has proven that 60-year-old men are interested in mature women made up to look like hideous old bags, while mature people---and her interaction with them, perhaps as family members---are relevant to the interests of a young woman.

We ought to see the picture of the mad cynic who dreamed up this site, on the wall of our local post office.

I want to share more I've found of this story so far, and it would be revealing to go ahead and make a dummy account from a dummy email address to get under their skin a little---three accounts really: one as a patient, one as a medical professional and one as a health care products client. I could count up the spam I receive in each account and try to calculate how much money they're earning from clients to compose and send so many badly-written emails.

(See, that's what I'm really on about, probably, right? You were thinking that, perhaps? I'm just jealous of some hack who earns a living writing what fills my junkmail box.)

I could have so much more fun in their Wonderland but I can't, right now. It's 3:00 am, I've had two hours' sleep and of course there are a thousand other things I should be doing instead of this if I must be wide-awake.

(Parenthetically, it's so unjust: while the sickness is stealing sleep and sapping energy, completely disabling us, the system simultaneously piles on the paperwork, and the sicker you are, the more paperwork there will be, until you're considering retirement on the wall of somebody's local bank branch, while a 21-year-old named Fie Woh watches you from her internet, and wonders what she will do, as caregiver for her ailing parents, children or self.)

So just real quick for now I'm going to give you a couple more of the interesting links and quotes, and then leave you, perhaps to return to this story later ... although there are so many others to tell, in other wee hours of the night, equally astonishing. Quickly, now, before I give out, here are leads to more of the Healthcare Landscape story.

There's this link: http://www.patient-experience.com/index.php/chronic-fatigue-syndrome-blog/ their same pitch as the M.E. "blog" (do they know what that word means?) but this time they're calling it "C.F.S."  Again, you are invited to register and comment.

There's this one: http://www.patient-experience.com/index.php/medicalinsider-chronic-fatigue-syndrome/ where you can connect to this one: http://www.medicalinsider.com/ where you learn this:

Health-Spy.com rebranded
a.k.a. , as of 29th January 2011 has been rebranded to Medical Insider (medicalinsider.com).


These guys used to call themselves "Health Spy." What a more honest name that was, sort of like "Blackwater."

Why is a company that has in its very name declared itself mostly interested in M.E. (before changing that name) using odd turns of phrase that particularly bait responses from people who are enthusiastic about explaining the difference between M.E. and C.F.S.? And why does it ask if they feel discriminated against?

There's only one reason these people do anything. There has got to be money in it.

The parent company is http://www.healthcarelandscape.com/ where you can enter as a patient, a healthcare professional or a client.

The health care professionals are sold the same menu as the patients---give us your data for free and we will sell it---albeit sold with a garnish of sesquipedalian jargon.

The Client tab is interesting: here, you can pay to receive the information given freely by patients and doctors.

We learn from the Coverage and Costs tab that they're operating on every continent except Antartica and Africa where there's no money to be made as a for-profit, and in the Client tab, under Patient Research, they describe for clients how the guinea pig farms or "forums" work:

These communities of respondents are pre-screened for medical conditions and degrees of severity. We also have details of Rx and OTC medication as well as demographic information. Our unique resource encompasses 400 therapy areas.
There's good money in demographics, and OTC medication too. Under Physician Research, the pitch reads, in far more medicotechnical polysyllablubber:

With over 40,000 respondents (and rising) across virtually every therapeutic area these panels will allow you to fulfill your qualitative and quantitative data collection needs across all research methodologies.

You have got to love research methodologies, when there's data to quantitate. It makes you feel smart enough to have earned that M.D. or maybe that research grant. So much more scientific than the way one should talk to patients, who are told:

It would be really great if you could share your story with us and comment on the experiences of others if you can.



Was I going too far, I wondered, thinking this site was a cynical exploitation of the chronically ill and our caregivers? I worried that I'd already nearly violated Godwin's Law, with allusions to Disappearing and Blackwater. Attacks on capitalism, accusations of more corporation than cooperation, and allegations of cynicism, are really unfair and small-minded of me when these honest people are trying to make an honest buck helping us by selling us to ourselves and everyone else.

I was already annoyed and ready to rampage when I saw the Wikipedia article on Myalgic Encephalomyelitis, earlier today. It must be carefully maintained by the NHS and the CDC. There you are, another conspiracy theory: NHS and CDC editors busy editing Wikipedia to keep neuro-immune disease in its place. It's as wild as my conspiracy theory that marketing corporations are out to make money.

Another project for another time: conspire to make and keep that Wiki thing on M.E. accurate.

As for M.E. versus C.F.S., my personal position is that ALL neuro-endocrine immune diseases by whatever inadequate name (all names being inadequate until a pathogen is positively identified) require increased research funding to develop better definitions, diagnostic tests, and while we're busy in the lab, what about effective treatments?

Research can be funded under the umbrella term of neuro-endocrine immune disease, and face it, most researchers are just going to be practical and apply for grants under whatever name the granting agency or foundation will support. Until science provides better name(s), quibbling about it only divides and conquers us.

I hate these crashes where the brain won't shut up. I'm going to try to sleep again, really, but I want to share one piece of news first.

My shrinking brain was energized by a very successful patient effort that hit the press these past few days. At last, inroads are being made against the UK's vicious cutbacks in disability benefits under the guise of reform, and the catalyst appears to be the Spartacus Report.


Congratulations to all the Spartaci who took part: People with disabilities pooled their efforts, providing case data, researching, writing and publicizing. The report was just released two days ago and already it has gotten results. The House of Lords defeated three government "reforms" that would further impoverish the disabled poor. The Spartacus report precipitated this victory in the House of Lords, demonstrated government's disregard for due process, and offered a brilliant template for action.

This is what we can do by cooperating, and focusing efforts on actions that have a chance of making a difference. Compared to Healthcare Landscapes' pathetic pitch to use the patient population for profit, I'm so gratified to see patients too smart to fall for propaganda, sharing data ourselves and using it ourselves in ways that actually improve our lives and chances of survival and improvement.
I hope this is just the beginning of what could become actual reform. Imagine people receiving respect and needed assistance.

On that happy note, I'm off to sleep. 


(Parenthetically, again, I do not advise using insomnia hours to complete official paperwork related to your benefits, or anything else that might have lasting impact, if you can't read and follow instructions. I could not, when I started writing this four hours ago, have instead completed bureaucratic paperwork because that uses a different and more shrunken part of my brain than does writing. I could not now that I've been thinking for four hours write the blog you have just read. I cannot, now, even read it. I could certainly not follow the three steps required by Healthcare Landscape to register and give them my data, which gives you a little idea of how the site passively culls the respondent population. Most of us, on many days, or after any activity, would not have the energy and cognitive skills to register or comment. Therefore their data are slanted, as are most studies', toward the less-seriously-ill and the misdiagnosed.)



* Healthcare Landscape doesn't bother telling you who this mysterious peer, Sir Donald Acheson, might be, but a quick Wikipediaing will tell you he was the doctor who coined the term "Myalgic Encephalomyelitis" in 1955.  He died 10 January 2010, a year and two days before this writing. He served 8 years as Chief Medical Officer of the UK, ending in 1991. During that time, officially-recommended medical practice on M.E. patients in the UK was, and remains since that time, more harmful than good. Why is that? Anyone want to tell me in the comments? Where did he stand on the nature of the disease he named, and why didn't Dr. Acheson stop the Psych Lobby Sectioners? Just wondering, history...

P.S. Patients Like Me is a similar marketing farm "forum," which might be more subtle in its approach but still looked fishy enough to fellow patient Carole Carrick to cause her to click a few links and learn that they're no real patient forum, with concern and caring for patients, either. Please, chronic illness victims, withhold your personal data from these vultures. Thanks, Carole, for the inspiration and information.