mango
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Welcome to Phoenix Rising!
Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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NIH wants your views on what to research and research strategies
- Thread starter Simon
- Start date
justinreilly
Senior Member
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- 2,498
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- NYC (& RI)
My Response to the NIH RFI
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.
Sincerely,
/s/
Justin Reilly, JD
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.
Sincerely,
/s/
Justin Reilly, JD
Jenny TipsforME
Senior Member
- Messages
- 1,184
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- Bristol
My response is here https://tipsforme.wordpress.com/2016/06/15/nih/
Bob
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- England (south coast)
8 days left to submit your responses to the NIH, folks.
If you're not confident about how your submission should be formatted, it doesn't matter. They've invited submissions from patients and carers, and they aren't expecting formal dissertations or research papers from us. Patients and carers have the best essential insights into the disease and our needs, so it's essential that we submit whatever we can. If you can, just jot down a few lines about what you think their priorities should be.
Some basic ideas (feel free to use or copy)...
If you're not confident about how your submission should be formatted, it doesn't matter. They've invited submissions from patients and carers, and they aren't expecting formal dissertations or research papers from us. Patients and carers have the best essential insights into the disease and our needs, so it's essential that we submit whatever we can. If you can, just jot down a few lines about what you think their priorities should be.
Some basic ideas (feel free to use or copy)...
- Massively increased biomedical research funding, proportionate to funding for other diseases.
- A hunt for biomarkers and pharmaceutical treatments.
- A massive and comprehensive biomedical research program including (but not restricted to) research on: the immune system and immune cell abnormalities/dysfunction; cellular abnormalities/dysfunction (e.g. via metabolomics & proteomics etc); genomics and epigenetics; endogenous retroviruses; the potential role of common pathogens; vagus nerve infection.
- Clinical trials of rituximab and other promising pharmaceuticals, such as Ampligen, anti-virals and cytokine inhibitors.
- Determining subgroups for whom experimental treatments (e.g. Rituximab, Ampligen and anti-virals are effective).
- Setting up a network of in-patient clinical centres to care for severely ill patients at their time of greatest need, to be run by clinical experts who understand that ME has a biomedical basis.
- Fund research grant applications from existing experts who have had research applications declined, such as Ron Davis, Ian Lipkin, Nancy Klimas, etc.
Last edited:
Bob
Senior Member
- Messages
- 16,455
- Location
- England (south coast)
ME Action has created a survey, which they will use for their own submission to the NIH...
Some folk might find the survey less daunting than submitting their own text directly to the NIH...
http://forums.phoenixrising.me/inde...e-nih-study-in-me-cfs-theyre-asking-you.45216
via @JaimeS
Some folk might find the survey less daunting than submitting their own text directly to the NIH...
http://forums.phoenixrising.me/inde...e-nih-study-in-me-cfs-theyre-asking-you.45216
via @JaimeS
JaimeS
Senior Member
- Messages
- 3,408
- Location
- Silicon Valley, CA
Thanks, guys! We had someone at #MEAction who wanted to give the survey a final look, but if you go to that post and 'like' it, I will post something when it goes back up so you are alerted. 
-J
-J
- Messages
- 88
- Location
- New England, USA
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:
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.
Sincerely,
Laurie P.
New England, U.S.A.
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.
Sincerely,
Laurie P.
New England, U.S.A.
JaimeS
Senior Member
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- 3,408
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- Silicon Valley, CA
@Laurie P -- fabulous letter. I've never heard someone describe the mental symptoms of the acute stage so accurately: "spinning fragments", YES.
What I experience now in the chronic phase is more like 'brain fog', an increasing inability to hold on to a thought and take it to completion. But during my most acute illness it was more like everything was whirring. Awful feeling. You describe it perfectly.
From a technical standpoint, this is also simply an excellent piece of writing. Have you emailed it, or would you like someone else to?
-J
What I experience now in the chronic phase is more like 'brain fog', an increasing inability to hold on to a thought and take it to completion. But during my most acute illness it was more like everything was whirring. Awful feeling. You describe it perfectly.
From a technical standpoint, this is also simply an excellent piece of writing. Have you emailed it, or would you like someone else to?
-J
JaimeS
Senior Member
- Messages
- 3,408
- Location
- Silicon Valley, CA
Don't know if you all have seen the tweet, but we received over 1,750 responses.
Thank you all so much!
Thank you all so much!
Kati
Patient in training
- Messages
- 5,497
My answer, i used the bullet point format to cut to the chase.
To whom it may concern:
· Emerging needs and opportunities that should be considered as new ME/CFS research strategies are developed.
The 2016 technology needs to be used on patients with ME. Metabolomics, personalized medicine, microbiome, brain imaging, big data, micro-RNA etc
The technology is here, but what is lacking is funding and dedication.
Other diseases need to be compared, for instance, compare post ebola patient's immune system, neurological symptoms with post viral ME/cfs
· Challenges or barriers to progress in research on ME/CFS.
The biggest challenge is bias, stigma and discrimination that patients encounter at all levels of governments, health care and society. From grant reviewers, to biased bad apple in a research group, to british psychiatrist spreading misinformation and publish horrible science in reputable journals. For 30 years now, patients have carried the burden of bias, stigma and discrimination.
Another challenge is case definition. Post exertional relapse needs to be mandatory. A minimum of Canadian consensus criteria needs to be used. The most recent SEID definition should not be used in research.
Another challenge, the sickest patients cannot get to a doctor office or fly across the country for research. By studying the patients who can walk in and travel for a doctor appointment, you may miss important datasets.
No one is experienced at NIH to diagnose a ME patient. There are huge concerns that some in your team may be biased and slanted. NIH must consider the expertise of the few physicians who have strictly seen patients with ME: Dr Klimas, Dr Montoya, dr Peterson, Dr Kogelnik, and the like.
The elephant in the room: the continuing belief that has been passed on to younger generations of researchers that researching ME would be a career suicide.
Another challenge: funding. We need hundreds of millions, not peanuts, to find the exact problem, and to develop therapeutics. And to achieve that, Congress must believe it is worthy enough to fund research. NIH must make ME research a priority
Lastly, this disease doesn't belong to any medical specialty. This causes huge problems in streamlining a disease, and in getting clinical trials which are accessible for all around the country.
· Gaps and opportunities across the research continuum from basic through clinical studies.
The gaps in research are too numerous to write. We need basic research to find biomarkers, mechanism of disease. Clue here would be immunologic, neurology.
Low natural killer cell function is as close to biomarker as possible. RNASE-L abnormalities need to be confirmed. Brain inflammation, microglia activation are interesting leads.
Clinical trials are desperately needed. Ampligen work for some people. RItuximab. Could there be other money clonal antibodies that could be helpful? How about chemo agents like methothrexate or cyclophosphamide? How about Vistide and Valcyte, or even Brincidofovir for those with elevated HHV-6 titers/ CMV titers?
Nobody has researched why patients with ME have sensitivity to epinephrine, in my case i relapse badly if epinephrin is given in local freezing at the dentist.
There needs to be a study on auto-antibodies. Muscarinic and adrenergic receptors antibodies as per the german study, which needs replicating.
So much work needs to be done.
Thank you for reading and request for information. Patients need to be included.
Kati
To whom it may concern:
· Emerging needs and opportunities that should be considered as new ME/CFS research strategies are developed.
The 2016 technology needs to be used on patients with ME. Metabolomics, personalized medicine, microbiome, brain imaging, big data, micro-RNA etc
The technology is here, but what is lacking is funding and dedication.
Other diseases need to be compared, for instance, compare post ebola patient's immune system, neurological symptoms with post viral ME/cfs
· Challenges or barriers to progress in research on ME/CFS.
The biggest challenge is bias, stigma and discrimination that patients encounter at all levels of governments, health care and society. From grant reviewers, to biased bad apple in a research group, to british psychiatrist spreading misinformation and publish horrible science in reputable journals. For 30 years now, patients have carried the burden of bias, stigma and discrimination.
Another challenge is case definition. Post exertional relapse needs to be mandatory. A minimum of Canadian consensus criteria needs to be used. The most recent SEID definition should not be used in research.
Another challenge, the sickest patients cannot get to a doctor office or fly across the country for research. By studying the patients who can walk in and travel for a doctor appointment, you may miss important datasets.
No one is experienced at NIH to diagnose a ME patient. There are huge concerns that some in your team may be biased and slanted. NIH must consider the expertise of the few physicians who have strictly seen patients with ME: Dr Klimas, Dr Montoya, dr Peterson, Dr Kogelnik, and the like.
The elephant in the room: the continuing belief that has been passed on to younger generations of researchers that researching ME would be a career suicide.
Another challenge: funding. We need hundreds of millions, not peanuts, to find the exact problem, and to develop therapeutics. And to achieve that, Congress must believe it is worthy enough to fund research. NIH must make ME research a priority
Lastly, this disease doesn't belong to any medical specialty. This causes huge problems in streamlining a disease, and in getting clinical trials which are accessible for all around the country.
· Gaps and opportunities across the research continuum from basic through clinical studies.
The gaps in research are too numerous to write. We need basic research to find biomarkers, mechanism of disease. Clue here would be immunologic, neurology.
Low natural killer cell function is as close to biomarker as possible. RNASE-L abnormalities need to be confirmed. Brain inflammation, microglia activation are interesting leads.
Clinical trials are desperately needed. Ampligen work for some people. RItuximab. Could there be other money clonal antibodies that could be helpful? How about chemo agents like methothrexate or cyclophosphamide? How about Vistide and Valcyte, or even Brincidofovir for those with elevated HHV-6 titers/ CMV titers?
Nobody has researched why patients with ME have sensitivity to epinephrine, in my case i relapse badly if epinephrin is given in local freezing at the dentist.
There needs to be a study on auto-antibodies. Muscarinic and adrenergic receptors antibodies as per the german study, which needs replicating.
So much work needs to be done.
Thank you for reading and request for information. Patients need to be included.
Kati
BurnA
Senior Member
- Messages
- 2,087
- Messages
- 88
- Location
- New England, USA
Thanks @Jaime S. I already emailed my letter. It's good to see people responding to the RFI.
Kati
Patient in training
- Messages
- 5,497
Mary Schweitzer's response can be found here : https://slightlyalive.blogspot.ca/2016/06/comments-for-nih-research-program-on.html
She provides great knowledge of what it was like to be sick in the 1980's. And here we are in 2016, (still) asking for biomarkers.
She provides great knowledge of what it was like to be sick in the 1980's. And here we are in 2016, (still) asking for biomarkers.
Makes me shake my head when millions of people have this disease and people search their whole lives looking for answers.
mango
Senior Member
- Messages
- 905
Nielk
Senior Member
- Messages
- 6,970
My comment to NIH's RFI
https://m.facebook.com/notes/gabby-klein/my-comment-to-nihs-rfi/10154234684153426/
https://m.facebook.com/notes/gabby-klein/my-comment-to-nihs-rfi/10154234684153426/