Responding to the NIH RFI

For the first time, NIH has requested public input into the future direction of ME/CFS research. This is a chance for researchers, organizations, advocates, and others to provide input directly to the Trans-NIH ME/CFS Working Group on the following questions:

  • Emerging needs and opportunities that should be considered as new ME/CFS research strategies are developed.
  • Challenges or barriers to progress in research on ME/CFS.
  • Gaps and opportunities across the research continuum from basic through clinical studies.

The deadline for response is June 24th, and responses to the RFI must be submitted via email to

I sincerely hope that many experts will submit their input, and that the input will be specific and constructive. A general call for more funding does not get at the questions NIH has asked, although it is obviously part of the answer. I am awaiting confirmation from NIH about whether they will make responses publicly available after submission.

I’m working on my own response, and I thought my outline might help readers brainstorm about what to say. This is just my own personal opinion. You may have other priorities that you think are important. I’ve previously shared the elements of my road map for ME/CFS, but I got a lot more specific in answering this RFI. You could also look at the P2P Action Items for inspiration. Here’s my outline:

Emerging needs and opportunities:

  1. Investigate energy production and recovery mechanisms.
  2. Confirm the utility of two-day VO2max cardiopulmonary exercise testing (CPET).
  3. Analyze existing samples for biomarker discovery.
  4. Undertake a deep dive for biomarker discovery.
  5. Conduct an accelerated longitudinal study to elucidate the natural history of ME/CFS.
  6. Address the questions of burden of disease and undiagnosed ME/CFS patients.
  7. Invest in development and validation of outcomes measures.
  8. Fund systems biology and computational biology approaches to pathophysiology.
  9. Leverage wearable devices to objectively measure function.

Challenges and barriers to progress:

  1. The failure to reach consensus on case definition is a steep barrier to progress across the ME/CFS landscape.
  2. More resources and heightened urgency are required to address this public health crisis.
  3. ME/CFS patients, researchers and clinicians are not involved in NIH’s efforts in a sustained and meaningful way.
  4. There are very few ME/CFS researchers in training.
  5. Methodological flaws make it challenging to interpret the evidence base.

Gaps and opportunities across the research spectrum:

  1. ME/CFS research requires a coordinated, strategic plan.
  2. Clinical trials and pediatric research are significant gaps in the current approach to ME/CFS research.

If you have the ability to submit responses to NIH, I strongly encourage you to do so. One of the worst outcomes would be if NIH gets very few responses to this RFI. That could reinforce the view that there are just not that many people interested in ME/CFS research. So if you can send even one specific answer to NIH, I hope you will!

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31 Responses to Responding to the NIH RFI

  1. LEE-ANNE DU PLOOY says:

    Hi Jennie, I’ve only recently found your site, can’t read much detail due to recent ME relapse. I finally felt like someone “gets it” when I connected with ME Research UK who says British research/diagnosis focuses far more on the inflammation in the brain than the fatigue, etc. symptoms. Their research have been most helpful after a year of active inflammation in my brain, increased loss of brain function and all the US doctors got stuck on the CFS (you’ll understand there’s a lot more to it but I’m trying to keep this short). I wish the US research would start to focus on the existing data of what the disease does to the brain because having someone direct me to the correct treatment meant I became functional again much sooner than most. I don’t claim to understand the disease and think that everyone will be “fixed” if they do what I’ve done but I know for sure that all the doctors I saw in the US focused solely on the fatigue (and adrenals or whatever they wanted to call it) but breakthrough only happened when we focused on the brain. I do believe that there is still too much confusion with CFS and ME, there is a difference and ME patients becomes invisible in the wake of combining the two – I know I’m not alone in this experience. Only research in the right direction will help this. If this is of any worth, I’d love to see you or someone who are qualified enough to add this, do so. Thank you so very much for your commitment to this cause!!!

    • Jennie Spotila says:

      I talk about inflammation and the brain in my submission, although not in great detail. Very good idea, if someone can write it up.

    • Judith says:

      I’d love to know what you did that has given you relief and lets you be functional. My current doc doesn’t even believe in CFS/ME and won’t look at any research I bring her. I do know that my white blood cell count has been over 14k for the last 6 years and my inflammatory markers are all up. I can feel inflammation in my head ALL THE TIME. I have multiple doctors looking in multiple directions, but if what you’re doing is simple, maybe I can approach them with it as a possibility.

      • LEE-ANNE DU PLOOY says:

        Hi Judith
        I’d love to give you a detailed response to explain what I’m using and for what reason but it will take me a couple of days to write. That way you can decide whether it might help you in any way. It’s not related to any specific products – way too many of those on the market that doesn’t work! But I’d be so happy for you if something I’m doing might help you.
        Please email me at

  2. Chris says:

    Jennie, we all owe you once again–thanks for this strong reminder, and for the very specific and helpful suggestions for the kind of thing that might be helpful.

  3. just says:

    Hi Jennie,

    Thank you for the work that you have been doing.

    I would like to send information to the NIH and am wondering if you have suggestions on the formulationof this letter to HIH. Are you sending yours as is presented on your website. Thank you

    • Jennie Spotila says:

      The outline with numbered points is the framework of my submission, but I include a lot more detail. I suggest checking out the P2P Action Items I linked to for more ideas.

  4. Carollynn Bartosh says:

    Thank you for yet another time of keeping us informed and prompted. I imagine many of us are in a crash after the efforts of Millions Missing a few weeks ago and/or other reasons, as I am now. Is it awful to ask if you might give us the opportunity to sign on to your letter? I know you know I’m not trying to weasel out of anything, but my brain and health just can’t mount the effort in the time required. Please be candid in your response. I am most grateful for all you do.

    • Jennie Spotila says:

      No, I’m going to keep my paper as a single author memo. Honestly, it’s just easier that way for me. In this instance, I don’t think adding names would have much impact. I’m assuming (hoping?) that the Trans-NIH Working Group is focused more on substance than how many names sign on to a paper.

      • Justin Reilly says:

        May I suggest that Carollynn and any other person who supports your letter simply send NIH an email saying she supports your submission?

      • Carollynn Bartosh says:

        I appreciate where you’re coming from, and that you voiced it. I’ll hold on to that thought about substance and trust our village.

  5. kathy d. says:

    I don’t know if I can write my own note to NIH, but if I rest a lot, then perhaps I can do it.

    I would like studied inflammation of the brain and its manifestations — and to look at Stanford studies, Dr. Komaroff’s studies at Harvard, and other countries’ studies, as in Japan.

    I say this as someone who gets headaches immediately if I see black and white geometric patterns and sometimes other patterns, flashing lights online, coming attractions before movies — i.e., speedy footage. If I fast forward the remote, I can’t watch the screen.

    Also, there is the issue of changes in genetic expression after exercise. This needs much study.

    And then there is the post-exertional collapse (as it’s misnamed “malaise”), which hits so many of us, and can last for a long time.

    And then there’s muscle pain which is a big problem for me.

    I’m very glad you’re submitting your suggestions. I know they will be thorough and well-written.

  6. Justin Reilly says:

    Jennie, I agree that we really need a coordinated, strategic plan.

    I would add to your list the below. Just adding my two cents to the questions asked, fwiw, not expecting you to amend your response to the RFI.

    Emerging needs and opportunities:
    – Specifically recommend funding of Ron Davis’ work at Stanford.

    Challenges and barriers to progress:
    – Specify that CCC and ICC should be used in all NIH studies (alongside Fukuda, just for reference purposes, with the understanding that Fukuda is not a valid definition)
    – Misinformation disseminated by NIH and CDC including on their websites.

  7. Justin Reilly says:

    My Response to NIH’s RFI

    Sorry that this comment is partly repetitive of my earlier one.

    FWIW, the following is my response to the RFI. Anyone and everyone please feel more than free to use my response as a basis for your response or to simply send my text in yourself, modified or unmodified, or send a response to NIH in support of mine (eg “I support Justin Reilly’s response to Notice NOT-NS-16-024; Request for Information: Soliciting Input for New Research Strategies for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)) Thank you!

    To: The Trans-National Institutes of Health (NIH) ME/CFS Working Group

    Re: Response to Notice NOT-NS-16-024; Request for Information: Soliciting Input for New Research Strategies for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)

    Dear Working Group:

    The following is my response to NOT-NS-16-024; Request for Information: Soliciting Input for New Research Strategies for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). Please excuse the fact that I am too sick to go into detail regarding each recommendation. Be assured I am a long-time patient and that I have a quite thorough knowledge of the history of ME including how it has been dealt with by NIH (for a non-employee of NIH) and I have carefully considered my responses and I strenuously urge you to seriously consider and to implement them.

    Emerging Needs and Opportunities:
    – None identified as such

    Challenges and Barriers to Progress (in descending order):
    – The Canadian Consensus Criteria (“CCC”) and International Consensus Criteria (“CCC”) should be used in all NIH studies (alongside the Centers for Disease Control (“CDC”) Fukuda CFS Case Definition (“Fukuda”), just for purpose of reference to past studies, almost all of which have used Fukuda, with the understanding that Fukuda is not a valid definition).

    – Misinformation disseminated by NIH and CDC including on their websites.

    – Failure to have experts (clinical, research and patient) in the disease deciding all aspects of the how ME(‘cfs’) is dealt with by the public health service including NIH. For NIH this includes these experts being involved in drafting and implementing a strategic plan, making grant funding decisions and drafting information distributed by NIH on the disease, including on the NIH website.

    – Funding of unhelpful or harmful studies (studies that don’t add much to the knowledge base or are actually pseudo-science) by NIH including psychological and psychiatric studies (including Cognitive Behavioral Therapy and Graded Exercise Therapy studies), studies by biased researchers (e.g. Suzanne Vernon) and studies using invalid definitions of the disease such as CDC Fukuda and CDC Reeves while failing to use valid definitions, namely CCC and ICC.

    – Use of the misleading term “CFS,” as opposed to the valid, longstanding nomenclature “ME.”

    – Gross lack of funding (and sense of urgency).

    Gaps and Opportunities:
    – Full funding of all of Prof. Ronald Davis’ work at Stanford University and Open Medicine Foundation.
    – Need a coordinated strategic research plan drafted by clinical, research and patient experts.
    – Biomarkers research
    – Neuro-inflammation research

    Thank you for your consideration and your service.

    Justin Reilly, JD

  8. Pingback: Contribute to NIH Research Strategy | Tips for ME

  9. adlie says:

    nih need to acknowledge severe sufferers’ existence. that is where signals will be found.

    hire a !@#$!# phlebotomist. rent a @!#$!@$ car.

  10. Laurie P says:

    June 23, 2016

    Dear Trans-National Institutes of Health (NIH) ME/CFS Working Group Members,

    Thank you for your Request for Information: Soliciting Input for New Research Strategies for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), Notice Number: NOT-NS-16-024.

    Before I start, I’d like to acknowledge the untimely death of M.E. patient and advocate Jodi Bassett, founder of the Hummingbirds’ Foundation for M.E., who died at home, surrounded by her family on June 11, 2016, at the age of 40.

    As I am a severe ME/CFS patient and one of the Millions Missing, I’d like to start by introducing myself since who I am is inseparable from how I expect to be treated as a human being and what I expect from health care as a citizen of the United States. I have been taken out of too much already; I won’t be taken out of my letter too. If medicine is to treat patients, our stories must be heard, honored and counted; not cast aside as a nuisance to the practice of medicine. In part, it is because we are not deemed competent to bear witness to our own experiences that we are therefore left to suffer in isolation in a hell on earth. I have been ill since May 1983, when at the age of 17, while a junior in high school, I had mono and a severe strep throat at the same time. I gave up all of my favorite activities; including riding and showing my dearly loved horse, working on the farm where she was boarded, working as a summer camp counselor at this farm and seeing my friends there. I rested and concentrated on high school and was able to finish high school but only because I finished a semester early. I never regained my health, and at age 18, I was bedridden with daily migraines, vomiting and many other symptoms. I was so ill, I was afraid I was going to die. “Fatigue” was never a word that I would have thought to use to describe what I felt and endured. At this time, I was diagnosed with migraine, hypoglycemia and mitral valve prolapse. During the next 12 years, some of the time I was bedridden, some of the time I was house confined, some of the time I tried to work part or full-time, and/or I attended college either part or full-time. The last time I worked at a job, I was 24 years old and had to stop for good after adult chicken pox. I was also married during some of this time and we owned a house. Eventually, I lost my marriage and my home. After ten years, at age 27, I was finally diagnosed with CFS; for which I was told most people get better over time. I was also diagnosed with fibromyalgia, irritable bowel syndrome, multiple chemical sensitivities and numerous allergies to dusts, molds, tree pollens, grass pollens, weed pollens, dander from various animals and many foods. I was never cautioned about exertion and I engaged in a horrendous push-crash cycle not understanding that I was still doing too much. Only lengthy periods of chronic migraines would bring me to complete inactivity. I eventually finished my college degree, studying from home and with minimal in person attendance through an off-campus, accredited college program just before my 29th birthday. I was accepted to graduate school in the same off-campus, accredited program but after extensions to complete my work and medical leave, I finally had to withdraw for good. I had been in and out of college so many times that I nearly paid for two degrees just to complete one. At the time I withdrew from graduate school, I didn’t even understand my own undergraduate work anymore. I spent my 30s mostly house confined and most of my 40s to the present bedbound. I am now 50. I am 5′ 5” tall, I weigh 98 lbs., I look sick and my eyes show the pain and shock that I’ve endured all of these years. I have been sick and without appropriate medical care for 33 years.

    I am not communicating now because I am able. On the contrary, interacting with other people; having thoughts and language and conversations in any kind of active way in my brain, as opposed to passively skimming written information that I’m allowed to forget; on certain levels, as I read it, literally makes me sick with migraines, vertigo and other symptoms and incapacitates me. Pieces of thoughts and memories and conversations spin around in my head; like my head is a blender, never letting me rest. It even affects my sleep and dreams as my mind is constantly trying to assemble the spinning fragments in the blender to make coherent whole meanings and memories. It’s an amnesiac blender, constantly turning, trying to coalesce thoughts, memories, conversations and meaning in a waking-sleeping-spinning-timeless-time of constant sickness. It would never occur to me to call this “fog”. It feels torturous to be writing this now. It will be worse when I’m done and it will spin in my head more and I’ll remember less. It is an act of faith to write this and let it go, as the reader will understand it better than I will. All I know is that it is true when it comes out of me and it’s something that I’ll stand behind and then it’s gone from me.

    Since last summer, during the sweltering heat of August, when a week and a half of construction disrupted my sleeping and resting and ability to run air conditioning during the days; due to the fumes from the construction, I’ve taken the hardest hit I’ve ever taken and have declined into especially more severe vertigo, orthostatic intolerance, cognitive difficulties, exhaustion and sound sensitivity. I feel as though I am continually falling; getting closer and closer to death and that I have lost the strength to keep quiet; as though I must scream to hear my own voice again and remember my soul. Consider this letter my scream, before I go missing again; away from too many thoughts and words in order to take care of myself. Consider this letter a scream that I want heard in case I never return. Consider this letter a scream from all the generations that came before me and all that they had to endure so that I could even exist; screaming for my well-being now, so that I may live in my time. I have some Blackfoot ancestry on my mother’s father’s side of the family. My great grandmother; on my mother’s side of the family, died giving birth to my grandmother. My great grandmother; on my father’s side of the family, was able to come to America as a teenager from Poland and to create a new life and a family for herself here. Her brother; who stayed in Poland, was shot and killed by a Nazi soldier while he was out gathering firewood. I’m an only child and I was never well enough to have children. I haven’t been well enough to trace my family tree and I’m missing branches I’ll never create in my family tree because of the politics of this disease. Consider this letter a scream from the children I’ll never have and from their children and their children and their children and so on through the future generations that will never exist. No more generations should be lost to the politics of this disease; which are the politics of torture and of genocide.

    These are my recommendations:

    1. A meaningful, explicit, official government apology for decades of the malpractice of politics, narcissism, sexism and cookbook medicine, replacing respectful, intelligent, compassionate listening to patients and quality care. From the government, to top medical institutions, educational institutions, journals, textbooks, hospitals, doctors offices… there is absolutely no excuse whatsoever for the mistreatment that patients have been subjected to. If a child or spouse living in a household were physically abused by being denied help to get required medical care, financially abandoned when care could be afforded, further violated by being told that they weren’t actually ill and threatened by the knowledge that to speak up could make things worse for them, it would be considered criminal. Why is it alright when governments and doctors commit these crimes? Without a meaningful, explicit, official government apology and immediate correction of inaccurate, abusive, malpractice-worthy material, along with a substantially corrected accurate narrative, I don’t see how things can change at the accelerated pace that desperately needs to happen; a pace that will quickly shift decades’ worth of untruths. Patients deserve the true PACE – Public Apology Correcting Errors. The government then has to pull up on the old boot straps and get to work creating an extensive, accelerated, collaborative, biomedical research effort that in itself sends a very strong, new, correct message about this disease.

    Furthermore, an apology is crucial to shift things as quickly as possible so that patients can get an early diagnosis, appropriate care and societal understanding so that their lives aren’t destroyed because they did too much or did the wrong things. Patients should not be blamed for having a disease. Children need to have their needs understand and appropriate accommodations made for their educations. College students and workers also need to understand their limitations and have the appropriate accommodations. More severely disabled people need to be able to get the disability benefits that they are entitled to without further harm to themselves.

    I personally had family who financially supported me for about 2 decades and helped me try everything I could to get better. My family spent their savings on me. My parents were never able to retire to Florida like they had planned and they live very minimally now. Think about my parents the next time you get to take a vacation or go out to eat. I finally had to apply for disability about a decade ago. It was a three year fight to get benefits which greatly harmed me even more. I now live on less than half the minimum wage for my state and my case is presently under review again. My parents are both elderly now and when they are gone I won’t have any family members to take care of me. I have no idea where I will live or what will happen to me. You owe my family an apology.

    2. Immediate appropriate funding for disease burden which is at least 250 million dollars a year, plus the decades of unethical and criminal missing funding. This is the richest country on earth. There is absolutely no excuse for the unconscionable inhumanity of not funding this disease, leaving patients in a state of perpetual suffering and furthermore, draining hardworking families of all their savings in desperate attempts to help their loved ones.

    3. Triage. Triage. Triage. I don’t know how such a basic idea can get so lost. The most severe patients who are not well enough to leave their homes without further torment and harm must be immediately found, expertly cared for, expertly monitored and expertly researched from their homes. It is depraved to let these people suffer with no appropriate care for years and decades. Leaving patients to death and to suicide is a crime against humanity. I also shudder to even think about the homeless people with this disease. Severe patients need traveling expert doctors to provide care, traveling health care workers with oversight from expert doctors to also provide care, collect samples for lab work, etc. and severe patients need traveling expert researchers. The able bodied should be going to the severely disabled, not the other way around. Existing technology and technology that could be created must be put to use for patients to get care. This can involve simple technology, more complex technology and technology that may be briefly used and then passed on to another patient through mail exchange. Things like sleep, heart function, orthostatic intolerance, cognitive function, pain, exhaustion etc. could be tracked to help patients by providing things like CPAP machines and appropriate medications as well as for research purposes and for the purposes of documenting disability so that patients can receive the benefits that they are entitled to. Also, expert doctors providing outreach are extremely important to act as advocates for patients in emergency situations. The most fragile part of the ME/CFS population must be identified and served. If this part of the ME/CFS population is too ill to leave their homes now, that will still be the case if/when biomarkers and treatments become available. If medicine is supposed to first do no harm, patients shouldn’t be harmed because they can’t get care. They also shouldn’t be harmed for weeks, or months, or permanently because they were over-exerted trying to get care. Once the most severe patients are taken care of, this type of care could extend out to a greater population of ME/CFS patients whose needs are not being met. Triage.

    Please see the following:

    Telemedicine or home visits for those unable to participate in clinical trials/treatment in person and outreach to underserved communities are needed. New technologies to address underserved populations and unmet needs (e.g., mobile technology, online tracking tools) should be developed and employed to measure progress and to enable communication, especially for those who are not served in the clinic setting. (NIH Pathways To Prevention Workshop: Advancing the Research on ME/CFS, page 13).

    The most severe patients need to be researched and they need the best research. Therefore, I want to stress the importance of the work of Ron Davis, Ph.D. at Stanford University and the Open Medicine Foundation along with his team of exemplary researchers, including 3 Nobel Laureates, internationally recognized researchers and expert clinician researchers Dr. David Bell, M.D. and Dr. Paul Cheney M.D., Ph.D. Their work must be fully funded now and continually funded to expand. More top biomedical researchers must be found and funded to study severe patients. The sickest patients must be helped and researched first. Triage.

    My last medical care was only out of great desperation and it required an ambulance and the ER as I thought that I was having a heart attack; which I probably would have tried to ride out at home, as I had done this before with heart trouble, but I was also having great difficulty breathing and became desperate for air. The ambulance picked me up around sunrise. They just wanted to get me to the hospital and in the ER they just wanted to run their tests on me. The fact that I am a bedridden ME/CFS patient went willfully unacknowledged and my ME/CFS uncared for. At the hospital, they monitored my heart all day and I had lab work, chest X-rays and an echocardiogram. For my breathing, a respiratory specialist came to see me and after being given an inhaler to use my breathing was much better. I had been up struggling the entire night before and had barely eaten or had enough to drink the day before. All day in the hospital, I was not allowed to drink or eat or given an IV even though I’m hypoglycemic, terribly needed fluids and had a horrendous migraine. My concerns we not addressed and my questions went unanswered. When they released me, they gave me a partially used inhaler to take home. For my heart, I was told to take daily, high doses of Ibuprofen for pericarditis. When I arrived home, my migraine was as bad as it could be, I was vomiting the water I was trying to drink; so I still wasn’t getting fluids and couldn’t eat. I was also terribly weakened from the ordeal and from having not slept the night before. I struggled to stay awake until the vomiting stopped and I could get some fluids into me and a little protein that I had to digest in my sleep. The rest of my nourishment and fluids had to wait until I woke up in the struggle of the next day of further escalating symptoms, migraines and spinning fragments of memory endlessly flying through my head. The pericarditis made it too painful to lay flat, so two wedges and some pillows to stack were purchased for me. My ER records were sent to my doctor who was supposed to write me a prescription for my inhaler since ERs don’t write or refill prescriptions but he wouldn’t write it without seeing me. I was too sick to see him and went without an inhaler when mine ran out. I was left struggling to breathe, sleeping wedged upright, having chest pain, migraines and collapsed with many symptoms, some of which I previously hadn’t had, escalating my disease. Paying corporeally for corporeal care is an immoral currency.

    4. Extensive, accelerated, collaborative, biomedical effort. You have the IOM and P2P reports, the CFSAC recommendations and other relevant recommendations and demands. Vicky Whittemore, Ph.D. has just attended the IIME conference. Get to work and include patient input. We need collaboration among all top biomedical researchers and expert clinicians seriously researching this devastating biomedical disease and sharing data. We need incentives for new researchers, treatments and many regional Centers of Excellence. I believe that researchers and doctors should be using the Canadian Consensus Criteria. I believe that part of the reason doctors don’t believe that we are truly ill is because they are using poor criteria in a superficial and partial way. If doctors can’t listen to their patients, use intelligence, compassion and substantive criteria to diagnose patients while engaging with their patients to try to alleviate their suffering, than they shouldn’t be practicing medicine. Doctors inappropriately misdiagnosing ME/CFS as a way to not treat patients need to be reprimanded for their malpractice. Professionals need to do their jobs or be fired and replaced with competent individuals. Patient’s lives are more important than politics or researcher’s agendas, reputations and/or egos.

    I had been missing from interacting in the ME/CFS online community; since it began, until February of this year, when I think I finally just snapped as the burden of quiet and silence is so great and the representation of severe patients so lacking. I’m trying to save myself and others whose desperate screams no one hears before I go silent again. What I have written here, is in part the compilation of several things that I wrote online and information I included in my disability review. Therefore, it can be thought of that this letter took me almost 5 months to write and has caused me countless days with a worsening of: cognition, migraines, pain, severe vertigo, photophobia, sound sensitivity, motion sensitivity, orthostatic intolerance, heart pounding, breathing difficulty, coughing, nausea, digestion problems, sweats, chills, sleep reversal, sleeplessness, racing, exhaustion that gets so severe I have to press a button on a horn to get someone to come and hand me my water that sits on a table next to my bed, or to come on their own to check on me and make sure I remember to drink and that I’m eating the food that was left for me, and more…. This isn’t “malaise”, it’s more like obliteration! Remember, only a small percentage of the patients with this disease are even diagnosed and of those that are diagnosed, the sickest among us aren’t ever heard from. The sickest patients need to be held up the highest and taken care of first. Find us now. Take care of us in our homes now. Monitor us from our homes now. Research us now. We can’t wait. Triage. Thank you.


    Laurie P.
    New England, U.S.A.

    • Jennie Spotila says:

      Laurie, this is amazing. Thank you for sending it to NIH and thank you for sharing with us here.

    • annie says:

      Laurie thank you for your effort to write this powerful letter and the cathartic cry I didn’t know I needed.

      like you I was also 17 and full of dreams when this hit me a couple years after it happened to you so I feel a kinship with you in that regard and many others we have such similar stories. You made me very grateful for my sisters. I so sorry you have that extra fear.

      I am so troubled by the ongoing narrative both inside and out of our community that this is a mysterious disease that has been sadly neglected and misunderstood for all these decades.

      It is a story of corruption and abuse willfully enacted by the few against millions and we need to either learn this or not forget it until your demand for an apology or an acknowledgement of is delivered.

      Without this we are just another disease that is misunderstood and underfunded.

    • Carollynn says:

      I am so sorry for your pain, your suffering, Laurie, for so long, and so alone. I am so grateful that you took the months to write this, knowing the impact it would have on you. Please feel our validation, gratitude, and solidarity. We’re a sorry group of soldiers, but we are together in this. I don’t wish this illness on you or anyone, yet I can’t help but to be honored that you–your amazing spirit!! the best of what humans can be in the worst of all circumstances–are one of us.

    • Mary says:

      Really amazing that you were able to write such an honest, urgent, letter about such a raw injustice, but do it somehow with eloquence and softness, and in your clearly extreme physical state. Thank you. I am wondering if I may share this on my petition page: it requests higher funding from the NIH for further research for this disease and we’re attempting to get to 50,000 before presenting to Collins at NIH and Burwell at HHS. We’re at 38,000 now. You can visit the campaign at the link provided. And I hope you’ll sign if you’re able. From one of the millions missing, know that somehow throughout advocacy like this, and the sharing of our experience, we aren’t alone anymore, our voices are no longer silenced, and real change is beginning because of people like you and letters like this. Keep going.

      • Laurie P says:

        Thank you to everyone who left comments for me and thanks for the tweets Jennie. I really appreciate it. It helps me feel less alone. It’s very difficult to have to minimize interaction and verbal and written communication in order to keep my mind really quiet and not make myself worse. I have so much that I want to say but it’s not even alright to be thinking about it. I’m still winding my mind down and trying to get back to a place where I can take better care of myself. Thanks for your support everyone. I’m taking it to that quiet place with me.

        Mary, thank you for writing the petition and for all of your hard work getting it signed. It’s a huge accomplishment! Please check your Phoenix Rising inbox. I started a conversation with you there. I don’t know if that generated an email to you or not.

    • Rebecca says:

      Hi Laurie P,

      Wow! Amazing testimony. Thank you so much for spending your energy writing this.

      I’m in a similar position as I’m in my 40s, have severe ME, and am taken care of mainly by my elderly parents. I know a lot about things like subsidized housing, homecare, social services such as food stamps, and special needs trusts. I might be able to help you figure out your future situation. If interested, email me at becbec1995 at gmail dot com

  11. Kathryn Stephens says:

    I am sobbing. There is nothing, nothing in the world as powerful as this comment from Laurie. Thank you, dear one.

  12. matina says:

    Jennie: Thanks so much! Well said!!!! Severe ME patients need care now!!!!! This is not right! your amazing and you still advocate and I know you are really really sick!!! If you ever need help, I hope you will reach out to me. I can get out with rest once in a while. thanks for sharing your story!!! it needs to be heard!!!!

    • matina says:

      I meant to say thank you to Jennie for your response and to Laura as well… Ugh.. sorry I hate by brain with this disease!

      You all are awesome!

  13. lori woods says:

    Where do you live? what is your phone number? has anyone gone to help you yet? I will call and try to get someone over to help you, if i was closer i would go myself. i am in south texas and didn’t realize the same lack of care is everywhere i just thought it was here. i hear you, and i want to help, great letter by the way. prayers

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