I confronted NIH Director Dr. Collins to demand that he stop ignoring ME/CFS. The result? I was ignored.

Author’s note: I left this article in the form it was in when I last edited it on March 6, 2020. I didn’t post it immediately because I wanted to take time to edit it and get it exactly how I wanted it, which is very difficult with my ME/CFS symptoms. It is now more than a month later and I decided to post it in it’s raw form to capture what I felt after that moment.

Now, everything has changed. The need for action for ME/CFS is more urgent than ever, given the COVID-19 pandemic and the link between viral triggers and ME/CFS. I have been writing on that topic separately for the past month as my symptoms allow. I also watched Crip Camp on Netflix and wanted to include how that documentary has influenced me but that is another post for another time. I think it’s important to keep this post as it was on March 6 in order to highlight how circumstances surrounding COVID-19 have influenced and impacted me and my future activism. I have a lot to learn, but I am trying and I am fighting!

On March 4, 2020, I participated in a peaceful demonstration to pressure NIH Director Dr. Francis Collins to stop ignoring the ME/CFS crisis and take action now. 

View the video on Twitter:

Here is the message that I intended to shout: 

  • Stop ignoring the ME/CFS crisis! Over one million Americans are sick, disabled, or bedbound. Congress has asked you to increase funding for years! My life is worth more than $13! Fund ME/CFS Now!

How fitting that I demanded that Dr. Collins stop ignoring us, only to be totally ignored and minimized. After I was taken from the room, Dr. Collins says, “The condition ME/CFS, chronic fatigue syndrome, is of great concern to NIH.” Rep. DeLauro (CT-03) responds, “If you need time to address that, please go ahead and do it.” It’s obvious that Dr. Collins is not prepared to do so, further highlighting that ME/CFS is not important to him. During the remainder of the hearing, Dr. Collins did not address ME/CFS and he was not asked about it by any members of congress on the committee. 

I am angry, but not surprised that Dr. Collins minimized and trivialized our illness by calling it a “condition,” and calling it “chronic fatigue syndrome,” rather than Myalgic Encephalomyelitis. I will discuss the stigma surrounding the naming of the disease in this post. It is important to understand that fatigue gets better with rest and happens in response to a typical physical stimulus. It’s normal to be fatigued after running or hiking or lifting weights. With ME/CFS, we have a pathological inability to create and use energy. We become fatigued after reading, speaking, brushing our teeth, preparing a meal, standing for one minute – not typical stimuli – and it takes us days to recover. This is not fatigue, it’s a different beast. The correct term is postexertional neuroimmune exhaustion, which I will discuss later in this post. 

Note: I am going to use the term ME/CFS when I talk broadly about our illness, because that is the term that the NIH and CDC use. It’s also the term that’s in my medical chart. However, when I talk about my own experience with this illness, I will use the term M.E. 

What happened in the room

The Capitol Police were ready for us. I got too excited and took my sign out too soon and even though I hid it in my lap, under my bag, I think I tipped off a staffer who alerted the guards. Capitol Police were ready and I only got out the first sentence before the officer grabbed me. 

I don’t know how I possibly could have been more polite and compliant while performing civil disobedience. The cop that dragged me out of the hearing was excessive and of course, I have to acknowledge my privilege as a white woman in this situation. When police say someone was “resisting,” take that with a grain of salt. 

You can see in the video that just after I start speaking, the officer says, “put the sign down or you’ll be placed under arrest,” and then grabs my arm. I immediately put my sign down and started folding it up. The sign was in my bag before I was even out the door. I sat back down in my wheelchair and you can hear me say, “I’m coming, I’m coming,” before I continue with my message. At that point, Matina stood up and took the torch, continuing our message. The officer then pushed my wheelchair out the door while saying that he was putting me under arrest. My wheelchair was stuck on the door jam and he kept trying to push me forward, nearly tilting me out of the chair. He may have thought that I was blocking him, but it was just another example of inaccessibility. 

Officer Frederick Kreig pulled me out of the room and said that he was placing all of us under arrest, including the woman who filmed the interaction, April. I calmly asked why I was being arrested and he said, “for resisting arrest.” I replied, “I didn’t resist you, you said put the sign down and I did.” Kreig interrupted, “No you didn’t.” I said, “I told you I was coming with you.” He replied, “I gave you a warning and you resisted.” It’s absurd to suggest that I was resisting when he grabbed me by the arm, I said, “I’m coming,” twice, and he pushed me out of the room in my wheelchair. I don’t know how I possibly could have moved faster since he gave me less than two seconds to heed his warning. Again, it’s important to recognize my privilege as a white woman here. Imagine what things are considered “resisting arrest,” when it’s a person of color. I was just about as non-threatening as you can be – a disabled white woman – and the officer still behaved as though I was a threat. 

I can’t believe that he said, “I gave you a warning and you resisted.” I think the correct word here would have been PERsisted and in that case, you’re damn right I did! But the officer never told me to be quiet, so I kept saying my message as he pushed my wheelchair out the door.

It amazes me that nobody in the room cared to hear what a sick, disabled woman had to say, in just four sentences, when I was begging that we stop being ignored and receive more funding.

The aftermath

There were about 10 officers to manage two ill women. There were two younger officers who were helpful and accomodating. I wasn’t placed in handcuffs because I have an IV catheter in my forearm and they were afraid of damaging it, but they had an officer stand with a hand on my shoulder as if I could escape them. Officer Kreig also tried to arrest April, who didn’t have a sign and didn’t disrupt the hearing. She caught everything on video, but the officers didn’t know that. The other officers said that she didn’t do anything and didn’t have a sign, Matina and I backed her up, and they let her go. 

Matina asked for a chair and explained that she is sick and can’t stand for long. Some of the officers rolled their eyes. Officer Kreig said, “You should have thought of that before you got arrested.” He repeated this phrase to Matina a few times when she asked for water and he denied her, when she asked for her coat and he denied her, and when she asked that they loosen the handcuffs because she loses circulation to her hands. The group of older officers kept ignoring a young officer’s request for the cutting tool for the plastic cuffs and finally obliged and he replaced Matina’s cuffs. 

Eventually, Matina had to request a nurse, who took more than an hour to respond, because they would not allow her a drink of water. Only the nurse could give her water and get her gatorade from her bag. My hands were shaking and an officer asked if I needed to go to the hospital. I tried to remain calm and say no, hand tremors are a typical daily symptom of my illness. We were subjected to a thorough search by a woman officer and I was handcuffed before we were taken to Capitol Police headquarters. 

I don’t think that the officers knew that we had video of the events, because throughout the process, I heard Officer Kreig repeatedly ask if there was video from the hearing room, he was told no, and then ask if there were photos and he was told yes. This must have given him a little power trip to embellish his story that we were noncompliant and resisting. The other officers continued to reiterate that we were being compliant. Officer Kreig yelled at my husband when he came near to ask questions, “You can’t be here.” Andrew explained that he is my husband, asked what we were being charged with, where we were being taken, and other questions so he could help us sort things out. He also took photos while nobody was looking and managed to hand press releases to a few photographers who came out and took our photos while we were handcuffed. I haven’t seen any coverage of our disruption. 

Matina and I after being released from Capirol Police

Then, Matina and I were taken to Capitol Police headquarters, which is not accessible. Another officer said that my chair is “cumbersome.” Imagine living in it with no hope of the NIH funding any research to get you out of it, dude. He at least had the common sense to ask me before he pushed my chair. Then, I had to sit for 45 minutes and watch Officer Kreig type his report with his two index fingers. Side note: why is typing such an undervalued skill? (I know, because misogyny). He could have dictated his report to me and had it done in 5 minutes and I’m disabled. Another officer came in and said, “You can spend all day typing that report, just give me the number and I can get them out of here.” It took him another 35 minutes after that to get her the numbers. Matina and I just had to pay a $50 fine each for disrupting congress and we were released. I think that the Capitol Police are now excessively enforcing this rule because of the large number of protesters at the Kavanagh hearings. You won’t stop us. You won’t silence us. 

Planning this demonstration

As soon as the budget hearing was announced, a small group of activists sprung into action to plan this demonstration, while Matina and I rested to store up the energy that would be required. We were very intentional with the message. We wanted to be clear that we appreciated the efforts Congress has made to increase funding for the NIH and that we were sick of Dr. Collins’ empty promises to the ME/CFS community. A quick aside to praise congress, recently all 27 Florida representatives signed a letter to Dr. Collins urging immediate action for research on ME/CFS

We were also very intentional that we did not interrupt any members of Congress, only Dr. Collins. We did not want to interrupt while he was discussing important matters such as Coronavirus, other important diseases, gender equity in research, etc. We wanted to address our concerns and demand action without detracting attention from any other important issues. 

When the group discussed this action, I knew this was my time to do something. I could manage it with my symptoms and I live close to D.C. Outbreaks of ME/CFS began before I was even born and we still have no scientific proof as to a cause, biomarker, or treatment option. Yes, there has been progress, but not fast enough for the scale of this illness. 

Low end estimates say that at least 1,000,000 Americans are sick. High estimates are more than 3,000,000. Dr. Leonard Jason recently found that 95% of children with ME/CFS are undiagnosed. The same study showed that prevalence rates are higher among black and brown youth than among white youth. When the overwhelming majority of the faces of this illness are white women (myself included), this is a huge problem.

The ME/CFS crisis isn’t just a health issue, it’s a social justice issue.

Despite the high prevalence, “funding for M.E. needs life support,” as Jennie Spotila writes on her site, occupyme.net. Spotila highlights that funding for individual grants has fallen 25% since 2017, which places investigator-initiated funding at its lowest point since 2012. Funding peaked in 2017 as Collaborative Research Centers were funded and has steadily declined since then. Spotila notes that those three institutions received 57% of ME/CFS funding in 2019. This creates the risk that the research field could narrow down to those three centers as individual investigators have a harder time getting funding and then leave the field. In the 1990s, NIH funded CFS research centers and they were disbanded in 2003 when funding was terminated. If this were to happen again with the Collaborative REsearch Centers, funding for M.E. could drop by 60%. 

As Spotila highlights in her yearly NIH funding posts, actual spending for ME/CFS is less than the NIH yearly budgeted amounts. In 2019, actual spending was $12,008,817 but the NIH website lists $16 million. The 2020 budget estimate is $15 million. With more than 1,000,000 patients, is my life really only worth $15/year to the NIH? And that’s being generous. As my fellow protester Matina said, is my life worth the same as a domino’s pizza? The high-end prevalence estimates would put funding at an abysmal $5 per patient. That is not enough money to make an impact on this illness. It’s important not to compare to other diseases, because many many diseases need attention and funding, but to put this in perspective, congress recently approved $8 billion in spending for Coronavirus (yes, billion with a B) and fast estimates still say at least a year and a half for a vaccine. It’s no wonder we have had decades of stifled progress due to this neglect. 

Why participate in civil disobedience?

When you look up examples of civil disobedience, there are some LEGENDS. Congressman John Lewis fought for civil rights, marched in Selma and continues with sit-ins now. 

Sometimes you have to get in the way. You have to make some noise by speaking up and speaking out against injustice & inaction #goodtrouble

In 1977, Disability Rights activists held protests across the country and protestors occupied the regional offices of the Dept of Health, Education, and Welfare to demand that HEW Secretary Joseph Califano sign Section 504 of the Rehabilitation ACt of 1973, which stated that “no qualified individual with a disability should, only by reason of his or her disability, be excluded from the participation in, be denied the benefits of, or be subjected to discrimination under any program or activity receiving Federal financial assistance. 

AIDS activists and the group ACT UP totally changed the game with their methods of demanding a medical breakthrough. Their justifiable anger spurred a movement and their demonstrations resulted in real change for the community. I am so inspired by ACT UP member Ann Northrop and her account of the December 1989 demonstration at St. Patrick’s Cathedral in New York. Northrop describes cops entering the church and carrying protesters out. She was the last one to be carried out and her voice rang through the cathedral, “We’re fighting for your lives, too. We’re fighting for your lives, too.” 

“We’re fighting for your lives too.”

Aids Activist ann northrop

When learning about these groups, I always wondered, would I be brave enough to join them if I had been an adult during that time? I hoped so. One thing that always bothers me is that when people don’t agree with the issue, they say, “they’re just doing it for attention.” Of course we’re doing it for attention, but mainly we’re doing it for support. In order to receive the support we need, we have to draw attention to the issue first. I also hate when people say, “I agree with the message, but not the method.” What does that even mean? If the message is that important to you, you will utilize any method to have it heard. See: Colin Kaepernick and police brutality. 

There are so many activists that have been fighting for support and recognition for ME/CFS since before I was even born and throughout my entire life. It’s because of them that I even figured out what was wrong with me. I spent 9 years undiagnosed, thinking it was all in my head, blaming myself for being lazy, not realizing that 12 hours of sleep and a couple of red bulls wasn’t going to magically make my body produce and use energy. 

How I discovered that I have M.E.

I got the H1N1 virus in college in 2009 and I never recovered. I never woke up feeling rested again. Since then, I have had periods where M.E. was mild and I could function fairly well, periods where I had to drive home from work at lunch time to nap, periods where I couldn’t get out of bed or tolerate any light or sound, and periods like now, where I am unable to work, but I can function for a few hours a day with limited payback. I fluctuated between mild and moderate M.E. for years, testing my thyroid and treating Hashimoto’s thyroiditis, doing sleep studies, testing vitamin levels, and doing every other thing my doctor’s could think of with no relief. Now, I fluctuate between moderate and severe M.E. and I must be very deliberate and mindful of pacing. A virus disabled me.

Healthy people: I’m fighting for your lives too.

Without research, we have no idea what causes M.E. and what makes it worse. Did I already have M.E., which made me more susceptible to viruses, which then triggered worsening symptoms? Or did the H1N1 virus trigger M.E. and made it difficult to recover? How come I never recovered from the virus while other people are healthy? Now I also have periods where Eptein-Barr virus reactivates and I have viral symptoms associated with elevated antibodies. This is the virus that causes mono and it can be found in 95% of the population, so why am I so sensitive to it? Am I sensitive because of M.E. or did this virus also contribute to M.E.? With no research, I have no answers. 

I am so full of rage because of all that is unknown about M.E. I feel like a lab rat because I just keep trying various treatments to see if I can get even a miniscule improvement in symptoms. The most helpful treatment right now is saline IV infusions and my doctor says that they are short-term and I have to stop them soon. I am afraid that I will relapse after I stop my infusions. 

I don’t know if M.E. is something that is inherited or passed down. My cousin has the same symptoms and her doctor will only call it “chronic fatigue” and tell her her test results are “normal,” despite her worsening symptoms – a familiar story for all people with M.E. One of my aunts has similar symptoms and has been diagnosed with Lyme disease. Could I pass this on to any children I may have? Are we genetically predisposed but certain environmental factors flip on the genes and cause them to be expressed? There are cases where family members have M.E. including mothers and children. That makes me very fearful of having children, aside from the fact that I wouldn’t be able to care for them with my current symptom severity. Or is this totally caused by an environmental factor like a virus – but then why do some people get a virus and never recover, while others are fine?

What is Myalgic Encephalomyelitis?

The International Consensus Criteria for M.E. is quite extensive and includes many more symptoms than fatigue. The criteria requires that the patient meet the criteria for (A) postexertional neuroimmune exhaustion,  (B) at least one symptom from three different neurological impairment categories, (C) at least one symptoms from three different immune/GI/genitourinary impairment categories, and (D) at least one symptom from energy metabolism/transport impairments.

A. Postexertional neuroimmune exhaustion – a pathological inability to produce sufficient energy on demand. Characteristics are as follows:

  1. Marked, rapid physical and/or cognitive fatigability in response to exertion, which may be minimal activities of daily living or simple mental tasks, can be debilitating and cause a relapse. 
  2. Postexertional symptom exacerbation: acute flu-like symptoms, pain and worsening of other symptoms. 
  3. Postexertional exhaustion: may occur immediately after activity or be delayed by hours or days. 
  4. Recovery period is prolonged: usually taking 24 hours or longer. A relapse can last days, weeks, or longer. 
  5. Low threshold of physical and mental fatigability (low stamina) results in a substantial reduction in pre-illness activity level. 

B. Neurological impairments (at least one symptom from three of the following four categories) 

  1. Neurocognitive impairments:
    1. Difficulty processing information: slowed through, impaired concentration, confusion, disorientation, cognitive overload, difficulty making decisions, slowed speech, acquired or exertional dyslexia. 
    2. Short-term memory loss: difficulty remembering what one wanted to say, what one was saying, retrieving words, recalling information, poor working memory. 
  2. Pain:
    1. Headaches: chronic, generalized headaches, often involved aching of the eyes, may be associated with cervical muscle tension, migraine, tension headaches. 
    2. Significant pain: can be experienced in muscles, muscle-tendon junctions, joints, abdomen or chest. May meet fibromyalgia criteria. 
  3. Sleep disturbance:
    1. Disturbed sleep patterns: insomnia, prolonged sleep including naps, sleeping most of the day and being awake most of the night, frequent awakenings, awaking much earlier than before illness onset, vivid dreams/nightmares. 
    2. Unrefreshed sleep: awaken feeling exhausted regardless of duration of sleep, day-time sleepiness.
  4. Neurosensory, perceptual, and motor disturbances:
    1. Neurosensory and perceptual: inability to focus vision, sensitivity to light, noise, vibration, odour, taste and touch, impaired depth perception. 
    2. Motor: muscle weakness, twitching, poor coordination, feeling unsteady on feet, ataxia (the loss of full control of bodily movements). 

C. Immune, gastro-intestinal and genitourinary impairments: at least one symptom from three of the following five symptom categories:

  1. Flu-like symptoms may be recurrent or chronic and typically activate or worsen with exertion: sore throat, sinusitis, enlarged and/or tender lymph nodes
  2. Susceptibility to viral infections with prolonged recovery periods
  3. Gastro-intestinal tract: nausea, abdominal pain, bloating, IBS
  4. Genitourinary: urinary urgency or frequency, nocturia (urinating frequently at night)
  5. Sensitivities to food, medications, odors, or chemicals

D. Energy production/transportation impairments: at least one symptom

  1. Cardiovascular: inability to tolerate an upright position (orthostatic intolerance), neurally mediated hypotension (low blood pressure), postural orthostatic tachycardia syndrome, palpitations with or without cardiac arrhythmias, light-headedness/dizziness
  2. Respiratory: air hunger, labored breathing, fatigue of chest wall muscles
  3. Loss of thermostatic stability: subnormal body temperature, marked diurnal fluctuations (I’m not sure what this means, but diurnal means daily, so maybe fluctuations of body temp throughout the day), sweating episodes, recurrent feelings of feverishness with or without low grade fever, cold extremities. 
  4. Intolerance of extremes of temperatures. 

Cormorbid entities: fibromyalgia, myofascial pain syndrome, temporomandibular joint syndrome, irritable bowel syndrome, interstitial cystitis, Raynaud’s phenomenon, prolapsed mitral valve, migraines, allergies, multiple chemical sensitivies, Hashimoto’s thyroiditis, Sicca syndrome, reactive depression. 

ME/CFS is way more than being tired and I’m furious that Dr. Collins is treating us like lazy, sleepy housewives with nothing better to do but complain. We’re desperate for help and we want to live our lives. In the ICC article linked above, the authors state, “No other fatiguing disease has ‘chronic fatigue’ attached to its name.” This is important to note because fatigue is not an accurate word to describe our symptoms, while it is an accurate descriptor of the fatigue experienced by those with cancer/chronic fatigue or MS/chronic fatigue for example. The authors write, “Fatigue in other conditions is usually proportional to effort or duration with a quick recovery and will recur to the same extent with the same effort or duration that same or next day.” With M.E. there is a pathological low threshold, meaning that we experience these symptoms with very minimal physical or mental exertion and then over the next few days, we cannot recover and repeat the same tasks. ME/CFS is not understood by the top scientist at the NIH. 

“Fatigue with other conditions is usually proportional to effort or duration with a quick recovery and will recur to the same extent with the same effort or duration that same or next day.”

Caruthers, van de sande, de meirleir, et al.

Why I chose to take action and confront Dr. Collins

Every doctor I have seen is unaware of M.E. and continues to treat my symptoms individually. ME/CFS is not taught in medical schools and it’s obvious that Dr. Collins does not understand or care about this illness. I have played by the rules and worked extremely hard my entire life and look where it got me. Disabled and stuck in the house, doing my own research and connecting with other patients to try to find answers for an illness that has been left behind by the NIH and the CDC. There are so many dedicated scientists fighting for us and they don’t have the funding they deserve. 

I chose to act because of the careful planning that Claudia, Therese and others put into this demonstration. Because I know how important it is for the community to stand up to Dr. Collins and show how desperate we are and how important the ME/CFS crisis is. Because I knew that my husband would stick by me and take care of me even knowing the stress I would cause him, getting hauled out by police. 

I am full of rage and resentment because I thought I was doing everything right – I played by the rules, I got straight A’s, I got a 1470 on my SATs, I went to a great public University and had scholarship money, I held internships and part-time jobs, I landed my dream job within 3 years of graduating, I listened to everything doctors told me, and now I’m disabled by an illness that nobody understands. I’m pissed off that I even feel the need to rattle off these credentials because maybe this will sway more people to believe me. What do I have to lose, now that this illness has taken so much from me? I knew what the risks were and this was worth the risk. This action was worth paying a $50 fine and having a crash and symptoms flare afterwards. 

What do I have to lose, now that this illness has taken so much from me? I knew what the risks were and this was worth the risk. This action was worth paying a $50 fine and having a crash and symptoms flare afterwards. 

I have been disbelieved by doctors for nearly a decade while my illness became progressively worse. I’m still paying student loans on a college degree that I may never use again. I’m unable to work in my chosen career (that was highly underpaid and undervalued) because I can no longer work 50 hours per week. So I’m sick of playing by the rules. 

I keep racking up diagnoses and each one has no treatment option and then people act like I’m malingering. Hashimoto’s thyroiditis and they can’t treat the autoimmune aspect of it, IBS, fibromyalgia, M.E, endometriosis, postural orthostatic tachycardia syndrome, reactivated EBV, chronic sinusitis, peripheral neuropathy, IgG deficiency.

I’m sick of being labeled and not being helped.  I’m sick of doing what’s expected and what’s asked of me and seeing no results. Most of all, I’m sick of being sick. 

Maybe we won’t get much of a reaction from Dr. Collins. But that doesn’t mean I tried and failed. Even if that’s considered a failure, I’m glad that I tried at all. We would have the same excuses from him either way, so I had to try. I hope that he was embarrassed. Congress has done so much to support the NIH and increase funding, yet we have been neglected and left behind. 

I see all of the posts and stories about what we are missing out on because of this dreadful illness. I think of all that it has taken from me. I think of all the potential that I had and how it was stolen. I may have less energy now, but I will harness that small amount to do as much as I can for this movement. For everyone who has severe M.E. and is unable to speak and unable to leave bed. For everyone that pushes through this fog every day, wearing this mask and pretending that we’re ok when we’re in misery every single second of every day. For everyone that tries to have an escape from thinking about this illness for just a moment each day and ME/CFS just won’t loosen that vice grip. For those of you with other illnesses that go undiagnosed, untreated and underfunded (see endometriosis). For those of you that go to a doctor and are ignored, disbelieved and sent home with instructions to “diet and exercise,” and then that make you worse, like me. And for those of you that are healthy – I’m fighting so that science figures this out and you never have to go through what we are going through. 

Senator Elizabeth Warren said, after suspending her presidential campaign, “Choose to fight only righteous fights, because then when things get tough – and they will – you will know that there is only one option ahead of you: Nevertheless, you must persist.” 

I’m fighting for my life and for my health – what should be my most basic human right – and I’m fighting for yours too. That will always be worth it. 

Feeling inspired and want to join me?

Share this post and share the #MEAction social posts. 

Sign this petition to demand more for M.E. 

Donate to #MEAction

Follow #MEAction on social media and join in for #MillionsMissing events in May!

Published by Whitney Foxtail

Dynamically disabled, imperfectionist, advocate. Managing ME/CFS, hEDS, CCI, POTS, ADHD, PI, endometriosis and whatever other comorbid conditions I collect along the way.

Leave a Reply

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 )

Google photo

You are commenting using your Google 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 )

Connecting to %s

This site uses Akismet to reduce spam. Learn how your comment data is processed.

%d bloggers like this: