Cause of MND

[Michael Nicholas]

Probably just like me every MND sufferer has wondered about the cause of the disease in them.
The listing of potential causes on this website does not include infection of HSV-1, the herpes simplex virus which typically causes blisters around the lips. However, this virus, which is thought to be present in 70% of the world population, is increasingly linked to other diseases.
I have suffered from cold sores since a very early age. Since being diagnosed with MND last year I have wondered if there might be a link to the virus.
A piece of research I read, which is two or three years old, suggests it is the body’s immune system response rather than the virus that might be damaging cells and causing a range of diseases.
So, my question is has there been any study to establish if there any MND sufferers who do NOT have the herpes simplex 1 virus? It would be informative to know the extent of infection.

[shelly21]

Good question. But that would make it an immune condition wouldn't it? It is the same re Lyme disease. I tested positive on blood tests but yet not infected if that makes sense.

There are so many theories. I know they put ex forces up there of which i am one. Footballers especially Italian are also high. They say toxins and also metabolism can play a part.
the list is long but like you i did read so much re a cause.

I had nerve damage in my neck after an injury. i can't help thinking that injury especially to the head damages nerves and hence breaks a circuit.

[Michael Nicholas]

@shell1 - I omitted to say that research around the world is revealing that HSV1 is potentially linked to various neurological diseases (eg MS).
Incidentally, I suffered head injury and concussion after falling from my mountain bike in 2018,

[shelly21]

Michael Nicholas it certainly a possibility then. I know the 2 trial drugs on smart are both existing parkinson medication.

There was a press release from the university of Edinburgh in January that explains how the research for a cause is going and that now they want trial medication thats Already in existence.

It blows my very small mind how complex our bodies are.

[MNDConnect]

Dear Michael Nicholas,

Thank you for your forum post regarding the cause of MND.

We have passed on your query to our Research team, as soon as we receive a response from them, we will let you know. It may be worth knowing that due to the high number of enquiries received by the Research team, it may take slightly longer than usual to receive a response from them. Alternatively, if you would like to contact them directly, they are available via email at [email protected]

I do hope this is okay.

With kindest regards,
Prachi
MND Connect Adviser

[MNDConnect]

Following on from my previous post, we have received the below response from our Research team:

We have not been able to find any studies that look to establish if people with MND have or don’t have the herpes simplex 1 virus. However, there are some studies looking into the impact of the HSV-1 virus on neurological conditions, including MND. However, further research is still needed in this area. Given below are some of the recently published papers for further information:

https://www.frontiersin.org/articles/10.3389/fncel.2019.00046/full

https://www.nature.com/articles/s41467-021-25642-z

https://www.insideprecisionmedicine.com/topics/precision-medicine-topic/virology/more-evidence-found-of-connection-between-hsv-1-and-neurodegenerative-diseases/

I do hope this is helpful. If you have any further queries or if you would like any further information, then please do let us know.

With kindest regards,
Prachi
MND Connect Adviser

[Michael Nicholas]

MNDConnect Thanks for the links. Probably 99.9999% of the papers' content goes over my head...but in the Nature one I note this: "Mutations in OPTN have been identified, implicating it in human diseases including glaucoma, amyotrophic lateral sclerosis (ALS)...".

I note you say "We have not been able to find any studies that look to establish if people with MND have or don’t have the herpes simplex 1 virus". This sounds like an unfortunate gap in knowledge about MND, and perhaps one which should be remedied ASAP. Is this something the MNDA can move forward urgently with?

[MNDConnect]

Michael Nicholas The MND Association does not undertake any research itself as we do not have any research facilities, we only fund researchers from other institutions. In order to fund research projects, we have to receive proposals from the researchers, therefore we can only fund something if a researcher has decided to research that area. As shown in the papers previously sent, the relationship between the HSV-1 virus and neurodegenerative conditions is being investigated, and it is expected that further work will continue in this area.

Our Research team also wrote a blog on ‘ Steps to Understanding MND ‘ in the year 2018. It is explained in the blog that there are six steps that lead to the development of MND – that is, six factors associated with MND causation. So even if the HSV-1 virus is associated with causing MND, it doesn’t mean that if you have the HSV-1 virus, you will get MND, as you would require a further five factors associated with causation. You can view the blog in further detail via this link https://mndresearch.blog/2018/08/03/...ber%20of%20ste ps%20is%20reduced%20from,mutation%2C%20three%20in% 20C9ORF72%2C%20and%20two%20in%20SOD1

If you would like to discuss this further, please feel free to contact our Research team directly at [email protected]

Thanks,
Prachi
MND Connect Adviser

[Michael Nicholas]

MNDConnect Thank you for the further info and explanation of the six steps.
I will consider contacting the research team.

[Hairbsb]

I have pondered this although I have been met with a no you have had this and not realised. I had two covid vaccines, in between it had botox and filler and then I burnt myself badly on my chest and took clindamycin and was referred to the burns unit. After finishing a week's course of clindamycin my tongue went yellow/green (not thrush as was tested) and couldn't move my tongue and speech went odd. I wonder if this was a trigger. Having looked at photos and from memory I do recall my lips looking a bit droopy after having filler in them and commenting that they weren't even. T

[Michael Nicholas]

Hairbsb Hi. So, when did you first notice MND symptoms? And can you confirm whether you suffer from cold sores?

[Hairbsb]

Michael Nicholas No I haven't had cold sores. But this is all a bit odd. I noticed in october. My a work colleague decided to tell me and my husband together in December after she stayed the night that she noticed i was slurring in august. So why not tell me then! Ill never understand people. Just a bit miffed that she didn't mention it to me first.

[Michael Nicholas]

The following is the text of an email I have sent to the research team:

"Following various posts and exchanges the MNDConnect team suggested I could contact you, the research team.
On 13 April I opened a new topic – Cause of MND – in the MND Forum in which I drew attention to the herpes simplex virus 1 (HSV1), which typically causes blisters around the lips. HSV1 is increasingly linked to other diseases including MND, and is thought to be present in up to 70% of the world population.
The MNDConnect team kindly provided links to various recent papers, which confirm that HSV1 is indeed linked to MND and other neurological diseases such as MS.
I note too that around the world there is also research into finding a treatment for HSV1.
Given this growing body of research evidence, I wanted to know if there has been any study to establishthe proportion of MND sufferers who have or do not have HSV1. It would be highly informative to know the extent of infection, and perhaps such information would inform and direct MND cure research.
The MNDConnect team said "We have not been able to find any studies that look to establish if people with MND have or don’t have the herpes simplex 1 virus". My view is that this sounds like an unfortunate gap in knowledge about MND, and perhaps one which should be remedied ASAP.
i realise that the MNDA does not undertake research, but it must have contact with those that do.
It seems to me crucial that urgent research establishes just how many MND sufferers in the UK have the virus. And maybe it should become routine for all new sufferers to be tested for HSV1.
With the UK government committed to providing £50millions for research, it is surely imperative that the funding is directed to achieve the best possible outcomes."