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.
South Africa
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.
Retha’s Story
Retha was a business strategist before she became ill with ME/CFS.
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.
Doctors
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.
Most doctors in SA are clueless about ME/CFS; ME/CFS Foundation SA is committed to educating them.
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.
Disability
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.
A Takeaway
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.
What we do makes a difference.
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.
Is she Negative or Positive to the East African Sleeping Sickness? Would be easy for her to get tested there they do the test in front of the patient with a drop of blood
Luckily South Africa does not have East African Sleeping Sickness.
And although knowledge of and treatment options for ME/CFS are dire – the health system is pretty strong in dealing with other well understood diseases.
Hi
The private health care system is great, but the public health care system is in bad shape.
Unfortunately the vast majority of our country ( including ME/CFS) has to make use of the public health care system, myself included.
Warmest regards Retha
Amazing strength and determination. Thank you, to Retha and her team.
Thanks Cort for keeping us in the loop ??as always and I love the term/title..”Breaking the Mold,”!???
Kudos to Retha Viviers—one more hero of ME/CFS! I am going to send her organization a donation. How powerful will it be for donations to come in to them from around the globe? for her to be able to show the powers-that-be that she has support from the US, the UK, Australia and beyond? I hope everyone will send just a small donation. I think that together we can send a big message.
Thank you dear Ann. Warm regards. Retha Viviers
Herewith our reply on someone’s comment on Facebook..
Hi John. Our uniqueness is that the scope is completely different and wider. I knew Arlene Vermaak and when she sadly passed away their Association wasn’t able to continue. That is why we say we are the first and only as the objectives, goals, scope etc are completely different. There are articles where we’ve paid respect to her/their work, unfortunately it isn’t in every one. Warm regards Retha Viviers
Thank you Cort and Retha. It is inspiring, and heartbreaking, to hear how people are managing this condition, and their lives, within medical systems that are even less supportive and flexible than our own (in the US).
Below is a link to a really nice interview posted recently by the OMF featuring a discussion about ME/CFS between two doctors. The subject of the interview, Dr. Alan Gurwitt, is both a psychiatrist and a patient with ME. He is very straightforward in his discussion of the subject of where/how/why the psychological model of ME started, how it spread from its origins in the UK to effect treatment around the world (and continues to do so to this day), and how damaging this trend has been for patients worldwide.
I found it refreshing and encouraging to hear such a steady voice of reason on this issue coming from someone within the psychiatric branch of the medical system. He is also hopeful that things are now finally beginning to change.
https://www.youtube.com/watch?v=AAKKHRBL71k
Will listen thank you!
I should have been more clear in my comment:
It may be that psychiatrists, in general, are more apt than not to view the condition as non-psychiatric, and possibly (just as Cameron points out below) even more so than their colleagues in other fields of specialty. I would never want to imply otherwise (and only in part because I have no personal experience with that field, nor have I done any extensive research into that subject).
I just found it refreshing (and comforting, frankly) to happen across a video of one such psychiatrist who was so openly and publicly sharing his perspective, including his own experience of being at times on the “receiving end” of the broader (system-wide, and worldwide) confusion over this core issue.
(In fact, both men featured in that video help to restore and retain my faith in both fields of medicine.)
But, for all I know, many of our greatest allies and supporters may be psychiatrists…just generally, too. I hope so!
MarthaLauren, That has been my experience as well. A kind, progressive psychiatrist was the only MD, other than the hormone specialist who first tested me for EBV, who recognized CFS/ME and helped me in any way. If not for him and his help from 1999 until 2015, I don’t know where I would be. Unfortunately, such psychiatrists are few and far between.
I think there are a lot of psychiatrists who recognize that ME/CFS is not a psychiatric illness. One of my doctors (non-psychiatric) said they thought psychiatrists can be more willing to accept the reality of its being a physical illness than non-psychiatric doctors because they recognize its not depression, which they know more about than do non-psychiatric doctors (if only the latter would realize their limitations in that regard…)
Hi, the EU funded EUROMENE biomarker group are due to make recommendations on potential diagnostic tests next April (2020). The group is chaired by Carmen Scheibenbogen [Charité University Berlin] and includes other leading ME researchers such as Jonas Bergquist [OMF – Uppsala].
EUROMENE will also lobby the EU Commission for funding to implement their recommendations.
Any readers in Europe should keep this in mind (and others). As you highlight Cort; progress in any country will benefit others.
ME Action are lobbying for funding for the development of a diagnostic test and treatments https://www.meaction.net/…/announcing-millionsmissing-2019…/
Since Dr. Montoya’s termination was mentioned at the beginning of this article, I would like to revisit this topic.
What happened to Dr. Montoya reminds me of the tragedy of Dr. William McBride, the doctor who discovered that thalidomide caused birth defects.
Our second child, a son, was born in 1975 with an underdeveloped right hand, shorter arm, missing chest muscle and a bicuspid heart valve. I was prescribed a number of medications during pregnancy for ordinary discomforts of pregnancy, so I never questioned them.
But, every time we took our son to the doctor, they would ask me what drugs I had taken during pregnancy.
My mother and I started writing letters to the FDA about the medications I had taken. One day, someone from the FDA called and said “forget the other drugs and concentrate on Bendectin”.
I would have never suspected Bendectin because it was so commonly prescribed, but over time several whistleblowers from the FDA called us; encouraged us and even sent us documents we wouldn’t be able to get anywhere else.
This where Dr. McBride comes in. In our research, we learned that he had reported several cases of limb reduction defects to the Australian Food and Drug Directorate (like our FDA). All the mothers had taken Debendox, their version of Bendectin.
I contacted Dr. McBride and he was very enthusiastic. He had won the prize for the scientific discovery of the decade for his discovery of birth defects being associated with thalidomide. This came with a monetary award that he used to set up “Foundation 41” to study the effects of exposures on the outcomes of pregnancies.
Dr. McBride ran some studies with marmosets using the ingredients of Bendectin and found limb reduction defects in their offspring.
Dr. McBride was also trying to determine the mechanism for how Bendectin caused birth defects and was studying drugs with atropinic effects like the ingredients of Bendectin. This is where he made a fatal mistake. He had a friend in the U.S. who was a professor of anatomy and Dr. McBride told him about the deformities he was finding in chicks exposed to atropine. He encouraged his friend to run some experiments to see if he found the same deformities. He did.
Unfortunately, when Dr. McBride wrote up the findings in a paper submitted for publication, he failed to mention that some of the chicks were in the U.S. By the time, Dr. McBride’s accusers were raising the issue of the chick experiments in the U.S., Dr. McBride’s friend had died and his wife couldn’t locate his research notes.
A researcher working in Dr. McBride’s lab reported this to the media. Dr. McBride was put on trial for 18 months, the longest trial in Australian history. He was found guilty of scientific fraud, stripped of his medical license and his foundation was closed.
Dr. McBride never realized how high the stakes were for Bendectin. At one point, it was the 11th most prescribed drug in the U.S. and approved for marketing all over the world. The company that made Bendectin had also made thalidomide and marketed it in Canada. Fortunately, Dr. Frances Kelsey kept it off the market in the U.S.
At one point, the drug company sent someone to Australia to discredit Dr. McBride, but the Australians kicked him out of the country. Then they got someone in his lab. This time, there was no reprieve.
If the “powers that be” would do this to a doctor who was celebrated as a hero who saved hundreds of thousands of children in the U.S. from terrible birth defects, why is it a stretch to imagine something similar could happen to Dr. Montoya who was at the forefront of research on ME/CFS?
Dr. Montoya’s termination is a loss but he was not all at the forefront of ME/CFS research in my opinion. He worked slowly and was not efficient or innovative. For instance overspent greatly on his huge cytokine study (400 healthy controls ???) – which didn’t provide any insights into what is actually causing ME/CFS. For the most part, in my opinion, he did rather middle of the road research and not that much of given how much funding he was given.
Cort, I have had ME/CFS for 35 years and I have seen research theories come and go…viruses, mycoplasma, stress, toxins (although that one has never really been explored). The nanoneedle test is the only new advance I have seen. Even the blood coagulation study isn’t new. The first drug I was ever given in 1985 was an anticoagulant. And David Berg’s work on antiphospholid syndrome predated the latest study.
But, you focus totally on ME/CFS so I would like to know what breakthroughs you believe are most important and which researchers are responsible.
One of my first encouragers when I was finally diagnosed, was an old schoolmate and close friend from my AFS student exchange year in Durban. She and her daughter were very ill with ME, as they already called it. Her knowledge came from Dr. Sarah Myhill’s writings and their doctor in Cape Town. Her brother is a naturopathic doctor in the Pretoria area, Izak Grove. With his sister and niece ill for many years, (and having both improved over the years), and his expertise in natural and alternative therapies, he could be a good resource. He was recently featured in the magazine Vrouekeur, 15 March, discussing Ozone Therapy. (In Afrikaans). They gave out his email. izakgrove4@gmail.com Thanks for doing this story, Cort.
Denise B thank you for this information about the article.
Retha, your video was so well done, so like my own experiene. I shared it on my FB page and with two other South African patients I know. God bless you and your efforts. What an inspiration you are! Sterkte!
Thank you so much Denise
Third World and authoritarian countries are not notable for their medical research.
Although I have never been a patient of Dr. Montoya’s, I believe that the research he directed at the Stanford ME/CFS Center is critically important to moving forward.
Here are studies that have been done on ME/CFS to date.
1. Onset Patterns and Course of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. Chu L, Valencia IJ, Garvert DW, Montoya JG. Front Pediatr. 2019 Feb 5;7:12. doi: 10.3389/fped.2019.00012.
2. Insights into myalgic encephalomyelitis/chronic fatigue syndrome phenotypes through comprehensive metabolomics. Nagy-Szakal D, Barupal DK, Lee B, Che X, Williams BL, Kahn EJR, Ukaigwe JE, Bateman L, Klimas NG, Komaroff AL, Levine S, Montoya JG, Peterson DL, Levin B, Hornig M, Fiehn O, Lipkin WI. Sci Rep. 2018 Jul 3;8(1):10056. doi: 10.1038/s41598-018-28477-9.
3. Deconstructing post-exertional malaise in myalgic encephalomyelitis/ chronic fatigue syndrome: A patient-centered, cross-sectional survey. Chu L, Valencia IJ, Garvert DW, Montoya JG. PLoS One. 2018 Jun 1;13(6):e0197811. doi: 10.1371/journal.pone.0197811. eCollection 2018.
4. Cortical hypoactivation during resting EEG suggests central nervous system pathology in patients with chronic fatigue syndrome. Zinn MA, Zinn ML, Valencia I, Jason LA, Montoya JG. Biol Psychol. 2018 Jul;136:87-99. doi: 10.1016/j.biopsycho.2018.05.016. Epub 2018 May 23.
5. Value of Circulating Cytokine Profiling During Submaximal Exercise Testing in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. Moneghetti KJ, Skhiri M, Contrepois K, Kobayashi Y, Maecker H, Davis M, Snyder M, Haddad F, Montoya JG. Sci Rep. 2018 Feb 9;8(1):2779. doi: 10.1038/s41598-018-20941-w.
6. Cytokine signature associated with disease severity in chronic fatigue syndrome patients. Montoya JG, Holmes TH, Anderson JN, Maecker HT, Rosenberg-Hasson Y, Valencia IJ, Chu L, Younger JW, Tato CM, Davis MM. Proc Natl Acad Sci U S A. 2017 Aug 22;114(34):E7150-E7158. doi: 10.1073/pnas.1710519114. Epub 2017 Jul 31.
7. Fecal metagenomic profiles in subgroups of patients with myalgic encephalomyelitis/chronic fatigue syndrome. Nagy-Szakal D, Williams BL, Mishra N, Che X, Lee B, Bateman L, Klimas NG, Komaroff AL, Levine S, Montoya JG, Peterson DL, Ramanan D, Jain K, Eddy ML, Hornig M, Lipkin WI. Microbiome. 2017 Apr 26;5(1):44. doi: 10.1186/s40168-017-0261-y.
8. Distinct plasma immune signatures in ME/CFS are present early in the course of illness. Hornig M, Montoya JG, Klimas NG, Levine S, Felsenstein D, Bateman L, Peterson DL, Gottschalk CG, Schultz AF, Che X, Eddy ML, Komaroff AL, Lipkin WI. Sci Adv. 2015 Feb;1(1). pii: e1400121.
9. Right arcuate fasciculus abnormality in chronic fatigue syndrome. Zeineh MM, Kang J, Atlas SW, Raman MM, Reiss AL, Norris JL, Valencia I, Montoya JG. Radiology. 2015 Feb;274(2):517-26. doi: 10.1148/radiol.14141079. Epub 2014 Oct 29.
10. Randomized clinical trial to evaluate the efficacy and safety of valganciclovir in a subset of patients with chronic fatigue syndrome. Montoya JG, Kogelnik AM, Bhangoo M, Lunn MR, Flamand L, Merrihew LE, Watt T, Kubo JT, Paik J, Desai M. J Med Virol. 2013 Dec;85(12):2101-9. doi: 10.1002/jmv.23713. Epub 2013 Aug 19.
11. Daily cytokine fluctuations, driven by leptin, are associated with fatigue severity in chronic fatigue syndrome: evidence of inflammatory pathology. Stringer EA, Baker KS, Carroll IR, Montoya JG, Chu L, Maecker HT, Younger JW. J Transl Med. 2013 Apr 9;11:93. doi: 10.1186/1479-5876-11-93.
12. Response to valganciclovir in chronic fatigue syndrome patients with human herpesvirus 6 and Epstein-Barr virus IgG antibody titers. Watt T, Oberfoell S, Balise R, Lunn MR, Kar AK, Merrihew L, Bhangoo MS, Montoya JG. J Med Virol. 2012 Dec;84(12):1967-74. doi: 10.1002/jmv.23411.
13. A multicenter blinded analysis indicates no association between chronic fatigue syndrome/myalgic encephalomyelitis and either xenotropic murine leukemia virus-related virus or polytropic murine leukemia virus. Alter HJ, Mikovits JA, Switzer WM, Ruscetti FW, Lo SC, Klimas N, Komaroff AL, Montoya JG, Bateman L, Levine S, Peterson D, Levin B, Hanson MR, Genfi A, Bhat M, Zheng H, Wang R, Li B, Hung GC, Lee LL, Sameroff S, Heneine W, Coffin J, Hornig M, Lipkin WI. MBio. 2012 Sep 18;3(5). pii: e00266-12. doi: 10.1128/mBio.00266-12.
Although Dr. Montoya is one of many researchers on most of these papers, he was the head of this clinic and I worry that research like this will stop when he is gone.
Has anyone connected their ME/CFS with mast cell activation disorder and mold? Is their a connection?
Good day
Please advise where in South Africa I can see someone qualified in treating mold illness?
Regards
Melany