Editorial Note: We have run previous posts on mefloquine (Lariam) – the The Strange History of Lariam and Lariam Hell and quinoline anti-microbial, as well as on a different group of anti-microbials – the fluoroquinolones – but a lot of their problems overlap. More to the point, those with Mefloquine problems have faced difficulties from Roche that so many others taking fluoroquinolones and other compounds have faced from other companies. The creation of a Foundation to collate expertise and handle the problems of specific drug groups may be a way forward for other groups seeking to move problems forward. Remington Nevin the driving force behind this initiative has been working on these problems for years – as have a large number of others who have had family members affected.
WHITE RIVER JUNCTION, VT. JANUARY 24, 2018
The Quinism Foundation has announced its official incorporation as a domestic non-profit corporation in the village of White River Junction, Vermont.
The Quinism Foundation promotes and supports education and research on the potentially life-threatening medical conditions caused by poisoning by quinoline drugs including the antimalarial drugs mefloquine (previously marketed as Lariam®) and tafenoquine, an unlicensed drug currently undergoing regulatory review by the U.S. Food and Drug Administration (FDA).
Symptoms of neuropsychiatric quinism, or chronic quinoline encephalopathy, can include terrifying nightmares, severe insomnia, crippling anxiety, and debilitating cognitive dysfunction and can contribute to an increased risk of suicide. Particularly among military veterans, many of whom were issued quinoline antimalarials during combat deployments, the lasting symptoms of neuropsychiatric quinism are regularly mistaken for those of Posttraumatic Stress Disorder (PTSD).
“Quinism affects veterans and civilians alike, but veterans suffering from chronic quinoline encephalopathy are frequently misdiagnosed with PTSD,” said Remington Nevin, MD, MPH, DrPH, executive director of The Quinism Foundation. “We are delighted to join the VA’s National Center for PTSD in making White River Junction, Vermont, our home. Our location helps position the village as an emerging center for research and education on these two neuropsychiatric conditions, which often mimic each other.”
In 2013, the FDA warned that mefloquine can cause long-lasting and even permanent adverse effects. More recent research confirms that nightmares and other abnormal dreams affect nearly 1 in 7 of those exposed to mefloquine [1], and that more than 1 in 5 of those who complain of nightmares report this symptom continuing over 3 years after exposure [2]. Other symptoms of neuropsychiatric quinism, due to central nervous system toxicity, can include lasting tinnitus, dizziness, vertigo, paresthesias, and visual disorders.
Authors at the U.S. military’s Walter Reed Army Institute of Research (WRAIR) [3], where several quinoline antimalarials including mefloquine and tafenoquine were developed, have noted that mefloquine toxicity “can persist for several years after exposure has been discontinued, with little to no abatement in symptoms over time,” and that given “the overlapping symptoms of post-traumatic stress disorder and mefloquine toxicity, it can be challenging to distinguish between the two diagnoses.” The U.S. Department of Veterans Affairs (VA) has recently awarded several disability claims to veterans for permanent neuropsychiatric conditions, including anxiety and insomnia, that it has concluded were due to exposure to mefloquine while serving in the military [4]. Independent research concludes that “mefloquine has been proven to be highly neurotoxic,” and that tafenoquine is even more neurotoxic than mefloquine [5].
About The Quinism Foundation
The Quinism Foundation promotes and supports education and research on quinism. Founded in January 2018, The Quinism Foundation is supported by private donations and is advised by an international committee chaired by Mr. Andrew Bryce, of Dublin, Ireland. The Foundation’s board of directors includes retired Navy Commander William Manofsky and retired Army Lieutenant Colonel Gregory Alderete.
Dr. Nevin, executive director, is a board-certified preventive medicine physician and former U.S. Army medical officer and epidemiologist. He is author of more than 30 scientific publications on malaria and the quinoline antimalarials, including “Mefloquine and Posttraumatic Stress Disorder,” published in the U.S. Army’s Textbook of Military Medicine series (see: http://www.cs.amedd.army.mil/FileDownloadpublic.aspx?docid=59eea54e-292d-4a35-9117-d9be6c40dac3).
Tickell-Painter M, Maayan N, Saunders R, et al. Mefloquine for preventing malaria during travel to endemic areas. The Cochrane Database of Systematic Reviews. 2017;10(10):CD006491.
2. Ringqvist Å, Bech P, Glenthøj B, et al. Acute and long-term psychiatric side effects of mefloquine: A follow-up on Danish adverse event reports. Travel Medicine and Infectious Disease. 2015;13(1):80-88.
3. Livezey J, Oliver T, Cantilena L. Prolonged Neuropsychiatric Symptoms in a Military Service Member Exposed to Mefloquine. Drug Safety Case Reports. 2016;3(1):7.
4. Nevin RL, Ritchie EC. FDA Black Box, VA Red Ink? A Successful Service-Connected Disability Claim for Chronic Neuropsychiatric Adverse Effects From Mefloquine. Federal Practitioner. 2016;33(10):20-24.
5. Agboruche RL. 529.3 In-Vitro Toxicity Assessment of Antimalarial Drug Toxicity on Cultured Embryonic Rat Neurons, Macrophage (RAW 264.7), and Kidney Cells
The MoD had taken the advice from Public Health England, which includes a panel of scientists who have “looked at all the evidence and think that the drug is the right course. It would be foolish to go against scientific evidence.”
Defence ministries in Germany, the Netherlands, Denmark, and Canada have either banned the use of Lariam, or use it as a last resort, according to Lt-Col Croft. “The French military, although with a large presence in the tropics, has deliberately and sensibly never used the drug, for malaria prophylaxis.”
He described the MoD’s continuing use of the drug as “reckless, and shows a callous disregard for the safety and welfare of its personnel”.
http://www.independent.co.uk/life-style/health-and-families/health-news/lariam-hundreds-of-british-soldiers-suffering-from-mental-illness-after-being-given-anti-malarial-10179792.html
In a statement, Air Marshall Paul Evans, the MoD’s Surgeon General, said: “I want to emphasise that mefloquine is a drug that is licensed in the UK by the Medicines and Health Products Regulatory Agency. This is based on the expert guidance of the Advisory Committee for Malaria Prevention of Public Health England.” He added:
“The MoD will continue to follow the best advice as provided by Public Health England.”
http://www.independent.co.uk/news/uk/home-news/the-lariam-scandal-former-head-of-army-calls-
for-ban-on-malaria-drug-8845172.html
Mefloquine: strengthened warnings on neuropsychiatric side effects
A recent review of the prescribing information has led to strengthened warnings and new measures to help minimise risks. To minimise the risk of these adverse reactions, mefloquine must not be used for chemoprophylaxis in patients with active or a history of psychiatric disturbances such as depression, anxiety disorders, schizophrenia, or other psychiatric disorders. If neuropsychiatric reactions or changes to mental state occur during mefloquine chemoprophylaxis, the patient should be advised to stop taking mefloquine and seek medical advice as soon as possible so that it can be replaced by another medicine for malaria prevention
https://www.gov.uk/drug-safety-update/mefloquine-strengthened-warnings-on-neuropsychiatric-side-effects
http://www.parliament.uk/documents/commons-committees/defence/150921_Letter_SoS_Lariam.pdf
The health and wellbeing of our people is paramount, in this and all matters.
Annie,
Isn’t the recently strengthened mefloquine/lariam warning yet another conspiracy to deceive.?
As with other “warnings” in psychotropic drug information leaflets, the words are a careful construction to blame the victim of iatrogenic neuropsychiatric toxicity, and exonerate the drug, thus preserving the market (and those with financial interests in that market).
The “psychiatric” manifestations of these devastating adverse drug reactions (ADRs) compound the tragedy of misdiagnosis, and mitigate against potential recovery.
The warnings serve to indoctrinate the prescriber into a belief that the drug induced “Mental Health condition” is entirely due to a past history of, and/or vulnerability to, serious mental illness.
Would a desperately ill patient suffering from anaphylaxis following penicillin,
(perhaps even post- resuscitation after cardiac arrest) – be best cared for in a so-called “psychiatric hospital” where (in my experience) they would be “cared for” by staff who lack the basic competence to restore and maintain fluid and electrolyte balance?
Where they will be give SSRIs and antipsychotics which would be equivalent to giving more penicillin? (Enforced penicillin).
Neuropsychiatric prescription drug toxicity is NOT MENTAL INNESS. It is poisoning.
Does anyone recall seeing a severely ill, dehydrated akathisic patient with an
I-V drip relieving their toxicity and alleviating some of their suffering?
This highlights the inevitability of “collateral damage” caused by psychopharmacology.
Akathisia and other neuropsychiatric ADRs result in changes in a patients thinking, emotions and behaviour associated with distress, and problems functioning in social, work, and family activities.
However,
The American Psychiatric Association (APA) defines mental illness as: –
“Health conditions involving changes in thinking, emotions and behaviour associated with distress, and problems functioning in social, work and family activities”.
Hence: The inevitability that prescription drug, neuropsychiatric toxicities cannot be competently differentiated from real mental illness and vive-versa,
especially by prescribers who deny such adverse reactions.
Tim,
https://www.pri.org/stories/2013-07-30/fda-issues-its-strongest-warning-anti-malaria-drug-lariam
The anti-malaria drug has been used for years by the military and by international travelers. Mefloquine, sold as Lariam in the US, must now carry a “black box” warning on its label because of the drug’s serious neurological and psychiatric side effects.
Dr. Remington Nevin, a former Army epidemologist who’s done extensive research on the drug’s side-effects—including depression, anxiety, nightmares, paranoia, delusions and hallucinations—helped persuade the FDA to issue the warning.
“Mefloquine belongs to a class of drugs known to be neurotoxic which is associated with permanent brain injury,” he says. “It remains licensed for use, but I think the latest warnings by the FDA will spell the demise of mefloquine among most travelers.”
Why do you say SSRIs exacerbate the problem? My experience is they work somewhat. When I stop taking them symptoms come back worse but when I’m them I feel pretty good all things considered
Dan Olmsted, our late editor in chief at Age of Autism, investigated mefloquine before he bacame involved with the vaccine controversy, and he returned to it from time to time in our columns.
http://www.ageofautism.com/2009/04/drugs-death-and-the-manufacture-of-doubt.html
http://www.ageofautism.com/2013/01/weekly-wrap-up-suicide-mayhem-prescription-drugs.html
http://www.ageofautism.com/2012/03/huffpo-.html
http://www.ageofautism.com/2012/04/the-kill-pill-malaria-mefloquine-and-the-armys-nightmare-drug.html
http://www.ageofautism.com/2013/06/melfloquine-madness-military-massacre-bales.html
http://www.ageofautism.com/2013/07/army-ducks-document-points-to-malaria-drug-afghan-massacre.html
http://www.ageofautism.com/2016/08/weekly-wrap.html
Mind you, I recall as a child moderate going off one’s head type feelings – temporary – from drinking Bitter Lemon, which I think contained quinine. Don’t know whether this was related.
Article in Thebmj describes ‘Outrage in Italy when Biology conference sparks criticism for including anti vaccine speakers’
Maybe this should be included in the ‘fascism’ blog Only One response so far from the peerless J K Anand .
They posted one from me after a 24 hour delay – basically they are labelling Yehuda Schoenfeld and Luc Montagnier “anti-vaccine” in order to disqualify them from speaking before they have opened their mouths. Neither of these men will ever have subscribed to any ideology (unlike the people doing the labelling), they will have just asked difficult questions, of the sort that should be asked with any medical product.
http://www.bmj.com/content/360/bmj.k711/rapid-responses
What are the contents of the nightmares for people who have quinism induced symptoms? For veterans are they about traumatic events or are nightmares unrelated to trauma they have experienced?
Hi Katie, I’m coming in late but I want to answer your question from my own personal experience.
I had to take Mefloquine for 7 months on a deployment to Afghanistan. My nightmares started immediately and carried on for about a year afterwards. They could range from absolute bizzar events to incredibly vivid experiences from my life. They weren’t of things I’d experienced in combat or during the deployment. The one thing constant was that it was as if I never even slept. My body would be rested but my mind wasn’t. Even 16 years later I still have some signs of PTSD but medical proffesionals have not diagnosed me with it.
I hope that helps.
Both!
So frighteningly real too, caused hypervigilance, paranoia etc have been proscribed antimalarials before in the military but never the same horrendous life threating, symptomatic reaction!
“In My Own Words”
Lariam Sufferers Describe Their Experiences
http://www.lariaminfo.org/personal-experiences/
“Violent dreams … every few nights … My friends … were having similar dreams and they’d say, ‘I had another mefloquine dream last night.’”
Lariam: The ‘health tragedy’ and the soldiers who pay
http://www.aljazeera.com/indepth/features/2016/09/lariam-health-tragedy-soldiers-pay-160911111234424.html
Mefloquine (Lariam®) Information for Military Service Members and Their Families
http://www.lariaminfo.org/pdfs/MefloquineMilitaryFamilies.pdf
http://www.lariaminfo.org/military/
“I watched a TV program [on] Lariam … The symptoms and stories … mirrored my own. I am a combat veteran who has been going to counselors, psychiatrists and psychologists since 1996 … diagnosed with PTSD…. I know there is more to my story than just PTSD. I believe I have some serious psychiatric problems due to Lariam and not only due to combat.”
https://www.gov.uk/government/publications/mefloquine-advice-service-for-former-and-serving-personnel/mefloquine-advice-service-for-former-and-serving-personnel
Mefloquine information signposting service for former and serving personnel
Updated 10 October 2017
This is such a great question Katie B-T, doesn’t it remind you of the SSRI debate whereby the MHRA and PHE are the soapbox for all and the crippled and harmed are barely listened
There is a ton of information from the Lariamers and there is a ton of information from the promoters and it all needs dissecting and the Quinism Foundation is a Great Start ..
Dr Annette Fea, psychologist in New Zealand, has done a tremendous amount of in depth work on Lariam and also RoAccutane isotretinoin, both made by Hoffman la ROCHE. We wrote up her entire recent Report on the RxISK blog under ‘ROCHE and the Perfect Circle’ one of the two posts about the tragic and horrendous death of our son Olly, and back in 2016 we had a meeting with Adam Clarke, a survivor of Lariam damage who was interviewed on BBC TV at aound that time, along with war veterans, whose minds have been very adversely affected by it. In Adam’s case, he was a young student about to travel to Africa as I recall, only took the pills for a very short period, but has sustained life changing damage.
We also got in touch with Johnny Mercer, (Con) MP who at that time raised the worry about Lariam in the House of Commons. Recently we understood (from info shared on Facebook by Stephanie Lynch) that Lariam had been banned in Ireland.
If you read Dr Annette Fea’s Report you can see that ROCHE’s two drugs, Lariam and RoAccutane isotretinoin, have such similar effects on nervous systems, that one feels there must be co factors, and we really need to hold ROCHE to account on this. we are not holding our breathe however, they seem to live a charmed life, in cahoots with the toothless MHRA and have been doing so for over 30 years, whilst Government reports and enquiries come and go, like the tide flowing in and out. And the deaths and the damage goes on.
I write this on what would have been the 38th birthday of our beloved son Olly. One amongst so many whose beautful and potential-filled lives were lost, after severe mental and neurological torture inflicted by RoAccutane. We are relieved that he is out of pain, but the needless suffering that he and we endured for 11 desperate years, must one day be atoned for by the dangerous playboys in ROCHE and other big Pharma, who seem able to get away so far, literally, with murder. His story and that of others, and information on Lariam too, can be found on his Facebook page ‘Olly’s Friendship Foundation’. Please join us in solidarity if it strikes a chord with you. Our group of parents in unison go on fighting for justice for our wonderful children, we owe it to them and always will. Heather & David Roberts, 18th February 2018.
Other effects of mefloquine ??? I took it for some 6 weeks in 1996 and was advised to suspend the course of treatment as I had palpitations / tachycardia for a day or two every time I took one. I have had hypertension ever since though my BP had been very normal until then !!! I never see that side effect reported! I was not on any other medication at the time, nor before. I have always been very healthy and I lead a healthy life….!!!!
Not exactly fodder for this discussion but very closely related is the upcoming EMA’s PRAC Public Hearing into the persistent and possibly permanently disabling side effects into quinolone and fluoroquinolone antibiotics.
The PRAC have been reviewing this topic since last February and our group – Quinolone Toxicty Support UK – submitted a 40 page report along with 40 stories of our group members titled “This Iatrogenic Hell” (a quote from one member who sadly died just before the review started).
Some Fluoroquinolones have very similar effects to Mefloquine/Lariam while others are more physical effects and less CNS. Or it depends on the person and not the particular version of the drug. Either way, the addition of fluorine to the Quin molecule makes it penetrate the tissues more deeply – ‘all the better to flox you with’.
This Public Hearing will be only the second one ever to be held by the EMA so is still very much a ‘showcase item’. Anyone who is interested can find details via this page:http://www.ema.europa.eu/ema/index.jsp?curl=pages/news_and_events/news/2018/04/news_detail_002936.jsp&mid=WC0b01ac058004d5c1
It IS concerned with the antibiotics but, if there are any medical professionals out there who would be willing to take part (in person or by teleconference link) I’d be delighted to hear from them. Closing date for applications to speak is 30th April but written submissions will be accepted after that date. Ask for more info.
People will wake up and smell the roses when other people chose to use the drug in off-label manner that can lead to pandemonium.
Epidemiological numbers from the military are hard to ignore when compared to random travelers, but perhaps then the question may be, what is the military choosing to use instead nowadays?
Whoa. This is quite alarming to read about. I took larium for two years straight. My life has certainly changed since then. I’m now trying to find someone to talk to to see if there is anything I can do about it.
Me too, misdiagnosed with PTSD due to a psychotic episode whilst serving in the military then quickly discharged for a “Depressive Episode that they claimed may reoccur”!
Perfectly healthy fully functioning soldier before, never been the same again!
Have there been any break through therapies or interventions to treat the lasting neuropsychiatric symptoms of Mefloquine Toxicity? It’s been 18 months since receiving one prophylactic dose and the adverse symptoms are still significant.
Thank you for your help. Any insight would be greatly appreciated.
My 26 year old grandson has Autism. In the early 90s, his parents travelled to South Africa when his mother was pregnant in her 3rd month. As Malaria prevention, she had to take Lariam – I think 2 or 4 weeks before, then during her stay in South Africa, and continued 2 or 4 weeks after travel. I strongly suspect that Lariam is the cause of my handsome grandson’s Autism!
I understand there is no cure. But is there any type of treatment available to those suffering from non violent anxiety who become argumentative with people they interact with causing possible law enforcement intervention or harassment charges.
Urgently Looking for any Type of treatment or ongoing study for my 31 year old son who too mefloquine in the Peacecorp in Botswana 2017-2019. Please email me at 1983A411@gmail.com