A “Standard” Patient

Today, Joe Landson shares his experience as a standard, real patient.

I work occasionally as a standardized patient, though there is not much standard about me.

Standardized patients are actors; we play out a script of symptoms for health care providers and providers-in-training, to prepare them for real-life patients. It’s pick-up work. I do it one or two days per month, on average. And that minimal employment is fine for me, because in real life, I’m dealing with a debilitating disease that most doctors don’t think exists. I’m living with Myalgic Encephalomyelitis, better known as Chronic Fatigue Syndrome. I have no stamina left. All attempts to work full time, or even steadily part-time, have failed, and have usually left me bedridden. I rarely find myself able to put two good days together. Every day in which I feign functionality and sociability, I follow with (several) days of melting into a bed, couch, or easy chair. I’m reduced to a physical, mental, and emotional wreck, simply by acting normal.

In my acting work, I usually meet trainees trying to do a good job and make a good impression. In real life, I usually face doctors who have no idea what to do with me, and try to pawn me off on someone else. At work, I train; in real life, I face skeptical providers struggling with a disease for which no one has trained them.

In both worlds, you’re expected to check the boxes, however pointless this may seem. Once, I had a training session on how to deliver bad news to a grieving parent. I played the parent. The two doctors-to-be could not have been more different in their presentation. The first skipped several steps of his rubric in telling me my young son was not likely to make it out of the pediatric oncology ward. He even swapped my stage name with my ‘son’s’ name, which would obviously be awful in real life. Nonetheless, he succeeded in having a warm sympathetic tone combined with normal human language, and this made all the difference.

The second trainee checked all the boxes. He was clearly prepared to deliver bad news by the numbers, just as the script had taught him. Yet I didn’t enjoy this encounter as much. Why? He lacked a sympathetic tone. He seemed, at some points, to be serving a client on his way to shouting ‘Next!’.

Now, consider an actual medical encounter. The Veterans Affairs clinic has an intake form screening for suicidal thoughts and pain, amongst other things. Are you in any pain? Yes, my back hurts. Upper, middle, or lower back? Well, nurse, my entire spinal cord feels like it’s filled with mild acid, until I exert myself, when the acid slowly intensifies to excruciating levels. No, patient, that is not a valid answer. The pen hovered. Pick upper, middle, or lower. Next! I am not standard; I must learn to follow the script. I never do. I couldn’t play my role when the VA decided that ME/CFS sounded like Post-Traumatic Stress Disorder (PTSD), and treatment for that only annoyed me, or made me worse. As Dr. Nancy Klimas said in a March 2009 interview, if ME/CFS patients have PTSD, it’s from medical encounters.

One Monday, I scheduled an appointment (a real one) through my VA clinic, or rather took the date they gave me in the far distant future. The next day, my standardized patient manager asked me to work a gig… on the very same day of my VA appointment. It had finally happened. My fake medical life had stomped on my real medical life, and the joke is, both are fake. My life has gone full Franz Kafka. You’re welcome.

We managed to resolve the scheduling conflict, but obviously not the underlying one. The sum total of my medical interaction is a hoax, a lie, a simulation. Real or fake, all my medical ‘appointments’ reinforce that there’s not likely to be any effective care for me, because I’m not standard. Patients like me do not fit in today’s medicine. Psychiatry tries to claim us, but fails in shoddy efforts like the PACE Trial. Some doctors have explained to my face that the disease does not exist. It’s not the doctors’ fault, at least not entirely. While research exists, much is contradictory or unreliable. This makes it very hard even to diagnose ME/CFS, let alone to know what to do about it when it is.

Advances in immune science and medicine have lately shown a glimmer of hope in explaining ME/CFS, but we’re not at proof yet, let alone at effective treatment. So I guess I’ll keep living my fake life, until I finally become just as insane as some doctors already think I am.

I should mention, I can only do this occasional standardized patient gigs because my senior citizen mother drives me to and from them. If I drove myself, or took the noisy, floundering Metrorail train, I would tire out all the faster. Then again… I could always ride my coal bucket, just like Kafka in his story.

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Resist. Persist.

The Gulf Stream, by Winslow Homer

Am I the only person who feels like she is in a leaky boat, surrounded by sharks?

Pretty much every time I look at Facebook, Twitter or the news, I find another leak in the boat. And when I look at the things that need doing in my life, I begin to wonder how bad it would be to fall overboard.

So in these uncharted waters, I offer you the things that are helping me #Resist, as well as what is helping me #Persist.

We The Resilient, Ernesto Yerena for The Amplifier Foundation

First of all, I basically can’t handle the news. It’s upsetting, and I quickly get sucked into background reading and fact checking. So I am trying to stay informed without getting overwhelmed, and What The Fuck Just Happened Today? helps me do that. It’s a list of what happens each day with links for more information. The only trouble is that it does skew heavily towards the left, and so I know that I am not necessarily getting dispassionate info. There’s always NPR.

I am also trying to broaden my perspective by listening to new (to me) voices. One gem is the See Something, Say Something podcast. It’s an honest examination of being Muslim in America, complete with legal information and Muslim memes. I love it.

I am also drawing courage from other people’s struggles. Crippled Scholar wrote this fabulous piece about why she is not worried about alienating allies. I recently read How to Survive a Plague, the detailed book accompanying the film of the same name. It is inspirational, moving, frustrating and motivating. I highly recommend both the book and the film.

On the ME front, there is this great post about successful “bird dogging,” which is timely in the United States as Senators and Representatives hold town hall meetings in their districts. Johanna Kaiser made these outstanding remarks during the NIH telebriefing on February 1st. Seriously, if you want to get fired up, read/listen to her. Finally, if you need a dose of inspiration, watch Jen Brea’s TED Talk (again).

It is very important to persist, but also to avoid burnout. I see this in my Twitter feed a lot – how to participate in current events while making sure you still take time for self-care. This is especially critical for sick people! Here’s what’s working for me right now:

I periodically check in with myself: have I eaten? do I need pain meds? do I need to lie down? do I need a quieter environment? do I need to turn my phone off?

I make sure I play the cello every day I am physically capable. I am knitting a cashmere shawl for myself. My husband and I are working our way through a series of funny movies.

I’m also much more aware of the importance of art in my daily life, in a variety of forms. I don’t normally use my spoons for museums, but I made an exception this month and was rewarded by The Starry Night over the Rhone at Arles and Water Lilies (Nymphéas). I also just discovered the work of Michael Robinson. In my more natural environment of words and stories, I am loving the Lore podcast. And although my to-read list may soon eclipse my life expectancy, I am eagerly awaiting my copies of The Stars Are Legion by Kameron Hurley, Thunderbird by Chuck Wendig, and Through the Shadowlands by Julie Rehmeyer

Most of all, I am trying to bring mindfulness and compassion to my day. If I am making coffee, I only make the coffee. I don’t try to take out recycling at the same time. If I am on the phone with a friend, then I focus on that and not on the other things that might distract me. And if I am not able to get something done, even if it desperately needs doing, I am trying not to beat myself up for it.

This is a long haul, and I want to persist.

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RFA Ticker, 2/20/17

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Following an excellent suggestion from J.A. on last week’s post, I have added a line to the table of cumulative RFA numbers. This line will track the RFA dollars committed to ME/CFS. I don’t expect it to change this year. It might also be helpful to track regular ME/CFS funding, and I’ll look into the most efficient way to do this.

I thought it might be helpful to check in with where we were this time last year, too. The number of RFAs issued by this time in 2016 is about the same, but the overall funding commitment is lower. This time last year, NIH had already committed $1.5 billion in RFA funding. One possible explanation for the difference is that generally, RFAs are stating the specific commitment for the first year of funding only. Last year, more RFAs specified what would be offered in year two or three or four as well. I suspect this is a reflection of the uncertainty around federal spending and the priorities of this new administration.

Here are the current cumulative RFA numbers:

FY 2017 FY 2016
RFAs Issued 137 352
Dollars Committed $784,157,563 $2,840,680,617
RFAs for ME/CFS Two Zero
ME/CFS RFA Dollars $6,750,000 $0

And here is the table for FY 2017 alone:

Week Beginning RFAs Issued Total Commitment RFAs for ME/CFS
2/13/17 8 $29,600,000 Zero
2/6/17 1 $4,000,000 Zero
1/30/17 1 $10,000,000 Zero
1/23/17 4 $14,250,000 TWO
1/16/17 2 $45,600,000 Zero
1/9/17 0 0 Zero
1/2/17 1 $43,000,000 Zero
12/26/16 0 0 Zero
12/19/16 2 $10,000,000 Zero
12/12/16 28 $125,950,000 Zero
12/5/16 14 $114,800,000 Zero
11/28/16 10 $47,660,000 Zero
11/21/16 6 $42,780,000 Zero
11/14/16 6 $44,350,000 Zero
11/7/16 10 $25,490,563 Zero
10/31/16 4 $26,550,000 Zero
10/24/16 10 $53,400,000 Zero
10/17/16 17 $94,890,000 Zero
10/10/16 1 $28,750,00 Zero
10/3/16 9 $23,087,00 Zero

If you want more background on the RFA Ticker, read the inaugural post.

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RFA Ticker, 2/13/17

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NIH issued one RFA last week, for cellular therapies to treat radiation injuries. In that one RFA, the National Institute of Allergy and Infectious Diseases committed $4 million for FY 2018. The maximum project length is five years, although future appropriations will determine funding levels past FY 2018.

Why am I pointing this out? Because this is twice the level of commitment that NIAID is making to the ME/CFS RFAs. Understand this. The science of cellular treatments for radiation exposures is more advanced than the science of ME/CFS, such that $4 million is being allocated for this narrow RFA. And NIAID is investing half as much in the ME/CFS RFAs which are intended to build a major infrastructure piece of our entire field.

We have a very very long way to go, friends.

Here are the current cumulative RFA numbers:

FY 2017 FY 2016
RFAs Issued 129 352
Dollars Committed $754,557,563 $2,840,680,617
RFAs for ME/CFS TWO ZERO

And here is the table for FY 2017 alone:

Week Beginning RFAs Issued Total Commitment RFAs for ME/CFS
2/6/17 1 $4,000,000 Zero
1/30/17 1 $10,000,000 Zero
1/23/17 4 $14,250,000 TWO
1/16/17 2 $45,600,000 Zero
1/9/17 0 0 Zero
1/2/17 1 $43,000,000 Zero
12/26/16 0 0 Zero
12/19/16 2 $10,000,000 Zero
12/12/16 28 $125,950,000 Zero
12/5/16 14 $114,800,000 Zero
11/28/16 10 $47,660,000 Zero
11/21/16 6 $42,780,000 Zero
11/14/16 6 $44,350,000 Zero
11/7/16 10 $25,490,563 Zero
10/31/16 4 $26,550,000 Zero
10/24/16 10 $53,400,000 Zero
10/17/16 17 $94,890,000 Zero
10/10/16 1 $28,750,00 Zero
10/3/16 9 $23,087,00 Zero

If you want more background on the RFA Ticker, read the inaugural post.

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RFA Ticker, 2/6/17

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I have no words this week, friends. I’m tracking the numbers because that is all I can do.

One announcement: The NIH Clinical Care Center study of post-infectious ME/CFS is now recruiting participants. You can see the flyer here, and read more about the study on the website.

Here are the current cumulative RFA numbers:

FY 2017 FY 2016
RFAs Issued 128 352
Dollars Committed $750,557,563 $2,840,680,617
RFAs for ME/CFS TWO ZERO

And here is the table for FY 2017 alone:

Week Beginning RFAs Issued Total Commitment RFAs for ME/CFS
1/30/17 1 $10,000,000 Zero
1/23/17 4 $14,250,000 TWO
1/16/17 2 $45,600,000 Zero
1/9/17 0 0 Zero
1/2/17 1 $43,000,000 Zero
12/26/16 0 0 Zero
12/19/16 2 $10,000,000 Zero
12/12/16 28 $125,950,000 Zero
12/5/16 14 $114,800,000 Zero
11/28/16 10 $47,660,000 Zero
11/21/16 6 $42,780,000 Zero
11/14/16 6 $44,350,000 Zero
11/7/16 10 $25,490,563 Zero
10/31/16 4 $26,550,000 Zero
10/24/16 10 $53,400,000 Zero
10/17/16 17 $94,890,000 Zero
10/10/16 1 $28,750,00 Zero
10/3/16 9 $23,087,00 Zero

If you want more background on the RFA Ticker, read the inaugural post.

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RFA Ticker, 1/30/17

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At long last, the promised RFAs are here. Last week NIH published the RFA for the Collaborative Research Centers and the Data Management and Coordinating Center.

Unfortunately, my mother-in-law passed away last week. Between that and other sources of upheaval, I have not even been able to read the text of these RFAs. I hope to publish an analysis some time after the NIH telebriefing on February 1 at 3pm Eastern. I am sorry, but basically all my spoons are on fire.

To make it up to you, when I do publish my analysis, I will give away a PRIZE to one of you so stay tuned. If you haven’t already, sign up in the right hand nav bar to receive my blog posts by email when they are published.

Here are the current cumulative RFA numbers:

FY 2017 FY 2016
RFAs Issued 127 352
Dollars Committed $740,557,563 $2,840,680,617
RFAs for ME/CFS TWO ZERO

And here is the table for FY 2017 alone:

Week Beginning RFAs Issued Total Commitment RFAs for ME/CFS
1/23/17 4 $14,250,000 TWO
1/16/17 2 $45,600,000 Zero
1/9/17 0 0 Zero
1/2/17 1 $43,000,000 Zero
12/26/16 0 0 Zero
12/19/16 2 $10,000,000 Zero
12/12/16 28 $125,950,000 Zero
12/5/16 14 $114,800,000 Zero
11/28/16 10 $47,660,000 Zero
11/21/16 6 $42,780,000 Zero
11/14/16 6 $44,350,000 Zero
11/7/16 10 $25,490,563 Zero
10/31/16 4 $26,550,000 Zero
10/24/16 10 $53,400,000 Zero
10/17/16 17 $94,890,000 Zero
10/10/16 1 $28,750,00 Zero
10/3/16 9 $23,087,00 Zero

If you want more background on the RFA Ticker, read the inaugural post.

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RFA Ticker, 1/23/17

tickerSecond verse same as the first. The wait continues.

Two dates are coming:

  1. January 31st, by which Dr. Francis Collins said the RFAs would be issued.
  2. February 1st, on which NIH will hold another ME/CFS advocacy call. Call-in information has not yet been posted.

Will the audience demand an encore?

Here are the current cumulative RFA numbers:

FY 2017 FY 2016
RFAs Issued 123 352
Dollars Committed $726,307,563 $2,840,680,617
RFAs for ME/CFS ZERO ZERO

And here is the table for FY 2017 alone:

Week Beginning RFAs Issued Total Commitment RFAs for ME/CFS
1/16/17 2 $45,600,000 Zero
1/9/17 0 0 Zero
1/2/17 1 $43,000,000 Zero
12/26/16 0 0 Zero
12/19/16 2 $10,000,000 Zero
12/12/16 28 $125,950,000 Zero
12/5/16 14 $114,800,000 Zero
11/28/16 10 $47,660,000 Zero
11/21/16 6 $42,780,000 Zero
11/14/16 6 $44,350,000 Zero
11/7/16 10 $25,490,563 Zero
10/31/16 4 $26,550,000 Zero
10/24/16 10 $53,400,000 Zero
10/17/16 17 $94,890,000 Zero
10/10/16 1 $28,750,00 Zero
10/3/16 9 $23,087,00 Zero

If you want more background on the RFA Ticker, read the inaugural post.

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CFSAC Public Comment, January 2017

I prepared comments for the January 13, 2017 CFS Advisory Committee meeting, but when my time arrived I decided to wing it. Below is my best reconstruction of what I said, a mixture of my prepared and spontaneous remarks.

Start as you mean to go on. This is a commonly used phrase at New Year’s – supposed to be motivational, I guess. It means: Be intentional as you begin the new year. Start reading more books or taking more walks or whatever your goal may be, because how you start influences how you will continue forward.

I’m going to take my own advice and toss my prepared comments. Based on the discussion this morning, I want to scream: Let’s. Start. Now.

Start by tossing what’s been done.

Start by thinking outside the box.

If you want to design better educational materials, if you want to recruit new investigators, if you want to progress a treatment to approval within a decade then it is time. It is time to roll up our sleeves, work hard and work together.

I’ve been an activist for close to two decades. We have got to do something different in order to achieve different results. It’s time to ask how we can achieve the results we want, instead of following the same paths and procedures that are entrenched in the system.

There is so much uncertainty about the future budgets for research and assistance programs, and ME patients are extremely vulnerable. Many are wholly dependent on SSDI, Medicare and Medicaid. All of us  – including all of you in the room who have a different disease or health condition – rely on the protection of the pre-existing condition rule to obtain health insurance. The vast majority of patients with ME have great difficulty getting appropriate diagnosis and care, and do not have access to the handful of specialists nationwide. And our future is very much dependent on full funding for NIH in general, and ME research in particular.

If we don’t do this, then I am worried. We are losing people with ME to suicide because they are too sick to go on. Efforts to help us are too slow and too small and too easily ignored. Promising scientific ideas gather dust while we wait for funding, and the ME researchers and clinicians alike are having difficulty finding experts to replace them as they retire out.

If we don’t do this, then I am scared. I am scared that I will recite variations of this litany year after year, as I get older and the last of my supposedly productive years leach away.

Let’s demonstrate forward thinking leadership, and set a high standard with which to measure federal agencies’ performance. Let’s sit down at the table, as equals, and quickly. We need to take ACTION. I have volunteered for every stakeholder engagement initiative I can. I am ready and willing to work with you for solutions. This is the only way I see to create a better future for people with ME.

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RFA Ticker, 1/16/17

ticker

NIH issued no RFAs last week, but we have plenty to talk about after Dr. Vicky Whittemore’s presentation at the CFS Advisory Committee on Friday. Dr. Whittemore’s announcement was simultaneously welcome and disappointing.

During her update to the committee on NIH activities, Dr. Whittemore revealed how much money the long delayed RFAs will offer:

rfaplanThe RFAs should total approximately $29,750,000 over five years. Dr. Whittemore said that this money is in addition to the expected investigator initiated proposals that we’re familiar with. She also said that it was challenging to get these Institutes to commit these dollars.

It is notable that ten of the twenty-seven NIH Institutes are contributing money, plus a one-year contribution from the Office of the Director. The bulk of the money is coming from the National Institute of Allergy and Infectious Diseases and the National Institute of Neurological Diseases and Stroke. This is not surprising, as most grant funding for ME comes from these two Institutes. The National Center for Advancing Translational Sciences is restricting its contribution to the RFA for the Data Management Center, which is a bit disappointing because NCATS is among the leaders at NIH in incorporating stakeholder input into its funded studies. It would be nice to take advantage of the existing infrastructure there.

What does this mean in terms of how the money will be used? The payout should look something like this:

  • Year 1: $6,750,000
  • Year 2: $5,750,000
  • Year 3: $5,750,000
  • Year 4: $5,750,000
  • Year 5: $5,750,000

This money will be divided between the RFA for the Data Managing Center and the RFA for the Research Consortium. I think Dr. Whittemore expected two to three sites would be funded, plus the Data Center (which does not necessarily have to be at another institution). I’m guesstimating $1.6 million to each of three sites and $750,000 for the Data Center, per year.

Is this good? Well, yes, in that something is better than nothing. And also yes, because NIH is making a five year commitment. Based on Dr. Whittemore’s comment at the IACFS/ME meeting that 2016 funding for ME would be doubled in 2017, I had personally predicted an RFA total of $7 million maximum for one year. That was a little high, it turns out, but I did not expect the five year commitment.

But this is also disappointing. Measured by the overall NIH yardstick, $6 million a year for a research consortium on a disease that costs our economy $20 billion a year is not even peanuts. NIH gave $7 million a year to Fragile X Research Centers (Fragile X is a rare genetic disorder). NIH’s Autism Center of Excellence Program is funded with about $20 million per year. And the huge NIH Pain Consortium offers myriad funding opportunities, including a number of research center programs.

I am deeply concerned that some of the Institutes are contributing only grudgingly. Furthermore, I think it’s unlikely that there will be additional RFAs for at least two or three years while we wait for the Consortium to get going and bear fruit. The successful Consortium applicants better knock this out of the freaking park. We need highly economical management of projects that produce extremely promising interim results. That’s the only way we can secure bigger commitments quickly.

Furthermore, we need researchers to submit proposals outside the RFA mechanism. Lots and lots of proposals. Again, the only way we will see an increase in dollars is if more proposals are successful. I know grant writing is a pain in the butt. I’ve watched four members of my family go through the process repeatedly over the years. But you can’t win if you don’t play the game. I would love to see the number of applications double in 2017 and then double again in 2018. That demonstration of interest would send a loud message to NIH that we are “shovel ready.”

I suspect that some (many?) advocates may want to focus on thanking NIH for this investment, and not say anything negative about it. But here’s the thing: when you are starving to death on a cup of rice a day, the addition of another cup of rice sounds like a banquet, but you are still going to starve to death.

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Comment by Terri Wilder, 1/12/17

Terri Wilder made these remarks at the January 12, 2017 meeting of the CFS Advisory Committee. I’m pleased to publish her complete comments, with her permission.

Good Afternoon- My name is Terri Wilder and I’m a person living with ME. It has been 10 months since I was diagnosed with this illness. In the past ten months my health has been up and down. I had to drop out of my PhD program after finishing all of my course work and passing my qualifying exam. Sadly, I only had my dissertation left to complete my degree requirements. Despite this life changing event, I have been part of two ME protests, two meetings with the Acting Assistant Secretary of Health and Human Services Dr. Karen DeSalvo, a meeting with the New York State HHS regional director, several meetings with leadership at the New York State Department of Health (to develop an ME webpage and create free state-wide ME CME/CNE content), convened several phone calls with a very high ranking NIH leader, and was the brain child behind the most recent call to action to get the NIH to release the promised ME FOAs. Simply put, I’m an activist fighting for my life.

What I would like to talk about today is how able-bodied privilege and microagression impacts the lives of people with ME. “Microaggression” is a term coined by a Harvard professor in 1970 to describe insults and dismissals he regularly witnessed non-black Americans inflict on African Americans. Psychologist Derald Wing Sue states that microaggression is “brief and commonplace daily verbal, behavioral, or environmental indignities, whether intentional or unintentional, that communicate hostile, derogatory, or negative slights and insults towards people.” People with ME encounter microaggressions frequently. Microagressions take place in everyday conversations, during ME meetings, during presentations, on websites with ME content, etc— often making them hard to call out.

So— when we put microagression into the context of ME the following examples come to mind: wearing scented body products in areas labeled as scent free is microagression. Telling a person with ME that “you don’t look sick” or “you look so normal” or asking them “you can’t give me ME can you?” is microagression. Inviting a speaker to give a presentation to staff at a government institution who is a documented misogynist and spreads stigmatizing untruths about person with ME is microagression. Placing damaging and inaccurate information on a government website about ME is microagression. Charging medical providers for clinical education on ME when we are so desperate to get ME medical education out in the world is microagression. Delaying the release of ME research FOAs is microagression. Stating that you don’t think a committee needs more people with ME on it is microagression. Holding CFSAC twice a year is microagression. Placing thinly veiled GET information in a publication about ME that goes out to thousands of public health professionals around the world is mircoagression. And referring to my illness as chronic fatigue syndrome is microagression.

Constantly referring to me as a patient is microagression. I’m not a patient 24/7 days a week. I’m a sister, friend, and daughter. I’m a person first and should be referred to as such. Using person first language is respectful and acknowledges that while ME is a part of my identity I’m not an illness and am only occasionally a patient in a medical provider’s office.

Projecting an “Us” vs. “Them” mentality is microagression. Illness lies on a spectrum. The reality is that anyone can become ill at any point in his or her life. So— if an opportunity to meet with a person of power OR a ME workgroup or committee seat comes open and you don’t immediately think of it as an opportunity to include a person with ME you are reinforcing the idea that an able-bodied person is a better fit. And that simply isn’t true. That is microagression.

So— when you want suggestions on how to engage “stakeholders” start by checking your able-bodied privilege and how you participate in microagression. Stakeholder engagement isn’t just about convening regional meetings, phone calls, or sending out a survey to get input— it is about checking your privilege at the door every time you engage with or on behalf of a person with ME.

ME affects all of us differently. Since illness is on a spectrum from “more ill” to “less ill” I challenge people with ME to also think about abelism, microagression, and their privilege. For example, when you advocate on behalf of the community do you forget about the people who are completely bed bound or unable to speak? The most ill are probably people you will never meet because they can not come to a meeting like CFSAC or participate on advocacy calls or attend a ME conference in Florida.

I will close by sharing a story. I just recently finished reading “How To Survive A Plague” by David France. I encourage everyone in this meeting to at a minimum watch the documentary of the same name. It tells the story of how people with HIV fought for their lives during the early years of the AIDS epidemic. Not surprisingly, I was struck by the many parallels between ME and HIV in the early years of the epidemic when there was little government response and people with HIV were neglected and left to die. In the book Michael Callen (who was a person living with AIDS) gives congressional testimony. During his testimony he states, “So whatever you or your colleagues do or don’t do, whatever sums are or are not allocated, whatever the future has in store for me and the hundreds of men, women, and children whose lives have been irrevocably changed by this epidemic, the fact that the Congress of the United States did so little for so long will remain a sad and telling commentary on this country and this time.” As I read this I, of course, thought about my life and how one day I might give congressional testimony literally saying the same exact thing about ME.

People with ME are fighting for their lives. Don’t dismiss our activism in public forums, secure high-level meetings without us or send emails to us when you disagree with our published opinions. Don’t tell us that we got you in trouble with your boss when we wrote them a letter. It isn’t appropriate and is a form of microagression. We are engaging in any means necessary to end this illness. Join us or leave. This is about our lives not yours.
Support us in our struggle against those who ignore us, stigmatize us, discriminate against us, won’t provide medical care to us, won’t fund RFAs to improve our lives, don’t believe us, and undermine our efforts. Work with us to create spaces so that we are involved in every level of decision-making, are included in forums with equal credibility as other participants, and have the opportunity to share our own experience and knowledge.

And if you feel like your able-bodied privilege could possibly get in the way of the ultimate goal of curing this illness I encourage you to tape a picture of a severely ill person with ME by your computer or phone or keep it in your wallet so you can check your able-bodied privilege at the door when you literally walk into a ME meeting, when you meet with a high ranking government official on behalf of the ME community, create a clinical education video, respond to our email and calls, or when you create other materials that reflect our lives.

Thank you.

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