Tuesday, September 26, 2017

Through the Shadowlands available in audio

Through the Shadowlands available in audio
View this email in your browser

Dear Karen,

The audio version of my book, I knew, would be important. So many of my patient friends can't read an entire physical book, but they can listen. But I ran into trouble getting the audio version produced. So I decided to do it myself, with help from a recording engineer — and a team of volunteers from around the world, organized through #MEAction. I needed to make sure that I had read the text completely accurately, and the team carefully listened to the entire book, catching any problems. I'm enormously proud of the final product, and I'm so glad finally to be able to share the book with everyone in this community.


Julie Rehmeyer
Check Out Julie's Audiobook
Editor's Note: Interested in becoming a volunteer with #MEAction? Our global impact is only possible through your participation. To get involved please visit:

Tuesday, September 19, 2017

Changing Hearts and Minds

Changing Hearts and Minds: A Review of Unrest

Five years in the making, the award winning film Unrest whichJen Brea
created to portray the real costs and struggles ME/CFS patients face,
is finally here. With showtimes starting next week, now is the time to
see and spread the news regarding this raw, poignant and powerful look
at ME/CFS.

Check out a review of Unrest and find out how you can see it in


Things to Do When You’re Mostly Housebound

"Things to Do When You're Mostly Housebound

For those who are mostly housebound, living well can be a challenge."

Toni Bernhard J.D.

(August 09, 2017)


From "Sick" to "Disabled"

From "sick" to "disabled": my own journey

Posted on June 13, 2017
Author Catherine Hale

Catherine Hale looks back at how half a lifetime of chronic illness
slowly changed her understanding of "disability".


She has a chronic illness [ME].

She discusses wondering how the "social model of disability" related
to her. She discusses how her mindset has changed somewhat over the

"How much was my own recovery-obsessed mindset holding me back from
demanding that society accept and include me just as I am?"

* * *
I can tell you that it took a long time for me to accept that I was disabled.  Too many outside forces insisting that if I just tried harder, looked again for a doctor with the right magic pills, I'd be well again.  As if admitting that I'm disabled was somehow a failure instead of accepting reality.
I finally was sent to a consulting doctor who made it clear that the years of bad doctoring, ignoring physical symptoms and treating me for psych problems that I didn't have, refusing to give me either pain pills or sleeping pills so that I could get more than an hour or two of sleep before the pain woke me up, at best I might work half-time, but the physical damage from that medical neglect was permanent and too severe to ever return to full-time work.  That was what shook me up enough to recognize I was permanently disabled.

Coins for a Cure

From: Open Medicine Foundation


Coins For A Cure was inspired by one patient's hope for a cure. Eimear
Forde's family has been going door-to-door and all around her town in
Ireland collecting donations to support OMF"s research. Together with
her children, they share the message of hope by using a basket of

One of Eimear's friends came to her home and emptied an entire piggy
bank full of coins into her collection bucket. It was a lot of coins
and totaled up to 50 Euros. This inspired Eimear and her family to
start collecting coins from family, friends, neighbors and local
businesses. In their first "Coins For A Cure" collection, Eimear
donated over $600 USD. Eimear said, "Some of the donations are small
but it all adds up!! We have to find some solutions to this awful
disease, I want to do all I can to help."

We invite you to join Eimear and ask your family and friends to donate
their spare change and to empty their piggy banks. Invite local
businesses to put a collection jar by their registers. You can get
your company, group, church or organization involved too. Let's make
this an international Team OMF collaborative effort. Join the action
and get your community involved.

Millions of patients around the world are in need of a treatment and a
cure. Your coins are truly giving hope to patients and their families,
just like Eimear's. Be a part of Coins For A Cure and help accelerate
research to help millions of patients.

Donate Now

Please share our Coins For A Cure campaign with your friends.
Working together, we will find answers!

Saturday, September 9, 2017

Tuesday, July 18, 2017

National Disability Voter Registration Week: July 17-21

No matter whether you have private insurance, Medicare or Medicaid, they're talking about changes that will affect your healthcare.  Make sure you're registered now, and make sure you vote next November.

Graphic of Register! Educate! Vote! Use Your Power! Rev Up for California! Make the Disability Vote Count.

Support National Disability
Voter Registration Week

July 17-21, 2017

In collaboration with the American Association of People with Disabilities' Rev Up campaign, the Disability Organizing Network supports National Disability Voter Registration Week. Building the disability vote is essential. Together we can make a difference by continue to organize and educate people with disabilities about the importance of voting.
There are a variety of ways to participate in National Disability Voter Registration Week.
Are you registered to vote? Did you know that California Residences can register to vote online? Visit the California Secretary of State website to register and share the link with your friends, colleagues and network:
Use your social media accounts to post and show your support by sharing a Rev Up graphics:
Sign onto the Rev Up Support Statement and ask others to do the same:
Contact your local Independent Living Center Community Organizer to ask how you can get involved in the Systems Change work happening in your community:

Tuesday, June 27, 2017

Disabled writers

A friend who works with the disabled passes along this link:
What an excellent idea! Writers with a disability have created a brand-new website, Disabled Writers. The aim of the site is to enable editors to connect with disabled writers (and vice versa).
Thanks, Dan!

Thursday, June 15, 2017

Carers Week

It's Carers Week, and we're supposed to acknowledge those who have cared for us during our illness.
I would like to acknowledge my carer: Me.
My ex would leave me alone for 18 hours at a time so he wouldn't have to provide care – no matter how many times I reminded him, he wouldn't even leave a sandwich and a pitcher of water next to the bed for me (and then he wonders why he's an ex!). When I was deathly ill, organs beginning to shut down, I wanted to go home to die, and my mother reminded me that growing up I had been told that I was out as soon as I graduated; she wasn't going to take care of me, either, even though I didn't really need nursing, I just needed someone to cook meals (which she was already doing for herself and Dad).
I tried hiring people, but they only wanted to do what they wanted to do; a man was happy to drive me wherever I wanted to go, but cooking and cleaning and caregiving were "women's work" and he was not willing to do that. A woman who claimed that she had been paid caregiver for a woman with Alzheimer's had a very different idea of what the job entailed than I did; it turned out that she was merely the daytime babysitter while the family went to work – the patient's daughter did all the cooking and cleaning, so all she was required to do was make sure the patient didn't burn down the house and periodically coax the patient to go potty. She thought it was outrageous that I expected her to make meals for me and claimed not to know how to load a dishwasher, even after I'd showed her how, much less doing any of the other chores. She thought the job was merely sitting on the couch reading a book or watching TV, not actual work.
I wrote a blog post years ago pointing out that the books about living with CFS are written by those who have family caring for them, not those who are using every ounce of energy to buy and prepare food, and thus give a very different impression of how tough it is.
The story would sound much more heartbreaking with tales of "I haven't eaten in a week because I cannot get out of bed to get to the kitchen" than it does with "I wasn't feeling well, so my daughter made me a lovely homemade chicken soup." Or "I don't recall the last time I bathed because I don't have the energy to get to the bathroom" versus "my husband drew my bath, carried me to the tub, gently washed me, and carried me back to bed."
When I'm up to it, I will hardboil a dozen eggs, and I keep cooked shrimp in the freezer in single-serve packets, only takes a couple minutes to pull out two eggs and a baggie of shrimp for a high-protein lunch.
The problem is the days that I can't get out of bed without falling to the floor. Eventually I realized that I could stack several cases of bottled water and nutrition shakes next to the bed, and keep things like PopTarts and cereal bars on the bedside table for the days that I couldn't make it to the kitchen. Or make PBJ sandwiches.
Then someone mentioned taking her lunch to work in a mini-crockpot; takes 45 minutes to an hour to heat leftovers (or a can of something). For $20 I got one to keep next to the bed with a variety of canned goods, so now I can eat soup, stew, vegetables, etc., not just cereal bars, when I'm not able to get to the kitchen. A can of chicken and a can of carrots, plus the liquid from each, and part of a bottled water, and I have chicken soup. If I line the container with foil, I don't have to use my precious bottled water to wash it between meals.
I have experimented with other options, some more successful than others. I can put eggs in and leave them for a couple hours to get hardboiled (because the water never gets to boiling, so you have to cook them longer), but trying to make an omelette was not as successful. Meat needs to be pre-cooked, since this mini-crockpot is intended to reheat, not cook; but you can use canned chicken or thick-sliced roast beef from the deli counter.
If you are making something really dense like couscous, heat the water first, or else the center will be cold. Instant rice works better than regular.
Last week I attempted casserole. Heat the water, then put in the dry noodles, canned tuna, and veggies for a few minutes until the noodles were done. Not bad.
Of course, all my cooking creativity doesn't solve the problem of getting the house cleaned or the trash taken out, but it solves the immediate problem of getting enough nutrition to stay alive. I can take out the trash on a good day.

Thursday, June 1, 2017

Hashtag Advocacy

Hi everyone, 
Save My Care is launching our effort to elevate the #IAmAPreExistingCondition hashtag today Thursday, June 1, 2017. The goal is to put faces, names, and stories to the 1 in 6 people who may lose access to affordable health coverage under the GOP's American Health Care Act (AHCA). We'll be asking people to post photos of themselves on the hashtag holding a sign that includes their preexisting conditions, or the preexisting conditions they are concerned about.
There are a few ways you and your organization can participate:


Wednesday, May 24, 2017

ME and enterovirus

Dr. Hyde suggests that if the polio vaccine engineered decades ago had covered a few more enteroviral strains "M.E." would not exist
* * *
Pretty much what Dr. Bruno said, too -- the polio vaccine covers the top three strains, and ME is the #4 most-damaging one.

Wednesday, May 17, 2017

Write about your bad experience

You and Me Magazine will pay $125 for your first-person essay about your experiences as a patient

Write about your bad experience

You and Me Magazine will pay $150 for your first-person essay about your experiences as a patient

Friday, May 12, 2017

"Happy" ME/CFS Awareness Day

Once again, it's May 12, time to bang our heads against the wall trying to convince the world that CFS is not just depression or laziness.
Once again, it's May 12, time to cross off another year of living without a cure -- if you can call what we do "living" ... it's merely existing, taking up space, using oxygen, wishing that we could do something productive.
But this year there's some hope -- you can donate here Registration to fund mitochondrial research into CFS.  Mitochondrial dysfunction is why we're constantly tired.  They're finally looking into something useful instead of wasting research money on psychiatric explanations that do nothing to help us.
This is my 30th year of being sick.  I'd like to see 30 people donate in honor of my wasted life.  We are (of course) Team CFS.

Wednesday, May 10, 2017

Donate for CFS Research

DONATE FOR RESEARCH: https://act.ucsd.edu/mitowalkandroll5k/add  -- we are Team CFS Facts
Scroll down past the walk registration lines on the form and there's a line for additional donation. 

Tuesday, May 2, 2017

ME Awareness Month -- California Legislature


Action Alert! California residents call your state Senator today and ask them to support SCR-40 Myalgic Encephalomyelitis Awareness Month. We are heading for a vote in 10 days and need their support. Use our easy step-by-step guide here: http://bit.ly/2oR9iUm


Saturday, April 29, 2017

Fundraiser and 5K Tropical Run for mitochondrial disease May 20 - T

Fundraiser for research into the mitochondrial component of CFS.
Team CFS Facts should be listed shortly if it's not there already. 

Wednesday, March 22, 2017

A Biomarker for Chronic Fatigue Syndrome (ME/CFS)? Immunosignature

"It suggested that some sort of core immune reaction was taking place in ME/CFS."

Sign the Petition to keep long-term care

Repealing the ACA and slashing Medicaid would leave millions of families unable to afford in-home care.

This plan will make it harder for millions of Americans to afford long-term care -- whether at home or in a nursing home -- and eliminate incentives to keep that care high-quality and community-based. It puts everyone who needs care at risk.

Sunday, March 19, 2017

Getting It Wrong on Chronic Fatigue Syndrome - The New York Times

by Julie Rehmeyer and David Tuller
Critiquing the PACE trial,
"According to a 2015 report from the Institute of Medicine, now the National Academy of Medicine, even minimal activity can cause patients prolonged exhaustion, muscle pain, cognitive problems and more." 

Tuesday, February 14, 2017

30 Years -- Pearl Anniversary

Today marks two important dates – it's exactly 30 years since I got sick, and it's approximately the day I officially cross over into "living on borrowed time".  The day that I reach average life expectancy with this damn disease.
And in that 30 years, there has been no treatment found, no cure discovered.  The situation hasn't improved one iota.  Why?  Because the guys in DC who suffer from male pattern baldness give more research money to that than they do to this disease that actually makes life a living hell.  I wish I were joking about that statistic, but I'm not.
I've been sick over half my life and there's still not a damn thing they can do to make my life any better.  I can't even get charity help because I have the wrong diagnosis.
And then people wonder why I lost my essential optimism?  You can't wake up every day for 30 years saying hopefully "today is the day they're going to find a cure!" and go to bed every night, sighing "not today", without realizing that thinking positive is useless.  It doesn't matter how much I follow the instructions to think positively; if the necessary research isn't being funded, they're not going to find the cure.  It doesn't matter how much I think positively that "today is the day that some friend will get an attack of guilt and offer to help" when 30 years of patiently waiting for my friends to mature enough to think of someone other than themselves has produced zero results.
And what little money is allocated to research is often wasted looking into things that have nothing to do with this disease or have already been disproved.  That 105 fever was not psychosomatic.  That blood test 10x normal proves it's not depression.  But, like every disease that affects more women than men, male doctors find it easier to write it off to psychiatric reasons than to figure out what's causing the problem.

Monday, January 23, 2017

Woo won't cure this

For all of you who've fielded "helpful hints" from uninformed people....


I especially love the arguments from people who insist that something that didn't work for you when you tried it already will work now because this time THEY are the one who suggested it.  Or that it didn't work because you used a reputable, clean American brand, instead of the herbs they're pushing that are imported from a Third World country with no oversight or guarantee of purity.

Laws Chronically Ill Patients Deal With