A day of protest for the #MILLIONSMISSING from ME/CFS: May 25th, 2016

(not my shoes*)

(these are from Wikipedia)

I AM ONE OF THE #MILLIONSMISSING

I am being represented in Washington by a pair of my shoes.

Black high heels I used to wear to work, and when giving physics presentations such as the one I gave in the week of November 5, 1989, at the American Physical Society Annual Meeting of the Division of Plasma Physics in Anaheim, California.

I came back from that meeting with a raging fever; my doctor had antibiotics waiting for me, but I never got well again.

I was diagnosed with Chronic Fatigue Syndrome by an infectious diseases specialist. I was lucky; in those days getting a diagnosis was hit or miss, and the stories of people misdiagnosed for years were rampant even then.

Lucky – in the sense of knowing what was wrong. But the specialist and I looked at each other; he knew he was conferring a walking death sentence. I knew, even back then, that nothing would ever be the same.

It hasn’t been.

Research money allotted by Congress was diverted, many if not most doctors still don’t believe it’s real, and they still tell you it’s all in your head, to buck up and get some exercise, and stop goldbricking. The ones that acknowledge its existence have nothing to offer as a cure; treatments are palliative; and nothing lets you go back to what you were.

May they rot in whatever level of hell is appropriate.

It really shouldn’t be my job to figure out my illness, should it?

Back to Washington – and Seattle, and Melbourne, and…

Someone with far more energy than me – or their friends and families – has organized a Stand In. With the rubric #MILLIONSMISSING, they asked us to send a pair of our shoes, and a single choice of what we are missing the most in our lives.

I wrote: ‘I miss research physics.’

Someone from #MEAction will take these pairs of shoes (*I don’t have a picture of mine – that would have been too organized, and I had to work very hard to get my pair mailed as it was), and make a display so that the media and legislators have some idea.

There are millions of us worldwide – and somehow we have been left to cope with a huge public health disaster which robs society of the work we would have done – by ourselves.

At least, that’s how it’s felt to me. There are no specialists in New Jersey. There are a few in the nation, and many quacks, and many non-specialists doing the best they can dealing with symptoms. Some elaborate protocols that supposedly help – but require many months of elaborate regimens of supplements that I can’t even think of following; those are often used, at their own expense, by people so sick they have to do something.

But with no diagnostic criterion and approved treatment, insurance companies are reluctant to pay what should be their part – and very sick patients have to wrestle with getting both care and payment.

Not that there is a standard of care.

It’s getting more common to know someone with CFS

Or ME as some call it, or CFIDS, or the laughable SEID, or Yuppie flu, or chronic mono, or… The ‘experts’ spend much time arguing about these details.

Me, I think it’s going to turn out to be a post-viral thingy: you get something, it wreaks destruction, the virus may or may not stay around, but your cells no longer manufacture energy from your food.

I imagine a whole bunch of other complicated syndromes with some of the same symptoms, from Gulf War Syndrome to chronic Lyme, may benefit when researchers finally figure out how this works.

Meanwhile, those of us who have these things wish we’d had Ebola. Or HIV. Or TB. Or leprosy. Or anything that used to be a death sentence and is now managed, in many cases, by modern medicine.

Have a happy day – and give us a passing thought. And a prayer.

And understand we are not lazy, and are certainly not getting anything out of this.

And all we want is our lives back, so that we can go back to contributing to society the way we were doing when hit by the random freakish act of Nature.

There are an awful lot of us. Millions. And we are missing. From our lives – and from yours.


What can you do? Be aware. There are foundations of patients supporting research, and activists, and support groups if you want to contribute with your volunteer activity or financially. I belong to the New Jersey CFS Association. I can’t tell you which is most effective, but MEAction organized this event.


Just for today, I will remind you that Kary Ashe, the heroine of Pride’s Children, has CFS – and copes as well as she can, while trying to contribute SOMETHING to the world. Symptoms vary all over the map in severity; she is one of the possibilities, in many ways typical.

Advertisements

10 thoughts on “A day of protest for the #MILLIONSMISSING from ME/CFS: May 25th, 2016

    1. Alicia Butcher Ehrhardt Post author

      And so many are worse off than I am.

      I didn’t get to another one of the suggestions for today – taking my own shoes out to the end of the driveway and placing them there with a sign. Not enough of an audience on the cul-de-sac to be worth the effort.

      I’d already expended the day’s writing effort in creating a post (wish I’d thought to photograph MY shoes, but I was rushing to get them ready for the mailman; I didn’t find out about the protest until the day before – clueless me – and didn’t want to miss the mail-in deadline. The people on the receiving end had enough to do, matching the shoes with the form we submitted online, getting the shoes there, and setting them out. Plus cleanup, of course.

      Like

      Reply
  1. Circe

    This is great therapy! It is helpful, & even energiizing, to know that not everyone thinks I’m just lazy. After my purge below, & speaking to my son who decided today to enter inpatient rehab on Tuesday, I thought possibly I could drive my car, if not to the best area car wash, at least to the closest. I took out a tarp, threw an entire wardrobe, lots of camping & gym gear & more onto it & my car is now cleaner. I am no perfectionist. Two years of grime and dings are not erased in a half an hour. What might three weeks of peace, quiet, rigorous routine, & caring (I hope!) do to erase many years of addiction and the habits that go with it?

    Like

    Reply
    1. Alicia Butcher Ehrhardt Post author

      Lazy? All the people with ME/CFS that I know have to work incredibly hard just to keep themselves fed, and sane – we are handling a major disease with little help from the ‘professionals.’ Because we have to, and have no choice, but most of us are putting all the energy we used to put into life into just staying alive.

      That power is still in us; keep up the hope. Check in periodically with the groups and research. Pray.

      I just hope it comes soon enough for you and for me. The answers and the solutions.

      You are not lazy.

      Liked by 1 person

      Reply
  2. Circe

    I miss my active life. I miss myself! Barely recall how to log in here, and long since ceased participating in the many conversations of the blogosphere.
    Every now and then I have a little energy. And I don’t spend it at the car wash, though my frustration with my dirty car (yes, I lived in Southern California for many years) increases with summer weather. But I lie in the sun, hoping the heat & UV rays may do some good, or I garden (briefly).

    I earned a PhD I don’t have the energy to put to use. The job search and adjuncting? Been there, in a different field, fifteen years ago. I’m nostalgic for those bygone days, but grateful that my young children had a lively mother, not a tired one.

    If someone tells me to “get a life,” I might tell them about all the lives I have already lived. But I don’t have much hope for the future.

    Like

    Reply
    1. Alicia Butcher Ehrhardt Post author

      I’ve missed you, Circe, and wondered how you were.

      First, congratulations on getting the PhD! I know it was VERY hard for many reasons, and I’m impressed you got it done. Yay!

      I am saddened to hear about your current state – glad your kids had you when they were little, as I didn’t get that.

      I’m hoping 2016 is the year – in a way I haven’t hoped before – because maybe some of the scientific tools are catching up to what will be necessary. And money is being promised – though not granted yet in many cases. Maybe, just maybe, this scourge will be conquered one of these days.

      And, just as in the case of AIDS, they will stop blaming the victims? Possibly we can stop another generation from getting it, even if we’re toast? I can’t believe the speed with which they came up with a usable therapy for Ebola, and a vaccine? (My reading there has been spotty, but I thought great progress had been made.)

      Keep yourself in the best condition you can until the zombie-killers get here, and take out the disease that turns us into zombies.

      Liked by 1 person

      Reply
  3. Janna G. Noelle

    Standing in solidarity with you, Alicia. The medical industry is not often kind to conditions that aren’t mainstream enough. Neither is the media, for that matter (so good for you to create your own).

    Like

    Reply
    1. Alicia Butcher Ehrhardt Post author

      I do my little bit for the cause; the people doing the protest are putting their all into it. I can’t make the effort to get there and do it in person.

      There are and have been many initiatives; I remember the AIDS epidemic, and their activists. You can say they were very lucky: an identifiable virus is the Holy Grail. Not a complete cure, yet, but so different from what it used to be.

      I hope I’m still alive when they figure us out, but we are at least twenty years behind where we might have been had the research money not been diverted, and the extent of the problem realized sooner.

      Thanks for the support – and remember you are 5 times more likely to become disabled than to die during your working years; everyone gets life insurance – few get disability insurance, or even investigate what would happen if they couldn’t earn.

      I know I had no idea. Thank God Princeton University had provided that benefit; it made a huge difference to my family.

      Like

      Reply

Comments welcome and valued. Thanks!

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s