- SOUND is a support group for people who developed Narcolepsy as a result of the 2009/10 H1N1 Swine Flu vaccine, Pandemrix.
- It's run by a very small team of volunteers who's family have been impacted.
- What is Narcolepsy?
- Narcolepsy comes in two forms, Type 1 with Cataplexy, and Type 2 without Cataplexy.
- Cataplexy is a muscle tone weakness that is usually triggered by emotion.
- Other common symptoms of Narcolepsy include...
- Excessive Daytime Sleepiness
- Very disturbed nighttime sleep, with vivid dreams know as hypnapompic and hypnagogic hallucinations
- Sleep Paralysis
- Automatic Behaviour
On Today FM - The Last Word: Dr. Eleanor Galvin and Tom Matthews talk about Narcolepsy and the damage done by Pandemrix. "I suppose a little bit rushed to market... Not enough time to test it properly."
Shannonside Radio's - Lets Talk, with MaryClaire Grealy. Tom explains "We'd like to see an outcome where the State accepts responsibility"
Jenna was only 2 years old when she was given Pandemrix. Her father, Mark, tells Fran Curry about how she developed Narcolepsy. Please WATCH as well as listen to this show, particularly at 6 minutes 45 seconds. We need accountability and action from the Irish State.
There is some important information about tests by the CDC in the USA. Pandemrix was NOT used in the USA. The CDC confirmed that the H1N1 vaccines that were used in the USA in 2009/10 did not trigger narcolepsy.
In today's Mail on Sunday Magazine a fantastic young man tells his story about how Pandemrix caused Narcolepsy and changed his live.
Take a few minutes to read this well written piece from Clare Daly please, then share it.
claredaly.ie/latest-pandemrix-revelations-we-need-answers-from-government-and-justice-for-narcole...
Latest Pandemrix revelations – We need answers from Government, and justice for narcolepsy sufferers
claredaly.ie
The revelation this week that some individuals received not one, but two, doses of controversial swine flu drug Pandemrix In 2011, is genuinely staggering! Some of these people went on to develop narcolepsy, an horrific incurable condition which results in sufferers falling asleep without warning, w...
Dear Mrs. Sullivan, Thank you for your emails of the 10th and 15th April 2014. Your comments are noted and we will add this updated information to the existing record of your son’s condition. As you have stated nervous system disorders such as encephalomyelitis are a known side effect associated with Pandemrix. Details of such effects are included in the approved product information (Summary of Product Characteristics (SmPC) section 4.8) for Pandemrix, previously provided and publically available, so as such will be known to relevant HSE personnel. Kindest regards, Emma Emma Mooney BSc. MSc. Scientific Officer - Pharmacovigilance Human Products Monitoring Department Irish Medicines Board | Bord Leigheasra na hÉireann Kevin O'Malley House, Earlsfort Centre, Earlsfort Terrace, Dublin 2. Tel: +353 1 676 4971 Fax: +353 1 676 2517
Copied and pasted from an email last year. QUESTION NO: 636 DÁIL QUESTION addressed to the Minister for Health (Dr. James Reilly) by Deputy Caoimhghín Ó Caoláin for WRITTEN ANSWER on 21/01/2014 * To ask the Minister for Health if he will provide the list of all side effects of the swineflu vaccine Pandemrix reported to the Health Service Executive since 2010, both including and excluding Narcolepsy; the numbers of reported incidents of these side effects also including and excluding Narcolepsy; and if he will make a statement on the matter. Caoimhghín Ó Caoláin T.D. REPLY. The competent authority for licensing and safety of all medicines, including vaccines licensed in Ireland is the Irish Medicines Board (IMB). From 2010 to date, the IMB has received 783 reports of suspected adverse reactions to Pandemrix, the majority of which are consistent with the known effects of the vaccine as described in the product information (product information for all authorised products is publically accessible via the IMB website). The most frequently reported reactions included the following : 754 - Nervous system disorders including dizziness, headache, fainting, and drowsiness; 485 - General disorders including fatigue, injection site reactions, temperature changes and weakness; 259 - Gastrointestinal disorders including nausea, vomiting, diarrhoea and abdominal pain; 127 - Skin and hypersensitivity disorders including rash and allergic type effects; 121 - Musculoskeletal disorders including muscle pain and muscle weakness. Many of the reports describe a number of reactions, so the number of reactions exceeds the number of reports. To date, the IMB has received reports of 49 cases with clinical information confirming a diagnosis of narcolepsy in relation to individuals vaccinated with Pandemrix. However the IMB is awaiting information on further possible cases where clinical investigations are ongoing and is actively following up to obtain this information. Overall updates on national adverse reaction reporting experience are shared with relevant HSE groups, including the Health Protection Surveillance Centre, the National Immunisation Office and with representatives of the Department of Health through the National Immunisation Advisory Committee (NIAC), at which all of the relevant groups are represented. Reply, Reply all or Forward
In today's Irish Independent on Saturday: "The State has a duty of care". Simon Harris TD: Accountability needed in An Roinn Sláinte! Are they even telling YOU the truth?
www.independent.ie/irish-news/health/narcolepsy-drug-firm-got-indemnity-and-government-refuses-to...
Why after 5 days coverage in the Irish Independent is our Taoiseach and Health minister still refusing to address the latest scandal in our health system. 😡😡
SOUND members talking to Della Kilroy about Pandemrix and Narcolepsy on RTE Radio 1 Drivetime, 9th August 2018. Simon Harris TD, were you listening? Turn the SOUND on if not!
In today's Independent: Clare Daly and Marc Macsharry urge the Government to "do the right thing" for the people developed Narcolepsy after being given Pandemrix.
www.independent.ie/irish-news/its-been-an-extremely-tough-eight-years-for-ben-waiting-for-help-fa...
www.independent.ie/irish-news/health/government-urged-to-do-the-right-thing-for-sleep-disorder-su...
Keep up the great work all. Lovely photo of the Blackwell family
Great stuff.
We all know at this stage - they will do absolutely nothing, and they will continue to bury their head in the sand, pretending this doesn't exist, and they will continue to push the vaccines! They will not acknowledge The Encephalomyelitis that occured as a result of this vaccine which triggered the sleep disorders, - Narcolepsy, Sleep Apnea, the immune dysfunction, the tachycardia and more. All LISTED side effects that they were aware of!
I am sure you will get to meet him and his lovely family at one of our annual events Naomi. You honestly couldn't meet a nicer family. X
well done all and best wishes to Ben xxx
Well done and thank you Blackwells for doing this. 👍
Best Wishes to you all..
Well done 😊
In today's Independent: re-issued Pandemrix vaccine is 'lost'. Also revealed: In 2009 the Irish Medicines Board raised concerns about the lack of testing.
Absolutely disgraceful... three days in a row articles relating to pandemrix and narcolepsy and the HSE and government have remained silent on the issue. Its time for them to step up and start answering the questions being asked.... 😡
Typical Irish Government!! Rush through a quick fix solution, give the big drug company full indemnity without testing!!! Then when it backfires the people who are suffering have to wait years for answers and help because the Government has to set up committees and investigations while drug company walks away with €80million!!!😡😡😡😡
Probably getting advice from the British government on how to screw the victims.
British government did the same thing.
😡
In today's Independent, they reveal memos sent to GPs in January 2011 instructing them to re-use Pandemrix if they had limited stocks of the seasonal vaccine.
I am still living with the effects of this vaccine 😔 can anyone tell me has anyone recovered fully from it and if so what did they do/who did they go to? Any advice would be deeply appreciated as I feel Iv tried so much over the years and still not recovered only improved from my worst years ? 😔 On a positive note I am feeling hopeful that there is finally some acknowledgment instead of being ridiculed and disbelieved that this vaccine had such severe adverse effects
It is horrible, especially in the light of the fact that they kept denying the existence of all the side effects listed, that they were fully aware of, but refused to disclose. Then picking and choosing what they would acknowledge, and refusing help to families effected! How many lives destroyed, how many dreams dashed because of this. How many will not reach their 60s, 70s, and get to live a full life. Encephalomyelitis - brain inflammation caused by this vaccine, triggering sleep disorders, immune dysfunction, tachycardia and more! How many have gone to their grave, because the HSE/Medical system told them they were pyschological.
Absolute scandal that a vaccine could be reissued knowing it had previously "triggered" narcolepsy in many children.....
And that’s just the flu vaccine 😱 wait until everyone knows about the others
Shocking! What happened to the oath, first do no harm?
Hippocritical Oath is the correct name now. Doctors are destroying lives in their greed. Accountability is needed and prison time for these people including HSE and empty head politicians
Thats shocking .
Rob Davy
João Regazzi Gerk Eduardo Gerk Maria Carolina Ulm
Link to the article in today’s Independent re HSE using Pandemrix in place of the flu vaccine in 2012.
Revealed: Children got double dose of 'narcolepsy' jab
independent.ie
A NUMBER of children received a double dose of the controversial swine flu vaccine, which is now at the centre of a global controversy over the sleep disorder narcolepsy, the Irish Inde
Love to know if anyother children got other reactions from the two swine flu injections,as my son got acute dissemination enecphalomyelitis ,ADEM.he was 3 goin on 4
Rob Davy
In today's Independent, they reveal more about the Pandemrix Narcolepsy scandal, including the fact that the vaccine was re-issued to GPs in 2011 from stock as a backup for the seasonal flu vaccine. This happened even though it was under investigation for causing Narcolepsy. As a result, some people ended up getting TWO doses of Pandemrix, and developed Narcolepsy after the second dose.
At the very least these people should be getting free medical care. It’s ridiculous that a vaccine practically forced on the nations children in 2009 has destroyed their lives and they have to pay for the meds to keep it at bay.
They'll get off Scotty free. They always do. The little guy never gets justice against big drug companies. The system is rigged in their favour.
Absolutely disgusting ... using people as guinea pigs and damaging them beyond repair ... so infuriating
Mark Houghton
A great video about Narcolepsy from Narcolepsie Vereniging Nederland. Hartelijk dank NVN: Nederlandse Vereniging voor Narcolepsie!
youtu.be/tDR3n_48oQAyoutube.com
Aisling McLoughlin on Kerry FM talking about Narcolepsy.http://www.radiokerry.ie/narcolepsy/
radiokerry.ie
Aisling McLoughlin from Tralee is 18 and is one of 87 people who now have narcolepsy as a result of getting the Swine Flu vaccine as a child. Deirdre spoke to her earlier.