Post Polio Syndrome and ME/CFS: Common Ground

Mia Farrow

Years ago, I read a book by Dr. Richard L. Bruno called "The Polio Paradox: Understanding and Treat 'Post-Polio Syndrome' and Chronic Fatigue" (published in June 2002 by Warner Books).

I was struck by the number of similarities between PPS and ME/CFS, which, combined with the fact that so many early outbreaks of ME/CFS occurred on the heels of polio epidemics, led me to believe the ME/CFS was caused by an enterovirus. Because the poliovirus, a member of the enterovirus family, caused extensive damage to the nervous systems of polio victims, the symptoms can be as varied as those of ME/CFS. Like ME/CFS, these symptoms can also persist for decades.

While the evidence of a causal link between the two illnesses would be hard to establish, there can be no question that they both are devastating, and that managing them is essential. As Dr. Bruno said in his book, "If you are standing and can sit, then sit. If you are sitting and can lie, then lie down." I have always taken that piece of advice seriously, much to my benefit.

Below is a letter written by the actress Mia Farrow, who was stricken by polio at age nine, and her son, Thaddeus, who was paralyzed by polio at age twelve. You will be struck by our common experience.

For more information, please visit the Post-Polio Institute.

By Mia Farrow

POST-POLIO SYNDROME: AN OPEN LETTER 

WHAT ARE POST-POLIO SEQUELAE?

Post-Polio Sequelae (PPS, Post-Polio Syndrome, The Late Effects of Poliomyelitis) are the unexpected and often disabling symptoms -- overwhelming fatigue, muscle weakness, muscle and joint pain, sleep disorders, heightened sensitivity to anesthesia, cold and pain, as well as difficulty swallowing and breathing -- that occur about 35 years after the poliovirus attack in 75% of paralytic and 40% of ''non-paralytic'' polio survivors. There are about 2 million North American polio survivors and 20 million polio survivors worldwide. The existence of PPS has been verified by articles in many medical journals, including The Journal of the American Medical Association, the American Journal of Physical Medicine and Rehabilitation and The New England Journal of Medicine.

WHAT CAUSES PPS?

PPS are caused by decades of ''overuse abuse.'' The poliovirus damaged 95% of brain stem and spinal cord motor neurons, killing at least 50%. Virtually every muscle in the body was affected by polio, as were brain activating neurons that keep the brain awake and focus attention. Although damaged, the remaining neurons compensated by sending out ''sprouts,'' like extra telephone lines, to activate muscles that were orphaned when their neurons were killed. These over sprouted, poliovirus-damaged neurons are now failing and dying from overuse, causing muscle weakness and fatigue. Overuse of weakened muscles causes muscle and joint pain, as well as difficulty with breathing and swallowing.

HOW ARE PPS DIAGNOSED?

There is no diagnostic test for PPS, including the electromyogram (EMG). PPS are diagnosed by excluding all other possible causes for new symptoms, including abnormal breathing and muscle twitching that commonly disturb polio survivors' sleep, a slow thyroid and anemia. Other neurological or muscle diseases are almost never the cause of PPS symptoms.

ARE PPS LIFE-THREATENING?

No. But because of damaged brain activating neurons polio survivors are extremely sensitive to, and need lower doses of, gas and intravenous anesthetics and sedative medication. Polio survivors can have difficulty waking from anesthesia and can have breathing and swallowing problems, even when given a local dental anesthetic.

IS PPS A PROGRESSIVE DISEASE?

PPS is neither progressive nor a disease. PPS is caused by the body tiring of doing too much work with too few poliovirus - damaged, oversprouted neurons. However, polio survivors with untreated muscle weakness were found to lose about 7% of their remaining, overworked motor neurons each year.

IS THERE TREATMENT FOR PPS?

Yes. Polio survivors need to ''conserve to preserve,'' conserve energy and stop overusing and abusing their bodies to preserve their abilities. Polio survivors must walk less, use needed assistive devices -- braces, canes, crutches, wheelchairs -- plan rest periods throughout the day and stop activities before symptoms start. Also, since many polio survivors are hypoglycemic, fatigue and muscle weakness decrease when they eat protein at breakfast and small, more frequent, low-fat / higher-protein meals during the day.

ISN'T EXERCISE THE ONLY WAY TO STRENGTHEN WEAK MUSCLES?

No. Muscle strengthening exercise adds to overuse. Pumping iron and ''feeling the burn'' means that poliodamaged neurons are burning out. Polio survivors typically can't do strenuous exercise to condition their hearts. Stretching can be helpful. But whatever the therapy, it must not trigger or increase PPS symptoms.

IS TREATMENT FOR PPS EFFECTIVE?

Yes. The worst case is that PPS symptoms plateau when polio survivors stop overuse abuse. Most polio survivors have significant decreases in fatigue, weakness and pain once they start taking care of themselves and any sleep disorders are treated. However, because of emotionally painful past experiences related to having a disability, many polio survivors have great difficulty caring for themselves, slowing down and especially with "looking disabled" by asking for help and using assistive devices.

WHAT CAN DOCTORS, FAMILY, AND FRIENDS DO TO HELP?

Polio survivors have spent their lives trying to act and look ''normal.'' Using a brace they discarded in childhood and reducing overly-full daily schedules is frightening and difficult. So, friends and family need to be supportive of life-style changes, accept survivors' physical limitations and any new assistive devices. Most importantly, friends and family need to be willing to take on taxing physical tasks that polio survivors may be able to do but should not do. Doctors, friends and family need to know about the cause and treatment of PPS and listen when polio survivors need to talk about how they feel about PPS and lifestyle changes. But friends and family shouldn't take control of polio survivors' lives. Neither gentle reminders nor well-meant nagging will force polio survivors to eat breakfast, use a cane or rest between activities. Polio survivors need to be responsible for caring for their own bodies and ask for help when they need it.

Whether you had polio or not, please COPY and MAIL this letter to your doctors. With your help every doctor will learn about the cause and treatment of PPS and give polio survivors the care we so desperately need. Thank you!

Signed, Mia Farrow, polio survivor and Thaddeus Farrow, polio survivor

Send a message to Congress: We can't wait any longer!

The Bob Miller team is once again springing into action. This letter (see below) is a call for the FDA to hold a follow-up meeting to expand upon the FDA meetings of April 25-26.  (You can read a summary of Day One of the FDA meeting here. You can read summaries of the Day Two morning sessions here, and Day Two afternoon sessions here.)

Why is this necessary? 

The FDA meetings opened the door for people in government, and in industry, to start thinking about ME/CFS treatments. Although it's nice that they are beginning to think, the epidemic that marked the beginning of agency concern about ME/CFS happened nearly 30 years ago. We can't wait another 30 years. 

By Bob Miller

We, the “FDA Team*,” are asking you to send the message below to the FDA and to listed members of Congress.

The recent patient-focused drug development meeting held by the FDA was a start – but only a start. The FDA stated that their goal was to support treatments for the chronically ill, particularly where there is a drug deficit, yet the meeting fell short of meeting that goal.

The original goal of the FDA Stakeholders was to provide a clear regulatory pathway that would support faster drug development for ME/CFS. That obviously did not happen.

Now Bob Miller and others on our team are continuing communication at the top level, including with Dr. Janet Woodcock, Director of the Center for Drug Development and Research at the FDA. We have informed her that your messages will be sent to one of her staff members, David Banks PhD, of Special Health Issues.

We want them to hear from you, family and friends. This keeps critical channels of communication open.

NUMBERS COUNT!

AIDS patients demanded one thing: Treatment. And they got it! We must demand the same.

Please email the following to David Banks and myself, Bob Miller. (I am monitoring how many emails are sent along with other FDA team members.) Also, we ask you to CC others in the Department of Health and Human Services and congressional staff members so they can influence the FDA.

Just copy and paste, please add your name and address or email information at the end. (As always, this is just a suggested template for your convenience):

To: David.Banks@fda.hhs.gov, 511bobmiller42@gmail.com
Cc: howard.koh@hhs.gov, Sara_Mabry@casey.senate.gov, Karen_Wade@hagan.senate.gov, Eamonn_Hart@blumenthal.senate.gov, Carolyn_gluck@reid.senate.gov
monica.volante@mail.house.gov, robb.walton@mail.house.gov, rebekah.armstrong@mail.house.gov, eric.fox@mail.house.gov, christopher.Stewart@mail.house.gov, ryan.mcBride@mail.house.gov

Subject: ME/CFS Treatments

Dear Dr. Woodcock:

Over 1 million Americans and their families continue to suffer with ME/CFS. Patients have no treatment options as there are no FDA-approved treatments. One drug has been stuck in the pipeline for two decades (Ampligen), and there are no others likely to be reviewed for years to come. The recent patient-focused drug development meeting fell short of meeting the needs of ME/CFS patients. By the end of this year, FDA must convene a follow-up meeting to engage pharmaceutical and biotech companies to assist the FDA in establishing a regulatory pathway for drug approval.

The stakeholder meeting held on April 25th and 26th opened the FDA’s eyes to the severity of our condition and the enormous Unmet Medical Need. FDA has the power and the authority to waive traditional regulations when healthcare demands, particularly when the disease is serious/life-threatening, as ME/CFS clearly is. We need access to treatments NOW. Please act now for us! Don’t stop the progress; let’s keep it going. We cannot wait another decade for relief. People are suffering and dying.

Thank you,

“Place Your Name Here”:
“Place Address and/or Email Here”

- – - End of your email message – - -

*The FDA Team includes:

Cort Johnson, patient and principal of Health Rising

Robert Miller, ME/CFS patient /activist and (Courtney Miller, patient wife FDA Team support)

Lori Chapo Kroger, patient and president of PANDORA Org.

Pat LaRosa, patient / patient advocate

Billie Moore, parent of patient lost to ME/CFS & patient advocate

The Blue Ribbon: Ryan Prior's Documentary about ME/CFS

Ryan Prior's documentary, the Blue Ribbon, is seeking funding on Kickstarter, a service that enables new filmmakers to realize their visions. You have only a week to show your support for this ambitious project! Now is the time! (With a $25 donation,  you get a free download of the film.)

The following excerpt is from Kickstarter. (Click on the video to watch the trailer.)

THE BLUE RIBBON is a film exposing the hidden story of ME/CFS. It features interviews with top researchers, doctors, and activists.

"ME/CFS is the great under-reported medical story of the times." Llewellyn King, host of PBS's White House Chronicle and columnist for the New York Times-Hearst Syndicate.

The story of this film begins with a story I wrote for USA TODAY about my struggle with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) over the last 6 years. The response to the article marked me deeply. People from all over the world wrote in describing the pain of living with the illness. Many talked of decades unable to work or even to participate in normal life.

Patients feel a constant, unrelenting exhaustion that is unrelieved by sleep, rest, or exercise. Because there is no treatment, they are often disabled.

I started to feel a moral calling for an in-depth creative and journalistic investigation into the roots of this illness; it was a calling to give these unheard voices a forum to speak to a world that has neglected them for far too long. I firmly believe that the first step to improving these lives is for greater global awareness of ME/CFS. Only then can we receive more research research funding and remove the sad stigma that often prevents a frank international conversation beginning at all. This film is the best way of doing that.




I started to feel a moral calling for an in-depth creative and journalistic investigation into the roots of this illness; it was a calling to give these unheard voices a forum to speak to a world that has neglected them for far too long. I firmly believe that the first step to improving these lives is for greater global awareness of ME/CFS. Only then can we receive more research research funding and remove the sad stigma that often prevents a frank international conversation beginning at all. This film is the best way of doing that.

ME/CFS is a devastating illness that the CDC now estimates affects well over a million Americans and more than 20 million people worldwide. ME/CFS is a illness with no cure; it also has no single known cause. It is a complex, multi-system disorder that, although fairly widespread, remains extremely difficult to diagnose and treat. Many, many patients fall through the cracks in the medical system and the social safety net, lose family support, and essentially disappear from society altogether. According to a 2008 study, ME/CFS causes at least a $20 billion cost on the U.S. economy alone through lost wages, healthcare spending, and lost productivity. Yet, according to recent numbers, the National Institutes of Health allocates just $6 million annually to research. This is just a tiny fraction of the funding given to illnesses of similar severity.

In telling the story of ME/CFS with this film we are essentially telling the story of the future of medicine itself. And that is truly a message that all of society can gladly get behind. We plan to travel through 10 cities across North America interviewing activists, patients, researchers, and doctors. We'll produce a feature-length film documentary for release on Netflix, Hulu, iTunes, and Amazon Video on Demand. Yet even more than that, we plan to equip people in towns and cities across the world to stage screenings of the film in movie theaters, schools, hospitals, churches, and community organizations. It's a tragic fact of this illness that most patients are far too ill to protest in the streets in order to get society to hear our voices. However, we can tell this story through a documentary film, widely distributed through grassroots organizing. We can tell the story, together, and help build bridges between communities of faith, politics, science, and the arts. True change will happen person by person, one community at a time.

Nicole and I could never do this project on our own. This is a community project. It requires not only funding from individuals and organizations but also an army of people across the world who are on fire about this film and its message, who want to tell anyone and everyone about it. We'll make the documentary. We'll distribute it on Netflix, Hulu, and iTunes. But we'll need each and every one of you to help make its message stick.

We've been reaching out to prominent researchers, activists, and scholars in the ME/CFS community and we've been excited about the response so far. But more importantly, we're delighted about the surprisingly strong response from all the "ME/CFS agnostics" with whom we've been talking. People with backgrounds in law, politics, science, faith, and the arts are moved by the struggle of people with ME/CFS and see this project just as we do. It is nothing less than a struggle for social justice. Come join us!

UK ME/CFS Biobank project awarded £1 million grant

Press Release: LSHTM Communications Team, June 28, 2013

A pioneering biobank project aimed at the study of Myalgic Encephalomyelitis (ME) / chronic fatigue syndrome (CFS) has been awarded a grant totalling £1,029,411 ($1,588,225) over three years by the US National Institutes of Health (NIH).

A biobank is a large collection of biological samples including tissues such as blood, which provides a valuable database for scientific research. Patients with an illness, as well as healthy people (controls), volunteer their tissues for inclusion, and each sample can be linked with detailed clinical information about the donor.

The UK ME/CFS Biobank was launched in 2011. It is the only one in the UK and the first in Europe aimed at the study of the illness. The project is led by the London School of Hygiene & Tropical Medicine and is currently funded by the ME Association, Action for ME, ME Research UK and a private donor.

Samples for the ME/CFS Biobank are obtained via NHS primary care networks and other sources, and are then processed and securely stored at the University College London/Royal Free Hospital Biobank.

During phase one of the project, researchers successfully banked samples from over 100 clinically assessed ME/CFS patients and controls, along with key clinical information about the donors, which has been anonymised to maintain patient confidentiality.

The grant from the NIH will enable important research on the immunology and genetics of ME/CFS, which may lead to the discovery of much needed disease biomarkers. It will also help to expand the Biobank to store samples from over 500 participants, including almost 300 patients and over 200 controls (comprising healthy controls and people with multiple sclerosis), which will be made available to medical researchers internationally.

Dr Eliana Lacerda from the London School of Hygiene & Tropical Medicine, one of the lead researchers on the project, said: “At least one in every 500 adults in the UK is affected by ME/CFS at any one time, as well as a smaller but significant proportion of children. The NIH grant provides a huge boost to the Biobank, which will enable more research into the causes of ME/CFS and ultimately help those affected.”

Erinna Bowman, one of the project researchers, said: “A key component of our project is its longitudinal design, which includes participant follow-ups over an extended period of time. This longitudinal aspect makes the Biobank an even more valuable resource and presents new opportunities for scientific discovery in the years to come.”

The London School of Hygiene & Tropical Medicine is home to a dedicated research group working on research into ME/CFS.

 

Want to Be a Star? Open Call for Documentary on ME/CFS

Jennifer Brea

This seems to be the year for making films about ME. Ryan Prior's film project, Blue Ribbon, is already under way. Now Harvard student Jennifer Brea is throwing her hat into the ring with her documentary about severe ME/CFS. If you live in the Northeast, this is your chance to tell your story.

From Jennifer Brea

I am making a documentary about Myalgic Encephalomyelitis and Chronic Fatigue Syndrome, and am reaching out to people living with these and related illnesses in search of subjects for the film. This project is inspired by my own experiences with moderate (sometimes severe) ME.

We are looking for people living in all regions of the U.S. and internationally. In the short-term, we are especially interested in patients based in the northeast, from D.C. to Boston. We hope to represent the diversity of people with this illness in terms of race, region, gender, ethnicity, social class, severity of illness, approach to treatment, age, and length of time sick.

As we aim to make a film about interesting people who happen to have ME/CFS, rather than a film where ME/CFS is the main character, we care just as much about you as we care about your illness.

What did you do, love, or care about before you got sick? What has your illness stolen? What has it given? How have you come (or not) to accept your new body? What challenges (health or otherwise) are you currently grappling with? How have you found a way to continue doing, loving, caring? How has ME/CFS been a teacher?

We are also interested in how ME/CFS affects the people around us: our parents, partners, children, friends, caregivers. If you are in that category, or if you have lost a loved one to ME/CFS, we’d like to hear from you.

Our goals are to tell a good story, with images that are beautifully and professionally shot; increase empathy; and, especially for those of us who are home and bed-bound, make us visible again.

If you think you might be interested in sharing your story, please email info@canaryinacoalminefilm.com with the subject “Submission” and tell us a bit about yourself.

Thank you in advance for your support!

Jennifer Brea

Website: http://www.canaryinacoalminefilm.com/
Twitter: @canaryfilm

Love and Fatigue in America: An honest, insightful and beautifully written story

Last March, I had the pleasure of hearing Roger King read from his new book at the Meekins Library in Williamsburg, Mass.  I was impressed by his quiet eloquence, and by the way he managed to convey the truth of what it is like to have ME/CFS without falling into pathos.  For those of us who have the illness, it is a tremendous relief to hear the thoughts and feelings we have all shared expressed with such clarity. Roger King has done a great service to the ME/CFS community in writing this book. I highly recommend it to everyone who has ME/CFS or knows someone with the illness.

You can purchase Love and Fatigue in America on Amazon and Barnes & Noble.  Read more about Roger King here.

Love and Fatigue in America

Roger King’s intimate account of falling ill with the disease known as chronic fatigue syndrome – CFS in the US, myalgic encephalomyelitis (ME) elsewhere – is a rarity. One would expect a memoir documenting a horrific illness to evoke pity. Yet, King’s observations, both of himself and of the country in which he finds himself marooned, are so keen, and so humorous, that it is difficult to feel anything other than admiration. What makes this book stand out among other memoirs is King’s unflinching, yet completely unself-serving honesty. King is not out to shock his audience, or to make them feel his pain. He is merely telling the truth.

As is the case with many immigrants, King, a British citizen, moves to the U.S. in order to start a new life. He had worked for years as a socio-economist in international development, traveling widely throughout Asia and Africa at the behest of the UN. But a fruitless love affair, as well as becoming the unwitting victim of a police conspiracy, provides the impetus for making a fresh start. King’s literary background, as well as his world experience, makes him an excellent candidate for a post in an English department. So, he accepts a position teaching creative writing, literature and screenwriting at “Inland University” (Eastern Washington University), deep in the great American Northwest. With a new novel about to be published, a new life in academia, and the possibility of new love on the horizon, it appears as if King’s wish has come true.

Within a year, King’s dream of starting a new life turns into a nightmare. After recovering from a nasty flu, King goes to a gym to work himself back into health. This is where his world slips sideways. A sudden bout of dizziness, accompanied by profound weakness, forces him to the floor, where King gamely tries to pretend as if he is just dehydrated. But having worked in Africa, King is no stranger to the effects of dehydration. He knows this is something else. 

“The pressing weight is enormous, too much for my muscles, which have themselves turned into a dead weight. After receiving an urgent petition from the neck, I let my head drop. My heart has gone deep. It’s beating down there, but very slowly. There’s nothing to do but wait, I tell myself.”

So begins the saga of ME/CFS: a long string of ineffectual doctors (whom King identifies with roman numerals and by nickname: “Grumpy,” “Happy,” “Thumper”), a longer string of useless medications, a string of friends who offer support but don’t really understand what is wrong, and finally, a very long string of states, as King drives from California to Massachusetts looking for a home, looking for love, and trying to outrun his disease.

While the topic of this book is illness – what we think and do when we lose our health, how we adjust, or don’t – the theme is love. In spite of a body that does not let him function, King’s desire for love is unimpeded by his complete inability to seek it, or do anything with it once he has found it. Against all odds, he finds love after all. Mary, a beautiful, accomplished paleontologist, befriends him, and eventually falls in love with him. King now has his heart’s desire … but, as the saying goes, we should be careful of what we wish for.

Ultimately, after love that is simultaneously found and lost, and travels that take him from one coast to the other, King comes to terms with the realities of an incurable illness, achieving an awareness that goes beyond anything we might expect to experience in our short lives. This is the journey’s end.

“I am, this illness has proved, not divisible within myself, not separable from without. My borders are permeable, the border patrol flawed and corruptible. The new understanding is that my self is not a knot of self-regard located in my mind, but some large and labile thing existing beyond my full control in a continuum of brain, body, other living things, and all substance beyond. In short, the nature of CFS is an object lesson in oneness. Which is an object lesson in love. You are lost, yet you are found.”

All of us, whether we have ME/CFS or any other affliction of the body or heart, are lost, yet found. In the beauty of his words, and in his commitment to the truth, King has found us.

Originally posted on Blogcritics.

CFS/ME Organizations and Advocates Call for an Immediate Investigation of Threats Made Against CFSAC Committee Members

Eileen Holderman, "I have been intimidated."

On June 12, 2013, twelve ME/CFS patient organizations and 23 patient advocates signed a letter calling for an immediate investigation into threats made against three members of the CFS Advisory Committee (CFSAC). The letter was written in response to events that occurred on the second day of of the CFSAC meeting (May 23rd). During the meeting, patient advocate Eileen Holderman, after repeated attempts on the part of the chair to silence her, stated that she was "afraid." Holderman went on to say, "I have been intimidated, and I’m afraid to speak out but I am going to. I know that there are two other committee members who have also gotten calls." A short time later, researcher Mary Ann Fletcher stated that she had been threatened with eviction from the Committee for expressing her views.

Federal Advisory Committees were established to help the executive branch formulate federal policy. The CFSAC was created to advise the Secretary of Health on issues such as healthcare, the science and definition of CFS, and other issues related to the disease. Over the last decade, CFSAC has made more than 70 recommendations to the Secretary on a number of issues, including research funding, provider education, case definition, and a name change. According to Holderman, the CFSAC has acted on none of them.

Although the CFSAC operates at the behest of the federal government, it has come under fire for violations of the Federal Advisory Committee Act, including acting in secrecy to reduce or reword recommendations made by committee members. (Read about the violations in Jennie Spotila's article HERE.) 

You can read the full text of the letter below. A transcript of the portion of the meeting including Holderman's allegations can be read HERE. You can see video of this portion of the meeting HERE. (Start at 42:12)

June 12, 2013

By postal and electronic mail
William B. Schultz
General Counsel Department of Health and Human Services
200 Independence Avenue SW Room 713-F Washington, DC 20201
William.Schultz@hhs.gov

Dear Mr. Schultz,

On behalf of the undersigned organizations and individuals, I am writing to request your immediate investigation into alleged intimidation of three voting members of the Chronic Fatigue Syndrome Advisory Committee (CFSAC), a Department of Health and Human Services advisory committee housed within the Offrce on Women’s Health. As organizations and advocates serving patients with Chronic Fatigue Syndrome (CFS), we have a longstanding interest in federal policy regarding CFS.

At its most recent public meeting on May 23,2013, voting member Eileen Holderman stated that Dr. Nancy Lee, the Committee’s Designated Federal Officer (DFO), had intimidated her and two others. Voting member Dr. Mary Ann Fletcher stated that she had been threatened with eviction from the Committee for expressing her views. The third member subjected to the alleged intimidation was not identified. We have enclosed a transcript of portion of the meeting during which these allegations were made, and highlighted the allegations on pages 3 and 4.

The independence of the CFSAC and the balance of views among the membership are essential to its advisory role. Threats or intimidation of voting members for expressing their views, particularly by the DFO, would materially impair the CFSAC’s ability to formulate recommendations to the Secretary. Despite the seriousness of these allegations, neither Dr. Lee nor Chairman Dr. Gailen Marshall made any public comment, nor did they promise to look into the allegations or take corrective action.

Therefore, we must ask you to investigate these allegations immediately, and establish whether any voting member of the CFSAC has been intimidated or threatened for expressing their opinions.

Thank you for your prompt attention to this matter.

Sincerely,

Mary Dimmock, for the undersigned organizations and individuals

Patient Organizations
Chronic Fatigue Syndrome, Fibromyalgia and Chemical Sensitivity Coalition of Chicago
CFS/Fibromyalgia Organizations of Georgia, Inc.
MAME (Mothers Against Myalgic Encephalomyelitis)
Massachusetts CFIDS/ME & FM Association
PANDORA (a.k.a. CFS Solutions of West Michigan)
Phoenix Rising
The Fibromyalgia-ME/CFS Support Center, Inc.
Race to Solve CFS
Rocky Mountain CFS/ME and FM Association
Speak Up About ME
The Vermont CFIDS Association, Inc.
Wisconsin ME/CFS Association, Inc. 

Individual Advocates
Rik Carlson, Lori Chapo-Kroger,  R.N., Lily Chu, M.D., Mary Dimmock, Pat Fero, M.E.P.D., Kenneth J. Friedman, Ph.D., Joan Grobstein, M.D., Jean Harrison, Suzan Jackson, Michele Krisko, Denise Lopez-Majano, Billie Moore, Mike Munoz, Matina Nicolson, Donna Pearson, Meghan Shannon, M.S., M.F.T, Nancy Smith, Rivka Solomon, Jennifer  Spotila, J.D., Tamara Staples, Tina Tidmore, Erica Verillo, Charlotte von Salis, J.D.

Originally posted on ProHealth.