Uganda’s Children are Dying! Are Pharmaceutical Trials to Blame?
By Mary Romaniec
Grace is a friend of mine from Uganda, a country with a mixture of cultures carved out in part by a long line of civil and territorial wars. In our many conversations about life in Uganda, Grace has regaled me with tales of the delicacies of bush meat, picking mangoes fresh from the tree, the acceptance of bigamy, and life growing up in a village in northern Uganda. Of all of her stories about Uganda, Grace has made one thing clear—she loves her homeland but would never go back to live there.
So when I saw the headlines that described the situation going on in northern Uganda where children are dying of a mysterious disease, otherwise known as ‘nodding’ disease, I knew to get her opinion. The disease is similar to narcolepsy, only with the added condition that many of these children between the ages of 5 – 15 eventually die from seizures and malnutrition. Reading the symptoms of the disease it became apparent that these children were mimicking many of the traits of encephalitis or traumatic brain injury. In truth, the symptoms mirrored vaccine injury. Grace was not surprised and thoroughly blamed the government for their past transgressions of selling out the population of northern Uganda.
A little background is needed here. Uganda is located in East Africa in an area known as the African Rift Valley along Lake Victoria and Lake Albert on the western side. The northern part of Uganda borders the Congo, Rwanda, Kenya and Southern Sudan. What makes this area unique is that it is considered a place of great natural wealth in the form of minerals ranging from gold and tin to copper and cobalt. It also has untapped reserves of natural gas and crude oil. The paradox is that this vast source of wealth, along with regional conflicts, has led to complete impoverishment as people crowd into a small area of usable land, their mineral resources sold to foreign interests and their forests decimated to make room for more farm and grazing land to cope with the soaring population. Along with this population increase a whole host of diseases grew in proportion, making northern Uganda ripe for disease research, including HIV and Ebola.
Enter pharmaceutical interests. The request to do research on the population became so huge that a governing review board was sort of established. The researchers were to register with a review panel based out of Markerere University in Kampala. On the University’s own website they acknowledge the need for some ethical review of research done on their population, and admit the lack of funding (presumably to ensure its efficacy). What follows is an explanation of the International Review Board from their website:
The Science and Ethics Committee (SEC)/ Institutional Review Committee (IRB) was established in 1992, when researchers realized the need for an IRB to oversee the research and address human protection issues. The UVRI science and ethics committee was established with assistance from each collaborating programs that is, Medical Research Council (MRC), Center for Disease Control (CDC), Rakai Health Sciences Program (RHSP) and International Aids Vaccine Initiative (IAVI).
The Institute with the assistance of the collaborating programs was able to solicit for funds to help in the day-to-day activities. In 2003, members suggested the need for a secretariat to coordinate the review process. However, due to inadequate funding, this was only realized in 2007. A secretariat was established with a full time IRB Administrator, a part time Regulatory Officer and staff in the Director’s office to assist in coordination of UVRI SEC activities.
Objectives of the UVRI Science and Ethics Committee• To contribute to the development of quality and consistency in the ethical review of biomedical research at UVRI.
• To protect the rights and welfare of research participants.
• To provide ethical standards for conduct of research involving humans as research participants and to ensure that research takes into account social and cultural sensitivities of participating communities.
It is not difficult to imagine the gray area of interpretations in this program, especially the part that reads “ethical standards for conduct of research involving humans as participants.”
With this level of interest in the diseases of northern Uganda one would conclude that ‘nodding’ causes should be known. However, nothing concrete connects ‘nodding’ disease to this area except for two plausible theories: either a direct result from the H1N1 swine flu vaccine trials, or from the swine flu directly infecting the population.
As ‘nodding’ disease began to manifest in Uganda, a probe was beginning through the World Health Organization on the flu vaccine made by GlaxoKlineSmith, Pandemrix, which began to be suspected as a cause of narcolepsy in European countries. The announcement was made weeks after a Finnish Study suggested that children who received the GSK shot were nine times more likely to develop narcolepsy. Finland opened its own investigation on Pandemrix after their population of children began to show symptoms of ‘nodding’ disease, including a complete loss of muscle tone during severe attacks. And yet, the WHO said that Pandemrix remains on the “preferred vaccine list” and countries should continue to administer the shots. The population of northern Uganda was potentially involved with the H1N1 vaccine trials.
What makes the Finnish report interesting is they lay out the epidemiological instances of narcolepsy, which in their population coincided to about one for every two thousand people annually before this study began, across a wide spectrum of ages. Causes were generalized and not necessarily related to genetics, although genetics seemed to play a minor role in cases of identical twins. However, the study went on to correlate that narcolepsy in general can be brought on by a variety of infections including streptococcal A and viral infections. Other triggers could, but not necessarily include allergic reactions, inflammatory diseases, autoimmune disorders, brain damage, thyroid dysfunction, and severe psychological trauma.
By May 2010, the first cases of narcolepsy, or ‘nodding’ disease began to be reported in Finland, with immediate concern that the median age of those afflicted was 12 years, with the onset occurring on average 52 days after the inoculation. In all cases the symptoms were characterized by unavoidable falling asleep during daytime, different sleep disturbances combined with changes in the appetite and metabolism. It seems that eating sets off attacks, which is why many of the children, at least in Uganda, have been reported as malnourished and underdeveloped.
By January 2011, Finland knew they were dealing with serious problem and released their report of the huge increase of narcolepsy cases, possibly associated with Pandemrix H1N1 flu vaccine. In their report they accounted for 102 new narcolepsy diagnoses, with 62 of those in the 4 – 19 age group. At this point only Finland, Ireland, Sweden, Iceland, Germany and Canada were reporting similar incidences of narcolepsy. Vaccine lot numbers were discussed but nothing conclusive drawn from the results of the data.
So why is it a stretch for some to correlate what happened in the European countries to be any different than what is happening in northern Uganda, and parts of Southern Sudan? It isn’t. To date over 4000 children have been afflicted with ‘nodding’ disease in Uganda alone, with over 200 children dying. In Sudan the numbers are also rising into the thousands, possibly as high as 8,000. Unfortunately for most of the children in these African countries, access to health care is limited. While the children in Europe were being cared for in hospitals, the children in Uganda were being abandoned and left to die by their parents who could not, or would not, continue to care for them.
It was reported that children with the disease were significantly deficient in Vitamin B6, which raised a red flag. The CDC, whose field team includes nutrition specialists and neurologists as well as infectious disease experts have begun conducting tests to check for levels of Vitamin A, B6, B12, heavy metals as well as genetic markers in the southern Sudan population. It has begun to sound eerily familiar. Is it possible the CDC may actually be looking into the direction of vaccine trials gone bad? Probably not, but the testing of these biomedical markers is warranted—and suspicious.
To be fair there is a possibility that this is some version of the African swine flu run amuck with just children as the victims. Another possible theory is that this is related to black fly-borne parasite that causes river blindness, or onchoceriasis. But that does not account for the fact that the same symptoms showed up in Europe directly following H1N1 inoculations.
The most common link so far seems to be that a flu virus is potentially involved meaning there should be more answers forthcoming from the government health agencies, but they are not. This is why the citizens of this area are in an uproar with their government—and rightfully so. There just seems to be a national inertia when it comes to the population in the area of northern Uganda. The government in an election year makes all kinds of promises, and in the case of northern Uganda they have promised medical centers to open to treat these children. This just recently happened with children beginning to receive anti-seizure medication, but that is pretty much all they receive. The general consensus in Uganda is this is all too little, too late, especially for the children who are currently afflicted, or have died.
Grace answered me in an email about this disease, saying: “I heard about the disease. My village is among the affected areas. This is pure negligence on the government side. Perhaps they are tired of people of northern Uganda. It is sad.”
Then I asked her if by chance this might have been done as part of a vaccine trial, one where the government allowed drug companies access to their population, perhaps with payments going straight to the government (pure conjecture on my part). Her response again unsettling: “The Ugandan government has always allowed pharmaceutical companies to use its population for trials including HIV drug trials. This is well known in the government although I don't know that the population is informed about the trials.”
The truth is we don’t know what is causing ‘nodding’ disease in children in Africa. But what we do know is this area is ripe for the population to be used as pharmaceutical guinea pigs, with a government that at best is either incompetent or duplicitous in the saga. The ongoing dispute on this disorder is waking a lot of people up to how universally a health program can potentially run out of control. . .with children being the ones to be hurt the most.
Mary Romaniec's son Daniel was diagnosed with autism she soon learned how little the medical community understood about this disorder. Driven by a sense of urgency Mary began long nights of researching the internet, speaking with other parents and attending conferences that discussed ways to treat autism. Treat autism? Yes, the common notion given by the established medical community is that autism is not treatable. Meanwhile a legion of parents has discovered how wrong the medical community has been on this subject. Contrary to the wide-spread myth that children cannot be treated successfully for autism, Mary Romaniec, was able to unlock the door that lead to her son losing his autism diagnosis and declared recovered by the age of four. Visit her website at MaryRomaniec.com.
Related links:
http://www.youtube.com/watch?v=OyxzB_KcwfI&feature=related
http://www.youtube.com/watch?v=sFpq4H4wK_U&feature=relate
I hope they made a clinical trial to test treatments for the disease. even if 'nodding syndrome' still a mysterious disease, the pharma companies must make more and more effort to find the treatment.
Posted by: scbs | September 08, 2019 at 06:20 AM
This is a sad story.
The big pharma companies need to be stopped from risking these kids lives.
Posted by: John | February 26, 2019 at 04:53 PM
"disorder is waking a lot of people up to how universally a health program can potentially run out of control. . .with children being the ones to be hurt the most". Well quoted. Not only children suffer in this disaster but even patients who don't have alternative choice.
Posted by: lornah | June 08, 2018 at 04:43 AM
“Criminal practice {of vaccinations) will end as soon as parents develop sufficient interest in the welfare of their children.”
- Herbert Shelton
In 1977, Dr Jonas Salk who developed the first polio vaccine, testified along with other scientists, that mass inoculation against polio was the cause of most polio cases throughout the USA since 1961. - (Science 4/4/77 Abstracts)
"can you inject a foreign substance of any kind into a little baby and believe that in anyway it can improve its health?"
- MW Howard Hay MD June 1937. The Congressional Record
Posted by: ricci | August 27, 2012 at 11:09 AM
The phenomenon of physician non-compliance to vaccination has been known since the early 1980’s (From Thomas Levy, MD, FACC): “Even among the physicians who are the biggest purveyors and promoters of vaccination, it would appear that when the needle is turned around, the inoculation mania subsides. In a study published in the Journal of the American Medical Association, 90% of obstetricians and about 70% of pediatricians refused to take the rubella vaccine. The possibility of "unforeseen vaccine reactions" seemed to have their concern ("Rubella Vaccine and Susceptible Hospital Employees: Poor Physician Participation," Journal of the American Medical Association, (February 20, 1981). Apparently, what's good for the goose is not always what's good for the gander. If these vaccines were truly all they were purported to be, these good doctors should have been pushing each other aside to be first in line to get stuck.”
Posted by: ricci | August 27, 2012 at 11:01 AM
The Gates Foundation is sponsoring a Malaria Vaccine trial in Uganda right now.
Posted by: Ross Coe | July 31, 2012 at 02:39 PM
I completely agree with your conclusion!! Not even when I brought the children to Mulago Hospital, I am paying for the SIN!! But God knows better.
Thank you.
Mama Mabira, area MP Kitgum.
Posted by: Beatrice Anywar Atim (MP) | May 26, 2012 at 01:06 PM
Tara C. Smith, an Assistant Professor of Epidemiology, seems to be one of those tiresome little scientists who admits that the cause(s) of a disease "still remain mysterious", but appears 'shocked' at the notion that nodding disease could possibly have something to do with 'pharmaceutical trials and vaccines'.
http://scienceblogs.com/aetiology/2012/03/the_emergence_of_nodding_disea.php
You have to laugh at the general inanity of such scientists ... along with Orac 'the stupid it burns' Gorski ... who, being tiresomely underemployed, drops in to comment on Tara's piece. Mind you, I think Tara has a point when she points out that nodding disease "really doesn't have much in common with narcolepsy at all..."
Posted by: Mark Struthers | March 27, 2012 at 04:16 PM
My husband over the last year has begun sleeping more and more, he cannot stay awake.
I will remind everyone here. When he was 28 years old her reacted to a tetanus shot with night long seizures. At ate 34 he received yet another tetanus shot and was dignosed with mitcochondrial myopathy "Acquired" Down at Emory Clinic.
Today at the neurologist's - she mentioned necrolepsy.
The only treatment was the same stuff my son takes for attention deficit disorder -- meth and uppers like adderale - that is it --that is the only treatment.
According to the wi here on the net, autoimmunity is stopping the production of proteins that attack not only the part of the brian for wakefulness but for appetite.
So here we are; one more DAMN Suprise to add on to the other many towers of surprises over the years.
Posted by: Benedetta | March 26, 2012 at 12:15 PM
"A team of scientists from the US Centers for Disease Control and Prevention will be travelling to the region in mid-February for their fourth such exploration; this time, they hope to lay the groundwork for a clinical trial to test treatments for the disease."
Gee, I wonder if they'll be breaking out the chelation, HBOT, GABA, MB12 Valtrex, and IVIG. Oh wait, I forgot, doing clinical trials on that stuff isn't ethical. Darn!
Posted by: Garbo | March 22, 2012 at 07:01 PM
They haven't a clue about the cause of 'nodding syndrome' - although it's certain not to include vaccines - but the CDC are all set to test treatments for the disorder, according to this recent article from the Lancet,
http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(12)60126-3/fulltext
"A team of scientists from the US Centers for Disease Control and Prevention will be travelling to the region in mid-February for their fourth such exploration; this time, they hope to lay the groundwork for a clinical trial to test treatments for the disease."
- - - - -
PS. Thanks to 'Prion', one of Goldacre's 'badscientists', for the link to this interesting Lancet article.
http://www.badscience.net/forum/viewtopic.php?f=3&t=28239#p768451
Please note the synapse-free alert from Dr. DeeTee MD, one of Ben's best and brightest contributors.
Posted by: Mark Struthers | March 22, 2012 at 02:43 PM
My daughter had to do a project at the beginning of the year on a disease called African sleeping sickness which is caused by a parasite. I thought they were in the process of developing a vaccine for the disease. I know they are coming up with a vaccine for a similar sickness in a different country.
When watching the youtube video the nodding reminds me of seizure activity or absence seizures and the fact that they are brought on by the consumption of food makes me wonder if they have developed severe food allergy.
They are in trial III phase of developing treatment for sleeping sickness:
http://www.ip-watch.org/2011/05/17/bill-gates-calls-for-vaccine-decade-explains-how-patent-system-drives-public-health-aid/
Nodding disease is also thought to be caused by a parasite, but the parasite is also prevalent in other regions without the severe symptoms. I believe this is why the CDC thinks there is also a toxic element involved in the sickness perhaps to allow access to the brain.
Posted by: Patrick | March 21, 2012 at 09:01 AM
Of Sir Andrew Witty, Chairman of the Board of Trade and all British Universities, 'The Great Panjandrum' said,
"So, he is undoubtedly the most powerful businessman in the land."
May I therefore dare to suggest that Sir Andrew is also the greatest purveyor of mcscientific* products (aka great snake-oil salesman) Great Britain has ever produced.
- - - - -
* 'McScience': from McDonald's, a well-known commercial venture, and science.
1.(slang, pejorative) The unethical commercialization of science, as for example where results are deliberately misinterpreted in exchange for large grants from a corporation.
http://en.wiktionary.org/wiki/McScience
Richard Horton, MMR Science & Fiction - Exploring the Vaccine crisis Granta Publications, London, United Kingdom. ISBN-10: 1862077649. ISBN-13: 978-1862077645 Chapter 3: "The Dawn of McScience"
- - - - - -
PS. By some strange irony, it was Dr Dick Horton, as editor of the Lancet and Ronald McDonald of medical science, who stuck his weapon of mass destruction into the backs of the Royal Free Three.
Posted by: Mark Struthers | March 21, 2012 at 05:35 AM
GSK experiments on poor kids in the Americas and operates profiteering schemes on Uganda's children. The CEO is knighted for services to the British economy despite massive fines for corrupt practices in the US. With the help of a corrupt Murdoch Media Empire, GSK underwrites a monstrous hack job * on the Royal Free Three and their investigation of sick autistic children in the UK.
GSK makes me want to throw up.
* The monster hack job by the GMC on the Royal Free Three - as a service to governmental hackers - was undemocratically sponsored through the registration fees of GMC registered doctors like me. The GMC makes me want to vomit.
Posted by: Mark Struthers | March 21, 2012 at 05:02 AM
A quick surf using PATH GAVI NIAID VACCINE TRIAL UGANDA shows that they've been testing HIV/AIDS vaxxes as well as a clinical trial in children of a malaria vaccine. This in addition to a "pilot program" pushing HPV vax. The University you mentioned also has a partnership with Walter Reed (http://www.muwrp.org/?page_id=309); that program is doing HIV vaccines as well as avian influenza, pandemic influenza, ebola, marburg, and combo ebola/marbug vaxxes.
I noticed you mentioned it's in the Rift Valley. They have been searching for decades for a usable vaccine for Rift Valley Fever (feared as possible bioweapon and agri-weapon, for more check out the book LAB 257 about Plum Island). The latest iterations are an inactivated TSI-GSD 200 which has been around since 1982 and newer MP-12, a recombinant VLP vaccine. Once developed, they are planning to introduce this vaccine also to "non-endemic" countries like the U.S. Like the VLP-based HPV vax, MP-12 "provides good immunity" but "the cost reduction and the selection of appropriate cell substrates for the preparation of RVFV VLPs may be needed to develop RVFV VLP as human vaccine candidates." i.e., it works really well but it is too expensive to make in bulk. They solved this problem in the HPV vax by jacking it up with a ton of aluminum adjuvant so less antigen is needed, and that still costs $360. I'd imagine that such details would need to be worked out in clinical trials.
Some if not all of the U.S. clinical trials(for RVF) were/are apparently conducted using USAMRIID personnel. They mentioned not having contact with infants, children under 8, adults over 64; nor having saliva exchange or unprotected sex; for 2 weeks post-vax. And that was for inactivated or VLP vaccines! One wonders if the same protocols would be observed in Uganda...or if exposure to trial vaxxed adults would cause RVF-like symptoms...apparently there is a vax for livestock.
Posted by: Garbo | March 20, 2012 at 10:18 PM
Hi Mary,
Of course the issues of experimentation on children and adults in the developing world - not to mention over-vaccination - do not go away but (acknowledgements to Hilary Butler) it looks as if this terrible disease does have a long and substantial history:
http://onlinelibrary.wiley.com/doi/10.1111/j.1528-1167.2008.01671.x/full
http://virtualmentor.ama-assn.org/2009/07/oped1-0907.html
http://www.youtube.com/watch?v=5S7QLocaS0M
John
Posted by: John Stone | March 20, 2012 at 09:34 PM
Mark
Just to point out that Sir Andrew is lead non-executive board member of the Department of Business, Innovation and Skills.
http://www.bis.gov.uk/about/governance/non-executive-board
I suppose lead non-executive board member, is what is normally called a chairman and the Department of Business, Innovation and Skills is what we Brits used to call the Board of Trade although it now controls our universities as well. So, he is undoubtedly the most powerful businessman in the land.
Posted by: The Great Panjandrum | March 20, 2012 at 06:52 PM
Last year, GSK were fined around $3 billion, in a dispute with the US government, for various misdemeanours around drug development and marketing.
http://www.diabetes.co.uk/news/2011/Nov/drug-company-fined-for-avandia-marketing-96123537.html
And GlaxoSmithKline were fined a lot of pesos by the courts in Argentina for experimenting on poor Argentinean children - as linked to below.
Arise Sir Andrew ... despite these abject ethical, moral and financial failures, Andrew Witty, CEO of GSK, was dubbed a knight by the Queen of England in the New Year's honours,
http://www.london-gazette.co.uk/issues/60009/supplements/2
I'm feeling distinctly nauseous now.
Posted by: Mark Struthers | March 20, 2012 at 04:49 PM
This is very interesting. I am a Ugandan journalist and blogger and posted the following similar article recently on the same subject. Am glad interest seems to be growing in examining all leads to nodding disease.
http://angeloizama.com/2012/03/01/invisible-children-response-to-nodding-disease-echoes-the-northern-uganda-war-and-more/
Posted by: Angelo Izama | March 20, 2012 at 03:40 PM
Earlier this year, GlaxoSmithKline was fined by a court in Argentina over vaccine trials in which 14 babies apparently died,
http://bit.ly/xhLY9X
The following two quotes are taken from the above linked article in the Buenos Aires Herald:
“Laboratories can't experiment in Europe or the United States, so they come to do it in third-world countries."
“These doctors took advantage of many illiterate parents whom take their children for treatment by pressuring and forcing them into signing these 28-page consent forms and getting them involved in the trials.”
Knowing that the corporate motto of GSK is ...
"committed to improving the quality of human life",
... makes me feel queasy.
Posted by: Mark Struthers | March 20, 2012 at 02:42 PM
When people complain that vaccines aren't tested properly before they are introduced into our (U.S.) immunization schedule and they argue for more pre-licensing safety trials, where do they think they will be tested and who do they think will suffer the consequences when trials identify safety problems. And we think we have problems finding medical attention for our sick children post vaccination... this story illustrates why the shipping vaccine trials overseas to under-developed countries that already lack basic medical care availability is dead wrong.
Posted by: Donna K | March 20, 2012 at 01:44 PM
It would not be the fist time for vaccine trials (polio vaccine trials in the '50s) having been done in Uganda or for that matter in other parts of central Africa. John Le Carre says at the end of his book "The Constant Gardener" that his book is fiction, but that reality is much worse.
Posted by: Birgit Calhoun | March 20, 2012 at 12:36 PM
The H1N1 or other vaccine relationship, if exists in these children, from the information given in this post seems to point most directly to Gaba disturbance. This is part of the conditions we are dealing with and are part of systemic changes and effects. When you look at a drug like Zolpidem you can see what certain Gaba agonism can do and one may consider what an antagonist would do as well. There are different Gaba receptors and it is part of a super family of receptors called Cys-loop receptors. Various effects on Gaba recptors and/or the Super family could result in various degrees of effects or a fairly specific presentation of efffect if one type of assualt or synergy of assault took or is taking place. If the asssualt is the same the symptoms in those effected would resemble each other.
Posted by: Visitor | March 20, 2012 at 12:18 PM
CNN had this story about nodding disease in Uganda on Mar 19.
Mysterious nodding disease debilitates children
http://www.cnn.com/2012/03/19/world/africa/uganda-nodding-disease/index.html?hpt=hp_c3&fb_source=message
Another "mystery" affecting CHILDREN!
Anne Dachel, Media
Posted by: Anne McElroy Dachel | March 20, 2012 at 10:37 AM
I am on a board for parents with children with type 1 diabetes. Recently, there was a post from a father from Ethiopia whose 10 month old baby was recently diagnosed. One part of his message stood out for me. It stated that:
"It is really tough here to get Doctors when you are in need. Plus diabetes in children is a recent phenomenon. There is a big knowledge gap. We take him to a hospital once a month but we get a little help".
In the more industrialized nations, type 1 diabetes has been on the rise for years now... I think that we have sadly started to adapt to the idea that it is "normal" for young children to be diagnosed early with type 1 diabetes (I believe likely due to increased vaccinations). Interesting to me that this is such a "recent" phenomenon there. I was wondering if the pharmaceutical companies are just now (recent history) been supplying some of these countries with our precious poisons (ie vaccinations). Thereby bringing some of these long term diseases / disorders to these countries. Could it be an increase in all (or many vaccines) over there as opposed to "only" clinical trials? I don't know... just thinking out loud.
Posted by: Sue M. | March 20, 2012 at 10:11 AM
"The Constant Gardener"
Was a book and a movie that was not totally baseless.
Posted by: Benedetta | March 20, 2012 at 08:56 AM
It seems like when they say mysterious disease, they are really saying, vaccine injury to those of us that know what neurological devastation they impose on certain individuals.
Posted by: victor pavlovic | March 20, 2012 at 08:41 AM
I just spoke to a neurologist who said in his time in NY, he only ever saw eastern Africans with autism but never western. What's very interesting is that ethnic Ethiopians are genetically closer to Swedes than to other ethnic groups in Africa. Sudan and Uganda are obviously very close to Ethiopia. GAVI provided the Sudan with the rotavirus vax in 2011 (http://www.gavialliance.org/support/nvs/rotavirus/) and a Ugandan blogger has reported that healthcare workers (identified as being from the GAVI Alliance but unconfirmed of course) have been grabbing and stabbing children in Uganda since 2010, literally "chasing children down the street" and "using intimidation". Other bloggers in Uganda report the vaccine clinics in refuge camps always follow the wars and noticed that the group Invisible Children, which appealed for support from the Bill and Melinda Gates Foundation in 2009, never reported a thing about nodding disease:
Invisible Children. Response to Nodding Disease echoes the Northern Uganda war and more
March 1, 2012 By Angelo Izama in The Ugandan Reader Tags: flu vaccine, invisible children, Nodding disease, Northern Uganda, pandemix
One of the theories now “dismissed” in explaining the relationship between the neurological disorder known as “nodding disease” and its prevalence in the northern part of the country- is that it had anything to do with the war. One expert said it had nothing to do with war era ordinances. No bombs or other weapons of destruction could have caused these side-effects of seizures and involuntary spasms- a constant “epilepsy” that leaves children in a vegetative state- their parents bewildered.
It is hard to ignore the bitter irony.
If the “ Northern Uganda” war had nothing to do with “nodding disease” perhaps we can discuss the geography of this disease more intelligently than has transpired so far? It would be fair since the geography of this place has been essential to the response by Ugandan institutions and development partners as well as the public to its well publicised horrors.
Why has nodding disease emerged in the war’s most affected districts of Pader, Kitgum and Gulu? What is it about 5-15 year olds, just out of the camps that makes them susceptible to the disease?
There is a term for this conversation.Correlation is not causation.Geography however is also essential to the science of diseases.
One of the undesirable facts about the Northern Uganda beyond the conflict itself were the attractiveness of its conditions for disease research. More people died from diseases than from injuries sustained in the war as a result of being crammed, like poorly tended cattle, into the so-called “displaced” people’s camps. In the intervening years outbreaks such as ebola were reported in these parts. Experts can confirm today that the corridor where nodding disease is raging is a well-researched one with regular surveillance for outbreaks including Hepatitis E and others. Many respectable institutions including the Centers for Disease Control and its Ugandan partners, given the human conditions here, have sentinel sites to monitor the population. Studies continue in surrounding communities as the end of the war has bred new conditions.
A simple check with Makerere University’s Institutional Review Board that tracks, approves and theoretically monitors disease research should reveal the extant of scientific interest suggested above.
It is rather baffling therefore that so little is known about nodding disease itself. The closest symptoms to the condition that I have encountered is narcoplexy which is some sort of rare sleeping disorder. Nothing really connects this condition to Northern Uganda save for two potential theories. One is that nodding disease is a consequence of vaccine trials against swine flu or that it is caused directly by swine flu infecting humans.
Recently during the mad dash for a vaccine to deal with H1N1 there was an uproar in Europe when respected pharmaceutical companies were accused of inducing a severe and debilitating form of narcoplexy in children following the administering of a flu vaccine.
A lot of this information is public and anyone can construct their own opinion on the matter. Last year the BBC reported that Pandermix, one of the vaccines was being investigated by several countries including Finland for the link to “nodding disease” like conditions. They include cataplexy, or loss of muscle tone during severe attacks. The use of the vaccine was discontinued and the World Health Organisation launched its own inquiry. The issue whether the vaccine caused “nodding disease” or not has not yet been resolved as a paper here at Stanford University’s center for the study of narcoplexy suggested it may be caused by other factors.
Read the Finland Report on Narcoplexy ( Its interesting that the symptoms are clustered within the ages of 5-19 years)
If a flu vaccine administered in trials or research is the cause of nodding disease- it has not come out yet. It certainly warrants a look since there are so few answers as to what is causing nodding disease itself. Running with the theory that it is swine flu virus of one sort or another linked is not a stretch. It is fairly common knowledge that scientists in this field are pre-occupied with the dangers of direct transmission of swine flu to humans.
Indeed Gulu and surrounding districts are victims of outbreaks of the African swine flu that often affects pig rearing. There are many articles to this effect. Just googling now revealed several studies discussing the worries about swine flu transmissions from animals to humans and humans to humans by amongst others the CDC. The agency, which is also involved in investigating the Uganda nodding disease issue, is however yet to publicly link swine flu or its research to nodding disease. Whether or how this link has been eliminated as also not been explored judging from the coverage on the issue.
Aside from vaccine trials gone bad- there may be no link between the European cases of flu vaccines causing “nodding disease” symptoms and Ugandan versions of this condition. But given the common link that a flu virus is involved there aught to be more answers than questions especially from the affected public ( without of course instinct to point to a conspiracy which can distract and be used to distract in equal measure).
But there is national paralysis when it comes to Northern Uganda.
In Gulu, one of the fastest growing towns in Uganda, teenage prostitutes, perch at street corners where not long ago some may have been spending the night as “commuters”. At the height of the war these children walked tens of kilometers to sleep on the pavements of the town for safety. They were made “famous” by the US charity “Invisible Children” as the horror of their plight captured the imagination and hearts of students in college campuses across the United States. However the latter day tragedy of these victims is a story told less through the lenses of the war that expired in 2006.
Gulu, whose slums are hardly an improvement of camp conditions, is just another Ugandan town now. And as fate would have it, the fact that the 4000 children affected by nodding disease, like some sort of PTSD, hail from the districts most affected by the war has not registered with the reporting of the disease.
There is no campaign by Invisible Children or statements about the horror of the children maimed for life by this disease their hapless parents forced to endure another lifetime of incaceration. Nodding disease is a very northern Uganda condition complete with its capacity to be ignored and mis-diagonised if diagonised at all.http://angeloizama.com/2012/03/01/invisible-children-response-to-nodding-disease-echoes-the-northern-uganda-war-and-more/
Posted by: Adriana | March 20, 2012 at 08:07 AM