The news of Dr. Montoya’s termination from his Stanford medical practice and center hit the ME/CFS community hard. The possible loss of even one practice is alarming, even to people who would never have the opportunity to visit that practice.
Maybe now is a good time to focus on a courageous and audacious effort to improve the care of ME/CFS patients in a country whose medical system is so steeped in ignorance that it provides virtually no help for ME/CFS.
An impossible task? This group says, “No!”
They are, in fact, committed to creating something that’s never, to my knowledge, been done before. They’re breaking the mold.
The continent is Africa, the country is South Africa and the organization is ME/CFS Foundation SA. ME/CFS Foundation SA is, of course, battling the same spectre of ignorance, stigma and neglect that affects us all – but magnified. They are the only ME/CFS organization they know of in the entire continent of Africa.
Countries in Africa have battled prejudice and the ghosts of colonialism for years. South Africa, of course, carries its own unique burdens. Years of apartheid resulted in South Africa having one of the highest rates of income inequality in the world. (In fact, in 2018 the World Bank rated South Africa as having the highest rate. The top five countries were all in Africa.)
One of only four countries in Africa considered to have an “upper-middle-income” economy by the World Bank, S. Africa boasts the most industrialized and diversified economy in Africa.
All is not well, though. Approximately 35% of the population is out of work, and the public health system, which is chronically underfunded and understaffed, serves the vast majority of the population. Only the wealthiest 20% of the population can afford to use the better private health system.
I asked Retha, the co-founder of ME/CFS Foundation SA, about her story. A professional with honors degrees in academia, she worked in business analysis and strategic planning in the petroleum, cement and construction industries before becoming ill.
With her husband, an engineer, out of work, she was the main breadwinner in the family. When her illness forced her to stop working, her family was ruined financially.
Like so many others, she calls ME/CFS a “jail sentence”. Instead of a cell with bars, she’s locked in her bed, her room, and her house by her illness. She considers herself 50-60% disabled.
She’s not completely in a jail cell, though – not at all. Instead, she’s reaching out – from her home – across the country and making a difference.
After starting a Facebook support group in 2012, she understood how dire the needs were in her new community – the South African ME/CFS community – for companionship, finances, medical help, and basic living needs. With an ignorant medical system making their lives all the harder, Retha was nevertheless struck by the resilience and toughness she’s encountered, the kindness that prevails, and the hope that endures.
I asked Retha why, with her poor health and limited financial resources, she co-founded the ME/CFS Foundation of South Africa in 2015? Surely it would have been easier not to.
It turned out she did that for the same reason Erica Verrillo started AMMES, that Jen Brea started MEAction, that Linda Tannenbaum started the Open Medicine Foundation, and Marc Iverson created the CFIDS Association of America (now Solve ME/CFS Initiative) way back in 1987. She felt that, “something had to be done”.
Taking action did unleash something in her. She found a new purpose in life – she would dedicate herself to helping others with this disease. Life got harder and easier at the same time. She’s got a big task ahead of her, but it’s an inspiring task. Life, even when ill, can be worth something.
Having ME anywhere is hard, but there are probably few places more challenging to have it than in Africa. You’d probably have to multiply the ignorance, stigma, lack of understanding and lack of opportunity present in the U.S. many times to get a sense of what it’s like to have this disease in South Africa. Even in the early 1980’s when I came down with ME/CFS in the U.S., the medical profession, at least in my experience, was probably more accepting.
When I asked Retha how many doctors in South Africa really knew anything about ME/CFS, the answer was very, very few. The vast majority of doctors, she said, either dismiss the illness entirely or believe it’s a psychiatric illness. Their prescription, if there is one, consists of telling the patient to exercise and talk with a psychiatrist or psychologist.
With the public health sector in bad shape, getting satisfactory treatment for ME requires seeing one of the few private practice doctors who know something about the disease, but the majority of ME/CFS patients can’t afford private health care. (After she became ill, Retha fell into this category.)
The most the public health system might be able to provide is prescription drugs for pain, sleep and depression.
Retha’s case is enlightening. Her financial situation makes it impossible to see a private doctor, but because her former private doctor described her chronic pain, sleep and depression as “illnesses”, she was referred by the state to the mental ward. There she sees a doctor, in this case a psychiatrist, every 6 months and gets the drugs he prescribes.
The four doctors she’s seen over the past two years, all psychiatrists, believe ME/CFS is a psychiatric illness. Every patient she knows who has stated they have ME/CFS was immediately referred to a psychiatrist and told they have a mental illness.
While it may not be easy for people with ME/CFS to get disability in the U.S. and other countries, at least it’s possible. Getting disability in South Africa is a near impossibility, and if it does by some miracle occur, provides peanuts. Retha reported:
There are also NO disability benefits from the government for ME/CFS. I know of only one woman who was successful – she is severely ill. It took her months to get the benefit – $121 per month or 95 UK sterling. It is absolutely nothing.
The ME/CFS Foundation of South Africa
The ME/CFS Foundation of South Africa has big tasks in front of it! It may be halfway around the world, but its objectives are very familiar.
Our vision is to transform the lives of all ME/CFS patients in South Africa (& the rest of Africa) by receiving appropriate health care and being treated with dignity.
Our mission – The ME/CFS Foundation South Africa is committed to improving the quality of life of all people affected by ME/CFS in South Africa and the rest of the continent by addressing the needs of sufferers, educating the public, medical students, health care practitioners, governments and advocating for their rights.
The ugly themes of Apartheid have no place in this organization: just the opposite. The organization states it’s committed to serve the “poor and needy persons with ME/CFS across all races, sexes and socio economic classes”.
Like AMMES in the U.S., it provides direct financial assistance – helping patients to see a knowledgeable doctor, helping them with travel, paying for the physician visit and then helping to pay for supplements and food – to people in need.
ME/CFS Foundation SA also provides counselling, raises awareness, educates the public and health care practitioners, advocates for ME/CFS patients’ rights, has a support line on Messenger and maintains a support group on Facebook. Reaching outside of South Africa, they sponsored Ghana so it could participate in #MillionsMissing 2018.
A Mother and Daughter from South Africa with ME/CFS
The needs in South Africa, Retha said, are enormous: so enormous that the ME/CFS Foundation SA has no other option than to grow.
Grow it intends to do, indeed. It’s taking on a task that no other organization I’m aware of has dared to try. ME/CFS Foundation SA has begun a drive to establish the first series of ME/CFS communal living/care facilities that I know of.
Their goal is to first rent (and later buy) a residential property where a few ME/CFS patients can live. Once they’ve been able to do that, they hope to roll the communal care/living concept out to other cities and provinces and grow them into ME/CFS care facilities, where trained health care providers can provide services to residents and outpatients.
They could use your support. (Depending on where you’re from, your dollar or pound or other form of currency could go quite a ways.) Support the ME/CFS Foundation SA here.
What I took away from Retha’s story is that we’re all fighting the same worldwide battle. Whether we’re in the U.S., the U.K., Lithuania, South Africa or Japan, we are all engaged in a worldwide effort to provide people with ME/CFS the dignity, respect, services, and ultimately the health they deserve.
Retha’s story made me get, for the first time, how important the work being done in the U.S., the U.K., Australia, etc. is. The South African doctors determined to diagnose Retha with a psychiatric illness didn’t get their ideas from a vacuum. They got them from the British-type medical system they were undoubtedly trained in and get their cues from. They got them from researchers and doctors who pushed the idea that ME/CFS is a behavioral disorder you can exercise your way out of.
What was done, though, can be undone. There’s no mystery to doing that at all. When we get at the cause of ME/CFS, when good treatments are found, when the word gets out that ME/CFS is a real physiological disorder – and it is getting out more and more – and when we rewrite the medical books, then doctors everywhere – not just in North America, the U.K. and Australia – but in Africa, South America, the Middle East and Asia will get the picture.
Retha’s story made me realize that every time we support an organization like the Open Medicine Foundation, Solve ME/CFS Initiative, MEAction, The Institute for Neuroimmune Studies, MERUK, etc. we’re potentially impacting not just people in North America, Europe and Australia but millions and millions of other people around the world.
The advances made in the laboratories of Stanford, Nova Southeastern University, the Universitätsmedizin Berlin, Uppsala University, or wherever will impact millions of people around the world. For me, living in the U.S., that fact brings a frisson of excitement. What you and I do in the U.S. and elsewhere, the actions we take, have the potential to make a difference for a lot of people. That’s exciting and empowering.
While no one would chose to have this disease, it’s clear to me that one of the few gifts this disease can bring is the ability to make a difference. Retha was undoubtedly totally engaged in doing strategic work for the construction and cement industry in S. Africa, and by enhancing the work of her company and its workers, was making a difference there.
I believe she’s doing potentially more impactful work now, though, and my guess is that, in some way her life, while more difficult, is actually fuller. The same is probably true for Michael J. Fox. With all his health issues, my guess is that Michael Fox is more inspired now and is making more of a difference than when he was an actor.
We should never discount our ability to make a difference. The difference the ME/CFS Foundation makes is not necessarily restricted to South Africa. If ME/CFS Foundation SA can create communal living/care facilities for people with ME/CFS – and show others how they did that – they could make a difference across the world.
You don’t need to start an organization to make a difference. Telling your story makes a difference. Contributing however you can makes a difference. You never know who you will touch. A woman who decided to visit a bureaucrat’s office one day started off a chain of events which resulted in a nationwide opportunity for doctors to learn about ME/CFS. (Story coming up.)
Simply keeping your head above water, handling this disease with dignity, and refusing to give in to despair is itself inspiring and, I say, builds a mighty muscle, which when treatments come, and you’re able to get out of bed, will prove all the more powerful.
Making a difference in ME/CFS or FM? Have a story to tell? Something that might inspire others to join you or empower others to do the same? Let us know.
After years of work it’s time to attempt what we’ve never been able to do before – get Congress to force the NIH to double its funding for ME/CFS. Support the historic bill to increase research funding, add new ME/CFS research centers, require the development of a strategic plan, etc.. It will take less than 5 minutes.