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Is there any connection with Covid 19 vaccines and CJD?

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Please see below answers to this now often asked question by prion disease experts:

Ryan Maddox from the US CDC commented on whether there is connection with Covid 19 vaccines and CJD in one of his talks. Thank you to our friends at the CJD Foundation US for sharing this link- Is there any relation between covid 19 vaccine and cjd?

Professor Richard Knight from Edinburgh UK:

“For many people with a loved one diagnosed with suspected CJD it is an emotional time and they are vulnerable. They will be coming for support and any information needs to be accurate. My comments on the particular subject are:

1. I do not know of any evidence that there has been a significant in common increase in CJD numbers since Covid vaccinations began. There are two caveats to that comment. Firstly, there has been a slight, gradual increase in CJD numbers in many countries over the last 20+ years. This is most likely due to better awareness, diagnosis and better recognition of atypical cases. It may well, therefore, be that a slight increase in numbers will be seen in some countries after Covid- but, if this occurs, this will almost certainly just be a continuation of the slight increasing trend that was observed before Covid. Secondly, if there were an increase in cases noted over a short period of time, this might not mean there is a real increase in case numbers-one sees fluctuations in numbers (as one would expect with a relatively rare illness) that need to be averaged out over longer periods. For example, in the U.K., in a particular year, there might be a greater number of cases than usual but then the next year, a lower number than usual. One needs to look at figures over longer periods than a few months or even over just one or two years.

2. One important point is that individuals often look to life events to try to make sense of what has happened to them or their relatives/friends. If something has happened just before becoming ill, there is a strong pull to wonder if that was the cause or precipitant. This is a feature of many illnesses, not just CJD. One needs to look at data over many cases over time to determine if a particular factor might be relevant. Even then, it can be very difficult to decide if a factor is relevant. For example, when we had BSE-related in the U.K., we had illness in some who had occupational connections with cattle and the question was whether this could be the cause of their illness. However, in order to determine this, one needed to know what percentage of the population in general had such occupational connections and then whether illness was affecting a higher proportion of people with such occupations than one would expect by chance. The difficulty with Covid vaccinations is that -at least in the U.K.-around 90% or so of the age group in which sCJD typically occurs have been vaccinated and vaccinated quite recently. Therefore, virtually all sCJD cases presenting now will have had a Covid vaccination in that last few months or so.

3. CJD Surveillance systems are active in most countries and are very interested in finding the cause of sCJD. If, by any chance, Covid vaccinations are relevant, this will be identified and there is no reason why this would be kept secret- indeed, I don’t see how it could ever be kept secret, given the involvement of many clinicians and scientists in many countries who have devoted their professional lives to this subject.

4. Very importantly, if a cause or precipitating factor is suggested, quite aside from the observation, by surveillance systems, of cases to see whether in fact it is, one can make judgements on whether the proposed cause is likely to be relevant. The point here is that there is no good theoretical reason why Covid vaccinations would cause CJD. It is conceivable that such vaccinations might accelerate a pre-existing CJD disease process (note: conceivable ie a possible idea) but, if so, this would be true for many other vaccinations such as seasonal flu vaccines. There is no good evidence that vaccinations in the past have had an effect on CJD. Of course, if a vaccination accelerated a pre-existing CJD disease process, then the person already had CJD and would become ill anyway after a time. And, if this vaccination process was relevant In accelerating illness, then the actual illness would also likely be relevant in accelerating disease. So, given the very much greater risk of Covid, the only sensible move is to be vaccinated. At this point, I should emphasise that there is actually NO good evidence that Covid vaccines have in fact accelerated pre-existing CJD disease. I am just allowing for that possibility as it impossible to exclude it as an unlikely theoretical consideration and we should be as complete and honest as possible in our responses. And that is not the same as saying Covid vaccination causes CJD or increases the numbers of cases, which would occur at just the same rate as without Covid vaccination.”

CJDSGN Zoom Meeting 28/08/21

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You are invited to attend a CJD Support Group Network (CJDSGN) Zoom meeting.

  • Date:  Saturday 28th August 2021
  • Time:  2:30pm- 4:30pm (AEST)
  • Please email to register your interest.
  • Attendees will receive the login link by Monday 23rd August 2021

Hosted by:  Suzanne Solvyns and David Ralston representing the Committee of the CJD Support Group Network.

Guest Speakers: Dr Christiane Stehmann and Dr Matteo Senesi – Australian National CJD Registry (ANCJDR).  ‘An update on surveillance, research and improvements to diagnostic tests in particular RT-QuIC’.

There will be time allocated for Questions and Answers during the second half of the meeting. If you have specific questions you can email and register your question ahead of time so that we can ensure that you do get answers to any questions.

Survey – genetic testing for prion diseases

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Here is your chance to help towards a treatment or cure for prion disease. Ionis Pharmaceuticals, a company based in Carlsbad, California US that develops antisense drugs targeting the RNA. In the past, Ionis has successfully developed antisense drugs that treat diseases such as Spinal Muscular Atrophy and TTR Amyloidosis. they are working on doing the same for prion disease.

They are currently undertaking a survey on genetic testing for prion diseases (PRNP testing) and we ask anyone from a genetic prion disease family or anyone who has undergone or considered genetic testing for prion disease to please complete the survey provided in the link below.  

Your help would be very much appreciated.

Published paper on identifying potential blood-based biomarkers for CJD

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From Professor Andrew Hill, La Trobe University, Melbourne:

We are proud to share this paper published today from our groups in Melbourne (and collaboration with Inga Zerr in Germany) on identifying potential blood-based biomarkers for CJD. We greatly appreciate the support of the CJDSGN Memorial Awards in memory of Lorraine Seabrook, Adrian Chesterton, Norma Crawley, and Danilo Banzon which helped fund this work. The paper is freely available below.

Distribution of microRNA profiles in pre-clinical and clinical forms of murine and human prion disease

Studies Show Pomegranate Supplement Slows Neurodegenerative Diseases

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Article link- Studies Show Pomegranate Supplement Slows Neurodegenerative Diseases

Publication (pdf)- Delay of gCJD aggravation in sick TgMHu2ME199K mice by combining NPC transplantation and Nano-PSO administration    by Kati Frida, Orli Binyamina, Areen Usmana, Ruth Gabizona, Department of Neurology, The Agnes Ginges Center for Human Neurogenetics, Hadassah University Hospital, Jerusalem, Israel b Medical School, The Hebrew University, Jerusalem, Israel

Information provided by Professor Ruth Gabizon from Israel and studies into Pomegranate Seed Oil (PSO) marketed as Granagard.

LAY SUMMARY  of the publication:

Granagard is a nano formulation of PSO (pomegranate seed oil). PSO comprises 80-90% of Punicic Acid (omega 5) which is the strongest natural lipid antioxidant. In vivo, Punicic acid metabolizes into a specific form of conjugated linoleic acid (CLA), which is known to be a calpain inhibitor, suggested as a treatment target for several neurodegenerative conditions. While the active components, both PSO and CLA, do not enter the brain following administration of PSO and actually also CLA, following administration of the Granagard formulation, CLA is found in the brain of rodents, concomitantly with its neuroprotective effect that cannot be found when natural PSO was administrated. Most of our prion related experiments were done in a genetic model of E200K CJD. These mice are born heathy, then start to show neurological disabilities at 5-6 month of age and from there deteriorate until a terminal state at about 12 months of age. They mimic the situation of healthy carriers since they present spontaneous disease caused by a mutant PrP. Continuous Granagard administration from birth or 3 months of age delays the presentation of terminal disease in these mice by almost 6 months. The mechanism of activity of Granagard is most probably related to the maintenance of normal mitochondrial activity even under the stress caused by abnormal protein aggregates, thereby allowing neuronal survival under disease. This is applicable to a number of neurodegenerative disease diseases as well as normal aging.

Several human studies are in process (Alzheimer’s disease (AD) ,Parkinson’s disease (PD). Preliminary results in a double-blind study shows that administration of Granagard as compared to placebo improves memory and cognition in MS patients under diverse treatments. As for CJD, we are mostly interested in delay/prevention in asymptomatic carriers of pathological PrP mutations. It is indeed very difficult to establish a proper clinical study to establish if carriers taking Granagard will get sick later or never as compared to those taking placebo. Nobody wants to be in the placebo group for years and most people don’t want to get tested for the mutation. Therefore, we are looking at this in a different manner. Since Granagard is a safe food supplement beneficial to the general public, we follow a large group of genetic families in Israel in which all/most the siblings in affected families are taking it. Then we look, with the help of the medical community in Israel, at the new CJD patients. We believe 30-50% of CJD affected families are taking Granagard regularly.

We have learned so far that
1: No symptomatic CJD patient has taken Granagard prior to diagnosis.
2: The general number of genetic CJD patients, which was around 20 per year for several years until 2017, has gone down to less than 10 in 2018/2019 and may be as low in 2020.

Obviously, this is all observational and more time is needed to establish if we had affected disease onset, but it looks very encouraging.