Safety In Isolation

Posted on March 19, 2020 by Jennie Spotila

The COVID-19 pandemic has expanded dramatically in the last two weeks. I won’t attempt to summarize everything that has happened; there’s too much. Instead, I have gathered some information that I hope will be helpful to people with ME and their families and friends.

My focus in this post is your safety, both physical and emotional, while we all live with new restrictions and social distancing/isolation. Note: the situation is changing rapidly and will vary by location. Please stay on top of guidance for your location and seek competent medical advice as warranted.

Where To Get Information

You need to have access to accurate and reliable information about COVID-19 and your local situation. Bookmark the following websites, and check them regularly:

  • Your national government’s information page: In the United States, that is coronavirus.gov. In the United Kingdom, the UK government response page looks best (UK readers, correct me if I am wrong).
  • Your local government’s information page: In the United States, that means your state and your city/county public health department pages. Find them and bookmark them. The best information on local restrictions will be posted there. In the UK, I assume city/county pages are best (UK readers, correct me if I am wrong).
  • Your local media: National news is important, and some major US papers are providing free access to coronavirus coverage. However, the most useful information about what is happening will be in your local paper. Find it and check it regularly.
  • Disease-specific information: There are many high risk groups, including immunocompromised people. For safety’s sake, I think we should assume that people with ME–especially severe ME–are at high risk for more severe disease and complications from COVID-19 than healthy people. MEAction has published resources for people with ME. I have seen disease-specific information from diabetes and multiple sclerosis groups too.

Meeting Your Basic Needs

People with ME, especially those who live alone, already struggle to meet basic daily needs. The public health information I’ve been reading doesn’t address these fundamentals, but I think it’s important to spell them out.

  • Food: I know the general guidance is to have two weeks of supplies in the house. But honestly, lots of people can’t do this easily. Whether it’s money, or access to grocery stores, or the ability to prepare food every day, people with ME already have challenges here. Think about what is easy for you to eat when you are too sick to cook. Set up for grocery delivery (slots fill up very fast) or ask someone to shop for you.
  • Medical Care: Order prescription refills as soon as you are eligible. Don’t wait until a bottle is almost empty to buy nonprescription products. Make sure you keep your doctor’s contact info handy, and share it with someone you trust to call on your behalf if needed.
  • Hygiene: Laundry and housecleaning are two tasks that are very difficult for many people with ME. It’s even more challenging now, especially if you live alone, because it’s best not to have people coming in and out of your house. If you need help with these tasks, think about ways to get the help without having too much close contact with outside helpers, such as sitting in a different room while someone cleans.
  • Contact: We all need human interaction to stay as healthy as possible. This is especially important if you live alone because social distancing means no social visits. Check in with someone every day, or ask someone to call you to check in. If you can Skype/Facetime or talk on the phone, great. If email or text is all you can manage, then do that. If you have the energy, check up on your friends too.

What To Do If Sick

  • If anyone in your house has a fever or other symptoms of a respiratory infection: Stay at home and call your doctor. You don’t want to risk infecting someone else by going to an emergency room or medical office. You also don’t want to pick up an infection in one of those places. Stay home, and call your doctor right away for instructions.
  • If you or someone in your house has a medical emergency (such as trouble breathing): Call 911. Inform the operator if you think you might have COVID-19. If possible, put on a mask before help arrives.
  • Wash your hands, etc: Everyone in the house should be washing their hands after using the bathroom, before preparing food, before eating food, upon returning home from somewhere else, before and after interacting with someone who is ill, and so on. Don’t share glasses or other personal items.
  • Disinfect surfaces: We now know that the virus that causes COVID-19 can survive on some surfaces for up to 72 hours. To the extent possible, regularly clean common surfaces like doorknobs, kitchen counters, bathroom counters, faucets, etc. Even if all you can do is run a disinfecting wipe over the surface, that’s better than nothing.

More information on what to do if you are sick

Minimize Spread of the Virus

The best thing we can do to reduce COVID-19 is to Stay The F*** Home. The goal is to slow infections enough that we flatten the curve, and reduce the load on the healthcare system at any one time. This applies to everyone, whether you are sick or not.

The importance of this cannot be overstated. In the United States, many local governments are mandating restrictions on: schools; gatherings; discretionary travel, shopping and social visits; eating in restaurants; and closure of nonessential retail businesses. I suspect that we will see these restrictions increase and spread as more COVID-19 infections occur and are identified. Yet even if your local area has not put restrictions in place, do it anyway.

People with ME are most likely at increased risk of severe disease and complications from COVID-19. So everyone in your house must practice extreme caution. This applies to any assistants or caregivers that come to your home as well. Everyone should follow the guidance above to wash hands frequently, disinfect surfaces, and minimize close contact.

COVID-19 is a tremendous threat to public health, which means my health, yours, and everyone we care about. The only weapon we have right now is to stop the virus from spreading through reducing human to human contact. No exceptions. No compromises.

Physical Safety

Violence in the home: As I said the other day on Twitter, I haven’t seen much public health messaging around domestic violence in a time of social distancing, and that really worries me. For many adults and children, home is not a safe place. But social distancing means those adults and children are at home, possibly with an abuser. Add to this the fact that everyone is under more stress, including economic stress, and confined to close quarters for longer than usual. This could be very dangerous for a lot of people. If you or someone you know is at risk the National Domestic Violence Hotline is open 24/7. You can call 1-800-799-7233 or text LOVEIS to 22522. And if home IS a safe place for you, then keep an eye on your friends and neighbors.

Substance abuse is more dangerous than usual for two reasons. First, people are home and under increased stress, economically and medically. That could exacerbate or even initiate a substance abuse issue. Second, people may be cut off from the substance they abuse, such as in my state where liquor stores are now closed. Withdrawal symptoms and overdose are dangerous medical situations. It can also be unsafe to be around someone who is using. If you or someone you know is at risk for substance abuse, call the Substance Abuse and Mental Health National Helpline at 800-662-HELP (4357). You can also reach out to the Crisis Text Line by texting HOME to 741741 (they have numbers for Canada and the UK, too).

Emotional Health

The COVID-19 pandemic is scary, as are the social responses to it. No one wants to be locked down or to see the healthcare system cracking as in Italy and Iran.

It’s scary for people with ME, too, but for additional reasons. Many of us are already socially distant, confined to our homes (or beds) by ME. That means we have less flexibility on how to get essential shopping done, how to access healthcare, how to clean our homes, and how to cope if our caregivers become ill. Anxiety, stress, fear, and grief are normal for all of us right now.

If you are in crisis, reach out to the Crisis Text Line by texting HOME to 741741 (they have numbers for Canada and the UK, too). In the United States, you can also call the National Suicide Prevention Lifeline at 800-273-8255.

We have a lot of additional options for managing these stressors and taking care of ourselves. There are strategies for managing anxieties about the COVID-19 pandemic specifically. Residents of Hubei, China have shared some of what has helped them while under lock down, including keeping a diary.

The brilliant and very wise Josie George wrote an article sharing her perspective on “how to make being stuck inside your house a more positive experience.” It’s a lovely piece, and well worth a read.

For those of us who, like Josie, have lived with varying degrees of social distance for years, it feels odd to watch the rest of the world try to catch up. It can be hard to hear people complaining about not being able to go out to eat or attend a party. Some things about our lives have not changed with COVID-19 because we were already living with so many restrictions.

Yet I have found all of it to be very disruptive. I have struggled with my mood because we were forced to cancel plans that were very important to us. I worry about my family and my friends. I already know at least one person who may have COVID-19, and so many people I love fall into one high risk category or another. The uncertainties–will we be able to get the supplies we need, when will I see my family in person, what will happen to the economy–are endless, and I hate that.

For what it’s worth, here is what I am doing to cope and protect my emotional health. Every day that energy and weather permits, my husband and I get outside for a few minutes in the morning. At about 3pm, we stop whatever we’re doing and have a cup of tea together. In the evenings, we alternate watching tv with listening to podcasts. We talk to our essential circle of family and friends daily. I am knitting as much as I can.

I also take time each day for reflection. I hold my loved ones in my heart, and then widen that circle to people with ME and their families. Then I open my heart to everyone who is scared or struggling right now, because so many people are. It helps me to remember that we are not alone. We are all connected, and not just by the threat of pandemic.

Be safe. Take care of yourself. We’re all in this together. Remember how strong you are.

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A New Virus and ME

Posted on February 28, 2020 by Jennie Spotila
Credit: NIAID

Updated: March 3, 2020

There is a new coronavirus circulating the globe, and there are quarantines of different sizes in multiple countries. This has led to great anxiety in financial markets, the media, and in communities. And you might be wondering: What should people with ME do?

I’ve gathered information from several infectious disease doctors, public health sources, and an ME specialist. While I can’t offer medical advice, I do have some basic information that I think will help (especially if you’re feeling anxious about what to do).

What is the virus?

The new virus is called SARS-CoV-2, and it originated in Wuhan, China late last year. It is believed to have jumped to humans from an animal source, as the original SARS virus did, although scientists haven’t established which animal.

SARS-CoV-2 causes a respiratory disease called COVID-19, which is characterized by fever, cough, and shortness of breath. The symptoms can range from mild to severe, and the more severe cases may require intensive care. The incubation period (the time from infection to symptom onset), is estimated to be 2 to 14 days, based on other coronaviruses. COVID-19 can be fatal in some cases, more likely in older patients or people with comorbid conditions. The World Health Organization estimates that 80% of people recover without needing special treatment.

The numbers of infected, deceased, and recovered people is changing all the time. As testing becomes more widely available, and incidences of community outbreaks change around the world, the numbers will certainly increase. We also have no idea how many people may be infected but not diagnosed because their symptoms were mild. Some scientists think that China may not be accurately reporting the number of infections. With those caveats, one large study estimated that the case fatality rate is 2.3%.

By comparison, CDC estimates that in the 2019-2020 flu season so far, there have been at least 29 million cases of flu illnesses. Most of those cases are not laboratory confirmed influenza, though. CDC also estimates at least 280,000 hospitalizations, and 16,000 deaths related to flu-like illnesses this season. For the last two years, the case fatality rate of influenza in the United States has been about 0.1%.

Edited to add: For readers in the UK, the NHS webpages on COVID-19 are really well done.

Should I Panic?

The simple answer is: no. Don’t panic about SARS-CoV-2. (Edited to add this excellent quote: “Panic and hysteria are not appropriate. This is a disease that is in the cases and their close contacts. It’s not a hidden enemy lurking behind bushes. Get organized, get educated, and get working.”)

There are a number of reasons why you might feel scared about it, though. The news media is giving us constant situation updates, which heightens our awareness. The lockdown of millions of people and businesses in China is impossible to ignore. Other countries are contemplating or actually taking quarantine steps, such as Japan closing all schools for a month. Financial markets are reacting poorly to the effect of quarantines on the economy. New outbreaks seems to be popping up without clear explanation, including a single case in the United States that does not appear to be linked to China. Edited to add: as of March 2nd, there is evidence of community spread in the United States. I won’t be able to keep up with the numbers every day.

One thing that is driving the fear is that this virus is new. We don’t know much about it, and we can only make educated guesses about what will happen if there is true pandemic spread. If the case fatality rate truly is 2%, then failure to contain the virus could produce frightening casualty numbers. However, if the case fatality rate is similar to influenza, then nationwide quarantine measures may be unnecessary.

Panicking doesn’t actually help anyone. We need public health decisions to be based on information, not fear. The same is true for individuals. Fear won’t help you protect yourself from SARS-CoV-2, but there are things you can do.

What Do I Do?

As of today, there are no special recommendations for immune compromised people on how to avoid COVID-19 infection. Common sense suggests, though, that anyone with a compromised or wonky immune system should be extra careful. That includes people with ME or other immune illnesses, people over 65, people undergoing chemotherapy, etc. The good news is that you probably know at least one thing you can do to protect yourself from SARS-CoV-2 because you already know how to protect yourself from influenza, and the prevention measures are similar. Edited to add: the 25% ME Group has posted recommendations specific to those with severe ME.

#1: Wash your hands. Seriously, wash your hands. Use soap and water, and wash your hands for at least 20 seconds after using the bathroom or blowing your nose/sneezing. I also wash my hands before using a restroom in a public place. Edited to add: this is a fabulous video that demonstrates proper hand-washing technique. Wash your hands before eating. Wash your hands when you get home from a public place. If there is no soap and water available, use an alcohol-based sanitizer with at least 60% alcohol.

#2 Don’t touch your face. If you are out in public, don’t touch your eyes, nose, or mouth. Once you start to pay attention to it, you will be amazed how many times you do this. But if you are in public–especially in a healthcare setting–don’t!

#3 Practice cough and sneeze etiquette. Cough or sneeze into a tissue, and then throw the tissue away. Then wash or sanitize your hands. If you don’t have a tissue, try to cover your mouth with your elbow instead of your hand.

#4 Avoid sick (or potentially sick) people. If someone you know is sick, especially with a respiratory illness, it’s better not to be in close contact with them. That can be hard if the sick person lives with you or is your carer, but try to minimize your exposure (and everybody should be washing their hands). It’s a good idea to avoid large numbers of people during flu season, if you can. Be especially careful to avoid coughing/sneezing people in healthcare settings. Don’t shake hands with people, either.

#5 Ask others to practice good hygiene/infection control. People who visit you, live with you, or help care for you should all practice the same infection control measures. They should wash their hands upon entering your living space and before preparing your food. They should cough and sneeze into tissues, throw the tissues away, and then wash their hands. If they are sick–or if someone in their families is sick–then it is best for them to stay away. This is especially true for caregivers of severely ill ME patients. Caregivers must practice good hygiene and infection control measures.

#6 Sick people should wear masks. CDC does not recommend that well people wear masks to protect themselves from SARS-CoV-2 (or influenza). However, people who are sick should wear masks to protect against infecting others. Note that commonly available surgical masks do not filter out most viruses because the particles are too small. The masks that are rated N95 or better will filter viruses, but they are hard to find (or the prices have been jacked up). N95 masks are also supposed to be fitted to the individual and then tested, and most people are not doing that.

#7 Have some supplies on hand, but don’t go crazy. Some experts have recommended preparing the same way you would for a big storm: have nonperishable food and a two week supply of medications on hand. I wish one of them would tell my health insurance company that so I can actually get the two week supply ahead of schedule. Keeping easy to prepare food on hand is always a good idea for people with ME anyway, since we never know when a crash will make food shopping and prep impossible.

#8 Prepare for disruption of your routine. I have personally found the angsting over quarantine to be a bit ableist, since millions of people with serious health conditions (including ME) are already living partially or entirely as if we are quarantined. Being told to stay at home is redundant for those of us that rarely leave it. However, restrictions on who can come to us, especially those who live alone and depend on outside help, would have a significant impact. Thinking through your backup plans in advance is a good idea. Can you get groceries delivered? What are your options for getting medications or other essential items if you can’t go out for a week or more? If the person/people who help you were unavailable, do you have backup help?

#9 Make a healthcare plan. You may not be able to get to your doctor’s office easily even on a good day, if you have ME. If you are sick with an acute illness on top of ME, it will be even harder. Does your doctor offer any virtual services, such as video or phone consults? Make a plan with your primary care doctor or nearby urgent care so that you can get tested and treated if you have symptoms of any flu-like illness.

#10 Do not delay seeking healthcare. Flu-like symptoms that might be of less concern in a healthy person can be very serious for people with ME, so consulting a healthcare provider should not be delayed if fever, cough, or congestion develop. The risk of complications is too high. In the past, I haven’t always bothered to call my doctor when I spiked a fever or had bad congestion. This year, I called my doctor the moment my temperature went up, and I was able to get treatment for suspected influenza that helped my recovery. If you get flu-like symptoms, call your doctor right away. Don’t wait and risk developing more severe illness.

#11 Stay informed, but in balance. Use a reliable source to stay aware of developments in your area. You need to know if there are health advisories or local outbreaks that affect you. Once you have that information, though, stop. Unless you are a virus geek like me, the constant buzz of updates and breaking news may just wind you up. The bad weather analogy may be helpful here. You probably pay different levels of attention to storms that are 1,000 miles from you versus 100 miles versus 10 miles. The risk assessment for a viral outbreak is similar.

#12 Get vaccinated, if you can. I know many people with ME who have been advised by their doctors not to get vaccinated for influenza and other diseases. I know many others who have not received that advice from a healthcare practitioner, but who decline vaccination for a variety of reasons including concern that it will exacerbate ME. I cannot override medical recommendations people receive (obviously). However, if you CAN get vaccinated, then please GET VACCINATED. If you contract influenza or pneumonia, you will be even more vulnerable to SARS-CoV-2 infection. Similarly, if you catch COVID-19, you will be more vulnerable to influenza. These are not diseases that anyone should have to experience simultaneously, and that is especially true for people with ME. For yourself and the other vulnerable people in your life, please get vaccinated if you can. (Edited to add this point on March 2, 2020).

There is no way to virus-proof ourselves completely. However, if you follow these common sense public health recommendations, you will be better equipped to handle an infection if it comes. Do what you can to minimize disruptions to your routine. If you do get sick, take it seriously and seek healthcare.

And one last thing: wash your hands. Seriously. Wash your damn hands.

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A New Year (With Cake)

Posted on January 2, 2020 by Jennie Spotila

In the last weeks of 2019, social media was full of people talking about their accomplishments of the last decade, or what they were most proud of, or the biggest changes they made. These posts made me feel terrible. What accomplishments could I brag about, apart from surviving?

The last five years have not been kind to me or the people I love. My mother died. Then my brother-in-law died. A year after that, my mother-in-law died. My husband had a stroke and is permanently disabled. My best friend’s mother died, and my other best friend’s father died. Family members moved away. We spent more than a year and thousands of dollars in a legal fight to keep my husband’s disability benefits. I had surgery, and my best friend broke her back. Another friend was diagnosed with a degenerative disease. My dog died.

Yet the first thing I thought of whenever I saw one of those decade accomplishment posts was, “My book isn’t done. I’ve poured so much into it, and I don’t even have a completed first draft.” I realized a few days ago that there’s a pretty good explanation for that. *gesticulates wildly at the previous paragraph*

For the last few years, I’ve marked the new year in cake form. I think my attitude about those years is pretty obvious.

As I thought about this year’s cake, though, I thought about some of the wonderful things that happened in the last few years. My niece and nephew (7 and 4 years old, respectively) are amazing and wonderful and funny. I started playing the cello, and my excellent teacher has also become a friend. I grew extremely close to two new friends, and I met one of my heroes. I attended a Yo-Yo Ma concert. My ME hasn’t gotten worse. The book isn’t done, but I haven’t given up working on it.

All the hardships of the last few years have not broken me. That’s what I want to remember, not all the failures and all the things I did not accomplish. Not the goals and milestones I did not reach. Not the losses.

I’ve done more than just survive. I am a different person, a better person (I hope). I hate things about my life, but not my life as a whole. If someone had told me in 2014 all the shit that was going to come down between January 2015 and January 2020, I a) would not have believe them and b) I would have noped right out the door. I never would have predicted that I could walk through all that and be ok.

I have no doubt that more fuckery awaits me. I love many people, and some of them are probably going to pass away before I do. I may never finish my book. There will be more hardship, and at the end I will die. Yet there will also be new people to meet and new things to experience. And you never know, I may actually finish the book and maybe you will get to read it.

So this year’s cake went in a different direction than previous years.

I don’t mean to tempt fate with this one. I want to take each year (each day) as it comes, and do my best with whatever happens next. I guess I’ve done ok so far.

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NIH Funding for ME Needs Life Support

Posted on November 7, 2019 by Jennie Spotila

Fiscal year 2019 is over, and we can now examine how much NIH spent on ME research.

In previous years, I’ve broken down the funding at a granular level. I have done that in a separate post for those who want the details. But as I analyzed the numbers this year, I realized that funding for investigator-initiated research needs immediate life support, or the future of ME research is grim.

Bottom line:  Funding for individual grants has dropped 25% since 2017. To understand why this is a problem, we need to start by understanding the different ways NIH spends and counts research dollars.

For our purposes, NIH research spending on ME research falls into three categories. First, there is investigator-initiated research, which means a researcher receives funding for a specific project. Second, there are the Collaborative Research Centers created in 2017. These Centers are conducting multiple projects and building research infrastructure. Third, there is intramural research done at NIH itself, such as the Clinical Care Study.

NIH adds these three categories of spending together and reports funding as a single number. That annual funding number is what NIH focuses on publicly, such as in the Categorical Spending Chart or in the NANDS Working Group Report. NIH points to increases in the number as evidence that it is improving ME research. When the number goes down, NIH frequently blames it on a low number of grant applications.

In 2018, NIH spent just under $12.8 million on the three categories of research spending (see note 1). In 2019, NIH spent $12 million on two categories: investigator-initiated research and the Collaborative Research Centers (see note 2).

The change from 2018 to 2019 is relatively small: a decrease of about 6%. That sounds pretty good, right? If we look at the total amount NIH has actually spent in the last five years on ME, we see this:

Obviously, 2017 was the high watermark of funding because it was the first year of the Collaborative Research Centers. Yet even with the decreases since then, spending is still substantially more than before the Centers were created. That should be good news.

However, focusing only on the total spending ignores where the money is going. When I examined the different types of spending, I found that the investigator-initiated category has dropped sharply since the Collaborative Research Centers were created. In 2017, NIH invested $6.1 million in investigator-initiated grants. In 2019, NIH invested $4.6 million (same as in 2018).

That is a drop of 25%. In fact, investigator-initiated funding is at its lowest since 2012.

You might be wondering: If NIH funding overall is increasing, what difference does it make if the money is going to the Collaborative Research Centers instead of investigator-initiated grants? The answer is that it makes a huge difference, not only right now but it could have dire long-term consequences for ME research.

A healthy research ecosystem needs diversity in ideas, personnel, and scientific approaches. We cannot predict where the best ideas or breakthroughs will come from. For example, in ME research, not everyone should be investigating the immune system. We need projects on neurology, dysautonomia, metabolism, and so much more. We need early stage investigators, and mid-career, and established experts. We need the longstanding giants and people who are new to the field. We need collaborative teams and we need individual labs. When all of these elements are in balance, and there are adequate resources, the research field can thrive.

Since 2017, NIH funding has emphasized the Collaborative Research Centers over the individual investigator grants. NIH points to the benefits to the Research Center model, with multiple projects organized around a central theme and research group. Dr. Koroshetz explained in 2017 that the Centers are not the solution but seeds that will eventually grow the research.

There are two big problems with this approach. First, and most obvious, is that this approach takes time that we do not have. The second problem is the negative consequences of concentrating resources at three institutions rather than supporting a wider portfolio of research.

We already face a severe scarcity of resources in the ME research ecosystem. For thirty years, we have not had enough money, and so we do not have enough scientists or institutions involved in research. When NIH funded the Collaborative Research Centers, it added new money to the field but it is concentrated primarily at Columbia, Cornell and Jackson Labs. These three institutions alone received more than 57% of the entire 2019 spending. In the short term, that means those three Centers are doing the most NIH funded research, training new investigators, and publishing data.

However, as investigator-initiated funding falls, then the ME field increasingly narrows down to those three Centers and collaborators. That means an individual investigator who is not at one of those three places could have a harder time getting funding. We will lose the diversity of ideas and scientists and trainees that come from funding many different labs. Unfunded investigators will leave the field. Our pool of experts for grant review will shrink further. The Centers can do a great job training early career scientists, but if those investigators can’t get funding to start their own labs, they will probably leave the field too.

Concentrating resources disproportionately at the Centers is also dangerous because it leaves the field vulnerable to crashing. NIH funded CFS research centers in the 1990s. By 2003, that funding was terminated, the Centers disbanded, and overall funding dropped 23% in a single year. Today, the Centers represent such a huge proportion of the research portfolio that if NIH decided to terminate them tomorrow, our funding would drop by more than 60%.

We need the entire ME field to grow, but not at the expense of one type of funding over another. ME research needs the Collaborative Research Centers AND investigator-initiated funding. The significant drop in individual grant funding since 2017 is a sign that we need life support, not patience while NIH waits for the Centers to stimulate the field.

NIH is a large institution, and large institutions don’t change course on a dime. But sometimes it seems like very few people at NIH even recognize the need for significant change. A case in point is the NANDS Working Group report. The Working Group spent a year creating the recommendations in that report, and not a single one addressed the urgent need for more funding. (Read my hot take on that report)

Cort Johnson reported that after the Advisory Council of NINDS voted to accept the Working Group report, several members of the Council told Dr. Vicky Whittemore that, “they had no idea ME/CFS was so underfunded, that so little research had been done, and that such big needs were present.”

How? Is? That? Possible?

The NINDS Advisory Council voted to approve the concept of the Research Center RFA. The Council voted to create the NANDS Working Group. This was not the first time Council heard about ME/CFS or the dire funding situation, not by a long shot. I bet if I went back through the meeting videos, I could find multiple times when it had been discussed in presentations. Furthermore, the Council has previously voted to approve funding for ME grants (every Institute Council votes on grants). So how is it possible that Council did not know?

NIH consistently says that they do not receive enough grant applications, and that the ME community must do more to stimulate research. However, the burden of increasing research funding should not be placed on the people with the disease. NIH’s neglect and, in some cases, active disbelief of ME has led to the situation we are in today. NIH must take all necessary steps to correct it.

This is an extraordinary situation, and one that is very much of NIH’s own making. NIH’s persistent failure to invest the resources necessary to grow this field is how we got here. NIH needs to fix this. It is patently obvious that the field needs more Requests for Applications with set aside funding. We know that RFAs attract an increase in applications. We cannot afford to wait for the Centers to stimulate more applications five, ten, or twenty years from now. We need more funding now. We need more Research Centers now. We need more investigator-initiated grants now.

NIH is not doing enough. The NANDS Working Group report is not enough. NIH’s current investment in ME research is not enough. Dr. Koroshetz and Dr. Collins could be heroes. They have a chance right now to stop the research free fall and get us back on the right track. They have to do this, or people with ME will suffer even more.

 

 

Note 1: Note that NIH calculates the aggregate number differently than I do, because I do my best to exclude amounts that were not actually spent on ME research, as in my 2018 Fact Check post.
Note 2: NIH won’t release its numbers for intramural funding until next spring (and those numbers are not always accurate), so for now we have to rely on just the numbers that are publicly available.
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NIH Funding for ME in 2019: The Details

Posted on November 7, 2019 by Jennie Spotila

Every year, I take a careful look at the funding that NIH reports it spent on ME research. Normally, this is mostly a number crunching exercise, but this year I wrote an entire post about a serious problem I discovered when I examined the numbers. I thought it warranted its own post, and you can read that here.

There is still value in the detailed number crunching, though. One kind advocate said that she trusts my numbers more than she trusts NIH’s reporting (thank you!). Let’s dive in!

2019 Actual Numbers

Based on currently available numbers, NIH spent $12,008,817 on investigator-initiated grants and the Collaborative Research Centers in FY2019. More than 60% of that funding went to the Centers. Unfortunately, NIH won’t release its numbers for intramural funding until next spring (and those numbers are not always accurate). I will update this post when those numbers are released, but for now we have to rely on the information that is publicly available.

Here is how 2019 compared to 2018. (You can read the details of 2018 here).**

FY 2018 FY 2019 % Change
Extramural $ $4,663,553 $4,627,302 < -1%
Intramural $  $1,146,841 unknown unknown
Research Centers $6,959,487 $7,381,515 +6%
Total $12,769,881 $12,008,817  -6%

A 6% decrease in the bottom line total doesn’t sound too bad. It’s not until you look at the trend over time, particularly in each category of spending, that you see the dangerous drop in investigator-initiated (extramural) funding since 2017. More on that below.

Of the twelve extramural grants in 2019, seven continued from last year: Davis, Friedberg, Light, Unutmaz, Williams, Nacul, and Rayhan. There were five new grants: Abdullah, Daugherty, Li, Natelson, and Younger, but only Younger’s was a five year grant.

The Research Centers are the same from last year: Columbia, Cornell, and Jackson Labs. Data Management Center: RTI. One note about Columbia’s Center: NIH gave the Center an administrative supplement award. However, Dr. Joe Breen of NIAID clarified that this award funded research on a different disease using methods from the ME work. I have excluded the supplement funding from my calculations.

Once again, NIAID and NINDS provided the vast majority of funding (78%) across all categories. Eight additional Institutes contributed the remaining 22%, almost all of which went to the Research Centers. NIAID split its funding almost evenly between grants and Centers, with 52% going to investigator-initiated grants. NINDS spent 65% of its funding on the Research Centers, and the remainder on investigator-initiated grants.

Three grants are now in their last year of funding (Friedberg, Unutmaz, and Williams). These are all large five-year grants, totaling more than $1.5 million in FY2019 alone. If these grants are not renewed or replaced, investigator-initiated funding will drop by 34% next year.

Which institutions and investigators are getting the most money? These seven investigators received 82.5% of the total FY2019 funding:

  • Jackson Labs/Dr. Unutmaz: $2,770,725
  • Columbia/Dr. Lipkin: $2,241,807
  • Cornell/Dr. Hanson: $1,849,848
  • RTI: $1,176,919
  • Stanford/Dr. Davis: $762,949
  • Ohio State/Dr. Williams: $568,411
  • London School of Hygiene & Tropical Medicine: $539,019

Further Observations

As discussed above, the overall funding declined 6% from FY 2018. However, if we look back to 2017, it’s obvious that we are well below the high watermark of NIH funding to date.

Since 2017, our total funding has declined by 14%, while investigator-initiated funding declined 25%. I first raised a concern about the drop in investigator-initiated funding in 2017. I am now so alarmed by the implications of this that I wrote an entire post about it.

Total Funding Extramural
FY 2017 $13,967,704 $6,128,925
FY 2019 $12,008,817 $4,627,302
% Change  -14%  -25%

What can reverse the trend? NIH must issue more Requests for Applications with set aside funding. I suspect that there are a number of investigators who would submit applications if they knew some were guaranteed to get funding.

My expectation is that NIH funding should grow substantially every single year. That is not happening, but it could. The only thing preventing NIH from setting aside funding for RFAs is NIH itself.

Meanwhile, time passes.

At the NIH ME/CFS Advocacy Call on October 17, 2019, Dr. Whittemore said the Trans-NIH ME/CFS Working Group was working on a strategic plan, with the NANDS report as a starting point. No timeline was provided.

 

**Note that NIH calculates the aggregate number differently than I do, because I do my best to exclude amounts that were not actually spent on ME/CFS research, as in my 2018 Fact Check post.

My thanks to Dr. Joe Breen at NIAID for providing me additional clarifying information.

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I’ve Missed You

Posted on August 17, 2019 by Jennie Spotila

I’ve missed you, my lovelies! I dropped off the grid for awhile in hopes of making progress on my book. I wrote some words. I also saw some beautiful things, and visited beloved friends and family. My husband and I celebrated the 25th anniversary of our first date. I made fairy houses for my seven-year-old niece, and my four-year-old nephew told me I looked pretty.

I took deep, freeing breaths.

Yet, it hasn’t been enough. I thought that if I deleted Facebook and Twitter from my phone, put my email on automatic reply, and took a break from obligations, that I would add thousands of words to my manuscript with ease. Nnnnnyeah–that didn’t happen. For the past few weeks, my inner dialogue has gone like this:

Me: Ok! No Facebook. No Twitter. Make the words!

Myself: I can’t.

Me: Where are the words.

Myself: Stop bugging me.

Me: I arranged everything so you could just concentrate and word.

Myself: Back off. Seriously.

Me: WORD.

Myself: PISS OFF.

Then I read Theodora Goss’s post about her burnout: “[S]ometimes I was angry about how much I was expected to do, how much people assumed I could take on. . . . Burnout is when you’re stressed for so long, that eventually you just have no reserves left.”

Burnout? My life is no longer the oil pipeline fire it was a few years ago. I researched burnout back then, and even drafted a blog post about it last year. I wrote, “Burnout is being done . . . with the effort of moving forward, of staying positive, of staying engaged. The problem is having to go to the well one more time and finding it dry.”

So yeah, I’ve been struggling with burnout for awhile. I recognized it over a year ago, and I started trimming activities and obligations. I tried to cut a bit here, get more organized and focused there, assuming that it would be enough to make room for this book and my life and everything would be fine.

And it is better. My stress level is down, to the point where I can take those deep, freeing breaths. But I’m still arguing with myself about making the words. I’m still spending too much time freaking out that things are not going according to my plan. I’m still resentful of even small disruptions, like the noise the cleaners are making in the next room as I type this. I guess I’m still feeling burned out.

My knee jerk reaction to that realization is MOAR RULZ = MOAR WORDS. Ignore the news even more, ignore all of you even more, cut every single thing that is not absolutely essential. Just art harder.

Except . . . that approach is how I got here. When my Mom died and my husband had a stroke (I hate you, 2015), my existence narrowed down to what was necessary for our physical and financial survival. “Me time” was the label I slapped on fulfilling emotional obligations to others. I evaluated every activity and every choice as a transaction. Because my ability to function physically and cognitively is limited and unpredictable, I do something today and can only cross my fingers and hope I’ll be able to do something tomorrow as well. There is enormous pressure to get my energy’s worth, so to speak.

In a blog post with the delightful title Knitting At The End Of The World, Austin Kleon writes that while Nero didn’t literally fiddle while Rome burned, “there’s the other meaning of the word fiddle: to fidget or pass time aimlessly, without really achieving anything. And yet, fiddling, in this sense, is so much a part of how artists arrive at their work: they fiddle around, they putter, they waste time.”

Seeing everything as a transaction, cutting out everything that is not essential to survival, wasting no time on fiddling–this is not how one recovers from burnout. Theodora Goss says that she’s been recovering from her burnout by taking “the Marie Kondo principle of what to keep and what to discard–does it spark joy?–and apply it to my life.” In the last four years, the only impractical thing I’ve done simply for the joy of it is learning the cello, and even then I’ve done it in my usual structured way.

Last week, though, I sat in the car and knit while my husband wandered a Civil War battlefield. I watched the trees, and took one of those deep, freeing breaths. In that moment, I remembered that my feet are on the ground, my lungs are breathing air, and I’m ok. And while I sat in the car, knitting and watching the trees, I thought of you. When I took those deep, freeing breaths, I breathed out the beginning of these words you’re reading now. I need more of those kinds of moments, so I can write.

There is no way to eliminate obligations. I can’t delegate responsibility for our physical and financial health. I also can’t push myself to the next deadline (and the next and the next) in an endless chain of necessary transactions. I can’t buckle down and overcome my burnout with organization and determination anymore than I can cure myself of ME through force of will.

What I learned this summer is that the equation is not more rules = more words. The equation is fiddling + breathing + time + love = more (and better) words.

My feet are on the ground. My lungs are breathing air. I miss you, but I made you some words.

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I’ll Make It Simple

Posted on June 5, 2019 by Jennie Spotila

Dr. Jose Montoya has been fired from Stanford University after an investigation into alleged violations of Stanford’s rules of conduct, including sexual harassment, misconduct and assault. The Stanford Daily published an anonymous statement from a group of people affected by Dr. Montoya’s actions:

This past March, a large group of women who have worked under Dr. Montoya came forward with extensive allegations of sexual misconduct, assault and harassment,” they wrote. “The allegations included multiple instances of Dr. Montoya attempting unsolicited sexual acts with his female employees, among many other instances of harassment and misconduct, and were confirmed in an investigation.

I have seen a lot of hot takes about this on Twitter in the last 24 hours, but I’m going to make it very very simple:

This is not about us.

Dr. Montoya’s patients are obviously affected by this, as is his research to some extent. But it is not about us. Neither his patients, nor his colleagues, nor his research subjects are the primary victims here.

This is about the women who reported the allegations, and Dr. Montoya himself.

Stanford conducted an investigation over several months and concluded there was cause to dismiss Dr. Montoya. Remember, though, Stanford’s primary interest is protecting itself from lawsuits–either from the women who made the allegations or from Dr. Montoya. A university investigation is not a court of law, but it’s also not a joke.

Dr. Montoya can appeal Stanford’s decision, and potentially sue Stanford as well. The women who made the allegations can also sue Stanford and/or Dr. Montoya himself. These cases take a long time, but we may eventually learn more details about these incidents. Right now, we have very few facts and speculation is not helpful.

But I’ll make it simple: THIS IS NOT ABOUT US.

This is about the women who made the report. That’s not an easy thing to do. It’s even harder to be the target of harassment and assault. We cannot minimize that harm. If the report is true, then multiple women have been hurt professionally, emotionally, and perhaps physically. And if the report is untrue, then Dr. Montoya has been harmed.

So all the hot takes I saw yesterday? Sit down. This is not about prejudice against ME research or patients. It’s not about finding a way for Dr. Montoya to stay involved in ME research. It’s not about whether we will ever know what really happened.

This is not about us.

If the allegations are true, then I don’t want Dr. Montoya anywhere near ME research and people with ME. I know how hard it is to make a report of sexual harassment. Stanford’s finding of sufficient cause to dismiss, while not definitive proof, is strongly suggestive that the allegations are true. We’ll know more if/when more details become public.

Until then, the most important thing is preventing further harm. No employee, student, or patient at Stanford should be put at risk.

Updated June 6, 2019: The Stanford Daily published a statement from Dr. Montoya provided through his attorney. I will not be commenting on the statement.

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Another NIH Funding Fact Check

Posted on May 29, 2019 by Jennie Spotila

In April 2019, NIH finally published their funding numbers for ME/CFS research in 2018. That means it is time for another fact-check and correction!

Update October 16, 2019: as explained below, I received more accurate numbers from NIH and have updated this post to reflect that. For ease of reading, I changed numbers throughout this post as warranted without striking through every previous number. I have also updated the graph, and my original post about 2018 funding.

For the second year in a row, NIH has significantly overstated its investment. For 2018, NIH claims it spent 9% (almost $1.3 million) more than it actually spent. NIH also claims that funding fell by 4.5%, when the truth is that our funding fell by almost twice as much. In a disease like ME/CFS, this has serious consequences because the funding number is at the center of so much policy debate and advocacy efforts.

How Much Was Spent in 2018?

On the Categorical Spending Chart, NIH states that it spent $14 million on ME/CFS in 2018. The chart links to the list of projects and grants included in that number. Here is how it breaks down:

  • Extramural grants: $4,663,553
  • Collaborative Research Centers: $6,959,487
  • Intramural projects: $2,417,815

This comes to a total of $14,040,855, which NIH rounds down to $14 million. But there’s a problem, and it’s the same problem I found in 2017. The intramural number is not limited to money spent on ME/CFS.

The Intramural Problem

NIH lists three intramural projects in 2018:

  • Dr. Avindra Nath’s Clinical Care Center study: $750,000
  • Dr. Leorey Saligan, “Investigating Correlates and Therapeutics of Fatigue”: $172,552
  • Dr. David Goldstein, “Biomarkers of Catecholaminergic Neurodegeneration”: $1,495,263

*record scratch* $1.5 million to Dr. Goldstein for biomarkers? For real?

Actually no, that number is not for real, at least not as far as ME/CFS is concerned. Dr. Goldstein’s project page lists a number of different projects, most of which are related to Parkinson’s Disease. The connection to ME/CFS is the fifth item listed under Collaborations:

e) Clinical catecholamine neurochemistry in chronic fatigue syndrome: We are collaborating in an intramural study of chronic fatigue syndrome (NIH Clinical Protocol 16-N-0058, Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome, PI Avindra Nath) by conducting screening autonomic function testing and provocative tilt table testing and assaying plasma and cerebrospinal fluid levels of catechols.

No specific amount of funding is listed for any of the subprojects on Dr. Goldstein’s intramural study. I ran into the same problem last year. In 2017, NIH included the full cost of the Human Energy and Body Weight Regulation Core in its ME/CFS spending, despite the fact that the funding was actually spent on twenty-six different clinical protocols. When I asked NIH how much of the funding could fairly be allocated to Dr. Nath’s study, the NIDDK Office of Communication said there was no such breakdown available. I had to guesstimate how much funding to include in 2017, and originally, I had to do the same for 2018 as well.

I divided the Goldstein funding among all the listed subprojects and collaborations, and arrived at a 2.5% share to the ME/CFS study. Is that fair or correct? No idea!!! The lack of precision in NIH’s accounting (at least publicly) means we have to guess. One thing I do know for sure: NIH should not claim the entire $1.5 million from Goldstein’s work in the ME/CFS category. It artificially inflates the funding number by a significant amount.

In June 2019, I asked NIH for the actual amount that Dr. Goldstein spent on his ME/CFS project. In September 2019, Dr. Vicky Whittemore informed me that Dr. Goldstein’s laboratory:

spends about 15% of his resources on ME/CFS research, including their testing equipment in the Patient Observation Room, Research Nurse, Clinical Research Nurse Practitioner, catechol assay personnel and systems, reagents and disposables, computer software and hardware, and his time and effort. This is all factored into the overall budget his lab receives and his lab does not receive specific funds that are designated to be spent on ME/CFS research. The budgets for the intramural labs are provided to the lab overall and they don’t allocate or budget for specific research projects – they just do the research.

Accordingly, I applied 15% of Dr. Goldstein’s budget ($224,289) to the ME/CFS total. Back in October, I calculated that NIH spent $11,623,040 in 2018. With the addition of the Nath, Saligan, and Goldstein intramural funding, I now calculate that NIH actually spent $12,769,881 in 2018.*

How Big Is The Difference?

NIH’s failure to accurately report the intramural funding number results in a significant overstatement of the ME/CFS investment for both 2017 and 2018.

NIH Calculation My Calculation NIH Overestimate
FY 2017 $14,725,728 $13,967,704 5% more than spent
FY 2018 $14,040,855 $12,769,881 9% more than spent

In case the table is unclear, NIH overestimated its ME/CFS spending in 2018 by 9%, or almost $1.3 million. The overestimate is due to NIH’s failure to assign the correct amount of intramural funding to the ME/CFS total.

The inflation of the funding number also affects the calculation of changes in funding from year to year. Using NIH’s numbers, funding decreased by 4.6% from 2017 to 2018. But using the actual amount spent on ME/CFS, funding decreased by 8.5% in 2018. Here’s a graph of NIH’s calculation compared to mine for 2016 through 2018:

Numbers Have Consequences

When NIH reports inaccurate numbers on its Categorical Spending Chart, those numbers are relied upon by Congress, journalists and advocates, even though the numbers are actually wrong.

The September 2019 Report of the NANDS Council Working Group For ME/CFS Research is a prime example. That report uses NIH’s inflated funding numbers in multiple places, including Figure 1 on page 7. Because this is an official report, the inaccurate numbers will be enshrined in all subsequent discussions. In a research area like ME/CFS, where the annual investment is so incredibly low, relying a number that is off by more than $1 million is a big deal. That $1.3 million is almost enough to fund another Research Center for a year. It makes it look like NIH is doing substantially more than it actually is.

Reporting that funding declined by 4.5%–when it is actually 8.5%–is significant. It obscures the truth and minimizes the very serious funding problem in ME/CFS research. Counting money towards ME/CFS that was not actually spent that way, even if it is due to a sloppy accounting policy and not malfeasance, is misleading. This is true for every research category, but the effect is much stronger for diseases like ME/CFS that are already subsisting on tiny crumbs from the NIH budget.

This is yet another way that the burden of accuracy and attention to detail is shifted to our disease community that is already carrying so much. Why did I have to invest hours of my time over several weeks to ferret out the correct number and pass that information on to you? Why should I have to make my self sicker and do NIH’s accounting job?

Because it has to be done. We need the accurate numbers, and we need to use them everywhere. Use them in talking to Congress, in asking questions of NIH, in participating in discussions like the NANDS Working Group, in speaking publicly about the ME public health crisis, and in writing about it.

I believe my work has shown–over many years–that regardless of the intentions of individuals at NIH and other agencies, we cannot assume that the agencies will do the right thing and report the right thing to us. We have to do this fact-finding work in order to hold them accountable.

If our goal is to secure more research funding in order to identify treatments for patients, then use the correct information. NIH spent $12.8 million on ME/CFS in 2018, not the $14 million that they claim. Funding was down 8.5% in 2018, and we slide backwards down the funding ramp that Dr. Francis Collins had promised us.

Use the correct information. Require NIH to use the correct information, too. And trumpet the truth: ME/CFS funding at NIH fell by 8.5% in 2018.

 

*I’ve corrected that earlier post with these new numbers.

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#MillionsMissing 2019

Posted on May 11, 2019 by Jennie Spotila

We are the disappeared
The vanished
The millions missing
Blink
Snap your fingers
Gone
Do you miss us?
Does anyone ask what happened to us?
Does it cross your mind
that we are still very much alive?
We think of you
We have lifetimes to wonder what it would be like to rejoin you
Living
The blink
The snap
Was quick for you
But for us it is endless
Life in slow motion
Eroded down to almost nothing
But not quite
We are the #MillionsMissing
And we have a voice
And we’re getting louder

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I Want To Believe Dr. Collins, But I Don’t

Posted on April 17, 2019 by Jennie Spotila

Dr. Francis Collins, Director of the National Institutes of Health, spoke to the ME community earlier this month at the meeting on Accelerating Research on ME/CFS. For the ten minutes he was present, Dr. Collins said a lot of nice things. I sincerely want to believe it all.

But I don’t.

I want to believe that the meeting is “a real milestone.” I want to believe that the Trans-NIH ME/CFS Working Group will “bring forward ideas about new projects, new kinds of funding,” and that those ideas will have Dr. Collins’s “strong personal support” and thus become reality.

Except Dr. Collins’s remarks this month were strikingly similar, in many ways, to what he said exactly eight years ago at NIH’s State of the Knowledge Workshop on ME/CFS Research. In 2011, Dr. Collins pointed out that “we really need to understand a lot more about what subsets might exist.” He said there had been “hopeful presentations” about approaches coming out of new technologies. He expected “new ideas” to come out of that workshop and that “those new ideas might suggest new research.” Subsets, the promise of new technologies, and new ideas. Dr. Collins hit all these same notes in his 2019 remarks.

Even so, I want to believe him. Dr. Collins said, “we are part of a family now.” He said he is impatient for progress, just like we are. He acknowledged that NIH has often not seemed to be as responsive as our community wanted, and he regrets that. Dr. Collins was correct when he said that NIH had ratcheted up funding; there was a 75% increase from 2016 to 2017. I want to believe him when he said, “we don’t want to wait a minute if we can see a way to accelerate that progress.”

Except . . . In 2018, NIH funding dropped 17%. Back in 2015, Dr. Collins promised to ramp up funding, but ramps don’t go up and down like a roller coaster. In 2015, Dr. Collins also said, “Give us a chance to prove we’re serious, because we are.” Yet we already know that NIH’s plan is to plant the seeds of the Collaborative Research Centers and then wait. We are halfway through FY 2019 and NIH has made only two new ME/CFS grants, so we are on pace for another decrease in funding.

Dr. Collins said, “We want to be [the National Institutes of Hope] for ME/CFS.” He said, “We want to provide the kind of hope for ME/CFS that is attached to action . . What follows after this meeting is going to be actions as well.”

I want, with all my heart, to believe him. But I can’t.

It’s not that I think Dr. Collins is insincere.

I don’t believe him because we have heard all this before, over and over for many years.

I don’t believe him because the losses are mounting: The money. The scientists. The years. The people.

I don’t believe Dr. Collins because—in this same speech—he signaled to us that we couldn’t. He said, “We have done what we can in terms of the resources, both intramurally and extramurally.”

NIH has done what it can.

Dr. Collins was, I think, trying to give our community hope. He was saying that NIH has gotten the ball rolling with the Collaborative Research Centers and the young investigators meeting. At the same time, he was telling us to be patient. NIH has done what it can, and he wants us to wait for the Working Group to come up with new ideas. As if these new ideas will be a magical substitute for the solution we all know is needed: large scale research funding. He was asking us to hope that actions would follow this meeting, instead of delivering those actions.

I am long past the stage in my life where I will find hope in promises, especially promises from people in positions of power. To believe such promises requires trust, and I have been disappointed too many times.

When actions prove that a person can be trusted, then I will trust. When I see sufficient actions, then I will have hope. To me, hope looks like that 75% increase in funding, but repeated many years in a row. Hope looks like a dozen more Collaborative Research Centers funded by NIH in the next five years. Hope looks like one hundred NIH-supported postdoctoral fellowships.

There are so many people affected by ME who need hope in order to keep going. They believe that research money and treatments and public acceptance are on the way, and soon. They believe that they can trust our government to do the right thing, if we just provide the right information, if we ask in the right way. Reasonable people, when presented with the facts, will do the right thing. I would like to believe that too.

Yet hope is not a plan. Hope, without action, is just a wish. Dr. Collins quoted Peter Levi, and said, “No action, no hope.” I would like to see every #MillionsMissing event blanketed in signs that say: “No Action, No Hope.”

With all my heart, I want to believe the good things Dr. Collins said. But given everything I have witnessed in the last 25 years, I need a lot more than words.

I will believe in the National Institutes of Hope for ME/CFS when NIH starts acting like it.

 

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