Advocacy Action Alert: Congressional Letter to HHS

Emily Taylor

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Congress to HHS: Tell us about CFSAC. Will your Member of Congress join us?
ME/CFS must be represented!

On September 6, the Secretary of Health and Human Services disbanded the federal Chronic Fatigue Syndrome Advisory Committee (CFSAC) by allowing the charter for the committee to expire after 16 years.

The Chronic Fatigue Syndrome Advisory Committee was the only voice exclusively for the ME/CFS community in the federal government. We cannot allow the administration to silence people with ME/CFS, their loved ones, scientists, and advocates. Senator Markey is leading a bicameral (U.S. House and U.S. Senate) letter to the Department of Health and Human Services (HHS).

TAKE ACTION HERE

Use our congressional messaging form to contact your Senators and Member of Congress IMMEDIATELY and urge them to sign this letter to the Department of Health and Human Services (HHS). The letter (1) states that more must be done by HHS to address ME/CFS needs, (2) requests HHS to explain how it will fill the gap left by the September, 2018, dissolution of the Chronic Fatigue Syndrome Advisory Committee (CFSAC), and (3) poses detailed questions regarding the ME/CFS activities and plans of the National Institutes of Health and Centers for Disease Control.

SEND YOUR MESSAGE TODAY!

This is a joint action of Solve ME/CFS Initiative (SMCI), #MEAction, and the Massachusetts ME/CFS & FM Association
 
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My personal comments added to the joint effort Massachusetts ME/CFS & FM Association, Solve ME/CFS Initiative and #MEAction form letter:

Thank you, Senator Markey, Representative McGovern and Senator Warren for your help.

Language and writing are very difficult for me now as I am very cognitively impaired. I will pay dearly in an exacerbation of my symptoms and suffering for having used my brain and energy to write this but it is imperative that I do so as so many of us are fighting for our lives and not nearly enough is being done for us.

People with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) urgently need medical equality, research commensurate with disease burden; including decades of missing funding, knowledgeable and compassionate care, appropriate testing and treatments, livable benefits; including health insurance benefits that cover our needs, and hopefully a cure soon so that we can return to our lives before more people die; myself included, and before thousands more women, men and children become sick and disabled. We desperately need an end to the misinformation, stigma, bias, discrimination, neglect, abuse and harm that we have endured for decades.

Very severe and severe patients need home care and care through telemedicine and technology, and patients with ME/CFS need numerous centers of excellence throughout the U.S. with inpatient and outpatient care within reasonable traveling distances. We deserve the right of medical care just like people with other major diseases. Our lives matter! Our immense suffering matters!

I have been sick since 1983 when I had mononucleosis and a severe strep throat at the same time. I have been waiting 35 years for appropriate medical care! I have been bedridden from severe ME/CFS for a decade. I exist in a quiet darkened room in isolation, can barely speak little bits at a time, and I have a long list of multi-system symptoms that are overwhelming, frightening, dangerous, and extremely painful. Solitary confinement is considered a type of punishment and torture, yet people with ME/CFS are expected to live like this. I am so ill now that I no longer have any medical care beyond the hospital emergency room which hasn’t been helpful. The present state of care for people with ME/CFS is malpractice! I have no dental care and I unfortunately have very damaged teeth and a broken tooth despite having had years of dental care and not eating sugary foods. I have no eye care. I continually have to fight to maintain my meager disability benefits as though I’ve miraculously been cured even though my medical records indicate that I am “permanently disabled” and “never” expected to recover. I have again, recently and with no warning or explanation stopped receiving food stamps.

I would like to see a congressional investigation into how HHS, NIH, CDC, AHRQ,FDA, the Social Security Administration and other benefits administration systems have CREATED THIS PUBLIC HEALTH CRISIS.

I would like the misrepresentation of this disease and the promotion of bogus research investigated including the UK researchers involved with the PACE trial. Member of Parliament, Carol Monaghan, said about the PACE trial, “I think that when the full details of the trial become known, it will be considered one of the biggest medical scandals of the 21st century”. How were these and other researchers allowed to contribute to U.S. policy to the detriment of patient care and the very lives of patients? What roles have insurance companies played using poor quality research to deny benefits to very sick and disabled patients?

I would like to know why the NIH can employ researchers who believe people with ME/CFS have a psychosomatic illness and are catastrophizing; including the lead clinical investigator of the NIH intramural clinical study on post-infectious ME/CFS. Why can the NIH have an invited speaker from another country; at taxpayer expense, who believes ME/CFS is a “delusional somatization”? Why can U.S. medical institutes like the Mayo Clinic ignore U.S. recommendations and continue to follow the policy of the U.K. NICE guidelines which recommend graded exercise therapy and cognitive behavioral therapy? There are many, many, many things that need to be investigated. How sexism plays into all of this is another area of urgent inquiry. How did things get so rigged against people with ME/CFS?

I also believe that medical, psychiatric and psychological associations should be held accountable for their practitioners routinely harming patients and withholding testing and treatments by inappropriately psychologizing physical symptoms, conditions and diseases that require medical and not psychological care. I’ve been told that I’m depressed when I don’t meet the criteria, that I’m not experiencing what I say that I am as though I can’t feel my own body, that I have migraines because I have repressed anger and paradoxically that I have urinary tract infections because I’m “pissed off”, as well as the deceptive wild goose chase suggestion of childhood trauma that I can’t remember. I’ve even been accused of anxiety during a phone conversation with a doctor because I couldn’t stand and talk on the landline wall phone and I had to ask him to stop talking for a minute while I got myself to a chair to sit down as I was dizzy and couldn’t pay attention to what he was saying. During an appointment with another doctor, as I was starting to discuss problems that I was having at that time with my hands, the doctor completely shocked me by making a totally irrelevant statement about sending me to the registry of motor vehicles for a driving test! This was very bizarre as I wasn’t dropping the steering wheel! When he wouldn’t listen to me, I became very quiet so that I could leave as soon as possible which then earned me the diagnosis of depression by this doctor. I could go on and on with stories after being sick for 35 years. What I actually have is a neurological disease recognized by the WHO since 1969 and this gaslighting of patients has to stop.

Additionally, patients are owed a public apology from an appropriate official of high standing as well as a public statement from the Surgeon General regarding the severity of this disease. Both of these actions would significantly help to move things forward for patients.

THERE ALSO NEEDS TO BE REPERCUSSIONS FOR THOSE WHO CREATED THIS PUBLIC HEALTH CRISIS TO BEGIN WITH.

The decades of inaction that we have been denied recognition and cast outside of any standard of medical care that other people are able to receive have not been accidental and patients have paid for this malfeasance with their lives. Some of us, like myself, have also paid with the lives of a future generation of children we were never able to have. In my case, I am an only child and it greatly pains me that my branch in my family tree stops with me. My parents and grandparents and family over the generations haven’t sacrificed and struggled for me to end up like this. I have a family member killed by a Nazi soldier in Poland, but his sister, my great grandmother, made it to the U.S. to start a new life. I have another great grandmother who died during childbirth, but my grandmother survived. I also have some Blackfoot ancestry which predisposes me to a certain medical condition that runs in my family and makes me appreciate the struggle of my Blackfoot ancestors so that I can be here today. Yet, in this day and age, I may not make it because I can’t contact anyone in any modern way in order to get appropriate medical care and treatment. No more lives of those already ill, those who will become ill, and no more children who will never get to be born should be lost because of the politics of this disease; which are the politics of torture and of genocide and of indefensible excuses. It is as though we are living in some kind of alternate, surreal, Tuskegee-type experiment.

When most people get sick, they make an appointment and go to the doctor’s office for care and treatments. That we have to protest and lobby to try to get medical research, care and treatments should be criminal! I cannot stress this fact enough!!! I can’t believe that this is what happens in health care in the U.S. if you don’t have the “right” disease. I wish all citizens where aware of this as it is outrageous! The system is very, very, very broken and the NIH grant system doesn’t work if you don’t have a disease that they are interested in. Meritorious grants in ME/CFS are turned down by world class researchers like Stanford geneticist, Ron Davis, PhD, and Columbia virus hunter, W. Ian Lipkin, MD, for non-reasons like the assertion that the disease is psychosomatic, or reasons that actually go against policy, and with responses that don’t even make sense as though the respondent didn’t even read or understand the grant! Researcher/clinician, Nancy Klimas, MD, can get millions of dollars in funding from the DOD for her Gulf War Illness studies but she can’t get that kind of funding for very similar studies in ME/CFS from the NIH.

Furthermore, there aren’t nearly enough research centers being funded by the NIH. They had enough meritorious grants that they could have funded ten centers; which they even admitted, instead of three, and shown that they really are interested in growing the field and bringing in new researchers but they didn’t do that and our funding outside these centers has actually gone down. Tossing around a few millions dollars isn’t going to do anything when we need hundreds of millions of dollars in funding. When there isn’t funding, researchers don’t apply as it is career suicide. Also, when a disease is misrepresented and stigmatized, researchers don’t apply because they don’t even know that the actual disease exists to be studied. The centers that the NIH have funded aren’t even getting enough money to carry out the research that they need to do; which is a matter of known public record and was even brought up by W. Ian Lipkin, MD, during an NIH meeting. The Jackson Laboratory, who received NIH funding for one of the research centers a year ago is just now starting to recruit patients. This slow pace in our present circumstances is unacceptable. Sick and poor patients have to lobby, protest, raise awareness, donate, fundraise, pay for journalist investigation and we’re also supposed to draw in researchers according to the NIH. This is unconscionable. Patients have died and are dying doing this and the suffering to do this is immense. The job of patients should be to be patients. Medical care isn’t a popularity contest. It’s the job of our government to research our diseases and care for all of us, not decide who lives and dies, which is exactly what they are doing! I just want to get medical care and treatments like other people do. I need this to happen before this disease kills me or I end up homeless and die. Some research shows that patients are dying 15 years before the general population. Patients also die from things that are treatable because they are too sick to get medical care and there is a high rate of suicide in our community, even effecting prominent advocates who become too sick to go on.

I used to be a graduate student. I used to do a lot of writing. It has taken me five days of pushing myself to the max to write this with breaks when the migraines got too bad, the dizziness and nausea got too bad, when my eyes where burning too much, when I became so confused that I couldn’t make sense anymore or read and understand what I wrote. I write sentences and paragraphs and barley remember what I’ve even written about and I can’t remember the sequencing of what I’ve said. I’ve been having a lot worse gut symptoms for the past few months and I’ve had to take breaks because of these symptoms too. I’m not even sure how much longer I’ll be able to eat solid foods. At one point, I didn’t think I’d be able to finish this letter as the migraine, dizziness and flashing in my head became very severe and wouldn’t stop after a lot so rest. There was no position I could lay in that I felt safe or offered any relief and I had to keep a light shining on my closed eyes so that I knew where I was in space as the vertigo in the darkness was unbearable. After hours and without being able to eat, I finally fell asleep. Although crashed when I woke up, I ate and continued writing, rewriting and editing this letter. After I send this to you, fragments of what I’ve said here will float around in my inflamed brain for weeks like song lyrics that you don’t mean to sing, can’t remember the song they’re from and can’t get out of your head, even in your sleep. The hard crash will affect my holidays and weeks ahead. It’s torturous. This disease is tortuous. Being outcast from research and care and treatments is tortuous. Please, please, please help us!

People with ME/CFS deserve justice, urgently accelerated recognition, research, care and treatments NOW! Thank you.


Sincerely,

Laurie P____


P.S. Writing this letter has provoked my most common decade’s long recurring dream. It’s the one where I am in college and have to withdraw because I am too sick to continue, which is something that happened to me over and over and over again in real life. I paid for almost two degrees to get one because I had to withdraw so many times. It took me over a decade to get through college, piecing together all my credits and finally finishing in an accredited, primarily off-campus program. Since I believed the medical lie I was told; that people get better over time, with no indication that this might not be true, I thought at the very worst I’d have a master’s degree or doctorate and that I’d be able to support myself even if I could only work part-time. I am now punished in that I receive poverty level benefits because I didn’t work enough over the years I was trying to get better and get through college.

More importantly though, had I accurately been diagnosed as a minor when I got sick, and given accurate medical information, I believe my benefits would be higher today and I wouldn’t have damaged myself over all those years making decisions based on incorrect medical opinion. I had also married young and we had been able to buy a house with an inheritance I received and make the payments with my then husband’s full-time salary and my sometimes salary when I tried to work too. Without a complete diagnosis, prognosis and medical care, I got sicker and my husband left me. In an irony of ironies, my then husband, who is a lot older than I am, left me for a cognitive behavioral therapist he supervised at work and was cheating on me with. I lost the house. I also didn’t want to fight for who knows how long and at what cost to try to get alimony, so I didn’t because I always thought that I’d be able to support myself eventually. My ex-husband went on to have and raise a family where they lived in an almost 4,000 square foot home on several acres of “park like” land with an in the ground swimming pool, sauna, sunroom, Jacuzzi tub . . . while I’m bedridden, without healthcare, with elderly sick and disabled parents, and fighting for my life.

When the healthcare system doesn’t do its job, it can destroy every aspect of patients’ lives for the rest of their lives. I was trying to invest in a future I never had a chance of even having, being harmed every step of the way. I spent years in and out of college and sometimes trying to work, and I married and divorced not knowing I had a life-long incurable disease without any prenuptial agreement or fair divorce settlement. We need top down changes and accountability. As horrible as this disease is, the lack of justice is just as horrible too.