Dear Massachusetts Congressional Delegation: I deeply appreciate your joint statement of support for people living with ME/CFS. (See above for your statement on a slide.) Please accept my heartfelt "THANK YOU!" to the entire 11 member MA delegation, including the following esteemed members of congress: Rep. Richard Neal, Rep. Nikki Tsongas, Rep. Joe Kennedy, Rep. Katherine Clark, Rep. Seth Moulton, Rep. Michael Capuano, Rep. Stephen Lynch, Rep. Bill Keating -- with a special thank you to those who spearheaded this initiative, Sen. Ed Markey, Sen. Elizabeth Warren, Rep. Jim McGovern and their helpful, compassionate staff! We are so pleased to work with your offices on this important human rights issue of stopping the neglect of, and getting real help for, people who live with ME/CFS. -- Best, Rivka Solomon, Massachusetts CFIDS/ME & FM Association
Thank you for standing up for people with ME.
Greetings from Atlanta, Georgia:
Thank you, MA Congressional Delegation, for your statement of support for ME/CFS research and funding. It is a debilitating disease that’s affecting millions of families. Your help is greatly appreciated and means so much to our community!
Thank you so very much for your support!! I am a patient with ME for 32 years. Your support means everything to all of us with ME and to our families and friends!!
Thank you for your much-needed support.
Thanking you all from jackie wakefield, London, England.
I want to take the time to thank you for acknowledging those of us who live in the shadows of society.
I greatly appreciate your support and it heartens me to know that though I may not be seen out and about, I am not forgotten by the leaders and policy makers of the State of Massachusetts.
Thankyou all for everything you have done for us, as a long term person with ME I appreciate it, from Anne James, Suffolk UK
Thank you for for your support for M/E. Our 31 year old son has had his life away by this horrible disease. Please do all you can to help all that suffer from M/E. Has been in a dark room for 4 years now. He was a vibrant and active young man. I believe together he will get his life back. Not just for him but for all who suffer from M/E!
Thanks so much Massachusetts Congressional Delegation, let’s hope others follow in your footsteps xxx
Thank you and with deepest appreciation
Thank you for giving a voice to the voiceless (for some of us are literally voiceless). Your support and action means the world to a disease so long ignored, misunderstood and underfunded.
Thanks. I am so moved to witness this groundswell of support. I am a physician who has been disabled since the age of 42 (25 yrs ago) and unable to work. So much has been learned about ME/CFS from small studies by researchers working with pitifully small funding. We need the NIH to step up and fund research for ME/CFS at a level in keeping with its complexity and disease burden so that real progress can be made in understanding and treating this profoundly disabling disease.
Thank you and please spread the word as ME/CFS is affecting millions around the world.
My daughter has suffered for 26 years!!!!
She has so much to offer this life however unable to get out of the house............
Again many thanks
(Mother and caregiver)
Thank you for recognizing this terrible illness. It is terrible to be sick. It is even worse to be invisible and for far too long me/cfs suffers have been at best ignored and at worst ridiculed. Thank you for taking this illness seriously.
Thank you for listening to the ME community. My sister suffered from ME for 30 years before she lost her life to it earlier this year at the age of 47.
From Holland... thank you Massachusettes
Thank you for your support. Two of my three children live in Boston, and if were well I would visit often. Our ancestors were from Massachusetts, so it's always felt special to us. Now even more so.
Thank you very much for your support!
Thank you for helping ME/CFS people and starting the process to create necessary change in so many areas with this devistating illness.
Thank you so very much you have no idea how much this means to those suffering. Thank you.
Thank you so much for your support. It is badly needed for a much mis-understood and under-funded disease. Thank you.
Thank you so much for your brilliant acts of kindness. You make a differance and we appriciate you. Never forget you deserve love and kindness even on your worst days. May people always be there for you if you ever question what a differance you make. To return your kind acts.
Thank you so much for supporting us. ME is a devastating illness and we need more funding and research to find proper treatment, and hopefully a cure.
Thank you so much for remembering all of us living with ME. I pray that your example will spread to other states as well. May you be truly blessed for your compassion.
Thank you so much. People with ME often feel invisible. Your support means a great deal.
Thank you MA delegation from your neighbor in NH for recognizing the existence of ME and the need for funding for research and a cure. I've had ME since 2011and my activities are now a fraction of my former life. Thanks!! for your support.
Thank you so much for your support. It is appreciated!
Thank you Massachusetts! We hope that this support will be recognized and followed by other states and eventually our Federal Government. ME/CFS is one of many chronic & complex disorders that affect Connective Tissues. With increased biomedical & genomic research, we can all hold on to hope for more accurate diagnostics, new treatments, and potential cures for all Autoimmune & Heritable Connective Tissue Disorders. On behalf of all rare disease patients, we are grateful for this progress!
Sincere "Thank You" from Madison, Wisconsin!!! I have had this illness for 25 years and it has progressively gotten worse. I've retired from my career now in Social Services...run out of steam physically due to this illness but in my heart, I have more to give!!! It's frustrating!!!
Thank you for your support! It is needed so desperately.
From an ME sufferer in Great Britain.
Thank you to the entire MA Congressional Delegation for your joint statement of support for people with ME, at the Regent Theatre screening of the film UNREST in Arlington, MA, on November 12th. Your actions will serve as a template for other states and lead the way for national recognition of ME/CFS. That effort will begin the domino effect, which will pave the way for medical education of the disease, drastic increases in government funding, discovery of etiology, approved treatment, cure, and prevention. You have lit the path.
Race to Solve ME/CFS
Thank you Massacheusetts' Senators for signing a Bill that directs more funding to teh study and cure of ME/CFS. This illness has been devastating to me and my family, and while I live in a country with good medical care we don't have good research ooportunities. This illness was always goig to be solved either by the US or Japan. It has been so disheartening to see over teh last 20 years that I have been ill, that there has been such little interest in somethingthat affects so many people. In the last 5 years hope has started to grow with new research coming out of the US. Please, find a way to keep that momentum going. We are depending on you even if we can't vote for you.
Thank you, MA Congressional Delegation, for supporting people with ME. I have been disabled by it (mostly bedbound) for a decade now. We desperately need funding for expanded biomedical research. Your efforts to acknowledge our plight and to increase funding in the U.S. House and Senate are exactly what we need. Thank you for fighting for the nearly million of us who can't leave our beds.
Thank you so much for your support. Ive been suffering from ME/CFS for 26 years now...over half my life...
Though I'm not a citizen of your state, as a woman who fell ill with M.E. at 18 and has been homebound for 22 years I really can't express what your statement of support means to me. I had lost hope that anyone would ever hear us. Thank you very much for listening.
Thank you! As a resident of Massachusetts, and a patient with ME/CFS, I couldn't be prouder of my representatives!
Thank you so much from Germany!
I've so far lost my 20ies and 30ies to this disease and you give me hope (for me and 17 million more people worldwide).
Thank you very much, Massachusetts Congressional Delegation. It's much appreciated, including in the UK, where I have suffered for 22 years, along with an estimated 250,000 other people.
Thank you for acknowledging us at last.
Thank you. Your support means the world to those of us living with this disease, in my case, for 30 years! It will help change the tide and lead to progress. You give me hope. Maybe you could talk Merkley & Wyden into doing something similar for Oregonians?! Thanks again.
Thank you on behalf of my family members who struggle with this disease.
Thank you from the bottom of my heart for voicing and showing your concern and support of people with me/cfs. It means everything to us. We need more understanding and interest in this devastating disease that ruins lives, that steals youth,opportunity and hope. A disease clouded with misconceptions that leaves it's sufferers lyeing in bed watching their lives diappear. Thank you all so much.
Thank you. Thank you THANK YOU!!!
Thank-you SO much for your support of people with M.E.. You have shown yourselves to be true leaders. May I be so bold as to ask that you further your leadership by insisting, starting now, that Doctors and researchers discontinue use of the conflated term "ME/CFS" (invented in the U.S., and NOT used by most other countries) ? They must use a clear definition of the neurological disease M.E. (see ICC or Dr. Byron Hyde 2017) & not use the term "cfs" as if the 2 were interchangeable. They are not. This lack of clarity results in muddied research cohorts, making research conclusions unreliable or even useless. Patients, Doctors, researchers, & activists have been asking for this simple clarity (& not a brand-new M.E. "name" or "definition") for decades. Please help us with this, and thank-you SO much again.
The acknowledgement you have given to the MECFS community's desperate need for research funding is an answer to many prayers. I have struggled with MECFS for 15 years, and now live in my parent's home, spending the majority of my time in bed. I am a citizen in Representative Joe Kennedy III's district, and am grateful to have supportive and empathetic political representatives. Thank you!!
Thank you for issuing the joint statement of support for people living with ME. I have lived with ME for 26 plus years and it has devastated my life. We need more research funding and I hope that delegations from other states, California included, issue joint statements such as yours to increase awareness of this disease.
Thank you so much for your support. My significant other has ME/CFS and we don't live in Massachusetts but it gives us hope to know that this is getting more and more support. It cannot be said enough how hard it can be to live with this condition so any support goes a long way. I hope one day governments everywhere can start supporting people with ME/CFS, supporting more research and also that doctors become more and more aware so patients can get a diagnosis, support, etc, instead of being doubted, belittled, told its in their heads.
So many people with ME/CFS only wish they could apply their whole days to contributing to society. My significant other was a very high functioning individual. She was working on her Masters Thesis when things started getting worse. She's still trying to finish it but with a foggy brain and maybe only a few functional hours a day if she's lucky, its making it nearly impossible since things in this world don't work on ME/CFS timelines. She used to work so hard, had the highest grades in the university department, now she feels she's lost almost everything including the ability to become the person she wanted to be, to contribute to the world, to leave a legacy.. If things could get better, I know I'd be amazed to see how far she'd get. Here's to hoping for a future where we can see ME/CFS patients flourish and make us realize what its like to take time, energy and health for granted.
Thank you again for your support. Means the world
Pete - Your neighbor to the north, Nova Scotia - Canada
Thank you for your support. Having been sick for 13 years has been difficult. Knowing that people such as yourselves are noticing our plight is wonderful. Thank you so much.
Dear Massachusetts Congressional Delegation,
As the mother of a 27 year old daughter who has been ill with ME/CFS since the age of 12, I was thrilled to learn of your advocacy for increased research and improved clinical care and support for individuats affected by this devastating illness. THANK YOU with all my heart for the hope this gives us as a family, and millions of others like us. My parents, natives of Worcester, MA, are proudly smiling down from heaven on you too:)
With sincere appreciation, Peggy Rosati Allen (currently residing in SLC, UT)
ME sufferers around the world need all the support they can get - especially from governmental bodies. And not least here in the UK. With very grateful thanks. Tony.
Thank you for taking the time to help with research of this illness that is so debilitating.
THANK YOU FROM THE BOTTOM OF MY HEART FOR YOUR COMMITMENT TO SUPPORT ME/CFS RESEARCH FUNDING! I have suffered with this life draining illness for 14 years, mostly homebound, and the lack of support and research makes us feel hopeless. I am a former triathlete, productive working citizen cut off at the knees by this incidious illness. I've tried hundreds of meds, supplements, etc., to to no avail.
Thank you so very much for supporting the sick ME-people. I have two grandchildren with ME. ITS terrible to watch their lives never starting, and their parents’ sorrow. We need more knowledge all over the world about this disease.
Thank you for your support and recognition of me/cfs, which I wish would only be known as ME. I lost my 37 year career as a scientist to this devastating illness. Not only can I not work but I can’t read much, watch tv or be on a computer very long, garden, cook recipes, drive very far or the zillion other things that humans enjoy. I have energy problems, yes, sometimes I am confined to my bed, but it is the cognitive problems that make this illness so devastating. I have to hire someone to cook healthy food and clean for me. I have a lot of expenses that are not paid by my insurance (drugs, supplements, walker, cane, mobility scooter, shower stool, on and on...) I also have to travel and pay for ME specialist doctors appointments and testing. I am currently battling hard to get Long-term disability from my employer’s insurer and for SSDI. And I am one of the lucky ones. I didn’t get sick until I was 58 (after a nasty virus). I had the chance to get an education, have a career, marry and have two great children. I am moderately ill and spend most of my time housebound. Sometimes I am so ill that I have to exist in a quiet dark room for days or weeks. ME is one of the most debilitating illnesses, worse than cancer, AIDS, MS or mental illness. The disease burden is enormous. Twice as many people have ME as MS. But the NIH hardly spends any money researching it because it is just so complex and requires new ideas and new technology. (They spend more to study male pattern baldness!) People are dying from neglect and medical abuse. I hope you will do whatever you can to increase awareness for ME and increase research funding. People with ME and their families are dealing with too much to be advocates for themselves. Please help.
By the way, just typing this has crashed me and made me very ill. I will have to rest in the dark for several hours now.
Thank you for your support for people afflicted with ME. My grandson has been home-bound witrh this disease for the past 14 years taking away some of the most precious learning yearsx of his young life. Hopefully your support will be amplified many times over within the halls of Congress!
Thank you for your support for ME/CFS patients and a call for meaningful and immediate investments in biomedical research to help the millions in the United States suffering from this disease. To have so many voices in your positions speak up for us is exciting. We would love to have even a slice of our old lives back and if we could return to work, we would pay back any research dollars back many times over. I hope your colleagues see the importance of that - as well as the end of the suffering of so many.
Thank you from the bottom of my heart for supporting the 1 to 2.5 million Americans living with the disabling disease ME/CFS. Having grown up on the North Shore, and with many close relatives still in Mass., my family and I are incredibly grateful for your support and are proud to have such caring, compassionate leaders representing us in Congress.
Sonya Heller Irey
My sincerest thanks to you for supporting people living with ME/CFS.
Thank you so much for supporting desperately needed ME/CFS research! You are an example for the country.—Dr. Sarah Raskin, Indiana
Attention senate and congress representatives of Mass.
You have our families heart felt thanks for taking the lead nationally with your recognition. and hopeful action in the future toward getting research dollars started in the direction of curing this cruel disease.. Our son, who got sick 4 years ago with ME and is not having to come home with us for care, left behind a good job, a good life, and lost his wife as a result of this..Think of the many million man/woman years of productive lives of discovery and contributions lost..Again, thanks for the effort to take the time to do what you have done, and will do in the future to find a way to cure this once and for all. Dave Olson, Murphys, Ca
Thank you for being champions for people with ME/CFS. I live in Ohio, but I graduated from Wellesley College, and Plymouth and Duxbury have become like a second home for me, with family living there. I'm 53 and have been unable to work, marry, have children -- live a life -- because of this illness. Thank you so much for taking up our cause. We need you, and we all so appreciate you!
Thank you so much for taking the time to learn more about ME/CFS. It is an underfunded, and therefore under-researched illness that affects millions of people, including me. Please encourage your colleagues to allot more funding so that we can one day find a cure.
Thank you for supporting people with ME/CFS! So many are struggling with this devestating illness with nowhere to turn for help, support or medical treatment. The statment from the Massachusetts Congressional Delegation gives me hope that things can, and will, change. Thank you for giving me hope.
Thanks heaps, Massachusetts !
Love from Anne,
Golden Beach, Australia.
Thank you for this show of support. I hope someday your sentiment is taken up in my home state of Colorado, and eventually by the Federal government. We need all the help we can get.
Thank you for your support for ME awareness and research. This disease has devastated the lives of millions of Americans who have been ignored by the medical establishment. With your continued commitment we can work together to find bio markers, treatment and a cure.
Thanks so much for your support! It means a lot to all ME/CFS patients, not just in Massachusetts, but around the world.
from Judith. Adelaide, South Australia
diagnoesed Chronic Fatigue Syndrom 1998, after spending 4 years not knowing what had hit me. But so many people could not understand what it was. More awareness is great, especially your resolution.
Thank you so very much for your support. It would be nice if Illinois would follow suit. I've had this disease since Feb. 13, 1978. One day, a music teacher, directing a community chorus and living a normal life and the next, well, that life is long gone. You can't even imagine how much your support means to all of us, from all over the globe I can see by reading the responses. Thank you again!!! Nan from Illinois
Dear Mass. Delegation:
Thank you so much for your support for the ME/CFS community. It is a devastating illness that has been ignored and patients have been ridiculed. Support like yours is so vital to hundreds of thousands of patients and their family members! Thank you again!
I want to say thank you very much to the MA delegation!
I have been disabled by ME/CFS for about 6 years. It has been, and continues to be, a terrible struggle. Before I got sick, I was working full-time and at the peak of my career in management at a major pharmaceutical company. I was also an involved mother of two and a devoted wife, daughter, sister, and community member. Now I am a shadow of my former self. ME/CFS causes extensive pain, fatigue and countless other symptoms that significantly harm my daily well-being and functioning, both physical and mental, as well as every relationship in my life. As I am no longer able to work, the significant loss of income me has also affected my family very negatively.
I have seen many doctors, even two specialists, as I am fortunate to live in NJ. Most doctors know nothing about ME/CFS. I have been prescribed numerous prescription and non-prescription drugs and supplements, and suffered countless side effects. But nothing has really helped. Every attempt is just a shot in the dark. And I'm not even one of the most severely affected victims of this illness, who are living out their lives in dark rooms. WIthout any hope of improvement, many take their own lives.
This is why serious government funding for research is needed NOW! I thank you again for taking up our cause, legitimizing this illness, and for helping obtain financial support for this devastating illness.
Thank you, Massachusetts!
A big thank you from Australia for coming out in support of people with ME, perhaps the most under-funded, medically neglected, serious, non-rare disease in the world today. Your support means the world to us, even on the other side of the world!
Thank you so much for your support for people living with ME.
Best wishes to all of you!
Thank you, it’s time for UNREST & the ME world is watching!
Sandra from Central Coast Australia
Thank you so much for listening to people with ME and signing the statement. Please continue to take action to make life better for everyone who suffers from this horrible illness.
Thanks a million from one of the millions missing. Xx
Thank you so much for your support. I have lived withME/CFS for almost 35 years and I have been totally disabled since 1987. Your support will help insure that this disease, which crushes so many lives as it has mine, will be understood, treated , and possibly cured.
Thank you so very much for supporting patients with ME/CFS. We have been forgotton for too long, we long for proper recognition of our disease, appropriate funding for research and proper medical treatment. We have lost so much of our lives to this disease. Thank you for bringing hope that change may come.
TThank you, we need help
Thank you all so much. It has been a long and lonely road for those of us who were diagnosed in the late 1980’s. I was a dental hygienist with a 12 year old daughter when I became sick. Finally had to quit work in 1994?
This has been an exciting year for CFS research and awareness.
Your acknowledgement will make a big difference.
My son was a Stanford University CS major, now withdrawn from college due to this disease.
He lies in a dark room, and is unable to open his eyes, listen to us, or talk for 2 years.
He is g-tube fed. Most doctors and staff know nothing about this disease. It is a clinical crisis
in care, and a national disgrace. (3rd world medicine in the richest nation on earth).
Thank you for taking the time to become educated on this disease, and change the tragic history of those afflicted. I know so many bright, productive people whose lives have been devastated by this illness.
We really need help.
This illness is maximum torture.
Greetings from a severe ME sufferer in the Netherlands.
I am a Canadian retired McGill professor who came down with ME ten years ago--it has pretty much ruined the plans I had made for retirement activity, physical and mental. Many thanks for having taken this action on behalf of us all! I hope it will serve as an example to others! Thank you!
Thank you for supporting ME/CFS. It means alot that government have seen the need and shown support. God bless you.
Angela & Michael Dyson
Thank you from the bottom of my heart for supporting people living with ME. I used to be a psychotherapist at a rural outpatient mental health clinic and now I'm bedbound 90% of the time. Your support means more to me than words could ever convey.
Thank you for setting and example for other states to follow, for recognizing the desperate need for more funding for research and for standing up for the Millions Missings from our lives!
My heartfelt thanks for taking this measure in Massachusetts to help patients who have lost so much due to ME/CFS. I'm one of them. This disease has taken away my career, my social life, and quality of life. The hardest part by far for me is not being able to do fun things with my daughter. It would be so wonderful just to be able to take her to the library or to the park again.
Thank you so much for your time and effort regarding ME acknowledgement and help!!
It means so, so, much to me!
Virginia R. Walsh (patient)
Thank you so much for your support!!
Your support has encouraged me, even though I am not in the USA. Thank you.
Thank you from the Netherlands. These statements bring hope all over the world.
I have been living with ME/CFS for over thirty years, some of those years in Massachusetts, my state of origin, though I now live in Oakland, California. It was a true nightmare when this disease was misunderstood as a treatable psychological problem, and the increasing understanding about it, including from people in government, makes such a difference. Thank you for your attention and for caring. It would help still more if the increasing awareness led to more funding for medical research, though considering who is currently in leadership in the federal government, I expect it's not the best climate to increase government spending on anything constructive.
Dear State of Massachusetts,
I am 62 now and have had CFS/ME since age 39 and had to quit my Nurse Manager career with the SC Department of Corrections at age 44. Imagine the additional cost to our government that I myself have added with early Police Retirement and Social Security. I believe it totals in the billions of $ for all of us combined. Anything done to advance the research and subsequent treatment of Myalgic Encephalomyelitis will ultimately not make only for one million Happy Campers free to live their lives but the government will re-gain the money. We are disabled and debilitated and at times helpless and at times homebound and at times bedbound and at times we are hopeless. But not at this moment. Not hopeless. Thank you. Marcie Myers, South Carolina
Heart-felt thanks from the parents of a fantastic kid who is fighting ME/CFS right now!
I’m at least a 4th generation Massachusetts resident and I’m very grateful to live in this state with so much beauty and opportunity that I hope to one day again enjoy. I am so proud of and appreciative of your leadership. Thank you! Furthermore, thank you, Senator Markey, for the hope you brought us, when at another event you said, “…we want to make sure that children have to turn to the history books to find that there ever was such a disease. We can do this.”
I got sick in 1983 when I never fully recovered from having mono and a severe strep throat at the same time. ME stole my life and progressed in ways I never could have imagined, from the first 13 years, struggling in and out of college, graduate school and jobs, alternating with being housebound or bedridden, to the next decade, which left me primarily house confined, followed by further decline, leaving me bedridden and unable to care for myself. I have been waiting 34 years for appropriate recognition, medical care and support. ME is a public health crisis. Don’t let me die like this.
Thank you to all that acknowledged this devastating illness that has so many imprisoned in our bodies and home. We look forward to future movement in money for research and awareness.
I am so grateful for recognition of this disease, which saddens me every day as I witness the severe limitations on the life of someone dear to me.
I'm from Jamaica Plain and I very much appreciate the MA delegation's support for CFIDS/ME & FM research. This is a very understudied disease. Better treatment could improve the lives of millions. This is a very big deal.
Thank you for recognizing this disease. By getting more people to understand the millions that are missing, we can get the funding to find a cure!
My daughter has lived a very challenging and frustrating life with CFS/ME for the past 14 years. Her entire adult life looks nothing like her dreams and goals she set at a very young age. Ironically, her dream was to enter the medical field to help others. Little did she know that this dream would not be realized for years. Thank you for your support now and in the future. She, and we, are counting on your continued advocacy.
Thank you so much for your support.
Thank you for your support for ME/CFS patients!
-Shelby Meyerhoff, Winchester, MA
Thank you to the Massachusetts Congressional delegation, for supporting Fibromyalgia. This support is important to me, my family and friends.
Thank you so much for your support.
A big thank you to the entire MA Congressional Delegation for your joint statement of support for people with ME, on the occasion of your screening of the film UNREST at the Regent Theatre. After an intense number of years when my mom was diagnosed with ALS, and my husband with an extremely rare cancer, my own health suffered greatly. Though the onset was during my husbands illness, I ignored it because I was overwhelmed in caring for others. Only after my husband passed, and my illness continued progressing did I seek help myself. It was a considerable journey during which I certainly was heading towards disability. Eventually, I found more help through a support group than the countless doctors I had seen. Today I am one of the fortunate ones with fibromyalgia that is being fairly well managed via multiple medications. Though life is not normal, and I have limitations, I am able to continue working and am very grateful.
Thank you so very much to my Senators and Representatives! Thank you for believing that ME/CFS is real, and thank you for your efforts on behalf of your consituents like me who suffer with this disease. I have been ill for the past 10 years. I live only a few minutes from the Longwood medical area in Boston, so close to the greatest medical minds in the country, and yet nobody there is able to do anything to treat ME/CFS. With your support, that will hopefully change in the not-too-distant future.
Once again, Massachusetts is in the forefront, supporting those who need it desperately. I have suffered with CFS for 15 years. Just this year I had to give up my teaching position; a job I loved very much and miss dearly. When I see government officials such as yourselves pledging support I feel hopeful we might finally find some answers. Your compassion and desire to bring attention to our plight makes me proud to claim Massachusetts as my Home. Thank you, and please persevere for us!
Thankyou so much. This is a very good example for the rest of the world. Inge, The Netherlands (i have severe ME/CVS since 29 years.
Thank you so much. This is a very good example for the rest of the world. I have severe ME /CFS since 20 years. Inge, The Netherlands.
Thank you for supporting the CFIDS/ME community. You give us hope.
Thank you! Your support is invaluable.
There are millions missing world wide because of ME, with 25% bedridden or housebound - some even for decades.
By issuing this statement, you've all taken a very supportive stand for the ME community, raising the standard for other policy makers to follow your example.
From Canada with Thanks!
Thank you MA Congressional Delegation for acknowledging the plight of those fighting for research funding for ME/CFS -- and for their lives.
From Cambridge, MA, I am deeply grateful to you for the recognition from the MA delegation of the seriousness of this disease. As someone with M.E., it gives me hope of progress, of a glimpse at getting my life back. Thank you.
**Thank you** to the entire MA Congressional Delegation for your joint statement of support for people with ME, on the occasion of our screening of the film UNREST at the Regent Theatre, in Arlington, MA, on November 12th. As you can see in the photo, we read your joint statement aloud in front of 358 attendees, many of whom were Boston area healthcare professionals. Your statement of support is groundbreaking. It gives hope to the 28,000 MA residents living with the neuroimmune disease ME/CFS, as well as the 1-2.5 million in the U.S., and the 17-20 million around the globe. I AM SO GRATEFUL FOR YOUR SUPPORT. -- Best, Rivka Solomon, event co-organizer, Massachusetts CFIDS/ME & FM Association
Thank you so much for your support. It is immensely appreciated!
Thank you so much for supporting MECFS. It is greatly appreciated and means so much to our community! matina
Thank you for your support , one of the many from Belgium.(patient with ME for 26 years)
The last 1.5 years it was a hell , i hope its chance again that i can get out a few times in a year
I wish everybody a big hug, much love and no pain !
Warm greetings from Belgium
Thank you so much to the entire MA Congressional Delegation for supporting the more than a million Americans with ME! I was an MIT grad working in microfinance when I became disabled more than eight years ago. I am very grateful for everything you are doing to help us get equitable NIH funding for the disease (which would be 20x higher than it is now based on disease burden.)
Thank you MA delegation for your support for ME/CFS patients. It makes me proud to be a Bostonian!
Thank you to the Massachusetts Congressional Delegation for awareness and support of ME/CFS patients across our Commonwealth. I am from the MA-6th District and have had ME/CFS for 32 years, we estimate there are 28,000 patients state wide who need your help and support.
Thank you.for.your support of ME/CFS. I have been ill with this disease for 40 years. Massachusetts can lead the way in helping so many like me.
Thankyou so much for supporting those of us who suffer with this illness, it's very much appreciated.
Greetings and heartfelt thanks from the UK. As a mum who's had ME for 33 years with 2 children who also have the illness, I much appreciate your support for biomedical research and live in hope of a simple, recognised diagnostic test which would help dispell the myths which still surround ME. This would, I'm sure, encourage governments to fund research towards a greater understanding of the disease and ultimately, treatment.
Thank you SO much for taking the time to understand the burden this disease has on so many people. I live in Michigan and my pleas to my representative have fallen on deaf ears. I am delighted that you are listening. Thank you!
Thank you. Very much appreciated!
Thank You! I lived in Brookline, MA for many years. I have had CFS for 20 years.
Cannot believe it, the Magnificent 11!!! Grateful thanks to the Members of Congress Massachussetts! It is so easy to ignore silent suffering instead of sticking your head above the parapet of judgement to give support to those who are too ill to help themselves. Your wonderful action has reached Manchester, Uk - sending back the love!
Thank you, MA delegation, for your on-going support for persons with ME. I live in the MA 4th district and am the wife of a person who has had ME for over 30 years, which greatly curtailed his career as a physician. We have both worked our hearts out for many years to bring attention to this debilitating disease within the medical community, and with our elected officials and public agencies. Your support is so critical and so much appreciated. Thank you Congressman Joe Kennedy, Senators Markey and Warren, and the entire MA delegation!
Thanks so much for your support of ME/CFS! I've been living with mild CFS for 30 years and cannot and have not had a regular social life with family and friends due to my limitations. Support, education of medical professionals, and funding for ME/CFS research is desperately needed with 25% of us housebound and 70% of us unable to work.
Thank you! Your recognition is greatly appreciated. It represents a pioneering step forward in patient advocacy for those currently devastated by this complex and chronic illness.
Thanks for your support, let's hope others follow your example. God bless Susan
Thank you so much from the UK.
The developments and support from yourselves and NIH have started to open the eyes of UK medical establishment. This is essential for all those suffering without support.
Mary Coughlan-Clarke ( a carer)
Thank you. Your recognition of this debilitating disease is very welcome. From Nick in the UK.
Thank you from Wales, uk, we have been invisible for too long!
Thank you for your much needed support for all of us with ME/CFS/SEID!
From those of us all round the world who are ill, thank you.
Im pleased to see a clear statement of support from legislators for improving the lives of the many people with mecfs. I hope you will also consider the importance of curative treatment.
Brilliant thank you so much
Thank you for shedding light on the darkness we people with MECFS have lived in for far too long.
THANK YOU for ALL you do for us PWC/PME/PFM/PGWS! Please do keep up the great work I've been supportive of for decades, since I was on the Board of NJCFSA & initiated a donation from our Org to keep y'all afloat! <G>
Thank you from all my heart for standing up for us.
Karin Alvtegen, Sweden
Thank you from Ireland,
Thanks for your support from a cfs/me sufferer from London UK. Started with a severe gastric virus c 15 years ago.
Anna A London South.
Thank you, from a sufferer of 23 years with M.E. and no treatment.
Thank you for setting an example for others to follow to support this neglected illness. Helen
Thanks for your support. Keep up the good work!
Thank you to all members of the Mass congressional delegation on behalf of the millions who suffer from this devastating disease.
All the way from the Netherlands, I want to thank you very much for your support for people with ME.
A heart-felt thanks from Canada! Your statement means the world to me. Now, for the first time since I became ill (in 1992), I'm beginning to feel hopeful for a cure for my debilitating illness. Thanks for your support!
Thank you so much
I am a journalist & photographer that lost my life to ME eleven years ago.
Thank you for your work from
Trine in Norway
Thank you so much for your support and helping us raise awareness for this disease. You’ve set an example for the rest of the states and we are happy to have your help! It honestly means a tremendous amount for me and my family to see progress developing and improvements being made for MECFS, advocacy, funding, science, research and hopefully an effective treatment or cure will follow! Thanks - amelie
Thank you for your support! My wife suffers from ME. It will take bold steps forward like what you have done to raise awareness to eventual treatments.
Thank you so much for your support! I've been suffering from ME/CFS for 26years now...over half of my life
Thank You for bringing Hope to everyone suffering MECVS in Your State! Once the Dutch Government has to follow Your step!
Egbert Vis, the Netherlands, Amsterdam area.
Bravo Massachusetts for your important statement of support for those suffering with M.E.! It means so much to those of us who suffer in the shadows of this devasting disease. Thank you, thank you, thank you!!!
Thank you so much for your support!
My step-daughter is one of the many 'invisibles' living with the devastating ME/CFS condition in Massachusetts and her only hope is more funding for research to understand this disease and find a cure.
Thank you for supporting those of us who live with this devastating illness-we appreciate it.
Jane from Scotland
Thank you for giving your support to people who suffer from the debilitating, hidden and life theft illness which is ME.
Thank you x
As someone who has struggled with ME, I can’t begin to thank each of you for your support. Far too many years were spent denying this condition existed, only adding to the feelings of hopelessness and despair. ME sucks the life right out of you, destroying one’s capacity to participate in life in any meaningful way. Thank you for helping provide hope.
Thank you from a family with ME in New Zealand. Your support to fight this disease helps millions of people around the world.
Thank you Massachusetts Delegates for leading the way! Every State and Federal government official must be made aware of the 1-2.5 million Americans suffering with ME, and the resulting massive economic burden on our country. As a Registered Nurse disabled by ME, I am horrified by the lack of available competent and compassionate medical care and support for those afflicted and their families. This is an international health crisis. We need action now! Too many have been too ill for too long! Your support is very much appreciated! Sincerely, Cheryl Boese RN
Dear Massachusetts Congressional Delegation, thanks for your leadership in helping to find the cause and hopefully cure for CFS/ME. I'm from Sheffield, England and attended the screening of Unrest there. ME is a worldwide problem which shatters lives.
Your action has given me hope.
Many thanks John Gillis
Thank you for supporting people with CFS... which I've had for over 20 years. Marcelle
Thank you for supporting people with ME/CFS and calling for research efforts to find the cause and a cure. After coping with this debilitating illness for 25 years, it gives me great hope to see attitudes changing.
Thank you so much for helping those of us who struggle with ME/CFS!
Magdalene Rose, a Bostonian!
Thanks for all your good work!! I have one dream. Just one. That we can beat the ME /CFS. You all give us as patients hope. Thanks fot that and all the rest. Greetings from belgium.
Thank you so much for taking the lead on supporting and encouraging research on ME/cfs. Your joint statement brings hope not just to your consituents who have ME, but the entire ME community. It is also an important public acknowledgement that helps to remove the stigma we suffer and raises public awareness about the poor status of this disease and its victims.We look forward to seeing progress on biomedical research, especial that which deals with chronic and complex disease, in particular ME.
Thank you for seeing the unseen and giving recognition to the invisible ill. Your support is SO very appreciated. There are hundreds of thousands of us around the country imprisoned in our own bodies. We rely on you to fund ways to free us from this devastating disease.
I hope you are the beginning of more legislative bodies who recognize and represent the enormous population of ME sufferers in the US and across the world. We have been waiting :) well done and thank you!
Thank you so much for your support of ME sufferers! It means a great deal to us. You are a beautiful example to the other States and places all over the globe... Spread the word on ME and our need for more research, answers and hope. Thank you again. <3
Ashley Roll, BC, Canada, ME since age 11, now 34
Thank you from Australia.
Thank you so much. I live in the United Kingdom, but this is still a huge step for everyone with ME/CFS worldwide. Any positive recognition sets an example for others to follow- even when it’s near enough on the other side of the world! From a 19 year old who’s lost so much of her life so far and isn’t sure where she’s going to be able to go; thank you for giving hope that this will eventually be recognised on a larger and larger scale.
Thank you so much for supporting those of us who suffer from ME/CFS. It means so much to me that you all would take the time to learn about the illness and demonstrate the kind of compassion that is so needed. I live in Maryland and would love to see us follow the leadership shown in Massachusetts.
Thank you so much for your support for people with ME. It renews my hope
Thanks for helping our ME/CFS community!
Thank you so very much! I was working on my Ph.D. when I got a "flu" that never went away. That was 28 years ago when I was 25. I was unable to finish my education, work or have a family. I was very lucky in that I had just gotten married and my husband saw who I was before (very physically active and productive) and after (extremely debilitated- feeling like I constantly had the flu) and he BELIEVED me and has stayed with me.
I am better than I was, but still very disabled. The worst thing about this illness is not that is steals your life though. The worst thing is the social isolation: People don't believe you and it creates a chasm between you and those who are not so afflicted.
I, and the millions of patients with Myalgic Encephalomyelitis, thank you for giving us hope, understanding, and humanity we need in our institutions. Thank you, and we look forward to doing more, together.
Thanks so much for your support.
Deep, deep gratitude, MA delegates. You have given this Rhody girl hope!
Thank you so much for your support and for representing us in Congress. I've had ME/CFS for seven years - four of those years spend living in a nursing home and I don't want future generations to go through the same suffering I have.
This gives me so much hope that things will change for the millions of patients missing from their lives..
I must say that your little state has big action and voice. Congratulations for your actions for people with ME. I hope many others will copy your excellent and caring example!
Thank you for supporting people with ME/CFS. The disease has been neglected for decades. Imagine dying of cancer and your doctor tells you that “it’s all in your head”. Since a doctor tells your family this; they think that “ it is all in your head”. Throw in Graded Exercise Therapy GET, and you get worse. Then the doctor tells the family that “you’re not trying hard enough”. So to avoid the negativity, you isolate yourself. Just you and a room. That’s what it’s like to have ME/CFS.
Funding for further research is desperately needed. Funding causes based on psychological treatments (thinking your way to health) is a big waste of money.
Thanks. Im tiring of grieving for my life.
Thank you so much. You’re support will improve the lives of millions
My thanks for your compassion for those of us suffering so mightily.
Thank you so much. I've been homebound and unable to work since 2011. Turned down twice for SSDI by judges who didn't believe in/don't understand CFS. Thanks for raising awareness. -Craig Martens, Tacoma, Washington
Many thanks! I wish we had an Oregon delegation that would do this.
Thanks you so much.
This greater awareness and action at the political level will (hopefully) really help to start more action on research into ME/CFS, and also have it taken more seriously by doctors, emplyers, friends, relatives, insurance companies, social security ... etc.
Thank you for signing this groundbeaking statement of support for all of us who have suffered forgotten for far too long with the devastating illness ME/CFS. Jan Boyer
Thank you so much for your support! I'm a MA resident who's been dealing with this illness for 21 years & disabled for the last 8.
Thank you for recognizing us! I'm so greatful. Perhaps there will be a treatment or a cure in my lifetime. Your support is so valued and appreciated!
Expressing my appreciation for recognising ME. I have not worked since 2014 and now live with my mother and recieve a disability pension for which i am grateful. Not housebound but limited in social life and independence,i look apparently well and am afraid of being labelled a malingerer.im 60 years old unwell for 7 years.
Vivien Canberra Australia
Thank you for your support for people living with ME/CFS! We appreciate it very much!
Thank you so much for the support of so many people who suffer from this unimaginable disease. My Mother suffers greatly from this. I have seen it with my own eyes! No one should ever be left this way without some concern in this country.
Thank you for your support. We need it. Best,
Thank you for such solid support and believing in us. You are at the cutting edge of positive change for millions worldwide. Bless you all for standing up for truth.
A UK sufferer.
My dear friend Tommy Thompson that is the genus engineer that found the SS Central America ( read book Ship Of Gold in The Deep Blue Sea) has suffered from this disease since 1992. He is being held in jail on civil contempt of court for over 2 yrs They continue to hold him indefinetly, denying him medical treatment, not believing that he has an illness. He is in a wheel chair continuing to decline and being denied his basic civil rights.
Anyone that can possibly help us please reach out to me.
Thank you so much for your support. Hope that one day Canada will follow you example.
Thank you for your understanding and support. Here is my picture, before I went missing with ME.
Sharon D. Greenspan
Thank you for caring about me and the millions of others with ME.
Thank you so very much. I care for my son who is severey ill here in Maine. I hope that one day my Maine elected officials will sign similar. Pictured here is how my son spent his 31st birthday. He saved his energy so that he could go outside for 30 minutes. He hadn't been outside his room for a month, since a doctor's appointment. I appreciate that finally people are recognizing this debilitating illness.
Thank you so much for your support of people living with M.E. I lived in Massachusetts for over ten years, and though I no longer reside in the state, I am inspired and gladdened by your actions. It gives hope to my family, which has been affected by this terrible illness. Thank you for your support and recognition.
Many thanks from a mother whose daughter has had ME/CFS for 17yrs too long with NO effective treatment.
Thank you to all 11 Massachusetts Congressional Delagates for taking part in the screening and Q/A of the documentary UNREST. I hope you were able to internalize how important it is to increase funding for the debilitating disease of ME (Myalgic Encephalomyelitis). There are over one million people with ME in the US alone. We need the medical community to learn about this disease so it doesn’t takes years before a person is diagnosed. You can be the start of increasing the awareness of ME with your colleagues in Congress. I’m now bed/house bound after 20+ years of living with ME. I advocate for this devastating disease from bed as much as possible. We need healthy people to advocate for us. Please tell everyone you know about ME and the devastation it causes in people’s lives.
I sincerely appreciate your support and involvement.
Our heartfelt thanks to the entire Massachusetts Congressional Delegation for supporting the millions of patients who are living with ME! Many of us are invisible and forgotten because we are bedridden and unable to leave our homes. We are extremely grateful for your tremendous support.
With hope for all,
Cindy, Knoxville, Tennessee
a million thank yous.
Thank you for your support. I live in ma and have dealt with me/cfs 40 years and counting. We need to either educate doctors or somehow give them this illness so they can learn first hand. Medicine is too compartmental to help us. They play pass the patient!
Thank you for supporting all who suffer with ME/CFS.
Thank you so much!
Thank you for hearing our voices. Your support is much needed and aappreciated.
I’m so greatly appreciative for your support of M.E. Hoping other states take suit.
A huge thank you from a ME sufferer for 18 yearsi n the UK! Your support is so important and not just for those in the US, but for us all worldwide. Hopefully one day the MPs in the U.K. will follow your example.
Anne O. Skirvin.
Thanks for supporting ME!
Thank you from Norway!
Thank you from the bottom of my heart! Let’s cure MECFS and give us our lives back!
Thank you to all the Massachusetts senators and representatives. Hopefully we in this state can set an example with strong recognition and support for CFS, much as we have already done in many other areas of medicine.
Thanks for your recognition of these important issues.
I am a disability rights lawyer in Massachusetts and have worked with and known many individuals with M.E. Their lives are extraordinarily challenging and they need the support of our political leaders and the medical establishment. ~Rick Glassman
We the long and silent suffering thank you....we can't run marathons to raise funds!
Thank you. I m so crashed w PEM yesterday and today b/c I did an 1/8 of a mile walk w my rollator. I can barely type this/breathe/keep myself propped up in bed. (Need to lay flat after this!) I feel helpless and frightened, Today and in general for my future/ and the future of all of us w ME/CFS. Your acknowledgement and support mean a great deal for us. Maybe eventually ppl w ME/CFS will be able to get healthful treatment! THANK YOU.
Thank you so much for supporting those of us with this disease in our families.
From an ME patient across the pond. It isn’t immensely encouraging to hear that people are starting to see ME for what it is. Thank you so much for standing up for ME patients. We so need support. Talulah Miers
Thank you for your much needed support for this insidious dissease. I pray that we can cure this and other chronic illness that sap the lives of so many of our once productive contributing members of society. I am impressed with the state of Massachusetts and the forward thinking of support groups, government officials, and citizens. Peace and Blessings!
Much thanks to Mass. please speak to any of your Canadian peers to enlighten our needs here!
Father of son with ME/CFS
Thank you so much for standing up with us!
As someone with ME I appreciate any help on educating people about this disease.
I want to take the time to thank you for acknowledging those of us who live in the shadows of society, invisible to the world.
I greatly appreciate your support and although MECFS suffers may be invisible, I feel optimistic tha I am not forgotten by the leaders and policy makers of the State of Massachusetts.
Thank you so much, Gwen
15 years with MECFS
As a citizen of Massachusetts, and as someone whose sister has been suffering with ME/CFS for decades, thank you for your understanding, compassion, and support.
Your support of all of us living with ME is deeply appreciated. Your leadership will encourage other Congressional members to follow suit.
Thank you for helping to make aware the most devastating and debilitating illness of M.E. Most doctors are not informed correctly - or here in Australia Cfs/M.E. patients are put on a government funded GET programme. - Gradual Exercise Therapy - which only makes those really suffering from M.E. worse and making them bed-bound or house-bound.
I have found the term CFS really belittles the illness, that is, if it is actually M.E.
Sending thanks from Gloucester. I’ve lived 20 years with “last major disease about which we know almost nothing.” I know Massachusetts can be a leader in solving this.
Quote from Ron Davis, PhD, ME/CFS Researcher
Thank you for your support.
Kim Mitchell, Fairhaven, Massachusetts
Dear MA Congressional Delegation: In addition to your support at our event, we were thrilled to also have the support of the above listed gov't, healthcare, disability, ME/CFS, religious, arts, academic and women's organizations. -- Rivka
Thank you for your statement of support for people living with ME/CFS.
In honor of my friend Anne Berry 1969-2017
Together we can make a difference.
I cannot thank you enough for your recognition of this debilitating illness. You have set an example for every other state and I am grateful.
Thank you for supporting ME/CFS research. The 2.5 milllion Americans with ME/CFS have been suffering too long and are ready for treatments and more research funding.
Your statement of support for people suffering ME/CFS means everything to me. I have been ill with ME/CFS for 27 years and bedridden for the past 9 years.
In honour of my dear friend, and fellow ME/CFS sufferer, Rose.
Thank you SO much for caring. Lead the nation MA!!!
Bobbi Ausubel, mother of daughter ill for 28 years
Thanks so much for your support!!! I lost my ability to work in 2013. I miss being able to contribute to my family. Any move
We in Massachusetts are so fortunate to have such a compassionate -- and passionate -- group of people representing us in Congress. Thank you all so much for your joint statement about ME/CFS. You've warmed the hearts of every one of us dealing with the disease and made a strong point about its existence and severity. I fell ill with ME/CFS in 1994, losing a career I loved along with my health. I live in Cambridge in the MA 7th Congressional District and am particularly grateful to our terrific Rep. Mike Capuano for joining in support of this statement. Thank you all!
Thank You from the bottom of my heart as I suffered with CFS for 25 years now, I raised my children as I was severly sick, they missed out on so much, my husband had to work long hours to support us as I had to stop working as a Dental Assistant. My kids are now grown but we are all scared by the limits we had and many ER and Dr visits I had over the years, I was misunderstood, misbelieved and mistreated by medical community because they didnt know anything about this illness. I was weak, dizzy, vertigo, naseaus, low grade fever, low blood pressure, irregular heart beats, no REM sleep, etc.
Thankyou for your support. It means life for the millions missing because of this vicious disease.
A very big and heartfelt thank you to the entire MA Congressional Delegation for your joint statement of support for people with ME, on the occasion of your screening of the film UNREST at the Regent Theatre, in Arlington, MA, on November 12th. I live in England UK and your support is very special to us ME sufferers in the UK. UK and America are good friends and what happens in America today our government listens to and adopts tomorrow so please keep supporting our cause because we suffer such a lot of pain with this disease and no treatment to help us. Regards, Dorothy.
Thank you very much. May the British government follow in your footsteps.
Thank you from all in UK.
Thank you for not ignoring us. Please continue fighting for us - please!!!!!!!!!
Thank you so much for your support! I can't tell you how much it means to us.
Thank you for your support, it will help change the world and the world for all ME/CFS patients. From the Netherlands
Thank you so much for your support it means a lot. Life is a struggle and I wish for a cure or some medication to improve symptoms. I'm have server M.E and Fibromyalgia. I'm in bed most of my life. The picture on the right is how I use to be. I miss this. Thank you again we need all the help we can and really appreciate your support. Emma UK
Thank you for your support! I am from Ohio, and I am truly impressed by Massachusetts stepping up to help your ME population. You have my admiration, and have given me hope that maybe I will get my life back after living with ME for 30 years. Thank you.
Thank you so much for supporting the M.E. community. We are so often neglected and misunderstood that it warms the heart to see people standing with us in our fight for a hopeful future.
Thank you for recognizing this incredibly debilitating illness. For 30 years, my wife has had the same experience as Jennifer in the film. Total exhaustion forcing lengthy bedrest, pain, insomnia etc. Before that, she managed a law office! Early on she also was crawling on the floor. She is a bit improved now, but this is a terrible thing. Terrible pain. Ignorant doctors.
Thank you for giving recognition and raising awareness for ME/CFS. Millions of us suffer as ME/CFS steals our life and our ability to advocate.
Pleased help us increase the funding to find a cure!
Thank you so much. Your support is greatly needed and much appreciated.
Thank you from Sligo in Ireland - I hope more will follow your example of humanity
Even though I am from Germany I want to thank you for your support. Every recognition and support will eventually improve the situation of us ME/CFS Patients around the globe. Every bit of support is important. Thank you!
Thank you so very much for your support of this very disabling and debilitating illness that can affect children as well. With gratitude and appreciation!
Thank you very much for giving M.E. the recognition that it deserves and will help so many sufferers as myself who has lived with the disease for forty years. I hope because of your actions, more and more congresses will sign their support across the States and will move across the globe, especially in Canada where I live.
I watched "Unrest" this summer and applaud Jennifer in her great work , with her research, reaching across the globe to hook up with others suffering from ME, and for her amazing film. I think this film will cause a breakthrough in how others will truly perceive what an agonizing illness for what it really is, and how it effects not only the person suffering from this illness but how it effects the whole family.
Thank you, MA Congressional Delegation for supporting the more than a million Americans with ME. I have been living for more than five years with physicians treating my illness with antidepressants and talk therapy, all when I told them I was not depressed, just exhausted & experiencing pain all over, all the time. This feeling of exhaustion & pain was entirely new for me; I am a Type A personality striving to improve myself my whole life, enjoying the active life I took for granted. That life is gone now, and this chronic illness affects my entire family, especially those closest to me.
Your support means much to people like me, to validate that we are not crazy and lazy. And, more importantly, will encourage research to understand and treat this complex illness.
Thank you, I hope this support spreads to all the other states soon.
Thank you so much for your support of us as a patient community.
I have always struggled with chronic illness but in September 2015, at age 23, I caught a bad cold. 3 weeks later the cold lifted but I found myself struggling with new limitations. I am now usually in bed or a wheelchair, but sometimes I require assistance with basic tasks such as brushing my teeth or eating.
For a severe ME/CFS patient, I am fortunate. The nearest specialist I can afford is only 200 miles away. My family is supportive. But finding doctors has been a struggle, as is explaining there is no cure.
It gives me hope to have our country making strides to recognize us and what we are going through (or have been through for those we have lost), and dedicate resources to improving our lives and fighting this illness. Thank you for your time, sincerely.
Thank you for acknowledging that this illness is very real and extremely debilitating. Eight years ago I was an active, healthy 40 year old woman who within ten months of getting ME/CFS I was needing a wheelchair . Thank you from Calgary, Alberta
Thank you for supporting ME! I was an very productive business owner who grew my business from 1 employee to 25. Now I am disabled. So thank you again!
Courage to lead united with compassion to help make an exceptional representative. Thank you.
A very heartfelt thank you to all involved! News of your support of people with M.E. has traveled very far, very fast. Hopefully Canadian politicians will soon follow suit.
Ottawa, Ontario, Canada
Thank you so much for supporting people living with ME/CFS. My wife is completely disabled by this disease, and part of what makes it so hard is the lack of social and medical support for the disease. Thank you again so much for your efforts!
Here I am in my back yard on a difficult day. Many thanks to you for taking a lead in fighting for this under-recognized and under-funded disesae.
Thank you very much from at 22 year old Australian girl, who’s had the condition for 7 years now. You are making a real difference in my life
Thank you so much for your support!
Bravo Massachusetts! I live with Myalgic Encephalomyelitis and am thrilled to see that it is finally being recognized as the devastating illness that it is. Thank you for all you are doing to spread awareness of this tterrible disease. Keep up the good work!
Thanks. I've struggled with this illness for 31 years and your support means a lot.
Thank you. It truly means a lot to finally have a devastating disease gain some official recognition. May this be the beginning of much more. You are our hope.
Thank you for standing for those who are unable to stand. This means more than you may think. My sincerest thanks.
Many thanks for your recognition of this debilitating invisible illness. Your support means a lot to ME patients everywhere. You have set an example for other states and I am grateful.
ME patient from Dublin, Ireland
THank you so much to the entire Mass. Congressional Delegation!!
News of your support has lifted my spirits. I remember well my days at MIT in Boston and hope to once again become a more functional member of society. I have had ME/CFS for 20 years and we need champions such as yourselves to encourage more funding for research into causes and treatment of this horribly debilitating and not well understood illness.
Sincerely and warmly,
Thank you for your support. Paul Barber, Bolton, UK
Thank you so much for helping with recognition of this horrible disease. The media labelled this disease 'the yuppie flu' and we were consequently. ignored by every group that mattered to us. It's time for some money to be put into research for ME. Have you seen the statistics? For every $250 spent on MS, $5 is spent on ME. I have one Facebook friend who lived with this disease for over 60 years ! That is a lifetime ! There are the occasional notices that so-and-so won’t be posting any more as s/he has lost her struggle with ME and committed suicide. I kid you not. This has happened twice in the 6 months I’ve been active on these boards. Anyway, thank you for your compassion. If you need us, we are a huge presence out here. There are so many of us. It’s a crime
I was living and working in MA when I became disabled from ME/CFS. Thank you for taking this disease seriously. Please continue to do everything in your power to encourage all relevant Federal agencies to fund ME/CFS research, clinician education, and patient support. Your support is invaluable in our fight to regain our lives.
Thank you for your leadership and recognition of this poorly understood disease. I hope California is next!
Thank you, Massachusetts!! Science is my hope and science requires funding. I am so hopeful that our government will come to understand that funding medical research is a bipartisan WIN WIN!! Thank you, again! Marilee Mouser, Ph.D., and ME/CFS patient
As someone who has had ME since 1976 and has been disabled. by it since 1992, I am deeply grateful for your support.
Theresa M. Schroeder
TThanks for your support!
Thank you so much for doing the right thing. Hopefully, others will follow your lead. Our 36 year old son has been sick for 4 years and we care for him at home. Our friend Betsy did not fare as well and sadly took her own life waiting for a cure.
As so often is he case, I am proud to be from MA, a leader in some many ways. This time, as a resident with ME/CFS, I am pleased and appreciative of our federal legislators unanimous support. My life screeched to a stop over a decade ago, but support like yours gives me hope that there might be treatments or even a cure for this debilitating disease.
A MA born & raised resident
As a Canadian, and a 33 year veteran of the life-shattering disease, Myalgic Encephalomyelitis (ME), I whole heartedly thank you for your wisdom, and empathy in standing up for the rights and recognition of the million or more in the U.S. with this terrible disease, and by extension, millions in other countries such as Canada!
Thank you so much! I have been bed-bound with ME for 3.5 years & I am hopeful that research will bring answers finally!
March 2018 will mark my 10 year anniversary of falling ill. I've been housebound for 7 of those years with Myalgic E. Thank you all so much for showing your support and taking this disease seriously! This is something I thought I'd never see in my lifetime, and I send my deepest gratitude to everyone who made this possible!
Thank you again,
Amy S. Keeton-Conley, Denver, Colorado
Thank you so much, congressional members of Massachusetts!!
(I've had ME/CFS for 27 years!!!)
I have had ME/CFS for 22 years and it has certainly altered my life dramatically - job, social life, activities all seriously compromised. Although I am in NZ (doing a PhD trying to develop a 'blood test' for ME/CFS) you support is much appreciated & hopefully thanks to you, awareness and further support will expand across the USA and then globally.
Angus Mackay, Dunedin, NZ
Thank you for believing us, Supporting us and raising your voices for us in halls of congress.
Thank you Massachusetts Congressional Delegation for your support. Your action supports people worldwide and we send much gratitude from Queensland Australia.
Thank you from Scotland. We are many thousands here with ME-CFS and every gesture of support that leads to increased research into the cause of this disease and the discovery of a treatment is very welcome!
Thank you for your support in making a difference in the lives of all families inflicted with such a horrific illness such as CFIDS/ME. Your support is so greatly appreciated by all of us.
Veronika Voss Ph.D
This is me in Kuwait on study abroad, with ambitions of a purposeful career in international affairs -- studying Arabic & with an additional major in philosophy. This is me right before my life was derailed by ME/CFS and I am not mostly housebound and bedbound, unable to contribute my talents/gifts to society in the way I long to do. Thank you so much for supporting the urgent need for more research for this disease. I never ever would have chosen this life. I had big dreams. Thank you for hearing us.
Dear Massachusetts Congressional Delegation Members, All of the American ME/CFS suffers need the Congress's funding for them to get rid of this decease at an early date. Thank you very much! Hank, San Francisco.
Thanks, MA. I only hope TX will follow your lead! I've suffered from this for 30+ yrs., mainly housebound and for many years, bedbound. A loving hubby (thank-you, Lord!) & 2 adult children who were teens when it began. Our loves were turned upside down. Had to withdraw from life as we knew it, no one could honestly deal with it, anyway. I had so much to offer, and did it thru various organizations (during yrs. after diagnosis), but I'm too worn out now. Just another tired, old lady who really did deserve a chance to make things better for a lot of other people. Perhaps now we'll at least be believed...no longer the butt of long looks and jokes. We've been pariahs. I thank everyone involved in this, from Jennifer Brea & hubby, on and on. Go MA!!!!!!!!!!
Thank you! ME/CFS has turned my friend Beth's life upside down. I am so glad it is finally beginning to be taken seriously. Your actions make a big difference!
Susanna Kittredge, Boston
Thank you very much, Massachusetts Congressional Delegation, for showing your support to ME/CFS patients. The #millionsmissing around the world need representatives like you to spread awareness and allocate greater research funding for this disease. I hope that more Congressional Delegations will step up and follow your example. Thank you.
Hello from Roslindale, MA-Massachusetts 8th Congressional District!
Thank you so much to the entire Massachusetts Congressional Delegation! As you no doubt understand now, this disease is devastating, debilitating and poorly understood. Although I initially became ill in the 1980's, because doctors could not explain it, I pushed through and did more than I should of resulting in a gradual worsening. Without going on for too long, living with ME/CFS, for me now a moderate+ patient, is like functioning at about 50% or less, of an ordinary 49 year old.
This means many losses. The loss of time with family and friends, the loss of many friends, loss of a social life, loss of the ability to shop regularly for myself, loss of career-peer interaction, and the loss of self-worth. For the last 8 years I have been unable to work outside of my home office. I am lucky because cognitively on most days, I can do a little work-legal writing.
Thank you again,
Cassandra S. Gerhardt
Gracias desde México. Your support gives hope to patients all around the world.
One day the silent tragedy that is the lives of those who suffer with this invisible but devastating illness will be understood. We who are unwell know that. Thank you for helping us bridge toward that day. It takes humility and grace to lend respect and attention to that which you don’t understand. We promise you one day this illness will be understood and you will know you are part of the reason andbthat you didn’t just stand by in the face of others suffering. Thank you.
Thank you for your much needed support. I have suffered for 29 years and now have such severe intolerance to cold, this is me at 65 degrees. I am wearing 14 layers including 3 scarves and a hat as well as a coat hood and blanket on top. I pray your support will lead others in positions of power on the same path.
A very heartfelt thank you for your support. It means so much to have people who don't necessarily have ME/CFS but who are in a position to raise awareness and bring help, fighting for us. For so long, those who are unwell have had to be their own advocates, trying to convince others of the need. Thank you!!!
You have given me hope that things can improve one day!
Thank you for recognising this neglected disease! Your recognition affects sufferers all over the world. I thank you from Australia.
Thank you for taking this seriously. I have been ill since contracting severe chicken pox aged 26 - I had my whole life ahead of me. That was 25 years ago and led instead a different, limited life.
Thanks for all you are and will do.
Thank you so much- from Surrey in the UK
Thank you all so very much. It even helps people like me with ME in England. In gratitude, Anne Vaidya.
From Cambridge, MA, thank you, thank you, thank you to the entire Massachusetts delegation for your support. We are so fortunate to have you fighting on our behalf.
Leah -- mother of two kids with ME/CFS
Your support means the world around the world. Thank you!
A lifetime (20 years) of relentless dedication to education was cut short by these soul sucking diseases (ME/CFS and Fibromyalgia). I expected 10 more years of doing what I have been and am still most passionate about - helping people learn.
With your remarkable example for other states/provinces, I feel for the first time, that I may yet have a normal day before I am added to the list of those who have been taken to their graves having lost the fight to the unrelenting and devastating pressure these diseases grind on our bodies.
Please urge your colleagues in other states to follow your thoughtful and compassionate lead.
Thank you. William
Thank you!! for supporting ME people locally - a shining light and leading example of consideration.
My friend has had ME for nearly 30 years. This means a lot to me and her.
Gratitude and appreciation.
From New Jersey, thank you to the Massachusetts Congressional Delegation for your support of people living with ME/CFS. Your efforts are very much appreciated by all in our community.
Thanks so much! Even though there are so many of us, we seem to
suffer in silence. Our lives are ruined by this illness but no one has money
for research to find a cure.
Thank you for your leadership on ME. For purely economic reasons, if nothing else, this disease must be researched and it's victims must be supported. We all lose out on the labor, energy, talents, friendship and intelligence of the countless ME patients, including young people who, are surviving but never able to function out in the world.
Please continue your work on education and advocacy.
Thank you so much for your support. My son is 44 years old and can't work because of this disease. He has moved back home with me because he has no income.
Thanks for your support for those struggling with M.E./CFS. My three children all were sick during their teen years. They missed years of school. One recovered, one has symptoms but works and lives independently, and one is completely disabled, living with us in her mid-20s and unable to work or attend school. We truly appreciate any recognition of the severity of this disease, and believe that we must put more money toward research for a cure. It is high time patients with ME/CFS were believed and treated with dignity and respect.
We are Massachusetts residents.
A thousand thanks for your compassion. Thank you for your suppport in fighting for a cure.
Thank you and please consider sponsoring a bill to increase funding for research into Myalgic Encephalomyelitis. It has been stagnant for decades despite our best efforts.
Many thanks ineed!
Thank you all. I've always been proud to have been born and raised in Massachusetts. Now that I often can't stand for long, I thank you for standing for me.
Thank you so much for your support for people with ME and their needs. I live in the UK and have had ME for 13 years. I'm housebound. You are a great encouragement.
Thank you for your support! I’ve been sick with ME for 9 years, unable to work, severely limiting my family’s ability to participate in life. We appreciate the visibility you provide us and those like us. Thank you!
Thank you MA leaders. I am the mom of an adult son who has suffered from ME for 15 years. Thanks for lifting his & my feelings of isolation. Bless you
Thank you so much for your support for persons with ME/CFS! It is one of the most devastating illnesses, and yet receives almost no NIH research funding. Patients have languished for decades with no medical help. So your support is invaluable - I can't tell you how much it is appreciated! : )
From the uk, but still i want to add my thanks as someone who has M.E.
As awareness increases, more research and appropriate support and at long last we will find out root cause and cure/s for it
Other politicians and celebrities will become bolder in their support, more funding becomes available
Your actions will affect those outside of massachusets and across the world
Thank you for standing up and supporting people with ME
I was born in Massachusetts! Thank you so much for your support of people like me. This illness has been life-changing in the extreme, but I will not regret this life because it has shown me so much of the good in people like you. Gratefully, Sarah Turner
Thank you for remembering this forgotten disease. It's encouraging to hear that someone knows about us in D.C.
All my best,
Janelle from Washington State
Thank you from the UK!
Now I love Massachusetts even more. Thank for being at the leading edge of the movement to bring this devastating condition out of the shadows.
Thank you from the bottom of my heart for your support of ME CFS patients! Your actions will help bring proper research, diagnosis and effective treatment in my lifetime.
THANK YOU AGAIN FOR THE MEASURES YOU HAVE TAKEN!!!!!
I have had ME 26 years, I lost my career,leisure activities, friends and even some of my family don't accept my illness.I helped others for 26 years working as an occupational therapist for the NHS, the last 11 years of which with ME. I thought the cause was psychological and was so desperate to earn enough to pay for private therapy ( not available on the NHS at that time) that evenings, weekends and holidays were largly spent in bed. Clean hair,a clean house and car became luxuries and eventually I had no choice but to give in and give up my job. Since then I have been largly housebound and if, 26 years ago, someone told me that I would get an illness that society ignored , I would simply not have believed them! Thankyou so much from the bottom of my heart for your support, makes me feel that there is hope and one day a cure for this hell of an illness. Karen.
Thank you for bringiing more attention to our plight!
I thank you immensely from the depth of my heart for your help in increasing awareness of this crushing disease and working hard to get research funding so that treatments and maybe a cure can be one day found.
C Isaacson Barash- Boston
Many thanks to all who have shown support to those of us suffering from ME/CFS. I am a long time Massachusetts resident who, after being diagnosed 28 years ago, has gone from being an active, productive, professional to an invalid dependent on my family and others for most of my daily needs. Any focus our representatives in government can place on this horrible illness is deeply appreciated.
Thank you so much! My daughter suffered for years without a diagnosis and was made to feel as though it was her fault. Let's change how we treat these patients. Alex, Massachusetts
Thanks for your support.
Thanks for helping people like me that have been sick for so many years.
Thank you for making Massachusetts a leader in the fight against this debilitating disease. People with ME/CFS deserve to live better lives but this won't happen without adequate funding for research..
I count every year that I have been disabled with me/cfs and now I am unfortunately up to the number 27. Thank you for finally giving me some hope that there might be a treatment in my lifetime that will allow me to live something of a normal life where I wake up every morning with energy to live.
Thank you so much for your support & advocacy to increase funding & awareness for ME/CFS!! It means so so much to those of us who are ill with this disease. I’ve been sick & disabled for 15 years and had to leave my beloved job as a teacher. I really want to be an active member of the community again. I’m proud to be a MA resident & to have leaders who care about people suffering from chronic illness. Keep up the good work & thank you!
Thank you & God Bless
Dear Congressional Delegation,
Thank you from the depth of this work out heart for your support. I now feel less alone in this struggle of CFS/ME and Fibromyalgia. You put hope in my heart that finally those who can will find a cause, and dare I say cure, for these debilitating and life altering conditions.
Deb Souther, Attleboro
Thank you so much for this much-needed support. I am confident others will now follow your leadership. I had to abandon my career as an aerospace engineer here in Denver CO 28 years ago due to being permanently disabled by CFS/ME from any occupation.
On behalf of my entire family...thank you for your support!!!
Thank you from Western Massachusetts. Your recognition and support are groundbreaking and offer hope to those of us with this debilitating condition. I'm truly grateful!
Thank you so much Massachusetts
My heart is so warmed from this support. Perfect timing for me. I was feeling better for years, and recently experiencing a bad relapse.
Thank you from a CFS sufferer of 10 years. Catherine Shepard, Uxbridge, MA
Thank you, Massachusetts. We need recognition & support. You have made a vital step for us. I am a sufferer for 50+ years. I live in Massachusetts.
Thank you from British Columbia, Canada, for leading the way which we can ask our legislators to follow.
Thank you for your much needed support.....so appreciated! A Cooke...Canada
I'm ill for 18 years homebound 96% bedridden. Can't find primary care doctor to help me with things i need. We are all desperate and suffering tremendously. I thought torture was illegal in this country. Our lives are filled with true misery.