Advocacy – Page 3 – American ME and CFS Society

Remembering The Forgotten: How AMMES Combats Isolation And Neglect

May is the month for acknowledging the Millions Missing – the millions of ME/CFS patients who, through the years, have suffered from poor medical care, insufficient research into the cause and mechanisms of the disease, and a paucity of clinical trials to discover effective treatment. May 12, Florence Nightingale’s birthday, is the day we recognize the toll ME/CFS takes on those who have the disease and on their families, who suffer alongside them.

Among the millions missing is a group that is often overlooked. These are the people for whom isolation does not simply mean the loss of friends and the inability to attend weddings, family gatherings, and social events. Isolation, for this group, means rejection, not just by society at large, but by the people closest to them. It means neglect on a scale that is incomprehensible to patients who have loving parents, siblings, and partners.

These “missing” people do not participate in advocacy actions – on any level. They are not to be found on forums, or social media. Their lives are lived silently, unseen by the ME/CFS community at large. These are the impoverished ill, people who have been abandoned by friends and family. Nobody will put their photos on a billboard, or write a news article about them, because these severely ill patients have not one living soul to defend them.

In May, the ME/CFS community remembers patients who have been neglected by the medical establishment as well as the government agencies responsible for their care. This month, the American ME and CFS Society (AMMES) remembers the patients who have been forgotten by everyone.

“Get me out of here!”

The first patient who came to AMMES for help was a black woman in her early thirties. She was pregnant at the time and needed help paying her security deposit. The AMMES financial crisis fund paid her landlord for the deposit and covered an outstanding water bill as well. Not too long afterwards, we received a frantic phone call from her: “Please, get me out of here!”

Our client had been the victim of abuse by a former boyfriend. In spite of a restraining order, her ex had broken into her house and assaulted her. She called her social worker, who phoned the police. When the police arrived they did not take a statement and, in spite of visible bruises on her face, they handcuffed our client and threw her into the back of a police car. They took her to a hospital, where she was placed in a psych ward and given antipsychotics. When I asked our client how it transpired that the police had taken her to a psych ward, she said it was at the request of her social worker. Our client had been diagnosed with CFS. She had no psychiatric diagnoses, and had never been evaluated by a psychiatrist.

Once we discovered what had happened, AMMES immediately wrote a letter to the hospital explaining that our client’s diagnosis was for a neuroimmune disease that had been well established as a physiological, not psychological, illness. We sent copies of the letter to her caregiver, who in turn gave them to the court, as well as to a team of social workers now on her case. A few days later our client was released.

This severely ill woman is black, poor, and female, and she had a diagnosis of CFS, which nobody in her circle of doctors and social workers understood. As a consequence, the full weight of societal prejudice fell on her. She is one of the forgotten.

“My family thinks I am making it up”

With the exception of the first applicant to the AMMES financial crisis fund, who had children, all of our applicants have lived alone. This does not necessarily mean that they do not have living parents or siblings. All of them have had at least some living family members, but their families have rejected them.

Those who have loving relatives find it hard to imagine how families can reject someone who is sick. Yet they do, mostly because they do not believe them. In the words of one applicant: “Over the last 11 years I have been treated like a lazy, worthless, liar.” Nobody believed that she was ill.

A number of applicants have reported similar experiences with family members who do not believe they are really sick. Some have had family members who have ostracized them or who – despite having comfortable incomes – refused to help, or even make a loan.

Other applicants have been treated with outright cruelty: “My brother told me to just kill myself, but before he did he told me that our mother’s condo that I am living in should be his not mine. So I really don’t have family that cares, or understands, or is safe for me to seek help from.”

In some cases, a state of homelessness has been caused by family rejection.

“My family, whose therapist said, “no one sleeps that much, unless they are a drug addict,” kicked me out last year. They have always chosen to have “willful ignorance”, so they did not feel any need to help. I don’t know which is worse anymore, the disease itself and how it hurts me or the hatred and selfish disregard for my life from other people.”

The truth is that no matter how much pain the illness causes, there is no pain that compares to being rejected by people who are supposed to love you. When doctors dismiss patients, or social services deny care, it is infuriating, frustrating, and humiliating. But when your own family does not care, or treats you worse than strangers do, it is heartbreaking.

“Your existence gives me hope in the future”

For the past year, AMMES has been stepping up to help severely ill patients with little to no income pay their bills. Most of our resources have gone to pay rent for patients on the verge of homelessness. We have also paid utility bills, medical copays, transportation costs, food expenses, medical bills and other necessities. We have even paid for a bed for one patient who had been sleeping on her couch. But the most valuable commodity we have to offer is love.

To say we love our applicants may sound like a Hallmark card, but when you demonstrate that you care, you are showing love. When you listen to patients who for years have suffered disappointment, rejection, and denial from all of the people surrounding them, you show them love. When you do your best to alleviate the isolation, humiliation, and hopelessness that these patients have had to endure, you show them love.

This May, AMMES would like you to show our clients some love as well. Our funds are depleted, which means we cannot take on new clients who are in danger of eviction. Nor can we take care of the clients we already have. We cannot bear to see our people evicted or going hungry because of lack of money. We can’t turn our backs on them.

AMMES’ May Fundraiser

Please DONATE to our cause! We launched our spring fundraiser on May 1. We need $15,000 to see us through until the fall, but any amount will keep us going.

Our fundraiser is HERE. Please spread the word everywhere you can!

You can also donate directly to AMMES HERE.

Our overhead is very low, so all donations will go directly into the financial crisis fund. AMMES is a 501(c)(3) nonprofit, so your donation is tax deductible.

Read more about what we do!

HOMELESS: How AMMES Is Keeping People With ME/CFS In Their Homes

Food, Clothing, And Shelter: Providing The Basics To People With ME/CFS

For my birthday, I would like…

It just so happens that my birthday falls on May 10th ! In addition to a pony, I would very much like to have some board members join AMMES. (A social worker would be almost as nice as a pony.) I am looking for people who are healthy, but who have a family member or friend with ME/CFS. You can find out more about Board positions HERE.

There is nothing more satisfying than the work we do! Join us!

Continue reading “Remembering The Forgotten: How AMMES Combats Isolation And Neglect” →

FOOD, CLOTHING, AND SHELTER: DELIVERING THE BASICS TO PEOPLE WITH ME/CFS

By Erica Verrillo

Erica Verrillo is President of the American ME and CFS Society (AMMES)

When I was a child, my mother taught me the three basics of human survival: Food, clothing, and shelter. These, she said, are essential for our existence. At the time, I understood food to be essential, and possibly shelter, but I did not see the necessity for clothing. (I do now.)

Getting medical help is a priority for people who are ill. This makes perfect sense in the context of a debilitating disease like myalgic encephalomyelitis, aka chronic fatigue syndrome (ME/CFS). Everyone with a chronic illness wants to recover. But people who are so impoverished that they can’t afford food, clothing, and shelter face a struggle for survival on a daily basis. That struggle can overshadow all others – including the search for physicians and treatments – while patients scramble for their basic needs. The effort to stay alive is all-encompassing.

How will these patients get food to eat, pay their rent, and buy such bare essentials as shoes?

Who will help them when their options run out?

Continue reading “FOOD, CLOTHING, AND SHELTER: DELIVERING THE BASICS TO PEOPLE WITH ME/CFS” →

WE’RE PROVIDING HELP WHERE IT’S MOST NEEDED

“Through the financial help from AMMES I’ve been given the invaluable gift of time. Now that I’m not constantly experiencing fear and anxiety about being able to maintain a roof over my head, keep the lights on, or have any food to eat, I have some time to put any energy I do have towards healing. Thank you Erica, AMMES, and all its generous donors. Your gifts have enabled me to begin changing my mental outlook from despair to one of hope.” R in Colorado

Last March, the American Myalgic Encephalomyelitis and Chronic Fatigue Syndrome Society (AMMES), a national non-profit, began fundraising for an ambitious, one-of-a-kind, project. We wanted to help severely ill patients who find themselves unable to pay their bills. The predicament of these patients has been known for a long time. Dr. Bell was reputed to have remarked that many of the people living in cars were CFS patients. The harsh reality is that for patients who have lost their income and have no other means of support, losing housing, being unable to pay for food, clothing, and medical expenses is a perpetual threat. It creates a situation in which patients become increasingly ill from the strain of trying to survive financially while struggling with a devastating illness.

Over the past six months, AMMES has given away over $25,000 to help these patients. The fund has paid for rent, clothing, food, utility bills, medical bills, phone bills, home care, and other basic necessities. The fund purchased a bed for a patient who had been sleeping on a couch, a co-pay for a wheelchair, and shoes for a patient who had only flip-flops after an abusive ex had destroyed all her clothing. By far the most common request is for rent. Several applicants have been on the verge of eviction. Nobody in this country should have to face living in a car, or on the street, or in a homeless shelter, let alone someone with a serious disease.

Who we help

Most of the people who apply for the program are severely ill, live alone, and have no financial support from family and friends. Some receive disability and food stamps, but rent and other necessities are seldom covered. In all cases, the applicants have been ill for many years, sometimes decades, with very little recognition.

When I asked one patient if she had experienced problems getting help, she replied “You are the first organization to help me, and you are the first to believe me.” This woman had been ill for over two decades. Her story has been repeated by everyone who has applied for the fund – years of getting little to no support, years of disbelief and hopelessness. This is the highly vulnerable population that AMMES’ financial crisis fund serves.

How it works

Applying for the financial crisis fund is fairly straightforward. Applicants fill out an application form with basic information, proof of financial necessity (this can be any form of government assistance, or an application for assistance or disability, even if it is denied), diagnosis of CFS, or something close to it, and documentation of what the grant is supposed to be for, so we know how much money to send. Once the application is received, the turnaround is one day.

Most people who have received funds have been astonished at the speed with which they receive support. As one patient explained, “Often, it would take days and sometimes a couple of weeks to complete all the paperwork and be told whether I qualified for assistance or not. During this time, I had no energy or time left to do anything else. Afterwards, I was so exhausted, all I could do was sleep. Many required that I provide proof of full-time work, which I could not do. All of the above did not understand the severity of the condition, or the devastating impact it was having in my life.”

AMMES does not make people jump through hoops. On the contrary, we get the funds to patients as soon as possible. We also we help patients fill out the application form if necessary. Some patients have significant cognitive problems, and may leave out important information. At times a single phone call is all that is necessary to verify information that is incomplete or ambiguous.

Find out more about the financial crisis fund here: https://ammes.org/ammes-financial-crisis-fund/

What AMMES needs

We want to help more people! Please make donations to our financial crisis fund! To keep it going for next year, we need $25,000. This will enable us to double the number of people we can help. We have not yet had to turn anyone away, and we hope that with enough contributions, we can help everyone who comes our way in 2019.

Something we also have great need of is a case worker. The crisis fund is good for emergencies, but what happens to these patients in the long-run? After this month’s rent is paid, what then? Someone with experience as a social worker or case worker could help patients meet long-term financial requirements. A case worker could also guide patients through the process of applying for government assistance. This can be a daunting task for people with cognitive problems and very little energy.

Please help! You can donate to AMMES here: https://ammes.org/donate/

AMMES is a 501(c)(3) nonprofit. Donations are tax deductible.

Take Action! Demand Congress Create a Federal ME/CFS Advisory Committee

From Solve ME/CFS Initiative

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

The Chronic Fatigue Syndrome Advisory Committee was the only voice exclusively for the ME/CFS community in the federal government. We cannot allow the administration to silence people with ME/CFS, their loved ones, scientists, and advocates.

Join Solve ME/CFS Initiative in calling on congress to establish a new ME/CFS Federal Advisory Committee – through congressional action – to ensure that our community will be heard!

Please click HERE to add your name.

Netflix and Hill: The True Story Behind “Afflicted”

Reprinted with the kind permission of Jamison Hill.

By Jamison Hill

On August 10th Netflix released Afflicted, a seven-episode series in which I appear with six other chronically ill patients. Though I had high hopes for the series, and some parts were accurate, it has ultimately caused damage to the chronic illness community, portraying many of the participants as hypochondriacs and the illnesses they face as psychosomatic rather than their true physical nature.

I have debated about writing this blog post because in being honest about my experiences with Afflicted, I felt that might diminish my story and the stories of my fellow participants. I also didn’t want to diminish the work of some truly talented and genuine people who worked on the series and just happened to land a bad gig. But above all else I feel like this is an unjust outcome that needs to be brought to the public’s attention.

I’m not victimizing myself, or anyone else, but I am incredibly disappointed with the scope and slant of the overall series.

Nevertheless, I am still proud of my part in the series. There were some truly memorable moments to my story, glimpses into my life that I’m so grateful to have documented and to be able to revisit in the future. When filming commenced I had been bedridden for two years and was mostly unable to speak but for a few short, whispered words each day. The year and a half prior to that I had been too sick to chew food and had to survive on IV fluids and liquefied meals.

When I was approached about being in Afflicted, I had already written several essays about my fight for survival, but having it told visually was appealing to me. However, this meant giving control of the narrative to people who, unbeknownst to me at the time, had a dishonest agenda. That’s why, perhaps out of sheer instinct, I worked extremely hard to make sure my story was told in the best possible light. Now, after watching the finished product, I feel it very easily could have gone the other way.

In the days following the show’s release I’ve wondered why my story turned out relatively well when others did not. Perhaps I was the most debilitated participant and because I usually couldn’t speak loud enough for the microphones to pick up my voice, the producers decided to take it easy on me. It could also have been because, while on camera, I was fully aware that although the filmmakers said they had good intentions, people with ulterior motives can seem altruistic if they say the right thing in the right situation.

Continue reading “Netflix and Hill: The True Story Behind “Afflicted”” →

Are ME/CFS Patient Organizations “Militant”?

Abstract:

Myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS) is a contested illness category. This paper investigates the common claim that patients with ME/CFS—and by extension, ME/CFS patient organizations (POs)—exhibit “militant” social and political tendencies. The paper opens with a history of the protracted scientific disagreement over ME/CFS. We observe that ME/CFS POs, medical doctors, and medical researchers exhibit clear differences in opinion over how to conceptualize this illness.

However, we identify a common trope in the discourse over ME/CFS: the claim of “militant” patient activism. Scrutinizing this charge, we find no compelling evidence that the vast majority of patients with ME/CFS, or the POs representing them, have adopted any such militant political policies or behaviours. Instead, we observe key strategic similarities between ME/CFS POs in the United Kingdom and the AIDs activist organizations of the mid-1980s in the United States which sought to engage scientists using the platform of public activism and via scientific publications.

Finally, we explore the contours of disagreement between POs and the medical community by drawing on the concept of epistemic injustice. We find that widespread negative stereotyping of patients and the marginalization and exclusion of patient voices by medical authorities provides a better explanation for expressions of frustration among patients with ME/CFS.

Source: Blease, C. & Geraghty, K.J. Are ME/CFS Patient Organizations “Militant”? Bioethical Inquiry (2018). https://doi.org/10.1007/s11673-018-9866-5

M.E. highlighted at the 71st World Health Assembly

Press Release: Action for ME, May 23, 2018

The need for accelerated biomedical research, and training and education for health professionals has been highlighted at the first-ever World Health Assembly side event focused on M.E.

Taking place last night in Geneva and held by the International Alliance for M.E. (IAFME), led by Action for M.E. and hosted by the Union for International Cancer Control (UICC), the aim of the event was to raise awareness and understanding of M.E. among international policy-makers, and to build connections with other public health organisations and individuals who support the IAFME’s goal of achieving a global public health response to M.E.

Those attending were visibly shocked by a short screening from Jen Brea’s award-winning documentary Unrest, showing the devastating impact of M.E. on people across the world. Afterwards, panel members Sonya Chowdhury, Prof Chris Ponting, Greg Perry and M.E. patient Steven offered their view on the challenges facing people affected by M.E., and those that support them, and the steps that must be taken to address these.

“It is not OK that people with M.E. are being told there is nothing wrong with them, whether that’s one person, 100 people, or 35 million people – which is the latest estimated number of people with M.E., using data from a new research due to be published,” said Sonya Chowdhury, Chief Executive, Action for M.E. “The universal health coverage championed by the World Health Organisation must include coverage for every single person. They must not turn their backs on one person with M.E., let alone 35 million.”

Steven, who lives on the French-Swiss border, described the difficulties he faced in getting a diagnosis, and we also heard, via video, from Dr Nina Muirhead, a UK surgeon living with M.E. “It is true of most hospital doctors that they do not know about, or understand, M.E./CFS,” she said. “This was the case for me before I got ill in 2016.” You can watch Nina’s video on the IAFME Facebook page.

Turning to the urgent need for accelerated biomedical research, Prof Chris Ponting, University of Edinburgh, suggested four key areas of focus: a large-scale genome-wide association study that will help us understand the genetics of M.E.; cheap, longitudinal, population-scale immune system surveys; molecular and physiological measurements of people with M.E. following exercise; and taking action to ensure that case-control studies use more appropriate control cohorts with individuals with sedentary lives. He was also emphatic about the need to bring more new and established scientists into the field.

Our final speaker was Greg Perry, Assistant Director General, International Federation of Pharmaceutical Manufacturers and Associations. “I am struck by the fact that M.E. has been around for a long time, but there has still not been any real progress ,” he said. “I do think that the World Health Organisation is a hub of innovate thinking, so there are great opportunities here to focus on this neglected disease.”

During a lively discussion, moderated by Alexandra Heumber, Head of International Advocacy and Coordinator of the IAFME, based in Geneva, the panel heard from people directly affected by M.E., and from those working within global health policy. They reinforced the need for global leadership from the World Health Organisation in setting-up a framework, at global level, that guides and supports policy-makers and health professionals whose decisions impact the lives of those with M.E.

We are hugely grateful to Dr Cary Adams, Chief Executive, UICC, for hosting this event, and for everyone who contributed, particularly those affected by M.E.

May 12 Letter to the World Health Organization

Note: Following is a letter sent to the WHO by The International Alliance for M.E. to increase international recognition of and funding for ME/CFS. You can read a PDF file of the letter HERE.

Dr Tedros Adhanom Ghebreyesus
World Health Organisation
Avenue Appia 20
1202 Geneva

11 May 2018
CC Dr Svetlana Akselrod, Assistant Director General for Non-Communicable Diseases and Mental Health

Dear Dr Tedros

Urgent action to address M.E. globally: a neglected NCD

Tomorrow, on 12th May, people across the globe will come together in public spaces, at government buildings, online and in their homes to ask: ‘Can you see M.E. now?’ You can see their films, photographs and stories, shared for this global M.E. Awareness Day event, at http://www.facebook.com/MEActNet and www.twitter.com/IAforME

M.E. (Myalgic Encephalomyelitis) is a complex, disabling, chronic, fluctuating, neurological condition of unknown aetiology. It is sometimes diagnosed as Chronic Fatigue Syndrome or CFS/M.E. It is a disease which affects 20,000,000 individuals of all ages and from all
ethnic groups – and the families around them – causing significant personal, social and economic hardship.

The US government’s landmark report, Beyond M.E./CFS: redefining an illness, made it clear that M.E. is ‘a serious, chronic, complex, and systemic disease that frequently and dramatically limits the activities of affected patients. In its most severe form, this disease can consume the lives of those whom it afflicts.’1

M.E. is associated with neurological, immunological and energy-metabolism impairment, and is characterised by significant disability and a widespread intolerance to even small amounts of
mental and physical exertion. Other symptoms include sleep dysfunction, dizziness, widespread pain, cognitive dysfunction, and sensitivity to light and sound. We know that:

* one in four people with M.E. are so severely affected that they are unable to leave their beds or homes, sometimes for many years, too ill to bear even the touch of a loved one
* M.E. has the lowest health-related quality-of-life score when compared to cancer, diabetes, lupus, stroke, heart disease and chronic renal failure2
* people with M.E. are at an increased risk of cancer, heart disease, and suicide3
* in children and young people, the disease is the most common cause
of long-term school absence.4

Despite this suffering and disability, and the urgent need to find effective treatments, only 0.02% of international mainstream research funding has been directed towards M.E.5 Moreover, the condition is frequently undiagnosed, misdiagnosed and/or mistreated by physicians and often not recognised by national treatment and health insurance systems.

The International Alliance for M.E.’s awareness event on 12th May in Geneva, just one of thousands of Millions Missing6 events across the world, is part of our work to highlight the challenges faced by people with M.E.

We would greatly appreciate it if you could make time in your busy schedule to meet representatives from the International Alliance for M.E., a new collaboration uniting M.E. organisations in the US, Australia, Spain, Japan, South Africa and the UK. We would like to highlight the serious and significant impact of this often unrecognised condition, and explain why we are seeking urgent national and international action to increase research on the condition and ease the suffering of patients around the world.

We hope that, with the support of Members States and WHO, we will:

1. Recognise M.E. as a ‘serious, chronic, complex, and multisystem disease that frequently and dramatically limits the activities of affected patients’7 and adopt measures to provide a global and co-ordinated public health response to it.
2. Put in place transparency and a consultation process with M.E. organisations and patients on decisions related to M.E.
3. Support accelerated biomedical research to develop better diagnostic methods and treatments for M.E.
4. Ensure appropriate medical education for professionals working with M.E. patients.

As advocates, organisations, patients and carers, the International Alliance for M.E. is determined to see the condition properly recognised and treated, working with scientists and researchers across the world. We very much hope for your support for people living with M.E.

In the hope of your favorable reply to our invitation to meet,

Yours sincerely

The International Alliance for M.E.
ACAF – Associacio Catalana d’Afectades i Afectats de Fibromialgia i d’altres Sindromes de Sensibilitzacio Central, Spain
Action for M.E., United Kingdom
The American ME and CFS Society, United States
Emerge Australia, Australia
Forward ME, United Kingdom
Japan ME Association, Japan
ME CFS Foundation South Africa, South Africa
Plataforma Familiars Fm-SFC-SQM, Spain
Solve ME/CFS Initiative, United States

With support from
Association du Syndrome de Fatigue Chronique, France
Lost Voices Stiftung (Foundation), Germany
#MEAction, United Kingdom
ME/CFS Association Switzerland/Verein ME/CFS Schweiz, Switzerland
ME/FM Society of BC, Canada
ME Research UK, United Kingdom
Millions Missing Canada, Canada
Millions Missing France, France
National ME/FM Action Network, Canada
Open Medicine Foundation, United States
Welsh Association of ME & CFS Support (WAMES), United Kingdom

——–
1 Institute of Medicine (2015) Beyond M.E./CFS: redefining an illness
http://www.nationalacademies.org/hmd/Reports/2015/ME-CFS.aspx
2 Hvidberg et al (2015) The Health-Related Quality of Life for
Patients with ME/CFS. PLoS ONE
3 Dimmock at al (2016) Estimating the disease burden of ME/CFS in the
United States and its relation to
research funding. Journal of Medicine and Therapeutics
4 Dowsett and Colby (1997) Long-term sickness absence due to ME/CFS in
UK schools; an epidemiological
study with medical and educational implications. Journal of Chronic
Fatigue Syndrome
5 Chowdhury and Radford (2016) M.E./CFS research funding
http://www.actionforme.org.uk/uploads/pdfs/mecfs-research-funding-report-2016.pdf
6 https://millionsmissing.meaction.net
7 Institute of Medicine (2015) Beyond M.E./CFS: redefining an illness
http://www.nationalacademies.org/hmd/Reports/2015/ME-CFS.aspx

——–
(c) 2018 IAME

Markey Leads Resolution Recognizing ME/CFS

Press Release: Washington (May 15, 2018) – Senator Edward J. Markey (D-Mass.) was joined by Senators Chris Van Hollen (D-Md.), Angus S. King Jr. (I-Maine), and Susan Collins (R-Maine) in introducing a Senate resolution recognizing May 12 as International Awareness Day for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). ME/CFS is a chronic, debilitating condition without a known cause, diagnostic, treatment, or cure. It may affect up to 2.5 million Americans and is estimated to be four times more prevalent in women than in men. ME/CFS costs the economy up to $24 billion a year, due to medical expenses and loss of productivity.

“ME/CFS has been in the shadows for too long,” said Senator Markey. “Our resolution is just one step to help shine light on this condition and what we can collectively do to help improve the quality of life of those impacted. I am inspired by the commitment from individuals living with ME/CFS and their loved ones to change the trajectory of this disease, and am honored to help raise awareness of their efforts with Senators Van Hollen, King, and Collins with this resolution.”

Over the last several years, the National Institutes of Health (NIH) reorganized the Trans-NIH ME/CFS Working Group. Last year, the NIH awarded more than $7 million in grants to help establish Collaborative Research Centers and a Data Management Coordinating Center to enhance and coordinate research initiatives for ME/CFS throughout the NIH.

You can read the full resolution HERE.

Millions Missing Demonstrations – in Pictures

On May 12, 2018, Millions Missing demonstrations were held in over a dozen countries. Over 100 cities participated, bringing the plight of ME/CFS patients to the attention of media, public officials, and health organizations all over the world. The demands of Millions Missing are simple: Fund research, find a cure. Here is a small sampling of images from the May 12 protests. (You can find more photos HERE.)

UNITED STATES