Millions Missing

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Your doctor can learn to diagnose and treat ME/CFS while receiving a continuing medical education credit online through Mayo Clinic until 9/30/25

Here is the link to Mayo Clinic's article describing this:

I found out about this through this year's #MEAction's #MillionsMissing campaign which has provided the template below that you can use to share information about this course with your doctor:

Language to share with clinician

When I use the word treat, it's not the same as cure.

#ChronicFatigueSyndrome #MyalgicEncephalomyelitis

Language to share with clinician

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Myalgic Encephalomyelitis and the CDC's misappropriation of funds allocated for M.E: We didn't get here by accident

I've had M.E. for 32+ years and have written about it extensively for the Washington Post and for other publications.

Since I first became ill in 1991, the CDC and the NIH have been derelict in their duties to protect the public from a pernicious illness that's disabling, degenerative, and potentially fatal.

In Hillary Johnson's seminal tome Osler's Web: Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic (Crown Books 1996, reissued by Penguin Books 2006), she broke the story that the CDC had misappropriated tens of millions of dollars approved by Congress for the study of M.E., then still called "Chronic Fatigue Syndrome" or "CFS".

[Edit: When I first published this piece last night, I incorrectly wrote that the Washington Post had first broken this story. Hillary Johnson and I have known each other online for years--which I've always considered an honor because I first read her reporting on M.E. in Rolling Stone in the Eighties--and I appreciate that she reached out to me to relay that she broke the story. I appreciate the kind manner with which she did so and I'm mortified by my error. I read Osler's Web when it first came out and highly recommend doing so if you haven't already. More about Hillary Johnson and Osler's Web on her site here:]

Because it's important to understand how we got here, at a point where said illness was wrongfully either dismissed or underestimated until millions of lives were destroyed and an untold number of persons were dead, here's a truncated version in a 1999 Washington Post story, for free:

In 2000, then-CDC director Jeffrey Koplan had to apologize during a Congressional hearing because, twice in two years, the CDC got caught misappropriating funds Congress had earmarked for CFS [sic]. Seriously, what kind of fuck weasel bullshit venality is this:

I'll get to the failings of the NIH as I go here--others have written about all of this before, but I'm alarmed by how many persons with M.E. still don't know the history of the illness and how it came to be either derided or ignored by the medical establishment.

We're in a fight for our lives and information is power.

Day 4 of 365

#MyalgicEncephalomyelitis #MillionsMissing #pwme #cfsisamisnomer #Disability #CDC #NIH #ChronicIllness #oslersweb #hillaryjohnson

5 reactions 2 comments

#MillionsMissing is coming soon

I just watched the movie unrest again, may 19th 2020 it's happening again all over the world I wish I was in DC or had someway to attend online...
our voices need heard
/CFS #ChronicFatigue #ChronicPain #Fibro


Another Missed Milestone Event

This post is full of self-pity so feel free to scroll on by. Today I’m missing my youngest Godson and his wife’s gender reveal party due to migraine. I also missed their wedding, graduation (college and high school), prom, and seeing him play college football and most of high school.
For some stupid reason, I really thought I’d make it today. I was feeling a bit better yesterday. Had tons of people praying, but no. I haven’t been able to get out of bed all day. They live about 45 minutes away, and the venue of the party is almost 1.5 hours from me. If they were in town I might try to push through and get there, even if I had to throw up in the bathroom. But I can’t get on the interstate like this, much less be at a party.
So I’ll miss another Milestone of his, and in general.
I freakin hate migraine! #ChronicMigraines #ChronicDailyMigraine #Chronicintractablemigraine #ChronicIllness #ChronicPain #Stolenlife #MillionsMissing #Missingmilestones #Depression #Anxiety


Trapped at 10%

My body is a broken phone. It’s not an old phone, but for some reason the battery never charges past 10%. I mostly live plugged into my bed, trying to finally reach 10% again. If I’m lucky I can make a phone call or send a text before my battery dies. Yes I’m thankful that I work and that I’m not as bad as some other phones (that can’t work at all) but somehow that doesn’t make my life feel any less painful. Phones that aren’t broken just don’t understand. When their battery dies and they just plug themselves into the outlet and then they wake up charged. They say things like, “You’ve been charging all year, why isn’t your battery full yet?” Or “I wish I could do nothing but be plugged in all day” Believe me, I want to be fully charged desperately. I want to unplug myself from this bed and live my life. I want to be able to leave my house and not have to worry about my battery suddenly dying on me. I just want my life back. #MyalgicEncephalomyelitis #ChronicIllness #ChronicFatigue #MentalHealth #Anxiety #Depression #Journaling #MillionsMissing

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#MillionsMissing Cambridge

I hope you are all having good health days today.
I’m off to the millions missing event in Cambridge today.
Is anyone else going?

Trying to calm my emotions down because I know I’m gonna get tired before I even arrive!
Going to wear my badge asking for people to give to a seat for me and see what happens. (Really don’t want yo use Wally unless I really need to)

See full photo

Does this count towards my vitamin D?

I wasn’t up for going outside today but I found a sunny spot on the bathroom floor. Does this count as sun exposure?

My life has fallen so far so fast. 😢 #MECFS #MillionsMissing #chroniclife #pwCFS #pwme #CFS


Three things I'm grateful for...

1) My #truefriends ; who do everything they can to #understand what I'm faced with and continue to be #Accepting and #supportive .

2) Having my own #home , where I #feelsafe ; it's warm, calm and #comfortable , I can receive my daily #HomeCare with confidence, and live in the catchment area for an awesome #carecompany . All the standard services are reliable, there's decent internet here and my abusers have nooo idea where I am!

3) That I'm still able to be #creative from time to time; even with #multiplechronicillnesses that leave me mostly #housebound #Disabled , it gives me something to look forward to, knowing that as long as I continue to listen to my body, I can do what I enjoy most when I'm able to.

#52SmallThings #3thingsimgratefulfor #myalgicencephalopathy #ME #pwme #HEDS #restlesslimbsyndrome #Migraines #Fibromyalgia #FibroFog #BrainFog #Tinnitus #ehlersdanlossyndromev3 #POTS #eds3 #CPTSD #PTSD #MillionsMissing #Potsie #Zebra #Spoonie #theunchargables #InvisibleIllness #invisibledisabilities #thedruidessofmidian #thespooniedruidess #disabledmodel #creativemodel #altmodel #spooniemodel #DomesticAbuseSurvivor #rapesurvivor #domesticviolencesurvivor #escapedtoxicfamily